Living with Bob (Dysautonomia)

Thwack! Swoosh! Kapow!

2012-01-21T18:14:00.000+11:00

Damn I hate that. You're going along happily. Not feeling great, but not feeling too bad either. Then....

Down for the count. Fickle bastard that Bob is, he decided yesterday was the day to really stick the boot in. It's not particularly hot today, despite being Summer here in Australia. I haven't been out and about. I haven't even attempted to dispel the dust bunnies procreating throughout my house. Yet here I am knackered again.

The only thing I can think of as even a slight possibility, is that I pulled out my huge 500gm weights in a fit of pique and dared to lift them above my head for a nanosecond. Technically I'm still banned from exercise until I can gain some of my weight back. But as that hasn't happened since my big loss in August, I put on my stubborn, "Screw you Bob" hat, and busted out my imaginary leotard. Sadly, it appears that this is not the most helpful strategy for dealing with a chronic and spiteful disorder. Perhaps I should listen to my physio and my doctors. Perhaps Mr Grumpy is justified in calling me a 'dumbarse'. Perhaps. Or perhaps Mr Grumpy will wake up with one less eyebrow tomorrow morning. You just never know.

I've also had increasing pain in my left leg and a rather sexy limp. According to my GP who berated me, and gave me the "I'm so disappointed" look, you should see a medical professional when this happens. Who knew? Not stubborn me. How do you pick which pain is important when you are in pain every day? So now it's scans, scans and more scans. Monday I get a dose of radiation and a full day of scanning. Can't wait. I'm wondering if I should break out my cape just in case I develop any super powers on the day.

So I'll sit/lie/flop on the couch and resist the temptation to lift my head, which apparently is a great way to make the world turn a various shades of grey. I may even sit and stare at the computer screen, fingers flopped on the keyboard for 10 minutes trying to form a sentence. Lights are on but nobody's home. Well except for Bob. And his friends, nausea, weakness, headache, tachycardia, chest pain.........

Bugger it. I might just get my minions to ply me with chocolate (if you're going to feel sick no matter what you eat you might as well have something yum), scoff some pain meds and watch mindless TV.

Cheers

Michelle :)

PS. Still getting through the emails for The Dorothy Shoe Project. It's been one of those weeks, so I am rather behind. I do apologise and will get onto them soon. I've had few questions pop up. So just to clarify.

ALL the shoes will start the journey here in Melbourne, Australia and be posted out around the world to various countries.
A diary will be accompanying each pair of shoes so everyone can write about their individual day.
When the shoes have finished their various travels, they'll all come back to Australia with their corresponding diaries.
Diaries will be scanned and put on the website.
The plan is to then auction off each pair of shoes to raise funds for Dysautonomia research.

I think that covers the main questions, though as my brain has officially left the building today I may have missed some.

One of my favourites, the wonderful Etta James passed away today so I think it's only appropriate to celebrate her in my musical interlude. Although, At Last is perhaps the song she is best known for, this is my favourite.

Update and Thank You: The Dorothy Shoe Project

2012-01-10T18:37:00.000+11:00

WOW. That's the only word that comes to mind when I look at my email Inbox. When I first envisioned The Dorothy Shoe Project in the wee hours of Thursday morning I could never have imagined the level of response that has come in over the past few days.

I'm really touched by all the amazing emails I have received.

For those who have shared their stories, thank you for your trust. So much heartache and sadness, but also a resilience and strength that I hope you can recognise and be proud of. I hope participation in the project can bring some happiness and joy your way.

For those who have shared your photo plans, thank you for making me laugh and bringing a smile to my face. I'm loving all the ideas and can't wait to see them come to fruition.

For those who have shared the project with others through FB, Twitter, personal blogs, web pages, or local support groups, thank you. Seeing the Dysautonomia community come together to share the joy is truly inspiring.

For those who have offered their help and support, thank you. Your aid will make this project possible.

As I write, I have emails from approximately 100 people, from 8 different countries, interested in participating. An amazing response by any stretch of the imagination. Remember to share the project with any Dysautonomia patients you think may want to participate.

It has become apparent that the project will require a bit more than just me in my pjs organising things from my couch, so any suggestions for any businesses/organisations that may want to support the project are welcome. I am in the process of nutting out just what will be required to facilitate the project, and will hopefully have a plan organised soon.

At this stage just send your name and country to rustyhoe@thedorothyshoeproject.com so I can get an idea of numbers for planning. I am hoping to reply to everyone as soon as possible but may have to employ Thor as my PA and teach Freyja to make coffee (thanks for the idea Jane) given the current level of response. Now if only Great Danes had opposable thumbs. After a number of requests I have also added a snail mail address to the Contacts at the top of blog.

Full details of the project, and how to participate can be found HERE.

Claire over at Walking for Wisdom has written a great post Raising Awareness and bringing joy with a pair of sparkly, red shoes, about the project. While you're there check out her amazing and inspiring trip across the Camino Frances, 800km from St Jean Pied de Port in France to Santiago de Compostela in Spain.

Kristina over at Defying Gravity has also written a great post The Dorothy Shoe Project, love the song at the end. Thanks for spreading the word Kristina :)

If anyone else blogs about the project, please let me know so I can link you up.

Once again a huge Thank You to everyone.

Michelle :)

And a little Florence and The Machine for a bit of crazy, creative inspiration.

The Dorothy Shoe Project

2012-01-06T23:39:00.000+11:00

Since my last post I've had a lot of time to think about what I want to do this year. Making sweeping statements about stepping back from a focus on illness to find a balance in my life are all well and good. But what exactly does that look like and what does it mean for the year ahead? This is exactly what I was contemplating at 3am the other night. Good old insomnia gives you a lot of thinking time. Not that all the thoughts are coherent, and many may involve elaborate plans of how to dispose of Bob's body should I ever manage to take him out, and perhaps others were about hot shirtless movie stars and back rubs. However, every now and then, you have an epiphany.

When I think back about the past 6yrs the one thing that has been in short supply is happiness. Let's face it, when you are dealing with a chronic illness day in and day out, frequently just praying you can make it from the couch to the loo without a face plant, happiness is your last thought. And I'm not alone. I read the forums, the comments here on the blog, and the private emails and messages I receive, and it is clear that happiness and joy have taken a back seat to medications, doctors and compression hose for many. We are consumed by the practicalities of illness and that leaves little time to plan, or even look for, joy.

When was the last time you were silly just because you could be? When did you last say "stuff it", I don't care what anyone else thinks? When you just let go? When you laughed? A real, true, snort and tears laugh? When was the last time you were truly happy?

Sadly, for many it is clear that they would be hard pressed to answer any of these questions.

Well I say bollocks to that! We deserve to have joy. We are worth it.

So in the wee hours of Thursday morning I made a decision. This next year I am dedicating to bringing a little joy to those with Dysautonomia all around the world.

How, you may ask, am I going to do that? Well one quick look at my header should give you a clue. Dorothy Shoes. Yes, I am going to use a pair of those impractical, sparkly shoes of magic to bring joy all around the world. I don't know why I didn't think of it earlier . My tutorial on making my shoes is still one of most popular. When I offered up a pair for my 2nd blog birthday I was overwhelmed with entries. For some reason that sky high pair of red glittery shoes bring happiness to many people, and that magic needs to be shared.

So I am announcing the creation of :

The Dorothy Shoe Project©

Currently I'm looking for expressions of interest from people living with Dysautonomia world wide to become involved in The Dorothy Shoe Project. The aim of the project is to bring some joy and levity to the lives of those with Dysautonomia, whilst also raising awareness.

A pair of Dorothy Shoes will be sent to various countries including the UK and other European states, USA, Canada, Australia and NZ. Participants spend a day being creative with the shoes, taking photos and/or a short video. A diary to record your experiences and any details you want to share will also be included. After which the shoes will be sent to the next person. Photos will then be sent to a central web page and the shoes tracked at their various locations around the world. You can wear them on your feet or on your head, in a wheelchair or at the hospital, riding an elephant or a unicycle, the only limit is your imagination.

For more information see the following video.

All expressions of interest should be sent via email to Rusty.Hoe@thedorothyshoeproject.com NOT in the comments at the bottom of the page.
I am collecting numbers over the next 2 weeks to gauge interest and prepare for the logistical side of the project.
Apart from your Country and Name you don't need to send any additional information at present.
Once numbers are collected, more information will be sent out via email.
I have purchased a domain http://thedorothyshoeproject.com/ for the project which is currently being developed.
I'll put updates here on the blog, twitter #thedorothyshoeproject, FB, and once it is up and running, on the website.

FAQ

Q. Does it matter what type of Dysautonomia I have?

A. No any type. It doesn't matter if you have POTS, OI, NCS, PAF, MSA, or any other form. As long as you have a diagnosis that falls under the banner of Dysautonomia you are welcome to participate.

Q. Does it matter what sized foot I have?

A. No. The shoes will be made in a large size to accommodate as many people as possible. If you have tiny feet think of it as playing dress ups like when you were a child. If you have large fit they may fit perfectly. The shoes represent a fantasy. They represent magic and fun.

Q. I am in a wheelchair, can I still participate?

A. Yes. It doesn't matter if you are in a chair, use a walker, a cane, or are currently bed bound. The only limit is you imagination. You can wear them on your feet, or on your head. You can wear them getting your saline IV, at the gym, in a waiting room, on a unicycle, or whilst riding an elephant. Creativity is key. What is important is being silly and impractical. To embrace the pure joy of silliness. To suspend reality and just live for a little while.

Q. I am a guy, can I participate?

A. Yes. If I get expressions of interest from men I will source a pair of Blundstone boots (workmans' boots) and glitter them up. Or you are welcome to wear the heels. It's all fantasy. As I said above the only limit is your imagination.

Q. What about my privacy if I give up my address?

A. Addresses will be known by 3 people. Myself as coordinator. The person that sends you the shoes. And, the person you send the shoes onto. Photos will be identified by city, state and country and participants by first name only.

Q. What about raising awareness?

A. Part of the project is about raising awareness for Dysautonomia, although joy is the main aim. It can be as simple as using the shoes as a conversation starter. Lets face it, if you are riding the reclining bike whilst wearing a pair of bright red heels someone is going to ask you why. Or you can contact various media outlets to alert them to the project and why you are participating. Information for press releases and the like will be provided on the website once things are up and running.

Q. What about sponsorship?

A. Sponsorship would definitely make it easier for the project to go forward, as there will be costs involved. If you know of a company who may be interested in sponsoring the project please give them the contact details.

So what are you waiting for? Sign up to participate. Spread the word. The more participants the better.

Lets bring some happiness back to all our lives.

Update: Thanks everyone for the amazing response. Have participants signed up from Australia, New Zealand, Ireland, England, USA and Canada. Keep those emails coming in. Keep spreading the news. Tweet, Blog, FB, yell it over a fence. Lets bring joy to as many people with Dysautonomia involved as possible.

Update 2: Well after a busy 3 days, 80+ participants and 7 Countries involved, with the addition of a participant from Israel overnight. An amazing response, and a huge thank you to everyone who is making this possible.

Cheers

Michelle :)

Momentum

2011-12-28T18:44:00.000+11:00

I've been struggling lately. Not so much with the physical side of being ill. The day-to-day practicalities hold no mystery for me. Most of it is simply white noise now. I know I'm getting worse and as weird as it sounds, I'm pretty meh about that side of things. My recent tests just confirmed what I have known in my heart for quite a while. It's a weird place to be. I'm not happy that I'm getting worse. But I am strangely content to have it made concrete. Now, I don't have to think about it. I don't have to sit and wonder. I can check it off my list and move on, till the next time. But the overall emotional/spiritual/psychological toll is exhausting.

I can't even pinpoint what it is that is so exhausting. It's not like there has been a specific instance that stands out. It's more like the sea washing over a rock. Slowly, wave by wave, the rock is eaten away. You can't even detect the individual bites with the naked eye. But all of a sudden where there was once a great rock there is now naught but a pebble. Chronic illness is like the sea, and my reserves are very much that pebble. There is no real respite. Respite, if you get it, comes in the form of a less symptomatic day, rather than a full day of freedom. You get drawn into a cycle where your entire existence begins to revolve around illness. The search for answers, cures, meaning. You suddenly look around, and you, and your world, are defined by that which you so despise, and you don't even know how it happened.

When you say you are meh about the physical side of things people tend to bombard you with the "but you can't give up line". Mistaking acceptance for defeat. The reality is far from it. I still do what I have to do to manage both Bob, and now, Ruprecht. I take my pills, I see my doctors, I take the tests, and do the research. But I am cognisant of the fact that there are aspects that I cannot change no matter how hard I try. And part of the challenge of living with a chronic illness is to pick your battles when you have limited resources. It's about finding your priorities. And deciding what you want for your life. What those battles may look like will be different for every person. But for me I know there are things you can change and things you can't, and spending a life focused on the can't side of the ledger is slowly crushing me.

I have been fighting the good fight for nearly six years. I have a pretty good handle on where my health is presently and where it is going. Early on, focusing on my health at every opportunity served a purpose. It gained me access to a diagnosis and a doctor who understood my condition. It helped me to understand what was happening to my body and options for treatment. It helped me to find a community of people who were dealing with the same illness and provided me with a support I so desperately needed. But as time goes on needs change. Focusing on my illness every second of every day is no longer of benefit. In fact it is problematic. Practicalities aside, such focus is a thief. It steals all your time until there is no room left for life. It tells you lies and makes you believe there is nothing of you but your illness. It leaves you beyond exhausted. And I can't maintain that level of intensity any more.

My plan for this year is to find my balance once more. I am having a sabbatical, if you will, from my sick person job. I have worked long and hard at that job, 24hrs a day, 7 days a week, 52 weeks a year, for almost 6 years. I think I'm well and truly due for some long service leave. I am going to reclaim me. Because the reality is that if I don't, I'm going to burn out. The reality is that if I don't make a concerted effort to reclaim me, I'm going to waste what little energy I have. Without effort I will lose the battle for me to illness. Not because I didn't fight hard enough, but because I surrendered my life to something that doesn't even acknowledge, let alone give a crap, about the fight.

It wont be easy. Balance is hard at the best of times. When you are living with chronic illness it can can be damn near impossible. The reality is your health takes up the majority of your life. Whether it is simply the living with symptoms that require daily management, or dealing with a medical system not set up for long term or complex illness. Even when you make the decision to change, obstacles are thrown at you so fast and so frequently, sometimes all you can see are the tracer rounds. But that doesn't mean we should stop trying. It doesn't mean we should limit ourselves. Because the reality is that it is we who limit ourselves, not our illnesses.

So,

I'm going to believe there is more good than bad in the world.
I'm not going to read more journal articles.
I'm not going to surf more medical webpages.
I'm not going to spend hours on forums discussing my health.
I'm not going to think about all the things that I can't do.
I'm not going to think about all the doom and gloom that my doctors send my way.
I'm not going to play into the sick role any more.
Because I can't.
Because for me it's not healthy.
Because for me I want to be something other than the sick girl and all that entails.
I'm choosing to swim rather than drown under the weight of it all.

That's not to say that at times I wont tread those paths. But it'll be on the periphery, and it'll be for short bursts only. Because that's what balance is about. It's not about denying my illness. It's not about giving up. As trite as it sounds, it's about finding me again. It's about making a deliberate effort to find those other aspects of life that give it meaning and bring you happiness. There will be times where I'll succeed, and no doubt times where I will spectacularly fail. But I'm still going to try. Because that's all I can do.

Michelle :)

My dear friend, and fellow Dave Grohl groupie, Autumn, put up a video today that seems so appropriate, so I'm sharing it here.

The Perfect Bob Christmas Card

2011-12-23T11:47:00.002+11:00

(©www.angelapascale.com)

There wasn't going to be another pre-Christmas post but when this popped up on my FB page I couldn't not share. Great work by talented illustrator, and fellow Bobette, Angela Pascale. Check out her blog, web page, or on FB. Thanks again for the Christmas chuckle Angela. :)

Merry Christmas everyone. :)

Oh and one for those of us who are organisationally challenged.

Christmas Cake in a Hurry over at The Sit Down Cook

Merry Crafty Christmas

2011-12-18T14:05:00.000+11:00

Well it's that time of year again. Time to deck the halls and all that jazz. Not that we have halls in our weirdly set out home. I'll deck one of my three staircases, or alcovey bits. Whatever. As long as my home looks like Christmas threw up on it I'll be pretty happy.

In honour of my crafty plan to pretend I don't have a chronic illness (some use a dissociative fugue, me, I'm trying the hot glue gun of bedazzling possibilities), I have injected a dose of the homemade to our Christmas decorations this year. Mr Grumpy is stoked of course. Or at least that's what I think his resigned head shaking was trying to convey. It is amazing what you can do with a gum tree branch, some spray paint, glitter, some bamboo, greeting cards, a hot glue gun, and a dose of the crazies/fumes from overheated glue. Take that Martha!

I do hope everyone has a fabulous day filled with love, laughter and ham, glorious, glorious Christmas ham. My mouth is already salivating at the promise of that pink salty nirvana. No doubt I will once again spend my days chasing the porcine dragon with wilful abandon until there is naught but a sad stripped white bone remaining, or a ham coma ensues. There will be other culinary delights of course, but none truly compare to the Babe version of China white, wrapped lovingly in its vinegar soaked ham bag. Oh Christmas, why must you come but once a year?

On that note of insanity I bid you all a Merry Christmas and a fantastic New Year, dear readers. Thank you for all your support this past year. This little blog has grown far beyond my expectations over the past year and it's all down to you, my fantastic, gorgeous, rocking readers.

Big hugs and big love to you all.

Michelle :)

PS. Don't forget to head on over
to The Sit Down Cook
for some tasty, homemade spelt pasta.

And a little treat for those who like a touch of the macabre with their Christmas cheer.

Kiddy ER visits, do not a jolly season make.

2011-12-13T16:57:00.000+11:00

Well another fun night in an ER. What would the festive season be without sitting next to a guy who's chopped his finger off, an old guy with urinary retention, and an old lady who kept telling the ward she needed to wee at every opportunity.

Wasn't me for a change. Mind you I could have quite easily requested my own trolley and IV. Actually after this past few weeks a medically induced coma for a couple of weeks wouldn't go astray. I'm pretty sure even Mr Grumpy would go one. I wonder if you can get some sort of couples spa coma package?

No, this time it was my youngest.

Watching your 13-year-old child sobbing with excruciating chest pain is not fun. Trying to stop the panic you're feeling, from showing on your face, is damn hard. But you're Mum, and according to the brochure, that's what mum's do. So you suck it back down. Put on your calm face. Tell jokes, and rub foreheads. You exude calm and peace till the cows come home, and then some.

Arghhhhhhhhhhh.......

So off to the ER we went. Singing our own special Christmas tunes of, "you'll be fine", "almost there", "the doctors will sort you out", "try to keep breathing". Whilst simultaneously, the tune, of "Fuck, fuck, fuck, fuck, fuck" played over an over in my mind.

Big shout out to the lovely and friendly ER staff. Makes a big difference in the whole proceedings. After all the waiting and the panicking, it turns out that it is pleurisy (an inflammation between the lining of the lungs and the ribs). Wasn't my first hypothesis, or second, or even 28th. Who get's pleurisy these days? Apparently "more people than you think" according to our Dr Carl. Poor kid. It's not like he hasn't had enough of a rough trot healthwise over the past year. But given the options we'll take pleurisy, and we'll like it.

It was educational for him though. especially listening through the flimsy curtain to the nurse explaining catheterisation to the old guy in the next bed. 'Lidocaine', 'lubricant' and 'penis' are now indelibly inked into his shocked kiddy brain. The look on his face was priceless and it definitely took his mind off his own troubles. Luckily, we made it out of there before old 'Stan' had the actually procedure.

His main concern was that he was going to miss out on fishing today. Because that's what 13-year-old boys are concerned about. Health shmelth. Don't get between a boy and his fishing rod. He wasn't too happy when the good Dr Carl ruled it out. So now to stealthily find a fishing place locally, that we can take him to when the inflammation settles.

So after 4hrs of tests, worry and a few hundred new grey hairs, we got to drag our exhausted family home. I don't think my pillow has ever looked so good.

Today he's lying on the couch with a heat pad, reindeer antlers, nachos, and his ipod. I'll take that as a good sign. To see him so calm now, it makes last night seem like a bad dream.

Damn, this motherhood gig is exhausting.

Finger's crossed there'll be no more ER or doctor visits between now and Christmas, because frankly I'm over it. All of it. Time for a break please.

A totally exhausted and probably incoherent Mum.

Bondage for beginners and other fun things you learn from your friendly neighbourhood Neurologist.

2011-12-10T12:32:00.001+11:00

Lapsed blogger due to limited internet thanks to a dead router, and extra crappy health. May be intermittent at best over the next few weeks.

Once upon a time, in a land far far away, I was healthy. Once upon a time I got my fill of medicine watching ER and perving/drooling over Dr Kovac, with his hot Croatian accent. Good times. Fun times. Times to which I wish I could return. But alas, that time is passed and I now have the joy of being felt up by neurologists with whom I used to work.

(Pretty accurate depiction of autonomic testing)

Case in point this past Thursday. Back in June Uberneuro had suggested I have the autonomic testing battery yet again to see how things are progressing. Unfortunately, here in Melbourne, there is only one hospital, one clinic, and one doctor that conducts the tests. This just so happens to be a hospital where I used to locum, in a clinic where I also did a six month placement whilst training, with a neurologist whose patients I used to assess. That's not confronting at all. No. Not at all. No way, no how. Nope. *sigh* Just pass the Tequila. Now where's that bloody worm?

Where was I?

My own work/pride/need a big can of Harden Up Princess, issues aside, the autonomic battery is about as fun as an anal probe conducted by an meth addled lemur on a unicycle.

It begins 48hrs prior to even getting to the hospital when you must cease all medications. You know those ones that keep you standing, stop you vomiting, or crapping or speaking such incomprehensible garble, you need your own personal Rosetta Stone to translate. Yep, those ones. Not even a piddly little antihistamine, when you're smack bang in the middle of the pollen apocalypse. You just know it's all going to end in tears.

Then on the morning, because morning is the worst time of day for anyone with Bob, and the obvious time to do testing, you can't even cry into your Cornflakes, because you are fasting. No water, no salt, no food. And the ever fickle Melbourne decides to finally find Summer after needing the fireplace a few days before, and turns on a 32C day. If I hadn't been so completely dehydrated I would have cried a tear or two whilst I wallowed in self pity.

Poor L-Plater had to drive me. To say he was stoked at the prospect of driving his babbling, brain fogged, staggering mother to her appointment, and then to sit around in the hospital for a couple of hours, may be an understatement. Actually, I think his favourite part was when the sleazy cafe guy asked if I was his sister. The look on his horrified teenage face made the whole day worth it.

You do have to love neurologist humour. It's one step above Dad humour. You lie there thinking "Dear lord, make it stop, please make it stop". Trapped in a never ending comedy hell, where even feigning death or passing out doesn't end the torment. Given that autonomic testing involves been strapped down to a table, the logical place to go was bondage, where questions such as whether a dominatrix takes into account the effects of passive bondage on her clients' autonomic nervous systems? are posited. Yes, this is how I spent the couple of hours of testing. It's a unique approach to relaxing your patients, I'll give him that.

In between these educational S&M discussions, I learnt about living in New York, that the machine used to measure my bp and hr was named Colin and didn't like being called Colleen or Collette, that the giraffe is an abomination in the eyes of intelligent design, and the low down on who was working where these days.

I also did tests like the Q-sart (sweat test), where they put gel on your foot, leg and arm and hook you up to a battery for some fun zapping. Not overly painful, but rather annoying. My results were odd and he admitted he may never have an explanation for why they are the way they are. There were others like the good old deep breathing test where you follow a green light go up and down in 5 sec intervals, and get to feel light headed and giddy.

My favourite would have to be the Valsalva test which I apparently failed so "spectacularly" I didn't even have to do it a second time. YAY Me! For the uninitiated the Valsalva test involves blowing into a bugle thingy (yes I'm all on top of the high tech medical lingo) and maintain a pressure of 40, for 15 seconds. Pisser is that there is a leak in the device so you have to keep blowing. Bring on that anal probing lemur, because I'd rather be probed by an odd looking pigmy primate, than do the Valsalva again. Having your pulse pressure drop to a consistent zero is not all that it's cracked up to be. Who'd have thunk it? I've had low pulse pressure, 5 or 7, before, but never a big fat zero, and that my friends is mightily unpleasant. Two days later I still have chest and head pain.

So now I am forever banned from blowing up balloons, playing wind instruments, singing, and excessive laughing. Not to mention no more grunting and straining on the loo. Personally, I'm pissed about the no more 80s power ballads belted out in the car to embarrass my children and their friends. And no excessive laughing? Sheesh. What's a girl to do when her dog is surprised by his own fart? Thanks very much Dr Killjoy.

The tilt table test (is this no.4?) was equally fun, and ended early in the piece as he had all the info he needed and he couldn't see the point in torturing me any longer. He did enjoy my descriptors during the process, "blech" and "shite" are now officially in my file. All that university learning has obviously paid off. So after all that, apparently my body doesn't like being vertical. Now there's a shocker. I did have to laugh that I now meet the criteria for POTS. Although, there was the caveat "but it's not quite that simple". Like the Danoz Direct ads I have the "but wait there's more" version of POTS. YAY! Well today at least. The way my symptoms change who knows what it'll be next week. Tis nice to have a type for once, even if it is of the iffy variety and completely transient. When I asked him why I've gone from bradycardic to tachycardic he just joked that my body was "trying something new". That there is some fine doctoring, my friends.

The last part was to close your eyes and say when you felt the table was returned to the horizontal, which I passed with flying colours. Now to work out how I can use that in my every day life. You know the whole, "use your strengths to compensate for your weaknesses" theory. Human spirit level perhaps? I did have to laugh when he mentioned that one of his well endowed female patients told him she cheated, because she could feel when her boobs ended up in her armpits. Not that my miniature mammaries can do that. But hey. That really just exemplifies the whole weird and wonderful experience.

I will say he was good at the explanations. He sat down after we'd finished and went through all the graphs and results and explained each of them in detail. He told more bad jokes, plied me with water, let me lay down for a while and gave me a list of suggestions to help, all of which I already do unfortunately. Interestingly, he did say for me I need weight baring and not cardio exercise as I have lost so much muscle mass since August. Apart from the generic effects, cardio is just not going to do anything for my version of Bob.

The only new bit of information was that he thought I'd be a good candidate for monthly intravenous immunoglobulin (IVIG). Of course like most of the options for me, this is damn hard to get in Australia, even if you are fully immunocompromised you struggle to get access. And, yet again, stupidly expensive. C'est la vie.

So it's all over for another year or two. After giving him the deed to my house to pay for the privilege of being strapped down, and up, and tortured for a few hours, I managed to get home and fall into coma sleep. Now I have simply to contend with the giant ringworm welts on my body thanks to the ECG and other pads. Thankfully, Dr FB Friends has given me a load of options to help with the painful oozy itching. (Before anyone asks, there were no hypo-allergenic ones available. Given I had already been 48hrs without meds, fasted and made the trip in, I decided to suck it up and just get it over and done with, rather than repeat the prep process).

So now it's recovery time. Time to live in the Batcave or maybe drag myself out to the couch, catch up on some eps of American Horror Story (please tells me it gets scarier. Because so far its weird, but horror? Not so much), and rest up for a wee while. Must say a medication holiday does make you truly appreciate what the meds are doing for you. They really are the difference between being able to stand and semi-function and being bed bound. Side-effects be damned, they are here to stay.

Okay I'm off to find a nice corner to pass out in until the exhaustion passes.

Michelle :)

Farewell balloon blowing, singing, laughter and tuba playing, "you're history, no good for me".

International Day of People With A Disability Blog Carnival: You Got The Look

2011-12-01T14:12:00.001+11:00

This blog is part of the Blog carnival for International Day of People with a Disability, 3rd December 2011, being held over on Carly Findlay's Tune into Radio Carly. The theme this year is about changing how people think about disability.

One of the issues I find most frustrating is the public perception of what disability is, or should look like. I am one of those people who doesn't look like I'm 'disabled' in the traditional sense. Sure I walk with a cane these days. But nine times out of ten people attribute its use to an acute injury. And most, when told that it is due to a neurological condition, look shocked, embarrassed, and/or horrified.

Most who have read my blog for any time know I have beaten the old "but you don't look sick" line to death. My trusty soap box is only still standing thanks to my clever use of chewing gum, broken paper clips, the insert from an old Wonderbra, and a misspent youth watching MacGyver (I pretty much deserve an honorary mullet at this point). But the truth is I generally don't look sick, well at least not in public. Out in public I am all Heidi Klum's doppleganger. Whilst, I tend to reserve my Linda Blair/Exorcist looks for the comfort of my own home, and my long suffering family.

I do look pasty and tired, but I'm pretty sure most people attribute that to my exciting nocturnal rock star lifestyle. An underlying, progressive neurocardiogenic disorder that is slowly destroying my body, is not usually the first thing that comes to peoples' minds.

This creates problems, and apparently annoys the crap out of some people.

If you saw me on the street, you'd see a hot 38-year-old woman with kickarse thighs. You may even think, what the hell is Supermodel Heidi Klum doing browsing through the Target bargain rack at this time of day? Surely she should be off preparing for the next Victoria's Secret parade? Those angel wings wont work themselves, lady! Don't Supermodel's have a work ethic? (Or maybe not. But it's my blog and really I can be as delusional as I like).

(The resemblance is striking, no?)

What you didn't see prior to that paparazzi moment is the lengthy preparation phase required to transform from 80's horror movie icon, into hot German supermodel. Spontaneity is no longer a word for this aging/broken goddess. Thanks to my health it can be months between trips out to the shops. In fact, I only recently made it to my local shopping centre after 3mths pretty much housebound. I even managed a massive hour and half out. "Whoa!" I hear you say. "Medicare AND Target? You know how to party, girlfriend". But I digress.

Leaving the house requires a Masters in logistics and planning. I begin my preparation the day before. I shower and sometimes, even get a bit crazy and go all out, and wash my hair the day before. Energy constraints do not often allow for both an outing and personal hygiene on the same day. On the day itself, I rest. Mornings are out as this really is my Linda Blair phase, pasty, no blood pressure, legs that don't want to coordinate, peasoup expulsion. I'm pretty sure my head may do a complete 360, but the hypoperfusion makes recollections a tad sketchy. I chug extra water and salt, pop more meds than my husbands grandmother, and go to the loo about a dozen time. All going well, I make my way to the car. Alas, a last minute call to "Abort the Mission" is not that unusual.

Here is the fun part. Being upright brings on my symptoms. My body loves the horizontal like Tony Abbott loves his Speedos. But is as adverse to the vertical, as old Tony is to, well everything. So I spend my trip, feet on the dash (to prevent blood pooling), head between my knees, clutching a puke bag 'just in case'. The AC gets turned up on full even in Winter (it's fun having a body thermostat set on 'Sahara') and we drive to the shopping centre trying to ignore the ever increasing hole in the ozone layer that we trialling behind us.

Once there we sit for a while whist my body recovers. Then through the prodigious use of swearing, grunting and helpful husband, or child, I can make my way into the shopping centre. Supermodel looks firmly in place.

When I'm standing looking at the rack of bargain dresses the real work begins. You see I may look all Ms Klum to you, but the reality is that I am working like there is no tomorrow, to maintain my upright posture. There are prayers to every deity known to man, offers of virgin and kitten sacrifices, and promises of left kidneys and first born sons, if only your legs will hold you up for a few more minutes. That the puke will stay in and your blood pressure will stay stable. That you can manage your slurring words enough that the sale assistant will think you have an exotic accent, and not that you are not a frequenter of crack dens.

And after that hour of fun you stumble your way back to your car looking like the intoxicated celebrity 'It Girl' you wish you were (though I'm not up there with the whole going commando business, I prefer my lady parts fully enclosed in granny undies). If you're lucky you'll make it, or at least have a husband who has perfected the 'I'm holding my wife up so she doesn't face plant, but it really looks like we are just a loving, snuggling couple'. If you're not lucky you get to face plant, inch your way out seat by public seat, or get carried.

Then there is the post party fun to deal with. When your body punishes you for your little outing. The overwhelming exhaustion, the nausea, the shaking, the migraine, the complete body tanty. The resignation that the next day, or sometimes week, is written off for coma sleep as your body tries to repair the damage. Because my outwardly hot supermodel body, is broken, and continues to break.

But all you've seen is that one moment of Supermodel glory. Of course I can't be disabled.

Disability doesn't have a look. You can't necessarily spot it at one hundred paces. The reality is that it has an infinite number of faces. Far more than any of us can imagine. And visible or not, you can cannot judge the cost for one moment of what others take for granted.

In that moment, I may not look sick or disabled in the eyes of others.

But it doesn't change the fact that I am.

Michelle :)

“Be kind, for everyone you meet is fighting a harder battle.”

-Plato

And the winner of a copy of Charlotte Wood's "Animal People" is.........

2011-11-27T14:39:00.001+11:00

Prize provided by Nuffnang Product Talk.

Well the day is here for the big draw. Thank you to everyone who entered the giveaway, for a chance to win a copy of best-selling Australian author Charlotte Wood's fantastic new novel, Animal People. As I mentioned in the earlier post I use the Thor method to draw winners here on the blog. Seems very apt given the title and theme of Charlotte's book. And given the responses both here and on FB, I think most will appreciate the joy of getting your dog involved in prize draws.

For those who don't know, Thor is one of my two Great Dane's. He had a rough start to life and we are his 4th, but most definitely final, family. He has some 'issues' (so as Mr Grumpy says, he fits right in here) thanks to his previous owners. He's very anxious, not overly bright, and his tail and back legs nolonger work well, but he makes up for that with 90+kgs of smelly furry love.

The Thor Method begins with the creation of the entries. Feathers, glitter and Dorothy Shoes are a must.

Then there is the oh so fun stage of getting Thor interested in the feather entries. Unfortunately, the glittery bird on the side of the plate was far more interesting, so this stage took far longer than anticipated.

Finally, and with the prodigious use of bread treats, he started to seem a bit more interested.

Unfortunately, at the crucial moment he was distracted by a bright shiny object. Thank God we love him.

Nineth time, and several pieces of bribery bread later, was apparently the charm.

And the winner is........

One soggy entry, and a quick chase around the living room later to try and get it back. Damn, he's quick for being so big and uncoordinated.

Brahm from, Alfred Lives Here.

Congratulations Brahm. And if you pop over to Brahm's blog you'll see from his header that he is a very worthy winner.

Brahm if you'll drop me an email with your address (my contact details are up top), Animal People will be winging it's way to your mail box.

Thanks once again to Nuffnang Product Talk for the the opportunity to review Animal People and for the prize copy.

Time to go wash off the dog drool and grab the sticky tape to dehair my clothes.

Cheers
Michelle :)

And because anyone with a furbaby in their life is a winner, I give you, Hot Chocolate's, Everyone's A Winner.

All I want for Christmas is to Fart Without Fear.

2011-11-25T10:09:00.001+11:00

Well my gastro saga continues. I'm sure my mother is proud that I've been keeping the world updated on my recalcitrant bowel, Ruprecht, since August. I wonder if she'll add it into her Christmas letter this year? Tucked away between the updates on her roses and their trip to Apollo Bay. Mind you, you'd think she'd be used to my policy of too much information is never enough. Hell, I take every opportunity to bring up the cousin loving a few generations back, and set out nicely on the family tree, that I blame for the genetic nightmare that is my body. My people are genetically lazy, folks. Apparently it was just too much effort to saddle up the mule, pat the dust off your best burlap shirt, select your best courting turnip, and make your way over to the next, not-genetically related, village. I can hear the banjos from here.

As I mentioned briefly in the last post my dalliance with H1 and H2 antihistamines was short lived. Ruprecht, mounted a very successful campaign, and wore them down until they finally waved the white flag. So now I am back to ops normal. Might as well just put a pillow on the tiles and screw a TV to the bathroom wall. It's not like I'm leaving any time soon. Oh Universe, why must you give with one hand and take with the other.

My green credentials are going down the toilet, literally and figuratively. So sorry rainforests of the world, but my consumption of paper products is back to excessive. And my water consumptive ideal of "if it's yellow let it mellow, if it's brown flush it down" has gone out the consistently umber window.

When last I saw my cardio her only advice to deal with my near-syncope each time I go to the loo (oh yeah I'm living the dream) was to be careful. Yep, that'll do it. Maybe I can put crash mats all around my loo? Or grab out all the bubble wrap Mr Grumpy hoards, and bubble wrap my entire bathroom. At least I can pass all the time I spend in their working out new and creative ways to pop the bubbles.

My trip to Gastro Guy, Wednesday was equally underwhelming. Yet again I was faced with "Oh Shit!" face when describing my symptoms. Looks like the reflex that controls this pesky issue is broken. Even better there is nothing available in modern medicine that can fix that little problem. YAY. Let me party on down with that exciting morsel of information. There may, potentially, be a drug that may help, but is only available in clinical trials here in Australia. Access outside the trial requires a combination of correct planetary alignment, prayer to every deity known to man, and payment by lottery win, kidney and/or first born. He did end our consultation with "I'm going to have to Google this", which has left me so full of confidence.

Oh, and I forgot, I get to take horse tablets for a few weeks to kill off any errant bacteria after he decided that there was something he didn't agree with on my Small Intestine Bacterial Overgrowth (SIBO) test. Doesn't that sound lovely. I keep having images of colonies of bacteria setting up some sort of feudal society in my bowel. Can't quite recall what it was, as this was after the "you will be stuck peeing out your butt for the rest of your natural life" revelation. Kinda hard to concentrate after that. All I could think was the least he could have done is given me the news with a barber shop quartet, in the highly-inappropriate, Family Guy style.

So back to basically homebound now. But what can you do? Someone asked me "how do you keep bouncing back from all the bad news?" Well, there isn't really a choice. I can sit and weep into my cornflakes (which I have done, but it just made my cornflakes taste like saddness, and a little salty). Or, I can suck it up and move on. I can't change it, so I might as well amuse myself with inappropriate jokes about my family tree and messed up digestive system. Besides bathroom humour is funny no matter what your age.

Now if only Santa can grant my one Christmas wish, and let me fart without fear. It's not too much to ask is it? Sheesh, jolly fat man. I've plied you with biscuits and milk for years, and even left out carrots for Rudolf and his hairy brethren, time to pony up.

Cheers
Michelle :)

Given my current health predicament I do think it only fair that either Jensen Ackles or Johnny Depp, stop buy and give me a foot rub, or feed me chocolate, or...... I think I need to start a Twitter Campaign.

I leave you with an annoying, yet appropriate song.

Don't forget to enter the draw (click here) for a copy of Animal Planet, the new novel by Charlotte Wood.

Entries close TONIGHT!! midnight, 25th November 2011.

ABC Ramp Up Article

2011-11-21T22:53:00.001+11:00

Well my response to the NYT's article was accepted for ABC Ramp Up today. A wee bit chuffed (I don't think I've ever been anyone's Editor's Choice before), and nauseous, and the vein on my temple may be pulsing, but mostly chuffed. I think. Ask me in a few days. Too much caffeine induced anxiety today, thanks to two kiddy specialist appointments. Argh.

It's pretty much the same post, but a bit less rambly and wordy. 515 less wordy in fact. Good lord it's hard losing 500 words. I recommend the ingestion of alcoholic beverages and copious amounts of Lindt before attempting such tasks.

You can read the new smooth, shiny, way more mature, article here.

It's been a bit of a highlight on a really shitty week which included one of my dogs having a mental breakdown and being put on antidepressant medications. Trying to manhandle 60kg of bat shit crazy Great Dane into a car and at the vets is about as much fun as a rectal probe. But we made it through without too many new grey hairs and minus me passing out in her wee on the vets floor. Bonus. Though she did sit on my lap and pee on me, which pretty much summed up the last week.

To top it off my bowel of discontent, Ruprecht has mounted a well-organised resistance movement (HA! 'movement', I even amaze myself with my hilarity) against the H1s and H2s that I was so excited about. Luckily I'm off to see Gastro Guy on Wednesday, so hopefully he'll have something new in his arsenal with which to tackle the problem. Fun times. Fun. Fun. times.

So on that bright note I leave you with this highly appropriate and helpful book that I found today.

Toilet Yoga because sometimes sh*t doesn't happen.

"The book contains 15 ‘poses’ that work in various situations and locations. The guide walks you through the movements so you can walk through yours (or sit). Depending on your skill level, you may choose to start at a 1 bowl on our rating scale, or if you’re feeling adventurous, move up to a 3 or 4 bowl move. As you progress through our teachings, you’ll be confident that you can safely handle a 5 bowl maneuver".

Love it!

From an article on a national news disability website, to pooing with yoga. I like to think I provide a little bit of something for everyone.

Cheers
Michelle :)
After this week this seems somehow appropriate.

Don't forget to enter the draw (click here) for a copy of Animal Planet, the new novel by Charlotte Wood.

Entries close midnight, 25th November 2011.

Craft Like You Don't Have A Chronic Illness

2011-11-16T12:55:00.001+11:00

My blogging has been a bit all over the shop lately. Partly due to the usual feeling like death warmed up. Partly due to apathy. And, partly due to the fact I'm trying to actually get around to some of the craft projects that have been collecting dust and dog hair all over my house.

Last Hardwaste (for those who don't have this, it's the magical time of year when you can put all your large rubbish items out on the street and the local council comes round to collect it, free of charge) I scored. I personally think of Hardwaste as a bonus Christmas. People put out some amazing 'rubbish' and I am not ashamed to stop on the side of the road and re-appropriate these unappreciated treasures. Even my children get in on the act, with an audible groan and eye roll. They love nothing better than being made to get out of the car and fossick around in someone else's junk. They have carried all sorts of treasures home for me. Tables, wardrobes, chairs, old braziers, the list is endless. I've even roped their friends into the act. Suck it up boys. I feed you. You can carry crap.

And I've found some great pieces over the years. As soon as I see a piece my mind starts whirling with possibilities. And by the time it's stored in the rumpus room I know what I'm going to do. Pity that my poxy body often refuses to go along with my plans. Makes it hard to buy paints and varnishes when you're physically incapable of driving. And even harder when you don't have the strength to lift your head from your pillow, let alone sand down some woodwork. So many of my projects take 6mths to a year to complete.

My latest project is a large pine-framed mirror that I found on the side of the road. It's huge and heavy and I already know where it is going in my loungeroom, well once it's had a bit of a make over. I'm rather proud of how it's turned out. Now I just need to get Mr Grumpy to hang it for me.

You can see by the back of the old lounge it's leaning against, it's rather large.

The frame was pretty boring so I decided it needed more than just a coat of paint. There is a poem I have loved for years. The River Merchant's Wife*, by 8th century Chinese poet Li T'ai-Po, and translated by Ezra Pound in 1915. I made a pdf of the poem, cut and pasted to fill an entire A4 sheet and had Mr Grumpy to print them out on the laser printer at work (important if you don't want the ink to run). And used these to paper the frame.

Nice and Cheap

My high tech, can of chickpeas solution, to elevating the mirror

Unfortunately the way it was made, I couldn't remove the mirror from the frame

so had to paper the mirror to keep off the paint and varnish.

Finally a use for all the articles from my thesis.

"Lateralization of human nasal chemorecepetors..." is exciting stuff. No, really it is.

Quick coat of white paint to stop any remaining traces of varnish coming through.

Also gives a better background to the white paper.

Two days of frustration, swearing, spilt glue, and three layers of varnish later, it is finally papered.

Voila! Shitty photo of new mirror.

How do you get a decent photo of a mirror without getting your ugly mug in it?

A weeks worth of work, a lung full of carcinogenic varnish fumes, and one new mirror. Woo Hoo!

Now for a prolonged nanna nap.

Cheers

Michelle :)

Don't forget to enter the draw (click here) for a copy of Animal Planet, the new novel by Charlotte Wood.

Entries close midnight, 25th November 2011.

*The River-Merchant's Wife

While my hair was still cut straight across my forehead
I played about the front gate, pulling flowers.
You came by on bamboo stilts, playing horse,
You walked about my seat, playing with blue plums.
And we went on living in the village of Chokan:
Two small people, without dislike or suspicion.
At fourteen I married My Lord you.
I never laughed, being bashful.
Lowering my head, I looked at the wall.
Called to, a thousand times, I never looked back. At fifteen I stopped scowling,
I desired my dust to be mingled with yours
Forever and forever and forever.
Why should I climb the look out?
At sixteen you departed,
You went into far Ku-to-en, by the river of swirling eddies,
And you have been gone five months.
The monkeys make sorrowful noise overhead.
You dragged your feet when you went out.
By the gate now, the moss is grown, the different mosses,
Too deep to clear them away!
The leaves fall early this autumn, in wind.
The paired butterflies are already yellow with August
Over the grass in the West garden;
They hurt me. I grow older.
If you are coming down through the narrows of the river Kiang,
Please let me know beforehand,
And I will come out to meet you
As far as Cho-fu-Sa.

"Animal People" by Charlotte Wood, Product Talk & Give Away.

2011-11-15T12:09:00.001+11:00

(This review is part of Nuffnang's Product Talk. I did not receive payment for this review. However, I was lucky enough to receive a copy to read and keep, and another copy to give away to one lucky reader.)

(Very excited to receive my parcel)

I am a book geek. No two ways about it. One quick glance at my dusty bedside table makes this readily apparent. This is not a new phenomenon. I was the weird child reading Tolkien and Bronte in primary school. One of those strange kids who actually volunteers to be a library monitor so they have first access to all the new additions. Yep that's right. I was that girl. I knew how to party back in the day. I can even admit that one of my favourite High School trips to Melbourne was to visit an antiquarian book shop that looked like it was straight out of a movie. A beautiful blue stone building complete with muffled silence, lashings of dark wood panels, and precious first editions secured behind glass. Makes me wistful just thinking about it.

Very little has changed since that time (including my aversion to dusting, and never ending love of hula hoops. Remember those Big M ones that smelt like the drinks? I had a chocolate one that I loved dearly. Well, until my big brother gave it to the dog for a game of tug-a-war. Not that I'm still bitter or anything.) There is still nothing better than the feel of a book in my hands or the smell of the pages as you crack it open for the first time. Or even better the well-loved, dog-eared copies of your favourites, held together with sticky tape and prayer. Battered treasures that you pull out on rainy days or when you need that extra hit of comfort.

(If I make it small, you can't see the dust right?)

And, luckily I have been given the opportunity to feed my addiction, whilst simultaneously reviewing the latest offering from bestselling Australian author, Charlotte Wood. Animal People takes place over one day in the life of Stephen, a despondent, cafeteria worker from the local zoo, intent on dumping his girlfriend.

I came to this book with no expectations. I avoided reading any reviews and decided to dive in armed only with an open mind and a trusty block of chocolate. And I was rewarded with an engaging book that was truly a joy to read. Can I write a book review by simply typing the words "loved it" again and again? Probably not. Does it count that I teared up at the end as Stephen finds clarity in an unexpected moment? Is my emotional connectedness to the story and the characters an adequate reflection of the book? Or that I read it in two sittings as I became so drawn into the story? Emotionally, I'd give it an A+, but I should probably try a more intellectual approach as well.

Charlotte's paints a vivid picture of Australian city living. The familiarity of the scenes and attention to detail draw you in from the beginning. I particularly loved the early picture she painted of Stephen's vision of his mother on the other end of the phone tracing the flowers on her carpet with her toes. A level of detail reflected throughout the novel. The characters, from the main protagonist Stephen to those that pepper his life on the periphery, feel as though they have been plucked from the real world, giving depth and realism to the story. The slowly building tension is well paced. And the ending (without giving anything away) unexpected and cleverly hopeful, where she could easily have left the reader with a feeling hopelessness and perpetual urban disconnect.

The central character Stephen is as fascinating as he is troubled. Charlotte's use of his internal dialogue as he tries to make sense of the world around him, whilst also trying to preserve his self, is truly engaging. The oppressive heat of the day, the perfect mirror to the oppressive weight of Stephen's life.

The question of not only whether you are an animal person, but what exactly that means for how we relate to the world and those around us, is craftily played out throughout. Making the reader constantly review their own position of what it means to be one of the animal people, without it feeling forced or lecturey.

Overall, I found Animal People a really enjoyable read. And I have no doubt that it'll find it's place up there with my other well-loved, dog-eared treasures to be read again and again.

You can read more about Animal People here. There are also a series of great videos of the author discussing the novel.

Competition Time:

I have one copy of Animal People to give away to one lucky reader.

All you have to do is leave a comment here on the blog, twitter, or FB, and let me know if you are or aren't an animal person, and what that means for you. Make sure you let me know if you do tweet or FB.

Entries close: Midnight, Friday the 25th of Novemeber 2011 (Australian time)

Winner will be drawn using the Thor Method and announced on Sunday the 27th November 2011

Cheers
Michelle :)

"OMG! That is weird". Or is it?

2011-11-09T13:44:00.001+11:00

I do delight in freaking out medical practitioners with my weirdness. Lets face it, you do have to find the fun in Bob where ever you can. Luckily, my weird quota seems to go up with the more time that passes. So I have many opportunities to freak out doctors near and far. Why just yesterday I showed this little video of my foot to my cardiologist and received an "OMG! That is weird".

Which is just what you want to hear when you see your specialists. Not that it's that unusual these days. But a wee bit more pokerface would be appreciated. (It's most likely a muscle fasciculation, by the way. Could be a spasming blood vessel, but I need to check my pulse next time it happens to work that out. Another moment of excitement to which I can look forward).

At least I managed to get this one of video. They happen frequently on my body these days. But when you try to explain these things you often look like a loon. Now at least it's documented so they know I'm not some weirdo making these things up. Now I just have to get 'stroke face'* (when the left side of my face droops) and 'crazy eyes'* (probably nystagmus, you can see a little bit of it in this vlog I did ages ago) on camera. Not that I generally think to do it when it happens. Usually I am sick as a dog when it occurs and really I'm not thinking of Kodak Moments at that stage. My report from uberneuro actually includes both delightful phrases. At least I know he was listening, I guess. And it doesn't look weird. No. Not weird. At. All.

(* For those new to the blog, this is what my delightful children call these things. Basically if mum has stroke face or crazy eyes they know it's a bad day).

What I do love is that even as I write I know there'll be another Bobette out there saying "Hey, I have that too". Because for all our reported 'uniqueness', we have a lot in common. Apart from the odd specialist, most doctors are unlikely to see more than a handful of Bobettes in their practice. And even then without specialist knowledge, they may have difficulty differentiating the weird from the not so weird. Thanks to the internet, Bobettes from all around the world can connect and share their stories. And all of sudden you realise your weird is actually approaching normal. Well not regular people normal. But our normal bar is quite low and easily excited by discovering the normality of our abnormal lives. We are a simple folk.

Another great example of my not so weirdness, is the fact I nolonger 'prune' when I have a bath or swim. Here I was thinking it was just me and my bizarre body. But no there are many many Bobettes out there with the same issue, all thanks to SNAFU. Who knew that having your nerves die would mean a lack of pruning? Not me, that's for sure. I don't recall learning that in my Neuroanatomy and Neuropathology classes. And when put up on a forum, a large group of non-pruners came out of the closet.

Or my labile blood pressure that apparently is quite severe. To give you an idea here are 3 readings from a five minute period.

Time 1

Time 2

Time 3

Fun times. Not exhausting at all. And, as I now know, not that uncommon in the world of Bob.

And these are just the tip of the iceberg as far as weirdness goes. Hell, even my battle scars from my hospital stay were greeted with a chorus of "Me too!"

(Good old Nurse Ratched, wouldn't believe that I react to tapes)

And that, for me, is the joy of social media. It stops us from feeling so alone. If only one person responds with a "Me too", it's a relief to know you are not alone. To know that whilst you are abnormal to most of the world, there is a part of the world out there that understands and gets it. That small connection removes a layer of fear and makes you feel a little less lonely. We may all differ in severity and aetiology, but the world of Bob is quite inclusive. After all, a busted ANS is a busted ANS regardless of your cause.

And then you realise, in the world of chronic illness it is actually quite possible to be abnormally normal.

Cheers

The always weird Michelle

Because I wasn't already feeling like a shit mother.

2011-11-05T13:54:00.000+11:00

"Well at least you know who to blame", said the arsehole GP to my youngest after going through our (read my) genetic history. Because, apparently I passed on my shit genes on purpose. Because I knew that my faulty DNA was going to cause my children a life of pain. Because I'm a sadistic cow like that. Me and Joan Crawford, best buds in the Mummy Dearest club.

You know what's worse than watching your child in pain and being unable to make that pain go away? Knowing that you're the cause. It doesn't matter one iota that I never chose to pass my crap onto my kids. It doesn't matter that I had no clue about what was going on at the genetic level in my body when either of my kids were conceived. None of that matters.

I've known for a while now that I've passed my health issues onto my kids. I deal with it every day. I lay awake most nights beating myself up about it. Every time I see that little grimace of pain on one of their faces I grab out the mental whip for a good dose of self-flagellation. I sure as hell don't need some bastard with a stethoscope and the bedside manner of Charles Manson to rub salt in the wound.

Sitting, listening to a doctor or physio list off what is wrong with your child's body. Hearing words like "interesting", "special", "surgery", "I've never seen.....", is like being sucker punched again and again and again. Handfuls of referrals to specialists and for scans. A punch in the gut. Prescriptions for pain meds no little body should ever need. Another mental strip for my back.

All of this coming a day after him telling the school nurse not to ring me. Because he didn't want me to be stressed about trying to get to school as I'm unable to drive that far thanks to my own broken body. Two sublaxed patellae at school and being wheeled to the bus in the school wheelchair, and he doesn't want to stress me. Needing to be carried by his brother up the stairs at home because he can't weight bare and he's worried about me. Nothing can make that better. Nothing can assuage the guilt.

He shouldn't have to worry about anyone but himself. He should be able to know I'll always be there. I'll always come to get him. That I would slay the dragon and crawl over broken glass, to be with him. Not subjugate his own needs for mine.

And all I want to do is take away his pain. To give him back a childhood without pain and heartache.

But I can't.

So I put on the mask.

And I stuff down the guilt for later. When I can gorge upon it in the privacy of 3am.

I make hot chocolates in pirate mugs. And sit on the couch with him to watch re-runs of Myth Busters. I gather ice packs and crush up pain meds and mix them with honey to make them more bearable. I gather the pillows and make crap jokes. I hug him and tell him that I love him. That we'll get there. And, that it'll be okay.

And I hope that he believes me.

And maybe one day I'll believe it myself.

The Trick is to Keep Breathing.

2011-11-02T13:19:00.000+11:00

So lets see. Last post I suggested that others get on the blogging wagon and join the 50KAwareness project. Go, awareness. Go, getting your voice back. Go, not realising that it is already November and you are already behind. (Sigh). Foiled once more by the permanent fog that envelopes my last few remaining brain cells. Between my failing temporal perception, fatigue and penchant for being distracted by bright shiny objects, this does not bode well for churning out 50,000 words in the month of November.

And that's the difficulty with trying to raise awareness when you are living with a chronic illness. The illness itself gets in the way. Best intentions and a can do attitude are not always sufficient to get the ball rolling. Sustaining the momentum is damn hard when you are having trouble simply brushing you teeth. But I shall solider on. No idea if I'll make the word count, or stick to topic. Like Carol Beer on Little Britain, I fear "computer says no".

It had to happen. Payback. I knew it was coming. I wasn't delusional enough to believe that I could avoid what was coming. That's just how it is. The game rarely changes. The rules remain the same. Now it's time to batten down the hatches and ride out the storm. I know it'll pass. That much is clear by now. That realisation doesn't necessarily make it any easier to deal with. But at least you have something to focus on whilst the storm rages. A candle in the window to lead the weary traveller to safety.

Like usual I pushed my limits. I let myself get caught up in the excitement. And it was grand whilst it lasted. It doesn't even matter what I did, it was just important that I did something, anything. Something not connected to illness. Not connected to symptoms, and pills and doctors. Not connected to 'I can't", "I'm too weak", "I'm too sick", "I'm too.....". Small moments. Moments that have been in short supply the last three months.

I didn't think, I just did. I shut out the voices that sing of defeat even prior to action. I don't know how. I don't know a magic formula or mental trick. I wish I knew so I could call upon it at will. I wish I knew so I could share it with all who read. I didn't think about payment. I didn't listen to my body's protestations. I closed my ears and shut away my internal naysayer.

I swept the dust from my potential and made it shiny and new. I saw possibilities and I took them without hesitation. I held them tightly until I could stand back and admire my handiwork. Pride. Satisfaction. Odd and unfamiliar emotions. Joy from littlest of achievements.

And it is this I cling to whilst the winds howl and the rain pours. And I concentrate on the wonder that was achieved and I ponder the possibilities for when the storm ends. For it will end. And the sun will come out again. The trick is to keep breathing. Through the pain and the nausea and the fear. The trick is to keep the knowledge that it will pass close to your chest. That you'll make it through once more. That when the next storm hits you'll be prepared. You've been there. You've done that. You can do it again. A thousand times over. And with each breath you will feel lighter. With each breath you'll be free.

Michelle :)
Two songs today as frankly I am too tired to pick. Garbage have been a fav from back in the mid90s when they first formed. Combining the talented vocals of the gorgeous Shirley Manson and great muso and producer Butch Vig was always going to be gold. Maybe go the first one if you are in a more mellow mood. And the second, if like me, you like your down times to at least have a kickarse beat. Now back to communing with my pillow.

Blogging and Chronic Illness: Reclaiming Your Voice

2011-10-27T12:53:00.001+11:00

I'm often asked why I blog. Or, as my sister put it "Why put yourself out there? It's dangerous. A serial killer could hunt you down, chop you up, and send your boxed head to your husband in a dusty power line-filled field". Okay, she might not have quite added the Se7en reference, but her 10 minute panicked rant did come close. You should have seen her face when I casually mentioned I also vlog. I should have heeded my own advice of "don't poke the bear". But sometimes I just can't help myself. My sister's response, whilst a tad melodramatic, is not unusual. Unless you are a blogger or use social media, it can be a hard world to understand.

Putting your life out into the public arena can seem strange. I'll have to admit pre-blogging I couldn't quite understand the appeal. But two years later, it has become a normal part of my life. It is an outlet. My therapy. A chance to process events and my reactions to them. By the time I push 'publish', I am generally in a much better place than when I first tapped out a group of disjointed words on the keyboard. There are generally less expletives in the final product too, which I'm sure makes my mum and mother-in-law quite happy.

It is easy to lose yourself in illness. It becomes harder and harder to judge the past. Am I worse? Am I better? Am I just the same? Blogging provides a written reference of changes, good and bad, over time. It takes away the guess work and gives me a reality check, especially when I am being swamped by the maelstrom of emotions and hyped up symptoms that occur periodically.

Blogging is perfect for those with chronic illness. When you are ill, particularly if you are stuck at home, you often feel like you have no voice. Blogging can be your voice.

I am in no way a blogging expert. I can't be bothered reading the rules. And frankly, even if I did I'd still just do my own thing as I'm too lazy to make sure I've checked all the blogging boxes. Lets see, eat a block of Lindt, or check rules? It's not exactly a difficult decision. Of course my lack of expertise wont stop me from giving my opinion. Here are some of the positives to as to why you should consider entering the blogging word and some of my basic tips for blogging.

Why should you blog?

You don't have to frock up.

You can blog in your manky pjs whilst drinking coffee.

Or, blog in your manky pjs, whilst drinking coffee and wearing a bright pink feather boa.

No one will ever know, unless you post photo's like a mad woman. (Note: clever placement of coffee mug to conceal face and appease melodramatic sister. Mind you, no one really wants a crazy Kevin Spacey turning up on their doorstep, so she may be onto something. Don't tell her I said that. I couldn't stand the big sister smug 'I told you so" face).

Blogging doesn't require a fancy office. You can blog lying on the couch, your bed, on the floor, or with your legs up a wall. You can blog in your backyard, in your bathroom (cool tiles are important), or from a hospital bed. Essentially, it is perfect for those with chronic illness.

The hardest part can be doing that first post. I can tell you now, you will never be fully happy with your first post. You'll draft and re-draft until your fingers are little more than bleeding stumps. You'll look back in two years and ask yourself "what was I thinking". This is almost always followed with the ostrich method of dealing. Head stuffed firmly in the sand whilst repeating the words "it doesn't exist if I don't believe it exists", and a pointless vow to avoid further trauma by not reading that post again. If you're anal like me, self-flagellation is order of the day. So you might as well just grab a margarita and get comfy. My tip: write a post, about anything. Put it aside for a day. Come back read it again, edit and push 'publish'. It's like tearing off a Bandaid. Don't think, just do it. You'll realise after it wasn't that painful. Each subsequent post will be easier. I promise.

If you want people to read, and lets face it we all do, even when we say "I just write for myself", make it user friendly. Remember that the majority of your readers are also likely to have a chronic illness.

Use paragraphs, short ones if possible: It is really hard to read a post that is one big paragraph. Attention and concentration are not our strong points. Nor is visual tracking.
Use a plain background: It is near impossible to read text on a patterned background. I know personally, overly patterned backgrounds can set off a migraine, or at least a bad headache.
Use a large, basic font: again small font is hard on the eye.
Plain black font on a white background is easiest to read: You can still have a colourful boarder and header, but leave the text space plain.
Use pictures: This breaks up the text and again makes it easier to read.
Don't use Captcha or Word Verification: These are a sure way to make people move on without commenting. You get little spam when you are starting out anyway. I was really excited when about 6mths in I got my first "enlarge your penis in 10 days" spam as it meant that I was getting more traffic. Most platforms will also have spam detectors inbuilt.
Comment on other blogs: If you want people to read your blog and leave a comment it is a bit of a quid pro quo. Show an interest in someone else's world and many will come to check out yours.

As to what you choose to include or not include in your blog that is a purely personal decision. Like other forms of social media, if you use The Billboard Rule, ie If you wouldn't want to see it on a billboard don't put it out there, you should be okay. Not that I really want to see "Michelle has chronic diarrhoea" on a giant billboard as I drive into the city. But I also know that my apathy and tendency towards meh, would mean I probably wouldn't care all that much. Most blogging platforms (eg Blogger and Wordpress) will also allow you to keep your blog private, or invitation only. So you can choose who can see what you write.

Most importantly simply share your story, whatever that may be. Readers can spot a formula, or insincerity at a thousand paces. Everyone has a story and it is far easier writing about something that stirs you, rather than a topic you think might be popular. The reality is no one else will tell your story, it's up to you.

I tend not to discuss my kids and family, except for the occasional reference. Even then I use pseudonyms to maintain their privacy. I also don't mention the names of my medical professionals. One conscious decision I made early on was not to offer medical advice. It's one I've stuck to, and would strongly recommend to others. I may discuss my experience with a medication, but I would never suggest it to others as we all tend to react differently to pharmaceuticals. Any medical decisions need to be discussed and made with the medical professional most experienced with your case, not a woman in plaid pjs and a tie-dyed t-shirt with a huge chunk of Great Dane spit stuck to her foot.

Blogging should be fun. It should be cathartic. It shouldn't be a chore. There have been times where I've stepped back for a few weeks. The reality is that I am ill. At times my symptoms go into overdrive, or simply dealing with it all becomes too much. I don't beat myself up about not blogging during these times and neither should you. There are many guides around about how often you should blog and when. They are great if you want to systematically build a readership, or develop your blog as a product or business. But if like many people, myself included, you simply want to tell your story, or raise a bit of awareness, you don't need to religiously adhere to these guides. We have enough going on without adding to the burden.

The best and most rewarding part of starting a blog is the community. Finding that one person who says, "I thought I was the only one!" The support and friendship you discover from all over the globe is both surprising and priceless. You discover that we share a common humanity that outstrips any geographic, language, social or economic differences. When I first started this blog I thought people would think I was a complete nutter. Instead, what I found was a lot of people who are going through the same experiences, and equally felt alone and crazy. I found people who were there to laugh and cry with me. To hold me up when I couldn't stand anymore, and who in turn I've stood beside during the hard times. People who also find farts and Monty Python funny. And that Dorothy shoes are the key to happiness for many. And a strange bunch who, according to my Google Search results, are curious if "Don Johnson smells cat urine" and want to see "Gnomes with big boobs". Whatever floats your boat I guess.

If you want to raise awareness for your illness a blog is a great vehicle. I know via this little blog and others like it, there are now many more people around the world who have heard of Dysautonomia. Perhaps even more importantly they know what it's like to live with illness, the good, the bad and the downright ugly. Telling your personal story, gives a clearer picture of an illness, than a sheet of facts ever can.

If you are umming and ahhing about starting a blog there is an awareness campaign starting in November that may be a good way to wet your feet, before fully committing. Many of you will have heard of NaNoWriMo, whereby participants are encouraged to write a 50,000 word novel in the month of November. The 50KforAwareness project is based on this concept. It is asking those with chronic illness to write as much or as little of their story as they can over the month of November. If they feel comfortable to then publish their story on a blog or other social media platform.

So who's going to take the plunge and reclaim their voice?

For those who already blog. What's the best part for you and what would you say to encourage others to enter the blogosphere?

Michelle :)

Lets get this party started.

Pink - Get The Party Started by sayit

Leap of faith

2011-10-24T12:27:00.000+11:00

(photo)

Long time readers will already have a far too intimate knowledge of my bowel habits. I don't shy away from the less glamorous side of living with Bob. And, lets face it, we've all been there at some point. Whether it's related to a chronic illness, a dodgy late night kebab, a stomach flu, or a trip to foreign lands (Bali Belly, Montezuma's Revenge), few are those who have not experienced the joy that is a disgruntled gastrointestinal tract.

I have been living with a permanent burning ring of fire since the beginning of August. And apparently supplying my offspring with endless comedic moments. My youngest will periodically sneak up behind me and play Johnny Cash's famous song on his ipod. Whilst simultaneously peeing himself laughing. Because mum's chronic gastro issues are simply hilarious (or 'hil.hairy.arse' as we tend to say in our classy household). Admittedly we, as responsible parents, played this same song for him when he was being 'cleansed' for his gastro scopes earlier in the year. So really I only have myself to blame. And, yes I am up for Parent of the Year.

Last weekend a trip to my GP reached a depressing low. Bulk prescription for GastroStop. Fanfrickentastic. Because that's just what every 38-year-old woman wants to buy at the chemist. Or even better, send her long suffering husband out to purchase on her behalf. Mind you he has carried a 4litre bottle of my wee to the local pathology lab, so really purchasing bulk stool hardening pills is a cake walk in comparison. I wonder if he thought he'd be undertaking these kind of tasks for me when he agreed to the "for better or worse" line on our wedding day. Love is a beautiful thing, no?

My next appointment to see Gastro Guy is not until the end of November. (Is it sad that every time I say 'Gastro Guy', I envision him as some sort of comic book hero. I can see the tagline now, "Villains tremble when Gatsro Guy produces his latex gloves, SCHNAP!". Dear lord, I really need to get out more). I have not been looking forward to this delay as it means continuing imprisonment in my ever shrinking four walls.

After leaving a comment/whinge/woeisme/sookylalapants rant on a forum, I was contacted by a fellow Bobette in the same rectally-challenged position as myself. She suggested that I try H1 and H2 antihistamines (often used for those who have Mast Cell Activation Disorder, MCAD, a common comorbidity in Bob) as they had worked well to control her own rear firehose. Normally I double check this type of information with my GP. But given they are over the counter meds, so no prescription required, and I am over forking out my life savings for the pleasure of waiting an hour in a germ filled waiting room, followed by the usual, trial and error, medical guinea pig answer I normally get, I thought bugger it. So once Mr Grumpy was sent off to the local chemist to purchase yet more pills.

To say I am surprised by the result would be an understatement. From the first day of taking the combined H1 and H2s I have gone from double digit, bolting/stumbling/praying, to the loo, to 3-4 times a day. WHOA! I here you say. You're talking crazy, Crazy Lady! But it's true. These two little tabs have reduced my vacating substantially, and my butthole is oh so grateful. Even the rainforests of the world have breathed a collective sigh of relief to know that their brethren will no longer be slaughtered in record numbers to meet my excessive tissue consumption.

In the spirit of full disclosure, I have to say it's not a complete answer. I am still nauseous, consistency has changed little, and my stomach continues to speak in tongues at 80 decibels. But frequency has reduced substantially. And that has given me some of my life back. Did you know that if you aren't crapping yourself stupid every three seconds you can pot a plant, and wait for it....walk up a flight of stairs. Whoa, I know I can't believe it either. As, I said to the lovely Linda, who put me onto this idea, I'm pretty sure I owe her my first born, or at least a kidney.

So the plan is to trial it for two weeks, stop it for a week, and see what happens. I'll also be double checking with Gastro Guy, when I see him, about the safety of long term use. As frankly, I hardly need to add another problem to my list, especially one that could be avoided.

So for now I am simply rejoicing in my reduced bathroom time. Laughing at the irony that my newly reduced frequency, would still be a cause for concern for regular folk. Amazing what you can get used to. I may even get crazy and walk up a flight of stairs again. Or go all out, and walk to the letterbox. Oh the possibilities. I may even go all Braveheart, and scream "FREEDOM", from my bedroom window. Its not like my neighbours think I'm normal anyway.

The world is my oyster dear readers. The world is my oyster.

Michelle :)
I'm back baby.

Sticks and Stones: A response to the New York Times Article, "Ailment Can Steal Youth From the Young"

2011-10-19T15:12:00.011+11:00

I tend to shy away from political discussions on this blog. It's been a very deliberate decision on my part. Privately I have certain political beliefs, and there are issues which are dear to my heart. But this blog was created as an outlet to process the day-to-day struggles of living with chronic illness. My own personal therapist in the shape of a keyboard and 'publish post' button. But of late I have become increasingly frustrated by the portrayal of Dysautonomia in the both the media and peer reviewed medical journals.

A recent article in The New York Times, was heralded as a giant step forward in raising awareness for Dysautonomia. For a long time Dysautonomia, in its many forms, has remained an unknown and unrecognised disorder. Diagnosis is difficult and treatment still defined by trial and error. As such, an article in a well respected newspaper, with worldwide readership, is in many respects a great achievement for awareness. But only if the information is accurate and the message helpful. Unfortunately, what began as a great opportunity, has upset many patients. The last few lines of this particular article have left a bad taste in the mouths of many patients.

"Don't let the disease rule you.," Dr. Fischer emphasized. "The messages of how you feel are not reliable. You have to make your mind rule your body".

Those last nine words are like nails on a chalkboard for many of those who live everyday with Dysautonomia.

I will give Dr. Fischer the benefit of the doubt, and believe that his overall intention was to suggest we try to participate in life as much as possible. A course of action which is known to promote mental health and improve coping mechanisms. Managing our stress levels is important, particularly when your autonomic nervous system (ANS) is already malfunctioning. It is known that increased stress equals increased symptom severity. But the idea of the mind ruling the body, in a physical disease, simply perpetuates the myth that a) Dysautonomia has a strong psychological component and b) that all we need is a positive attitude. Or, as I like to call it, a case of the "I think I can. I think I can", Little Engine That Could Method. Can I control my blood pressure and heart rate by simply willing it? No. Though I, like many other patients, truly wish I could. But the question arises, would Dr. Fischer say the say such a thing to a person with diabetes or Parkinson's disease? I think not.

This recent comment comes on top of The Grinch Syndrome controversy following a publication by prominent researcher, Dr Levine. For those unfamiliar with the study, Dr Levine concluded that all cases of Postural Orthostatic Tachycardia syndrome (POTS ) were due to deconditioning and small heart size. His solution, all patients need to do is follow his exercise program. Those who didn't get better simply didn't exercise enough. All accompanied by the proclamation that he had found a 'Cure'. Whilst the methodological failings of the study (including issues relating to sample size and selection criteria) including its overreaching conclusions are well known, this study persists thanks to Dr Levine's prominent reputation in the field, including his work with NASA. This study is quoted by many well meaning medical professionals, despite the fact that many patients were highly physically active prior to illness and continue to have normal heart size, like myself, long after diagnosis. (This is not negating that exercise is a vital part of the overall treatment of Dysautonomia. But it is not a 'cure' for all, and must be tailored to each individual patient).

It would seem that these practitioners, despite their best intentions, have lost sight of the patients they are supposed to be treating. Naming a disorder after a Dr Seuss character is not cute, it is patronizing. Not only that, but this research negates the fact that there are multiple well-recognised forms of POTS and the other Dysautonomia, all of which have different underlying pathologies. There is not a one sized-fits all diagnosis or treatment. Whilst the physiological symptoms of Dysautonomia are difficult to live with, it is the way these impact on a patients day-to-day life that is being forgotten. Living with illness is not just about the numbers. It is also, about the impact on the emotional, social, functional, and psychological health of the person. And many patients have had, and continue to have, a difficult and demoralising experience.

Already patients are told by medical professionals that they just need to exercise, or get out more. That much of what they are experiencing is psychological in nature and continuing illness reflects low motivation. This is devastating. In my own case, as a patient whose form of Dysautonomia is thought to be related to underlying progressive neuropathy, such advice and attitude is hardly conducive to the regrowing of my dead nerves.

Both of these doctors know the stigma attached to Dysautonomia. Many patients have fought for years to finally find the correct diagnosis. During that time they have been told "that it's all in your head", "it's anxiety", "it's depression". There are helpful comments from family and friends, and not a few medical practitioners, that we "simply need to get out more", "be positive", "exercise", "eat healthy", the list goes on and on.

These experiences leave a mark on those who have been through them. For many patients these remarks persist long after diagnosis. Dysautonomia, in all its forms, is difficult enough to understand as a patient, but it is even more difficult to explain to those around us. The waxing and waning of symptoms make it hard for others to understand how ill we are. Surely, if you can go the movies on Tuesday you must be making up the whole sick thing, when you cancel plans on Wednesday due to exhaustion?

Dismissal and disbelief are part and parcel of Dysautonomia. Heard frequently enough patients begin to internalise those feelings, even when they know the truth. Patients frequently experience an overwhelming pressure to prove their illness, both to those in their life and medical professions. As such, the outrage of patients when comments such as this are published, is understandable.

I know from my own experience that there are many doctors who are quick to dismiss you when they can't find a cause for reported symptoms. At the time I first became ill I was in a doctoral program and working as a Neuropsychologist. I knew that what I was experiencing wasn't normal and that something was amiss physically. And yet, I was told that I was Depressed. Despite knowing this to be incorrect I was left deeply upset. Luckily for me, that distress turned into anger which spurred me on to search further and finally find a doctor who could provide me with a diagnosis, and push for treatments. Luckily I was well-educated and knew how to find the answers I needed. But I often wonder how many patients simply accept such a diagnosis and blame themselves when they don't get better.

When you add statements about 'mind over body' and that all you need to do is exercise, you perpetuate the myths of psychological causality and blaming the patient when treatment doesn't work.

I agree we need to push ourselves to participate in life. But as the saying goes, "we must pay the piper", and frequently experience an exacerbation of symptoms post-event. If Dr. Fischer's theory was correct, repeated outings would get easier with time. If it is simply an issue of mind over matter then there would not be the rebound increase in symptoms when we do attempt to grasp a small piece of a normal life. Dysautonomia cannot be treated like some form of phobia. For example, combating a fear of heights by forcing a patient to stand upon a 10 metre diving board. Such, methods are not a cure and can lead to a decline in health in many patients.

I can push myself to make an appointment in the city, 45 minutes away. But not without planning, increasing water and salt consumption beyond normal limits, extra resting and sitting in the passenger seat with my head between my legs. But by the time I get home I am exhausted and highly symptomatic. Quality of life becomes a moot point. Life is defined by periods of increased symptomatology punctuated by pushing yourself beyond your limits for certain event. This hardly reflects an effective treatment option.

Dr. Fischer's comment perpetuates the myth that if we get out we must be getting better and that there is a psychological component to the disorder (I'm not talking about coping here, just the purely physical disorder). I agree that we should get out as much as possible. This is important for our mental well-being. It is easy to become so overwhelmed by illness that we catastrophise, and feel we are unable to do anything. Simply leaving the house and all the potential situations that may occur (eg, fainting or vomiting in public) becomes an occasion for increased anxiety. Few patients would deny this. But his statement is not helpful, and as a specialist in the area, he should know how his words could be interpreted. Mind over matter may be useful in the short term one off event, but it is hardly a useful long term treatment strategy as his comment suggests. Mind over matter may be useful with regard to coping, but it does not treat a physiological disorder.

In psychology there is something known as the Primacy and Recency Effect. This theory tells us that people recall the first and last things they are told, with the intervening information recalled with less clarity (regardless of how informative it may be). In the case of this article, most would take away that the patient discussed was very ill, but the fundamental answer to treatment is related to attitude. Which only serves to perpetuate the myth that this is somehow a psychiatric illness. We are also drawn to personally salient information. For patients who have struggled for recognition this conclusion simply sums up the struggle they have faced, and for many, continue to face. For those who doubt the legitimacy of the disorder, it confirms their pre-existing opinions. Especially coming from an expert in the field.

I am sure that Dr Fischer did not intend to cause harm or distress to his patients by his statements. And it may be a question of simply how the journalist chose to frame the discussion. But it behoves medical professionals to stop simplifying such a complex disorder. Especially, when most will admit that little is known about the mechanisms of the disorder and the ANS as a whole. Additionally, this article only addresses POTS in an adolescent, with a specific identifiable aetiology. Even less is known about those, such as myself, who are in the older age groups. Questions of treatment, recovery or prognosis are often left unanswered as little to no data exists.

Patients are vulnerable and frequently unable to advocate for themselves. As such we rely on those who are supposed to provide us care, to advocate on our behalf, and that includes thinking about the potential impact of the language they use both in the public domain and medical journals.

Sadly, whilst much of this article is informative and aides in increasing awareness, this comment from a prominent specialist in the field merely serves to perpetuate unhelpful myths. Dysautonomia is a highly complex disorder, varying in aetiology, treatment, severity and impact on functioning. It has clear, measurable physiological and pathological markers. Its impact on patients and their families can be devastating. We need an advocate, not minimisation and simplification. And "make your mind rule your body" does not fulfil that brief. The medical covenant of "First do no harm is", is thought a central tenant of medical practise. It is time to apply this practice not only in the treatment of patients in the doctors' rooms, but also the way disorders are discussed in the media.

Michelle

Update: a revised copy of this post was was accepted and published in ABC Ramp Up and arm of the ABC News Network, on 21 Nov 2011.

.....and the horse you rode in on.

2011-10-17T13:17:00.000+11:00

Warning: Woe is me post ahead. May contain TMI, pathetic loads of self-pity, a wee bit of incoherent ranting, and sailoresque swearing.

Being ill has knobs on. It really does. Just when you think you've taken a step forward, you find yourself hugging your porcelain lover or sprawled out on the cold, hair-covered tiles of your bathroom. It's frustrating beyond belief when you do the old "think positive" trick and your body says "Hell no, crazy woman. You're my biatch, and you might as well get used to it".

My gastric system is out of control and frankly the last few months have sucked. All the drugs I take are basically doing bugger all and I often wonder why I persist. I look back at this depressing, rambling, vlog I did a month ago and realise nothing has really changed.

It's rather confronting to have the truth displayed up there is full pasty colour (and what's with my weirdarse left eye?). In some ways I am better than when I went into hospital, though I'd be hard pressed to find specifics. And no amount of positive thinking is going to change the facts. I can't even get back into the GI specialist until the end of November so I am stuck in a gross no man's land that has left me pretty much housebound and dependent, since August.

Whilst, the physical symptoms that I currently have are quite repulsive and hard to deal with, it's the way they impact on my day-to-day life that is causing me the biggest heartache. Yes I need to go to the loo a bazillion times a day, that I can sort of deal with, though my butt hole may disagree. But this one issue impacts on my ability to leave the house. I have to be sure I am in close proximity to a loo at all times. When I need to go, I need to go immediately. There is no choice. There is no clench your butt cheeks and will your sphincter to stay closed, it's a mad dash to the closest bathroom with a quick prayer to every deity known to man that you'll make it. I even have an emergency pack in the car, just in case the humiliating and downright disgusting sphincter fail should happen to occur (it hasn't yet, but I will now run around and touch every piece of wood in my house). Yep, I'm living the dream right now.

Then there is the joy of the public loo to contend with. I don't have time to wait for the key to a public bathroom. And more importantly, I don't want to have to use the rancid petri dish that is the public toilet. Particularly as the last few months I have come close to passing out each time I go. Face planting on my own tiles is not great, but doable. Face planting on a melange of strange short and curlies, and mystery 'deposits', in the unisex loo of the local 7/11 is not high on my 'to do' list.

The logistics are only one fun part of the problems associated with increased gastric symptoms. Going so frequently, means weight loss, which in turn, means increased Bob symptoms. I am exhausted. I have spent more days confined to bed in the last few months than I have in the previous year. More days where standing becomes a Mission Impossible. More days where simply showering leads to squishing magic carrots down the shower drain with my big toe, and crawling back to bed.

Some days start relatively okay and I make plans to catch up with friends. Stupid, delusional woman. But my body is currently balanced on a knife edge and one little thing leads to a big ugly fall. That one thing could be doing a load of washing. Daring to sit out in the garden for 10mins. Or even, the simple act of showering. Last week I was really looking forward to seeing my best friend, but an hour before she came over I had to cancel. Of all the friends in my life, she is the one who is never phased by me being sick. My being KOed on the couch would be okay, we'd still chat and laugh, I'd just be horizontal and vague (not unusual). But on that day I knew I couldn't even do that one simple thing. And that's what I hate about this whole illness crappola.

I can deal with the physical symptoms. You get used to managing. To becoming creative (eg cooking whilst seated). It's not pleasant, but it's part of the drill. I look at the scales that class the severity of Bob dependant upon criteria such as heart rate, blood pressure, how long you can stand, and think how inadequate they are. The severity of Bob and other illnesses is related to how much they impact on my life, not whether my bp drops into my toes when I stand.

I am shat off that I can't drive, that I can't just go for a coffee, or even, sad as it is, do the grocery shopping. I am peeved that this illness stops me from catching up with a dear friend. I am crapped off that I can't participate in my family like I want. I want to punch well-meaning people who tell me to "have hope", 'it'll get better", or "you just need a positive attitude". I don't want to be 'brave', or an 'inspiration' or all the other words that get tossed around. Nor do I want the expectations that are attached to such labels. I am neither. Dealing with the hands you are dealt, when you have no choice, isn't 'courageous', it's merely practical. Bare bones, one step in front of the other. Illness is ugly and messy and sometimes you just want to scream. And so I am angry, in ways I can't even articulate, that the small amount of freedom I had prior to August has pretty much evaporated.

Some days, living with Bob is like treading water, maybe if you're lucky a little sculling whilst you float on the surface for a while. Other times it feels like you're drowning under the weight of the emotional, social, and psychological crap that comes along with the diagnosis. I don't want to acknowledge that with no change since August, this may be my new normal. I can't wrap my head around that yet.

So instead I take the oh so mature high road and say to Bob and Ruprecht, "Fuck you, and the horse you road in on".

Tomorrow I'll paint on my happy face, fight through my bad attitude, and keep on keeping on. But for today I choose the classic "Pout and Wallow" method of dealing. Oh how proud my old psychologist peers would be.

Michelle

Nothing says I can't wallow and listen to funky 80s dance hits.

Because somedays, it's all about Plastic Bertrand

2011-10-08T12:54:00.000+11:00

Well my plans for normal have gone a bit awry. Bob and Ruprecht have ganged up to bitch slap me back into submission. And once more my world consists of pjs, pillows and white tiled ensuites. Crazy plans of normal have been replaced by harried trips to pharmacies, bulk purchases of air freshener, and, an apparently infinite, bowel of despair.

Times like these, only Plastic Bertrand can truly explain how I feel. (le sigh)

Michelle.

I'm over this sick malarky.

2011-10-05T13:55:00.001+11:00

I quit. Yep that's right, I quit. I'm over it. The whole kit and caboodle. I'm taking my bat and my ball and I'm going home. I'm outta here baby. Bob can kiss my ever decreasing arse.

I'm getting a life. Not that I'm quite sure what that entails. I may have to Google "getting a life", to see what the answer is. I do hope it's in dot points as I really can't be arsed reading paragraphs. A diagram would be nice too, particularly if its of the Venn variety. And lots of pictures, bright, shiny pictures. And good tunes. You can't start on the road to getting a life without a decent soundtrack.

I've realised of late, that I've been sucked back down the Bob rabbit hole. I'm not even quite sure when it happened, but I'm pretty sure surprise enemas and almost fainting on the loo were involved. One minute, I had the makings of a life. Then I looked up from the bathroom floor, and it was Bobtown as far as the eye could see.

The last few months have seen a sharp rise in my decreptitude. I can admit that now. Though, my oh so adult fear of "if I say it out loud it will make it true", has gotten in the way. I am more housebound. Even short amounts of standing, exercise (and by that I mean walking from the couch to the fridge to grab chocolate), talking, breathing are all exhausting. My gastric issues are pretty much unchanged. My ability to drive is now almost non-existent. I could add in the near permanent pain, head and joint, the constant unrelenting nausea, the increasing weakness, and all the other crap that seems to be piling up. Frankly, it may be time to simply start stacking my hallways with newspapers and collecting cats. Because, if one is going to be a shut in, one should do it right.

But I say, "Balls to that!", my friends. No more. I'm making my stand. I'm a gunna get me some normal. even if it kills me, or I end up face planting on an unsuspecting dog.

No more will I be known as Michelle, The Sick. I am going to put on my cape, my Dorothy Shoes, and wear my undies on the outside. I will become, Michelle, The Slightly Weird But Sort of Normal Woman With A Fondness For Glitter And Zombies.

Bite me Bob.

My first step is too start a new blog. Because Eunice (my last remaining brain cell) has nothing else to attend to lately. And what does a girl with gastric issues blog about? Why food of course. It's says, suck it Bob. Take that, Ruprecht. It also points to my ever increasing insanity. I may sit on a chair, or the floor, when I cook. I may burn myself on the stove, or oven, or pot, or.... I may employ the 30sec rule on a way to regular basis. I may even use my children as slave labour to peel and cut my veg. But it's still cooking.

It is bare bones at the moment. Not even a decent header in sight. I'm not even sure I like the title. It will be Bob-free. It'll even be lactose and fructose-free in places. It is certainly guaranteed to be grammar and spelling-free.

Check it out if you want to be amazed by my culinary delights. So far I've made, yoghurt, cheese, bread and crumpets.

The Sit Down Cook

(I even take purdy pictures)

But my quest for normality doesn't stop there. I have plans to put plants in pots. To break open my dust covered paints and get all arty. I might even go all out and sweep my front steps. I'm living on the edge baby! The edge of Normaltown.

Michelle :)

Update: Have changed the name of my food blog to The Sit Down Cook, to reflect the fact that I, like many other Bobettes, can no longer stand to cook.

Apathy

2011-10-03T15:37:00.001+11:00

I received a reminder for my now annual breast ultrasound two weeks ago. For those of you who have read this blog for a while you'll remember that my breasts are demented. For years now I have been popping out cysts and lumps like a crazy woman. I had one radiologist tell me my boobs were a garden. I had my GP tell me they are Swiss cheese. I can feel lumps and bumps. Big and small. New and old.

But...

It sits on the table. Waiting.

I know I have to get it done.
I know I have to become a teaching tool once more at my local radiology office.
I know I have a hope in hell of detecting a new potentially bad lump in a forest full of pretenders.
I know my GP will yell at me yet again for my apathy.

But......

I am over being scanned, poked, probed and examined.
I have had my fill of doctors.
I have had my fill of pills and potions.
I am over being a pharmaceutical guinea pig.
I am over shelling out money hand over fist, for no answers, or solutions.
I have had my fill of bad news.
I have had my fill of no news.
I have had my fill of being unique, unusual, weird, strange, and all the other descriptives that come my way.
I am over being told "I have no idea", "there is nothing I can do", "I've never seen that".

I am over new diagnoses.
I am over no diagnoses
I am over new symptoms.
I am over the word 'idiopathic', the fall back for doctors who have given up.

I am over a diary filled with nothing but doctors appointments.

I am tired.

I need a break.

But....

I will call the radiology office.
I will make the appointment.
I will call my GP.
And, I will make that appointment.
And I will take my medicine.

Because...

Just in case.
You never know.
Maybe this time.
What if?

And then apathy wins.
But I wont.

(find out more here)

*Update: It can be hard to maintain the medical momentum when you are chronically ill. But sometimes you just have to suck it up and do it. So I made the call, and am now booked in to be scanned.

Alas I have no junk in my trunk, nor no lovely lady lumps.

2011-09-29T18:43:00.000+10:00

Oh Black Eyed Peas, how I wish I could sing your pithy song with you:

What you gon' do with all that junk?
All that junk inside your trunk?
I'ma get, get, get, get, you drunk,
Get you love drunk off my hump.
My hump, my hump, my hump, my hump, my hump,
My hump, my hump, my hump, my lovely little lumps (Check it out)

But I fear my days of a junk filled trunk are over. (sigh) Two months out of hospital and my trunk is still as flat as a teenage boy's. Actually, I'm sad to say, I also appear to have acquired the chest of a teenage boy. 20 years later and my high school nickname of 'Sufboard' is apt once more. Oh miniscule mammaries, our glory days were so short. Our cup no longer runneth over, it is, I fear, empty. I am officially sans, humps, lumps and junk.

My abnormally junkless trunk is quite the conversation starter:

"You've got no bum!", from my tactful cardiologist
"God. There's nothing there!", from a caring nurse.
"Wow it's really gone", following a sad attempted arse grab from Mr Grumpy.
"It's gone!", thank you sweet physio.

And then, there was the photo. Look away now, for fear of being overcome with rennui.

My junkless trunk displayed in all it's full length glory (ironically in the kitchen, and about a kilo heavier than present). What is left of my trunk was reduced to a sobbing pool of flat melancholy after this unmistakable visual proof. Poor, sad, little trunk.

Alas, I just can't seem to gain back the weight I've lost over the last few months. And I've tried. I really have. I've followed the dietician's instructions. I tried the supplement drinks, with their vomit inducing thick texture. (Fake strawberry flavour is an abomination, and the creator should have their testicles repeatedly waxed by an inept, burly guy named Tiny, who sweats like he's coming off a three day bender). But they just made me ill and run to the loo. I was perplexed, as was my dietitian. Then a timely little article came up on a forum, and I had a moment of enlightenment. Over 50% of people who consume hospital grade meal replacement/supplements for even a couple of weeks, end up with diarrhoea as they are high in FODMAPs. Brilliant. Because that's just what I need. Ah Universe, you are a cruel and heartless cow.

I am now on a high calorie, dietician recommended, diet. Whereby I must eat ice-cream and other high calorie foods. And if I must, I must. Bring on the pizza. Bring on the chocolate. Bring on the cakes. Smoother me in your delightful, health improving, sugar and fat laden, bounty. I will take my medicine. I will even purchase a bigger dosette box. For I fear that no matter how I fold that piece of medicinal cheesy crust meatlovers, it's not going to fit in that tiny plastic hole. And still I cannot gain.

It seems I must resign myself to my new 'svelte' body. For Ruprecht has decided to make himself comfortable and I continue to consume a rainforest worth of toilet paper each day. A quick check of the scales before typing tells me I have reached the stellar weight of 53kgs. Woo Hoo! I refuse to believe that my gain could really be the result of the litre of water I just downed. Or that I will most likely pee out that extra weight in the next half hour. As far as my delusional mind is concerned I have gained, and I'm sticking with that. Reality has no place in my current health regimen.

Maybe this is all a case of, "careful what you wish for". For the past few years I have lamented my weight gain thanks to medications, sloth-like metabolism, and lack of exercise. I had cursed Bob for my Texas-sized muffin top and the transformation of my saddlebags into turn of the century travelling trunks. And my luscious love handles? Well they clearly indicated that I had a lot of love to give. And now? Now my body looks like it belongs in The Corpse Bride. Skeletal, pasty, mottled-skin and poking bones. Sexy No?

Now whilst a strategically placed push up bra may help to give me the illusion of lovely lady lumps in the front, my trunk remains problematic, or is it? Did you know there are multiple sites dedicated to butt enhancers? The things you learn whilst surfing the internet at 3am. Who says insomnia is all bad? My personal favourite is this one. How can you not love a site whose tagline is "Our duty is your booty!". Little did I know I was suffering from "flat butt syndrome". "OMG!" I hear you cry. I know, I was shocked too. Must make sure to add that to my list of diagnoses. Thankfully, treatment is available and I can be "Instantly transform [my] boyish figure into a feminine body". Go science!

Now to work out the look I'm going for. Should I go for a Brazillian or Silicon Pop Up?

(image from here)

So, excuse me whilst I grab my bucket of cookies and cream and chug down a super, triple shot mocha latte with extra cream and shot of lard. Now, do I want my trunk to be "Unbuttleivable", or "Buttoholic"? Decisions, decisions.

Cheers
Michelle:)

Taste of Melbourne 2011

2011-09-26T14:17:00.001+10:00

Well after a rather crappy couple of months I finally made it out of the house this past weekend. Me? Manage to get out of the house? I know I can't quite believe it either. But somehow between more loo breaks than I can count and a little lie down on the bathroom tiles, I managed to brush my hair, frock up and head out of the house with Mr Grumpy.

I was lucky enough to win a double pass to this years Taste of Melbourne, thanks to a fabulous local food blogger Jeroxie. Who couldn't love a blogger who has a recipe for Ox cheek stew, a fav from my childood? A fool with the tastebuds of a rock that's who. Not only are there recipes for ox, but goat and rabbit. Be still my heart. Mind you trying to get my local butcher to source me goat or rabbit is proving a bit of a mission impossible. Seems strange given that as a child growing up in the country, rabbit, ox, duck and the like were all common place. I still have fond memories of my Nanna's braised rabbit, complete with errant buckshot. Mind you, I figure given the price my butcher quoted me for a single rabbit, they probably come buckshot free, and coated in diamonds.

And yes, I can see the irony in winning tickets to a food festival given my recent, and continuing, gastric adventures. But I've always been a bit of a foodie and love trying and cooking new foods. And there was no way I was letting Ruprecht my recalcitrant gut, get in the way of free samples! Even having fructose mal-absorption and lactose intolerance, I still found a tonne of yummy foods. And what I couldn't sample Mr Grumpy was willing to sample on my behalf.

I even managed to swallow my pride and hire a wheelchair. Anyone who has read my blog for any length of time will know how much this pains me. I would rather listen to Snookie and The Situation debate the political situation in Libya, whilst having someone slowly pull bandaides off my hairy legs (hey, don't judge me and my hirsute ways. It's been Winter here in Australia, the time when razors and wax strips go into hibernation. It's eco-friendly insulation), than use a wheelchair. Unfortunately, my current level of decreptitude didn't give me much a choice, and I sucked it up so I could get out of these ever shrinking four walls and head into the city. Mr Grumpy even agreed to push me around. I did see my life flash before me at one point where Mr Grumpy's eagerness to push me around nearly ended up with me face planting. For those in Melbourne, you should know that the Melbourne Museum has free hire of wheelchairs and a reciprocal agreement with the Royal Exhibition Building, where Taste of Melbourne was held. You can't book them, as they are on a first come, first served basis, but there are plenty and the staff at the cloakroom are lovely.

So much to see, and sample.

Proof that I sucked it up and grabbed a wheelchair, and yes that is a lovely row of handmade chocolates.

I may have purchased one, or two or twelve.

Hello my pretties.

Proof that I was meant to come to Taste of Melbourne.

For my salt loving brethren here is a pyramid of bliss, curtosy of Murray River Salt.

Further proof that I was meant to go to this festival.

One of the beautiful domes at the Royal Exhibition Building.

Every time I go I am amazed at how gorgeous it is.

Mmmmmmm Macaroons.

The best Gluten-free Brownie I have ever had. If heaven had a taste, this would be it.

Tea anyone?

Love this building.

Mr Grumpy, sampling on my behalf. Thanks Honey for taking one for the team.

Now this is how one should eat chocolate.

Finally had the chance to taste elderflower. It's something I've always wanted to taste but didn't think was available here in Australia. Maybe it's too many years of watching UK programs like River Cottage and Hugh Fearnley-Whittingstall's hedge brews, but elderflower has been on my "to try" list for some time. It tasted like a cider with a hint of something floral, strange but quite nice. The elderberry was by far my favourite. Thick and dark like treacle, with a taste similar to blood plums. I now have bottles of both waiting for me to find the perfect dessert to go with them.

I am still in recovery mode from the day, who knew it could be so exhausting being wheeled around.

Big thanks to Jeroxie and Taste of Melbourne for making it possible.

Oh and proof I was inspired and actually using all my purchases, well except all the chocolates and macaroons which are long gone.

Roasted tomatoes (tomatoes, fresh oregano from my garden, salt, pepper, minced garlic, chilli flakes, splash of olive oil). Topped with Yarra Valley Dairy's Cardi goats cheese (their Persian Fetta is also delicious), a swirl of Biogrape Red Wine Jus, and Myrtlevale Olives, cold pressed corregiola olive oil. All on a slice of my homemade spelt and kamut sourdough. Yummo.

Mmmmm. May have to whip up some more as my mouth is watering just thinking about it.

Cheers
Michelle :)

And to celebrate finally getting out of the house, I give you classic Australian rockers Boom Crash Opera.

Invisible Illness Week 2011

2011-09-12T15:21:00.001+10:00

This week marks the start of Invisible Illness Awareness Week (okay, so it's more of a US initiative, but here in Australia we are bit lacking in the PR side of things, so I thought I'd jump on the bandwagon to promote a bit of awareness in the Land Down Under).

As someone living with a nice little collection of invisible illnesses I know the challenges that can arise.

For those new to the blog, I'm 5yrs into living with Dysautonomia, or Bob as I like to call it. Well five official years, if I look back at my photos pre-2006 I have a lot of sexy purple leg shots. And if I look back over my life I have had periodic symptoms since my teenage years.

I am also living with:
Progressive neuropathy,
Degenerative disc disease,
A mutant jugular vein called Jeff,
Boobs that persist in growing in places there not supposed to, and popping out painful cysts and fibroadenomas like randy rabbits.
And if I ever pull my finger out to get an official diagnosis, Ehler's Danlos Syndrome.
To top it off I now have Ruprecht, my delinquent gut, for which I am still looking for answers.

In other words, I have the Ford Pinto of bodies.

Despite my delightful and ever increasing list, I still look pretty healthy on the outside. Okay not so much in the last two months since Ruprecht has taken up residence. As Mr G says, "well at least you look sick now". Thanks honey. Always there for the moral support. But in general I can put on the spackfiller, whip on some lippy, and look relatively normal. This can make my health issues seem rather confusing for others.

Apparently, I simply "don't look sick". I also don't act like a sick person, whatever that means. Foiled once more by my own Oscar worthy acting abilities. The logical conclusion to this being, people think you're either not sick, or not as sick as you claim. Which is understandable, right? Because all real illnesses are visible. You know, like Diabetes or heart disease. Because their years of no medical training, makes them experts at spotting and diagnosing illness. (Okay, I may still be a little bitter about a few people).

It doesn't help that I was stupid enough to pick the obscure disorders. The kind that no one, not even most doctors, have heard of. And if it's not enough that they are obscure, they are also complex. All of which adds up to yet another layer of invisibility to contend with.

What's a girl to do?

Should I highlight the black circles under my eyes?
Should I lie dramatically on a couch and moan?
Should I "woe is me" at every opportunity?

Would that make my invisible illnesses more real?

Maybe for other people, but not for me.

I live with it everyday. They are very real to me.

It is real when I can't stand in the morning because my bp is so low.
It is real when I can't string a sentence together.
It is real when I can't open my eyes due to the excruciating pain in my head.
It is real when I have to lie on the tiles in my bathroom following a shower.
It is real when I can't feel when I've cut my legs when shaving, or burn my hands when cooking.
It is real when I have to hold my hips in with my hands when exercising.
It is real when I am bent over the toilet in a public bathroom because the nausea is so bad.
It is real when I lie in bed unable to sleep because my feet are burning to the point where I cry.
It is real when I pop a disc in my back because I have a scan at my local hospital.
It is real when I can't coordinate my legs to walk properly.
It is real when I grab the wall or have to stick my head between my legs because I simply went to the loo.
It is real when I can't get cool in the middle of Winter and must put on an airconditioner.
It is real when I can't exercise because it causes my bp to drop.
It is real when I can't feel the pedals in the car through my shoes.

It is real to me in a million other ways that I could list, but that most people will never see, or understand.

Disbelief and dismissal cut deep. They attack the spirit. Heard enough times, they are internalised until the criticism comes from within as readily as it comes from without.

It must be in my head.
I must try harder.
It is my fault.
There are others worse off than me.
I am not worthy.

Acknowledgement isn't about pity, it's about compassion.

Just because you can't see someones suffering, doesn't mean it doesn't exist.
Just because you don't understand, doesn't make it less real.

Compassion costs nothing.
But is priceless to those who receive.
And is a gift to those who choose to give.

Michelle :)

Here's a little post I wrote a couple of years ago.
Dysautonomia: Invisible Illness My Arse.

I'm a Salty Wench

2011-09-02T12:05:00.000+10:00

Bob continues to go all WWF on my body. Brain cells have left the building, along with my bp, pulse pressure, and the ability to ablute like a normal person. So I thought I'd put up the post I initially tried to schedule pre-hospital admission. Obviously my brain was firing on all cylinders that day as it failed to post.

One of the strangest parts of having Bob, is our need for salt. People look at you crazy when you say you have a health condition where you must have salt. And not just a little salt. As my cardiologist says, "if you can still taste your food, you're not having enough salt". Whilst the rest of the population is doing everything in their power to decrease their salt intake to aid vascular health, we Bobettes are mugging cows for their salt licks.

There is only one form of Bob that should avoid salt, Hyperadrenergic POTS, but the rest of us need to live on a saltpan. I still remember the look on the poor OT's face when I was in hospital and she handed me the stock standard cardiac health book, with it's anti-salt campaign. It's hard for others to understand. When I tell my GP that I often just have a teaspoon of salt in the morning she looks horrified. Yes GP I am living in crazy town and it's full of salt loving freaks.

One of my medications even requires salt to work. It's on the little information sheet that comes with the bottle. I only scanned the sheet so I'm not sure if it mentioned tequila and lemon as an additional requirement, but it only seems logical that they'd also make it work better.

I collect salt sachets everywhere I go. A bowl of sachets on a shop counter really is an invitation to take what you need. Just because my need is larger than most, shouldn't stop me from clearing them out. And really I'm performing a public service by removing the salty temptation from others who need to lead a salt-free life. It's all very Mother Teresa.

I carry a stash of salt sachets everywhere these days. In my purse, in my handbag, in the glovebox of the car. You just never know when you're going to need that salt hit to get your bp up. I don't advise keeping the sachets in your coin purse though. I know from my own early rookie mistake, that the gross metallic taste can permeate those little paper packages and make you gag.

(My purse salt sachet stash)

I have a good knowledge of emergency salt sources for the times where my brain fog has let me leave the house without a single grain. Burger Rings (1140mg per 100gm) are one of the best sources. They have the added bonus of making me feel like I'm 12 again, especially when I wear them as rings on my fingers. And I like to think of a packet of Thins (596mg per 100gms) as purely medicinal. Not to mention my encyclopaedic knowledge of the most salty foods eg fetta and miso. And the joy of brine. Mmmmm......brine. How I love thee.

(And now the Lindt gods have smiled on me and combined chocolate with salty goodness.

This can now qualify as purely medicinal. Thank you. Oh thank you.)

I make my own flavoured salts which I use at home. Herbed salts are what I mostly make, but you can add pretty much anything. And it's so easy that you can make it with complete success in the midst of a shocker of a brain fog.

All you need is:

An old coffee grinder. You really need to dedicate this grinder to future salt production unless you like your caffeine with a salty/herby/spicey aftertaste. I found this out the hard way after a less than pleasant mug of salty, fennel seed coffee.
Good quality salt. When I can afford it I buy a good quality sea salt flake or a Murray River Pink Salt. Ironic that the area of my youth that was decimated by salinity, now produces tasty salt to sprinkle on my fries.
Herbs dried or fresh. My favourite is rosemary, but thyme is a close second. You can use a softer leaf herb such as basil or oregano but the moisture content can make it a bit too moist if you're not careful.
Spices. Fennel seed is great. As are everything from chilli flakes to cumin. And Szechuan pepper is yummo on calamari.
Citrus rind. Any citrus will work, though I have a preference for lemons or Tahitian limes. Use a microplane (which maybe my favourite kitchen gadget ever) to collect the rind.

I don't really measure quantities as I am more of a measure by sight and feel, cook. But if I had to guess it's be about:

1/3 to 1/2 cup salt

then depending on what flavour you want, add

1tbsp fresh herbs
1 tsp spice/dried herbs
1/2tbsp citrus rind

Then it's simply mix it all together in the coffee grinder. It also lasts forever thanks to salt's natural preservative qualities.

My favourite is rosemary and lemon salt. It's like a little taste of heaven when sprinkled on some home baked potato chips ('fries' for my Nth American friends).

I do have an emergency commercial rosemary sea salt flake by Falksalt. Which looks a bit like fish food but tastes divine. Must be my Swedish roots that make me love it so. Kind of why I like smorgasboards, gravad lax, ABBA, and Greta Garbo movies.

(I really want these salt and pepper shakers from here)

Cheers
Michelle :)

And what would any discussion about salt be without a classic Salt-N-Pepa tune.

The Adventures of Bob and Dick.

2011-08-31T15:03:00.000+10:00

".....and then he did a mould of her vagina!" Not exactly the sort of thing you expect to hear when you're sitting in a little hospital courtyard sipping your illicit lemonade, but it made me both wince and giggle like a fool. Which I'm pretty sure was her intention. Because that's what she does. She makes me laugh when it seems like there's nothing really to laugh about. And she always knows exactly what it will take. (Though, if discussing an art piece made entirely of plaster cast vaginas doesn't make you laugh you really have no sense of humour).

When I think back to that fateful day in 2008 when we first met I could never have imagined how important she would become to my life. Who knew that developing Bob would lead to anything good? And yet it did, and the fact that it was so unexpected makes it all the sweeter.

There we both were, in a small hospital gym, surrounded by a gaggle of grey-haired Franks and Merles. The only two patients in the room who didn't have first had knowledge of the Great Depression. We bonded over illness, over an upturned life, over a love of Johnny Depp, and being hit on by sleazy elderly Lotharios.

She knows only too well the world of doctors and sickness. She's faced it head on, and left me in awe of her determination and courage. And even during those times, she reached out to me, and to others. Her generous heart and giving spirit always in evidence.

She is an expert at taking my mind off being sick. It's often only after she leaves and my heart feels lighter and my cheeks hurt from laughing, that I realise what she's done. In many ways it's not even that she stops me from feeling like the sick person, instead the sickness becomes irrelevant and she reminds me that I'm still here.

I know I am lucky to have found a kindred spirit with a wicked sense of humour. Someone who understands what being ill, and the baggage that comes with it, means. Someone who simply gets it. But most of all, I know I am lucky because I found a true friend.

I don't know if there are any words to adequately describe what her friendship has meant to me over the last few years. I know I have struggled writing this post more than most. And I know these few barely touch the surface.

But I am proud to call her my friend, and even happier that she calls me hers.

Happy birthday Kerri.

Michelle :)

The Great Escape

2011-08-22T21:34:00.000+10:00

Just another quick post to let everyone know I'm out of hospital and back home. Unfortunately, my plan to have a fully functioning gut and butthole was simply a flight of fancy and I am still sick as a dog. (My plan to be ANTMs oldest, most wrinkled supermodel, is however going a treat, and I may be just a kilo or two off rocking skeletal chic).

It has really been quite an eventful time in my life, thanks to Bob's fickle nature. Highlights have included:

I did win a battle of wits with Nurse Ratched (I will have my lemonade biatch!).
I've been violated yet again, by a suspiciously cheerful man with a variety of snake like cameras.
And have reported on the frequency, shape, size, consistency, colour and odour of my excretions to every person within a five mile radius of my hospital room.

Ah dignity, I feel I may have misplaced you somewhere between the thumb-sized poo collection jar of stupidity and having to brace for a surprise enema.

"How many times can this woman talk about her busted gut and her need for special ed classes to learn how to poo?", I hear you ask. Well many many times apparently. Lucky you, dear reader.

Actually, what's even luckier is that my piss poor excuse for a body continues to fall apart at the seams so I am too exhausted to do much of a post (or breathe, or stand, or shower, or....), so you'll have to wait for the next episode in the exciting adventures of my bowel, which I am considering calling Ruprecht.

I will leave you with a fabulous post from one truly lovely Elly Lou of BugginWord fame who made my day by dedicating her weekly uke tune to me. I may have alternately laughed hysterically and sobbed uncontrollably throughout, but mostly it just made me smile. (PS I am also happy to take that bottle of wine, I'll even wait to share till after Paul's arrival, MFBT baby :))

A huge thank you to everyone who has commented, emailed, tweeted and FBed me over the past few weeks. It means more than you could know, and has helped to keep me smiling through what I will have to admit has been and continues to be, a rather rough patch on many levels.

Michelle :)

The Machine That Goes Ping

2011-08-08T10:24:00.000+10:00

Just a quicky to let you all know I've been admitted to hospital so probably wont be on here for a while. I have attempted to do a delayed post, actually tried it before admission, so that may or may not come up. Bob has kicked my butt big time. At this point not sure when I'll have my freedom again. At least I'm on day 3 of continuous fluids so I feel a little more alive. Though having the machine that goes ping go off all through the night if I bend my arm is not conducive to rest. Fingers crossed I'll be out in a few days, with some answers and solutions.

Till then, take it easy.
Michelle

The only way is up.

2011-08-04T09:01:00.000+10:00

Well turns out my gastro was so atypical, it's not even gastro. (Sigh). Yep, once more even the vaguest trace of normal slips through my fingers. It seems that Bob has dreams of world domination and my gut is Poland. Joys.

Who knew there would be a time in my life where I would wish I had a bunch of rancid bugs having a rave in my lower imtestine? Not me. But there you go. The fun times just never end.

So yet again I am discussing my bowel habits with various members of the medical profession. Yet again there are more specialist appointments to be organised. Yet again there are more tests.

It seems that uberneuro was right about the whole progressive thing. Only by 'progressive' it appears he meant 'faster than a speeding bullet'.

So now I have more tablets to take. More time to waste. More checking in with my doctors to discuss my poo in great detail. Daily conversations about the the consistency, shape and odour of my excretions. Something to look forward to I'm sure. I know they're just as excited as I am. At least they get paid for the pleasure.

So my plan for now is watching re-runs of 30 Rock whilst sucking down Hydrolite popsicles, which taste suspiciously like Tang. Luckily the new tabs also make you sleepy, BONUS! Given the first one left me comatosed on the couch for a few hours, only to wake up to Mr G and the eldest rug rat eating dinner next to me, it looks like a snoozefest is on the cards for the next few days.

But really, if things don't pick up soon I may have to break out the big guns, otherwise known as, 80's Power Ballads. So if you hear the first strains of I Want to Know What Love Is, or even worse, I've Never Been To Me, you'll know that the shit really has hit the fan.

Thanks to everyone for their well wishes, they are greatly appreciated. I'm sending you all big cyber hugs and air kisses.

Michelle

Update: Always read the small print: "medication may lower blood pressure and cause rapid heart beat". So shortly after taking its already:

Yep feeling better already. #@!$%^&*%$#@!!

Okay I may just need one hit of 80s magic to make it through the day.

Self Compassion.

2011-08-02T17:05:00.000+10:00

Now if only I could work out how to pick a better picture as the still.

Michelle :)

Atypical aka WTF?

2011-07-30T15:14:00.000+10:00

Just once I'd like my bodily fluids to be normal. Is that too much to ask? I didn't think so, but apparently the universe has other ideas. Because my recent mucus adventures obviously weren't enough fun. (I think I hate you universe). Atypical gastro. Yes, that's right. Atypical fricken gastro. Because apparently I can't even get the shits like normal people.

Not that I really know what that means. Not that I really think my GP knows what that means. But fingers crossed that the poor unfortunate at the path lab who has to grow my poo bugs will know what that means. Good lord, I hope he's wearing one of those yellow suits from Outbreak, before he pops the lid on that container.

But I'm looking for silver linings, I really am. Lets see.

For once I do look sick, according to Mr Grumpy. So I guess that's something. Mind you I never really thought of gastro as fitting into the Super Model disease group like Bob. Something about exploding bodily fluids doesn't exactly scream beauty.

And I have lost those pesky pounds, plus a few, and I didn't even have to go to a single Jenny Craig meeting. Though that could stop right about now. 7kg down in a little under a week not so good for symptom management and I'm pretty sure I could have just tossed my meds straight into the loo rather than bothering with trying to down them. But at this rate I'm a shoe in for ANTM, well apart from being an old fart and all.

I got to freak out my GP, which I always enjoy, by having no peripheral pulse. Though she could get one from the weirdly spasming blood vessel in my stomach that she could both see and feel. A first for her apparently.

I didn't even feel the large needle in my bum to stop vomiting. Go the power of SNAFU.

I also managed to gross out my eldest son, again something I enjoy immensely, by pointing out that there was a bag with my foul poo in it, sitting right next to him as he drove me to pathology.

I haven't had to cook, which is really a bonus all round, as no one wants a gastro-infested woman touching their potatoes.

See silver linings and all that jazz.

Now if only I could work out how to stop water working like a laxative I'd be pretty happy. And real food would be nice. But, that just sounds picky.

So I'll crawl back under my doona and cuddle my pillow, and think about how in a few days I'm sure to get a gig on ANTM.

Michelle

And because show tunes always make me happy.

One day.

2011-07-24T23:13:00.000+10:00

There was a thread on one of the Bob forums I read, that posed the question, " If you could be given ONE day without dysautonomia, what would you do?" It's the sickie equivalent of "what would you do if you won lotto?" but with more answers relating to number twos than holidays to Europe.

It's not really a question that I have thought about, especially not in recent years. Initially, I was still viewing the world through delusional rose-coloured glasses which told me that recovery was a possibility. Now, I'm resigned to the fact that it's not going to get better, and, after my Uberneuro visit, that my current state should be viewed as my glory days, as its only going to get worse. Good lord, that sounds so doom and gloom. And frankly I'm not ready to process, let alone write about that in any deep and mature fashion. Bring back denial dammit, it's my favourite of all the coping mechanisms.

Going to my happy place.

Ahhhh.......happy place.

Where were we?

It's actually taken me a while to think about what I would do with a day of complete health. Part of me feels like I should say that I would spend it doing things with my family, because that is the PC answer these days. Not knocking those for who that is their hearts desire, but for me I'd be lying. I love my family, I do, but I focus every available shred of energy on them, every day. Don't get me wrong, I don't begrudge that in any way. I do it by choice and because I love them. But should that one day ever arrive I have other plans.

I would be independent Michelle once more.

I would put on my Dorothy Shoes and favourite green dress, and head into the city.

I would drive the whole 45mins, by myself.

I wouldn't plan for loo or puke stops. I wouldn't worry that I would get into town and have to turn back. I would drive without considering any of those issues.

I would wander up and down the many arcades in the CBD, in my inappropriate footware.

I would savour every blister and would love that initial painful surge of blood back into my feet, when I removed them at the end of the day.

I would try on overly priced clothes in the boutiques.

I would take time to enjoy the beauty of the Block Arcade.

I would sit in a little cafe in an alleyway, drinking hot, rich espressos, and simple watch the world go by.

I would eat tapas and slices of wondrously rich cakes.

I would walk to the gallery and wander through the exhibits.

I would stand on the Prince's Bridge over the Yarra River and watch the boats float by.

I would enjoy the hustle and the bustle, the smells, and sounds of the city.

I would walk down to China Town and eat Yum Cha and marvel at the glorious golden ducks hanging in the windows.

I would lie, flat on my back, in the Botanic Gardens and watch the clouds scoot over head.

I would have small talk with the lady in line at the coffee stand. The weather, the crowds, who will win the footy. No talk of canes or illness.

I would sit in St Paul's Cathedral and soak in the silence, a world removed from the city sounds that surround it.

I would sit in a little restaurant in Collins St. Eating a meal composed completely of entrees. My table close to the window to watch the people and the lights roll past.

I would watch the seagulls fly around the spire of The Arts Centre, deluded by the bright lights to think it was still day.

I would stand in front of Her Majesty's Theater and marvel at her beauty in the soft glow of the lights.

I would wander back to my car, my step light and my heart full.

I would drive myself home inhaling the beauty of the string of tail lights strung out before me.

I would open up the windows and let the cool air rush in and tangle my hair.

I would skip up the steps at home, two at a time.

I would snuggle on the couch with my kids and my husband and tell them about my day.

And I would breathe.

I would be normal.

I would just be.

That would be my perfect day.

No contingencies. No sickness. No dependence.

That's what I would do with my one day. What would you do with yours?

Cheers

Michelle :)

The View From My Couch: Daphne

2011-07-20T10:14:00.000+10:00

It's a miserable Winter's day here in Melbourne. Even loving Winter, there are times when I am simply over our squelching driveway. When receiving a face full of icy water when the wind catches one of the fern fronds is no longer humourous, or refreshing. We are in the true heart of Winter. When the house will no longer truly heat up, and the crispness of the air takes your breath away. Even our randy and raucous possums are less likely to bash across our icy roof top at night. Instead, taking their nocturnal frolicking to the warmer realm of our roof space.

I still enjoy the ethereal beauty of the thick fogs that smother sound and shrink the world. Even yesterday driving home on our windy hills roads and not being able to see the bonnet of the car, was more adventure, than annoyance. The hills take on an otherworldly beauty in Winter that I would never change. But wet, chilly days, day after day, and a back yard that is now a bog, does wear on the nerves.

Just as I was ruing the mud that seeped up through my thongs yet again this morning, I caught a whiff of perfume. Over near our bins, of all places, we have a variegated daphne bush. It's a resilient little bugger. It is surrounded by weeds and smelly bins. It is frequently hit by boxes and bin bags swung by pouting children who feel that bin duty is below them. It has been chewed on my possums and swallowed by vicious blackberry canes. Yet here, in the midst of this wasteland and a miserable Winter's day, it has flowered. It's sweet perfume is caught on the wind, and seeps peace into your pours. It's a smell of my childhood. Up there with the jonquils and freesias of my grandmother's garden.

Now a little piece sits on top of my cabinet. The strength of the perfume, incongruous with a bloom so tiny. Yet the fragrance fills the room. And I sit in my lounge room, breathing in the sweetness, looking out the window at the mist and damp boughs, and Winter seems wonderful again.

Michelle :)

And the Winner is.............

2011-07-19T15:39:00.000+10:00

I will have to say I've been overwhelmed with the large number of entries and lovely comments for one little pair of Dorothy shoes. I may teared up a little reading them, or it may just be that pesky hay fever affecting my eyeballs again. I'm pretty sure I saw some mould spores in my shower so I'm blaming those, okay.

Anyhoo, it has become clear that glittery red heels are the source of all happiness in the world. They are beloved by all, and coveted by many. Personally, I think they should be prescribed to everyone. Not just let them eat cake (although that is a lovely thought, particularly a large rich mud cake), but also Dorothy Shoes for every man, woman, and child on the planet. And then everyone would be filled with love and joy and we'd all dance instead of walk. This is obviously the answer to world peace, I'll have to give the UN a call.

I will say I have amused myself making up the entries and thinking through possible ways to do the draw. My eldest was very impressed with the half hour we spent in the craft store deciding between feathers and little wooden pegs. I'm sure he told all his friends about our exciting outing. He was even more impressed with my desire to involve the dogs in the draw. I am now officially the Crazy Cat Lady, but with dogs.

I wish I could send everyone a pair, but alas I could only pick one winner.

I like my entries. I don't care how much my loved ones shake their heads.

Thor was equally impressed with being chosen to pick the winner.

And all that training, and mutilated feathers, has paid off as Thor the wonder dog, carefully selects one entry.

In fact, he was so excited that he needed a little lie down after.

And the winner is..............

Or as it looked after Freyja broke in, nabbed the entry off the floor, ran off and tried to eat it.

This is why Freyja was not involved in the selection process.

Big Congratulations to Em of

I'm Confused (and a Tad Nauseous).

So Em, email me (in the contacts tab above) and let me know your UK size and heel preference, and a little box of glittery magic will be winging it's way across the pond to your door.

Big thanks to everyone who entered. Best blog birthday ever.

Cheers
Michelle :)

OMG its a Giveaway!!!!

2011-07-11T18:17:00.002+10:00

This little old blog of mine has almost reached a milestone, it will soon be two-years-old. It's a very exciting time as I never thought I'd still have anything to write about two years down the track. Between my apathy, lack of follow through and difficulty in coordinating breathing and.....well anything, it's amazing that it manged to get past the first sad little post.

I've been racking what little is left of my brain for an appropriate way to celebrate. I considered chugging margaritas, dancing on the inside, face planting in a large soft mud cake, or, even doing a streak through the lines of shrieking fans outside the opening night of the new Harry Potter movie. Now whilst a medicinal margarita and a cake of the chocolate persuasion are highly likely, I thought it would be nice to give a little something back to the lovely bunch of readers that have stuck by me despite my obviously increasing insanity.

It's GIVEAWAY time!!!!!!!

I've thought long and hard about what would be an appropriate prize for such an auspicious occasion and such discerning readers. Of all my posts, there is one that stands out for the joy it seemed to give others. Even a year later I'm still getting comments, both here and on FB. I also love my shoes even though I am unable to walk in them. Just to glimpse their glittery goodness out of the corner of my eye brings me great happiness. And, as the more astute of you may have noticed, a picture from that post now adorns my header.

My tutorial on making Dorothy Shoes unearthed a desire that seems to have lain hidden in the hearts of women (and not a few men) the world over. Glittery red shoes are the path to true happiness. There is magic in them there shoes, and that magic must be shared.

*I also find it highly entertaining that my little post which contains information about unicorn farts has ended up on the Vogue forums.

Hello my pretties.

So in honour of that one little post and those glittery shoes of goodness.

I am giving away

a pair of Dorothy Shoes

to one lucky reader.

I know it's hard, but try and contain your excitement people. Glitter fever is quite overwhelming, and frequently contagious.

And just think you too could be a crazy woman doing Blue Steel impersonations in her backyard.

To Enter:

All you have to do is leave a comment here on the post.
This giveaway is open to all readers, both here in Australia and overseas.
Feel free to Tweet or Facebook the competition to anyone.
If you happen to choose to 'Follow' the blog over on the side, or 'like' the FB page I'll even give you an extra entry (just make sure you let me know, brain challenged remember and I don't want anyone to miss out on an extra entry).

Entries close Midnight Sunday 17th July 2011 and the winner will be announced on the Tuesday.

***ENTRIES NOW CLOSED***

The shoes can be made in either the traditional high heel, or in flats. They will be made to the winners size and choice of heel height.

So enter away people the magic of the glittery Dorothy Shoes of Goodness needs to be shared.

Cheers
Michelle :)

PS Thanks for all the well wishes during my recent tussle with the flu. I think the delightful phlegm cement is finally starting to move off my lungs and I am hoping to attempt a full day out of bed in the next few days. Brain may take a bit longer to de-fog as evidenced by my recent new phone debarkle.

Me: "It says that the temp is going to be 11 to 32, that can't be right?"
Youngest: "No Mum, that's the time".
Me: "Oh".
Youngest: walks away shaking head at my growing stupidity.

One step closer to the use of safety scissors. Sigh.

No this song doesn't really have anything to do with the post, well unless you like shoes a little too much. Not judging......much. It's just an old favourite and it's my birthday, so there.

90% Mucus 10% Whinge

2011-07-07T15:01:00.000+10:00

I love Winter I do. It's cold (in fact it's supposed to snow here today) and you all know how I feel about cold. It's right up there with giving Johnny Depp a sponge bath or eating chocolate off his belly. Cold is good. But unfortunately it also has a dark side. It's also flu season. The time of year where people cough on the back of your neck in line at the supermarket, or sneeze all over the produce section. The time of year where you need a surgical mask and a blow torch to kill the bugapalooza growing on every surface in town.

Damn you sick people who can't keep your mucus to yourselves. You should all be hunted down and kneecapped.

In case you can't guess, I have caught a bug. And, I'm not happy Jan.

I have been reduced to a fetid cloud of pestilence, mankifying in bed.

Initially it was somewhat amusing. Normal sick. Sick like other people. Sick that has treatments like chicken soup and Vicks Vapour Rub. There was a novelty factor, that was somewhat pleasing. However, that novelty factor wore off the second I went to take a sip of my coffee only to have a steady stream of super runny mucus run from my nose to plop in my mug. This is not on people.

Since that time my body has been taken over by a ravenous horde of bugs, till I am now composed primarily of mucus.

I am past the point of walking around with tissues protruding from my nostrils in a vain attempt to stem the unending tide of mucus. I am past the point of sitting miserably in the shower letting it's free flowing grossness be swept away by the shower nozzle.

I am even past the point of uncontrollable full body sneezing. Thankfully, I have not reenacted my infamous Liverpool Kiss, Kitchen Bench incident (tip for the day, don't sneeze whilst bent over the kitchen bench) as I have been to unwell to enter the kitchen.

I am now at the joyous point where it solidifies in your lungs and produces the ultra-sexy Darth Vader wheeze. I may or may not have amused myself for about an hour yesterday by saying "Luke, I am your father" in between lung wrenching coughs.

Stupidly, I though I was winning the war against my pestilence and went to physio on Tuesday. Fool! I should be studied for my heightened level of stupidity. I'm pretty sure I heard the bugs in my lungs laughing at me, though that could have been my feverish delirium.

My throat feels like I have been chugging razor blades, and my ears want to burst. My head is in a vice and even my eyelashes hurt. Perhaps most distressing to my concerned loved ones, my whinge quota has gone up ten fold.

To say this has played havoc with Bob would be an understatement. Standing and breathing, is over-rated right? Who needs a pulse? Not me that's for sure. Though I could have done without the tachycardia and stabbing chest pain last night that made me feel as if my whole body was beating.

Impersonating characters from Star Wars aside, I have attempted to distract myself during this time.

Coma sleep has been quite good. Though waking up to find your face stuck to the couch or pillow by mucus that works better than super glue, is a bit of a downside.

Whimpering into my pillow has passed many an hour.

Watching Zombieland did make me laugh/cough/choke. And seemed somewhat appropriate given the various disgusting fluids exploding from my body.

Staring blankly at the computer screen for hours on end as your brain tries desperately to decipher those weird black squiggles, is quite productive.

I have redecorated the bat cave. I'm going for the littered crack house look. A pile of moist used tissues over there, another over here. Multiple glasses and dregs-filled mugs. Casually tossed books. Throw pillows with suspicious mucus stains and funk coated pjs mutating in the clothes hamper. Half empty Vicks jars and empty Panadol blister packs complete the ensemble. Add in fragrance Eu De Sick, and I think I'm destined for cutting edge design magazines.

Luckily my supportive family have been on hand with comments like:

"Hope you get better Mum. Remember you need to drive me to the movies on Friday", or

"So we're on our own for dinner then?"

Where would we all be without the love and understanding of our families.

So I shall now head back to my snot encrusted pillows, wipe the eye boogers from my tender lids and dream sweet dreams of Captain Jack turning up on my doorstep with a box of super soft aloe vera soaked Kleenex.

Cheers
Michelle

PS Any tips for passing the time whilst caught in the less than tender embrace of pestilence would be greatly appreciated.

After looking in the mirror this morning I realise I am truly bringing sexy back, yeah!

The View From My Couch: Pampering

2011-06-29T12:22:00.000+10:00

I decided to spoil myself recently and buy some lovely Sohum body cream and soaps. It's the little luxuries that get you through the day. It was one of 'those' days, so I sent my offspring into the store with instructions, whilst I sat with my head in my lap in the car. The came back to the car with a big bag and a grin that would impress the Cheshire Cat. I opened up the bag to find a present, complete with gold ribbon. They had decided to tell the store assistant it was a present for their mum so she wrapped it up. They wanted me to have a special gift to unwrap. I didn't tear up, really I didn't. It was a bad hayfever day, okay.

Cheers
Michelle :)

Dysautonomia Australia: Get Excited People.

2011-06-24T12:05:00.001+10:00

Exciting news here in Australia for all Dysautonomia patients. There will soon be a website dedicated to raising awareness and providing local information on Dysautonomia. Content will include information on everything from the latest research, to finding local doctors, and navigating our disability system. The website will also provide content for our cousins across the pond in New Zealand.

I am proud to be part of a group of amazing women who are working together to build this website.

The website is currently under construction, but we are hoping to have a basic site up and running within the next month. With the site continuing to develop over the next few months.

Stay tuned for more updates here on the blog, FB and Twitter.

In the meantime you can access our FB support group, POTS & Dysautonomia Australia (and surrounds) here. Or read about our last get together here.

Time to raise the roof, or at least some awareness, locally.

Cheers
Michelle :)

When all else fails bake: Sourdough Yeast Beast.

2011-06-21T17:36:00.001+10:00

During my unplanned sabbatical I unleashed my creative side in many weird and wonderful ways. There's something about creating that is soothing to the soul. It doesn't matter what it is, but to be able to sit back and say "I made that" is better than sunshine on a rainy day.

Perhaps my most enjoyable endeavour during this period, was growing my own wild yeast and making my first loaf of fresh sourdough bread from scratch. I know, I know. I am walking on the wild side.

Surprisingly, I found that I wasn't alone in my slightly strange obsession with homemade bread. The requests have flowed for recipes. So by popular demand, I give you:

The Yeast Beast:

The basis of the Yeast Beast comes from a recipe featured on River Cottage Everyday, but has also been influenced by a recipe for a no-knead sourdough that I found on the delightful Miss Buckle's blog.

Living the fun life of fructose malabsorption (FM) I have been experimenting with different flours (Spelt, Kamut, Oat and Rye) as normal wheat is like Draino to my innards. Now before anyone jumps up and points out that Spelt and Kamut are in the wheat family, I know. However, they are easier to digest that common commercial wheat flours, and some with FM can tolerate a few slices of spelt and kamut bread. Plus sourdough is also supposed to be more easily digested. So whilst I and my youngest may be able to tolerate these, there are no guarantees that others with FM can do the same. It's all trial and error.

As you probably know by now, thanks to my Dorothy Shoes post, I feel that a glass of wine really is essential to the creative process. So buy a bottle of your favourite beverage so you can celebrate every step along the way. Growing your own wild yeast from scratch is really about creating new life. And just like children, your yeast will need to be fed on a regular basis and goes bad if ignored. But unlike the moody teenagers you offer to strangers on a regular basis (or is that just me?) your yeast doesn't talk back or leave rancid sandwiches to liquefy under their bed. So there are multiple reasons to celebrate with a glass of bubbly or two.

Now I am sure there are essential baking rules that I am breaking when I make my sourdough, but I am impatient and slow witted at times. Yet despite my stupidity and poor attitude I have managed to make some damn fine bread. Even the one that barely rose and which I subsequently decided was therefore a surprise foccocia was fantastic toasted with some chutney and chedder cheese melted on top. So I say, "To hell with the rules! Livin' on the edge baby" and just see what happens. So far, so good.

My Yeast Beast (aka sourdough starter) was of the spelt variety. Now I did read that you should therefore only make spelt loaves with it, but I didn't read that until after I'd used a mix of flours and it still worked well. Rules were meant to be broken people.

I should point out that the growing of the Yeast Beast is a long process. Given that I am at home all day and have no life, that wasn't a worry for me. For those with lives you may wish to stick with other quicker methods or go to the local bakery. I will say that I have found it a rewarding process though. And one of the best breads I have ever tasted.

Stage 1. The Starter. (7-10 days)

I know 7-10 days seems ridiculously long, but trust me it's worth it. Plus, that's 7-10 reasons to have a glass of wine! Every new yeasty bubble should be celebrated.

Now I will admit to some trepidation when I first started, as evidenced by my FB status updates:

"Day 1: Attempting my first sourdough starter. Hoping for yeasty goodness and not a mutant hell beast bent on world domination, but really it could go either way. This time in 7 days hopefully I will hopefully be supping on homemade bread and not loading my shot gun to take down the shrieking hell spawn in my kitchen. Wish me luck.
Day 3: The Yeast Beast is looking good. Though if a lifetime spent watching Sci Fi has taught me anything, you should never get cocky as that always leads to disaster and a world taken over by zombie dogs".

But it all went well and the world wasn't taken over by my mutant Yeast Beast, yet.

Ingredients:

Thumb sized piece of fresh rhubarb.

4tbsp Wholemeal organic spelt flour

Warm water.

Clean glass jar

Day 1.

Pour a glass of wine.
Put on some groovy tunes. I've been in a Sarah Blasko phase of late, so that's been my choice.
Go out to garden and grab a piece of rhubarb. Realise it's a nice day and sit outside for a while and relax. Eventually, recall that you were in the middle of creating the Yeast Beast. Go back inside and top up glass of wine which appears to have been affected by the mystery of evaporation.
Find a clean glass jar and fill with boiling water to sterilize. Pour out water and let cool.
In a bowl whisk the flour with enough water to make a batter similar to thickened cream.
Pour into prepared jar.
Drop in rhubarb and cover with plastic wrap.
Put it somewhere warm. My Yeast Beast was grown in my bedroom as it was the warmest room in the house.
Grab another glass of wine and do a little dance to celebrate your magnificent efforts.

They do say you can get bubbles within the first 24hrs, but with Winter here, it took a couple of days.

Warning: initially it can smell really foul, and resemble something that my dog threw up. But by day 4 I started to have the first hints of a yeasty smell. After which it went from strength to strength.

Day 2.

This is where the feeding begins.
Whisk in another 100gms of flour, with enough water to keep the right consistency.
It will smell bad. I recommend a glass of wine to recover.

Days 3-10.

Every 24hrs scoop out 1/2 the starter. You can toss it, but I just put it into the compost.
Add 100gms of fresh flour, with enough water to keep the right consistency.
Repeat this each day.
You will know it is ready for use when it has that sweet, yummy yeasty smell.
Throw out the rhubarb and you are ready for some baking.

I should mention that although the River Cottage recipe says to feed it each day, I, with my brain fog, forgot a day here or there and it was still fine. You can 'refresh' your yeast this way forever. Some Yeast Beasts are known to be nearly 100 years old.

Stage 2: The Sponge.

Yes I know, another stage. But it's worth it. Trust me. Would I lie to you? Leave overnight to ferment.

Ingredients:

2/3rd cup of your Yeast Beast.

300gm spelt flour

250ml warm water

Mix all ingredients in a glass bowl with your fingers.
It's very gooey, but kinda cool.
Cover with plastic wrap and leave overnight. I make mine about 9pm and leave it till about 10am the next day.
It's late so a nice tawny port may be more apt than wine to celebrate, but whatever suits. A warm glass of milk is equally good in the evening.
The next morning it will be bubbly, thick and sticky.

Stage 3: The Dough.

Almost there.

Ingredients:

300gm spelt, or a mix of other flours to make the 300gm. Go crazy. I don't measure and just put in a bit of each till I get the right amount.

10gm sea salt.

I have added a handful of pepitats and mixed GF grains at this point. No real measurements, just what felt right. Apparently you should soak them beforehand. Again I found this out after the fact, but my bread was still good.

Mix it with your hands again.
The dough should be fairly wet but you may need to adjust your flour or add extra water as certain flours absorb more water than others.
Now this is the point where my planning fell down. Kneading. Bugger. When your upper body strength is measured in wet tissues and yours wrists crack and roll, kneading becomes somewhat challenging. I swear I heard the dough snort laugh at my efforts.
You can use a dough hook on a mixer, but I persevered much to my bodies protestations. This is a really good point for another glass of recovery/pain management wine.
Knead for about 10 mins until the dough is silky smooth.
Put dough in an oiled bowl and cover with plastic wrap again.
Leave the dough to double in size. Can take a long time. With Winter temperatures I ended up leaving it till late afternoon (about 6-7hrs).
Knock back the dough by punching (very therapeutic) ready for proving.
I put a flour covered tea towel in a large bowl on which I put the dough to prove. I have also sprinkled the tea towel with oats and pepitas.
Leave to double in size again.

Stage 4: Baking.

I have used a few methods at this stage but the one from Miss Buckle has given me the best results. I use a cast iron camp/dutch oven in my normal oven.

Heat the camp oven in the normal oven at 200C (Miss Buckle says 250C but I found I didn't need to go so high).
I put a piece of baking paper in the bottom and scattered more seed over that.
Put dough in camp oven and top with more seeds.
Put lid on and bake for half hour.
Take lid off and bake for another 15mins.
When golden and the bread sounds hollow when tapped, it is ready.
Take out and let cool on a wooden board for at least 20mins before carving.
A glass of wine and the busting of some moves, are definitely required to celebrate your creation.

(1) spelt and oat soudough, (2) kamut, spelt and oat sourdough

Then pig out on your baking masterpiece until a sourdough coma ensues.

I found the whole process to be really rewarding. Growing my yeast from scratch using the wild yeast spores in the environment. Knowing what is in the bread. Seeing that final product. Really I am easily pleased.

Happy Baking

Michelle :)

The Sourdough Companion is also a good source of information and ideas.

Uberneuro: The good, the bad, and the new party trick.

2011-06-19T18:51:00.001+10:00

After much trepidation, nausea, and frequent pee stops, I managed to get to, and survive, my visit to the uberneuro. I don't mind admitting I was a wee bit worried in the hours, okay days, preceding my appointment. Would he think I was a nutter? Would he think there was nothing wrong? Would he find something terribly, terribly wrong? Would he be the wearer of a colourful bow tie (the international symbol for "I'm a God complex arsehole. All shall bow to my awesomeness")? These are the things that go through your mind before the big appointments.

It's ridiculous that after all this time I still worry that I might end up with the nutter tag. I know I have a genuine medical condition. I've had it verified by a number of specialists. I have the hard data in the reports. Yet still that little voice in the back of my mind says, "it's all in your head, loser". Logic and fact be damned. It's the same little voice that took up residence after my horrendous and soul destruction visit to my local condescending and incompetent General Physician when I first became sick. Every time I think I have finally succeeded in getting rid of that voice, it raises its ugly little head once more. The King Cockroach of the little voices in my mind.

That's one of the joys of having an invisible and unknown illness. What others can't see they doubt. Then if you're especially lucky, they are kind enough to share their doubt with you. One doubt filled comment. One judgmental look, and all your confidence crumbles. Maybe they are right? Maybe it is just all in my head? I'm not quite sure what I'm supposed to look like to prove I'm ill, but I still feel like I should somehow attempt to look the part. I like to pride myself on having a pretty good attitude about this whole illness business, but times like this it all comes flooding back and all those insecurities take over.

Two and half hours after I walked into the office in the dingy old section of the hospital, I finally had answers. All the months of waiting actually paid off. That doesn't happen very often. So many times I have waited and waited only to have my piss poor health confirmed, be told I was unique, that they have no idea why, and that there were no treatments to offer me. Time well spent, not. Always followed by a bill that required the offering of my first born, or left kidney to pay.

It was the longest and most thorough neurological appointment I have ever had. I was poked and prodded, and even bared my naked bum to his face (thankfully no inappropriate flatulence, though for some reason I felt a sudden desperate need to vacate my gasses as soon as I dropped my undies).

I was taken aback by the fact he actually asked my opinion and made jokes. Who was this man with the bedside manner? Surely he cannot be a member of the neurological profession? The words 'professor' and 'neurology' are never found in the same sentence as 'personality' and 'humour'. Well, unless the words 'lack of' are involved. He was a rare breed indeed.

Mr Grumpy found great humour in my body's incompetence, chuckling away to himself through out. Is it one point or two? Is it hot or is it cold? Can you feel this pin I am sticking in your stomach? The physical equivalent of a Mensa test. Unfortunately, Mensa will not be calling anytime soon. I fear my body is not even fit to carry their pocket protectors. In fact, I'm pretty sure that the nerds would give me a swirly, and laugh derisively at my inability to identify prime numbers. I did find out that my right-side is far more intelligent than my left, which may have an exciting career ahead as a speed hump.

So what does it all mean? My neuropathy is spreading, and spreading faster than I thought. I think back to early 2006 and I was relatively well. Then my ANS went into melt down. A few years ago the toes on my right foot started burning. Then it was temperature sensation, pin prick, reflexes, burning my hands, the list goes on and on. (I've written about my various progressing ANS symptoms so I wont bore you with those here). Now I am uncoordinated and weak as a new born kitten. Fun times. Most surprisingly I now have a large patch of my stomach you can stick a pin in, and I simply don't feel it.

He confirmed that my version of Bob is not related to a virus as first thought, but rather an underlying genetic neuropathy. This isn't really surprising. I've never brought into the virus argument, it just never fit with what I was experiencing and always felt like a red herring. He agreed and said my presentation and progression were not reflective of a viral aetiology. It was nice to finally get an answer to 'why'. There's something reassuring about an answer, even if that answer is progressively dying nerves and all that means for the future. It was equally nice to have things like MSA and a variety of Parkinsonian disorders ruled out.

In the world of possible answers, it's not really the best answer I could have received, that would have been Bob is due to A, if you take B you will be cured. But it's also not the worst. It's an answer and frankly, that's a relief. Uncertainty is a far worse diagnosis. Uncertainty is a shadow being, menacing, and waiting to pounce. It leaves you floundering, not knowing where to go or what to expect. A diagnosis, any diagnosis gives you legitimacy. Legitimacy in the eyes of others, and more importantly, for yourself. It also gives you something tangible to deal with, and that is priceless.

I will admit to a moment of "why couldn't it be a tumour. They could cut that out", because that's how your mind works when the news you get isn't all beer and skittles. A tumour becomes a viable and more preferable option in comparison to diagnoses that involve the words 'progressive' and 'nerve death'. Sounds crazy when you say it aloud and I know that many would be shocked, but crazy is order of the day over logic in these situations.

I still have more tests ahead to clarify if I am dealing with crap or super crap, not that it will change my treatment options greatly. It's all still symptom management rather than treatment. The dead nerves will continue to be dead nerves and more will join the party. And really, the last thing I need is some form of reanimated zombie nerve roaming around my body. I've watched enough bad scifi to know that kind of thing never works out well.

At any rate there is no one to do the biopsies I need done until next year, so my plan is just to sit back and not worry about the possibilities until they crop up. I figure, it is what it is, and I can't do anything about it so I'm not going to waste my time worrying about 'what ifs?'.

Besides, I now have a new party trick, the human pin cushion. Maybe I could try out for The Dudesons as the new human dart board, or join one of those freak shows lying on a bed of needles. Oh the possibilities.

(Though I'm not sure the outfit goes with my new found sense of style)

Cheers
Michelle :)

Time to sing my favourite song and break out that old bottle of butterscotch schnapps.

Unplanned Sabbaticals

2011-06-11T14:32:00.000+10:00

Well hello there dear readers. Long time no see. How have you all been? Hopefully your days have been filled with exciting adventures involving penguins and pirates, and a swarthy guy named Big Al. Or at the very least, good coffee and large amounts of cake. Or maybe I am still sans brain and typing complete nonsense, who knows? Not me obviously.

It seems I took a wee bit of a blogging vacation the last few weeks. Like all the best adventures, it wasn't planned, it just sort of happened. One day I was blogging away with wild abandon, and the next thing I knew my poor little keyboard was sporting a layer of dust and dog hair. So sorry dear keyboard. Stop with the puppy dog eyes I feel bad enough already for neglecting you and my lovely, stunningly attractive, and highly intelligent readers.

Bad blogger. Bad.

I shall now punish myself by watching Justin Bieber's ProActive ad on loop for an hour. Not sure if I'll make it through the whole hour, and there is a huge chance I will develop a fugue after such a traumatic event, but it's what I am willing to do to atone.

So what exciting adventures have I been up to during my unintentional vacation? Well lets see.

I've attempted craft and ended up trying to wash the foul taste of spray paint out of my mouth. Tip for the day: don't sit downwind when using spray paint.

I've attempted baking and fallen into a blissful sourdough coma. Who knew so much pleasure could be derived from growing your own Yeast Beast? I've spent hours marveling at my bubbling fermenting brew.

(I am the bread queen)

I've weeded a one metre patch of path only to discover that my youngest dog, Freyja, has decided that this is the ideal pee spot for the past few months. I have since spent my time searing my nose hairs to try and clear the smell of old dog pee from my nostrils

I've attempted a painting only to cover my wall, window, and unsuspecting dog with paint from a flying paint brush courtesy of a madly twitching hand. I have discovered that my creative process involves swearing and insulting the paints mother. I'm sure that's how all the Great Masters worked.

I have been singing Olivia Newton-John tunes at physio and been lapped by my grey haired nemesis once more. Watch out old man. Pass me once more with that pitying smile on your face and you may find my walking stick imbeded in your silver-haired butt hole.

I have braved the feeding frenzy over the carcass of the local Borders bookstore. Swearing and trying not pass out when all the tills stopped working at once in the stifling hot store. Thankfully, I had a sub in the form of an angsty teenager who took over line duties and was then scared for life by discovering his mother was buying Anais Nin's Delta of Venus and Vladamir Nobokov's Lolita.

I have frolicked/stumbled in the snow in t-shirt and thongs much to the amusement of other locals and their 15 layers of clothing.

(Was a wee bit cold apparently)

Most of all, I have tried to ignore my petulant body and tantruming Bob, and follow the Little Engine That Could's philosophy of "I think I can. I think I can". Whilst my success may have been measured in nano-bites, it was nice to live in a land of unicorns, kittens and lollipops for a while.

As you can see I've been living on the wild side these past few weeks. Watch out Bear Grylls, I'm coming for your job. It'll be Rusty vs Wild, minus the pee drinking.

Normal posting shall resume shortly.

Cheers
Michelle ;)

Busy times in Rusty Town.

2011-05-25T14:49:00.000+10:00

Well it's been a busy few weeks here at Château Rusty. I've had a birthday, shopped till I dropped, a new haircut, danced the light fantastic, and started back at out-patient physio. The old brain has been a bit overwhelmed, as has my body, hence the lack of posting. Hibernation has been order of the day.

I did manage to pump out one post over at Studio 30 Plus where I was honoured to be a featured blogger. I'm sure I have done my mamma proud by using the words "sucked donkey balls" repeatedly in a post. I can see her sending copies to all her friends at the gardening club.

The lovely Phoebe aka Lady Melbourne has put up her post about our shopping day for the competition I won. I will have to say it was one of the best days I've had, and both Phoebe and Jo, my stylist, were truly lovely. I went in as a shopping tragic and left holding firmly onto my newly rediscovered mojo. A huge thanks goes out to my gorgeous friend Kerri who came along for the ride and pushed me around in a wheelchair at the Westfield Shopping Centre for 3 hrs. And Mr Grumpy, who took the day off work to drive me around town. I will post about the day and pop up a few extra photos in a little while.

Well it's time for me to head back to the cave for some further hibernation.

Cheers
Michelle :)

The Ministry of Silly Walks

2011-05-09T17:01:00.000+10:00

Walking shouldn't be hard, should it? If my eldest could walk at 9mths, surely I should be able to walk with ease at 37. Mind you, I am walking like he was at 9mths. Furniture and wall walking my way through the world. It's a good look. What is cute and gives rises to "oohs" and "ahhs" and "who's a clever boy" at 9mths, is not met with the same enthusiasm by the general public at age 37. Instead I am the recipient of 'those' looks. And little whispered comments, which seem to include the word 'drunk' quite frequently. If only, judgmental old biddies. If only.

These past few weeks I have been walking like a drunken sailor, minus the barrel of rum in my belly. I have found that my gait is getting wider, what in the old work days I would have thought of as a classic alcoholic ataxia. Only I have had hardly enough alcohol to pickle an olive, let alone my cerebellum. My muscles have been uncooperative little buggers, and my weakness increasing. They simply feel 'wrong' when I walk.

Can't wait to give Uberneuro that descriptor when I see him in June. A patients inability to explain their symptoms was always a frustration back in my work days. I used to hand them a sheet of descriptors to pick from when they were finding it particularly difficult. Maybe I should see if I can find it again, to use for myself. Damn, that's a depressing thought.

I don't really know why it's come to a head lately. Maybe it's just the effects of my recent back issues tipping things over the edge. I'm not really sure. Given that my pulse pressure (systolic minus diastolic) has also been in the toilet I think Bob is getting a bit frisky in his old age. When 40 is optimal, 30 is considered okay, 20 is considered shock, and all I can muster is a pissy 9, well it's not a particularly good situation. It could just be a phase, and I'm truly hoping that's the case. All jokes aside, the past month or so has really been hard and I've had about enough.

(Was lying down at the time I recorded this)

My neuro symptoms have been getting worse overall. I tick and shake, and have muscle fasciculations up the wahzoo. Managed to burn myself on the stove again thanks to the reduced feeling in my hands (good old SNAFU), which is always fun. I asked my youngest if I had burnt my finger and he rubbed it, taking off a layer of skin. Apparently what looked like flour was a wee bit of charred skin and we both had a bit of an "oh shit" moment.

Luckily I finally have my appointment date so fingers crossed Uberneuro will have a clue. I used to take classes with him back in the day so I am confident he's the go-to-guy when no one else has a clue. But seeing someone I knew on a more professional basis will be uncomfortable to say the least. I know his current Neuropsychologist quite well. I was on our state professional board with her, so I'm really hoping I don't bump into her. It's moments like those that I really feel really self-conscious and it all gets a bit confronting. Ugh. That's all way to serious and depressing. Will now play my happy song in my head and settle down to a nice bowl of denial.

I have finally taken the plunge this past week, and am now the less-than-proud owner of a walking stick. I have put it off for a very long time, despite having balance issues on and off for quite a while (okay couple of years). I knew I needed one, but my mind screamed "NOOOOOOOOO........" every time I saw one. Now before anyone starts saying, "well you have to be practical Michelle", you should also know I will beat you to a pulp with my stick if you even start to go there.

People need to realise that:

Logic and Chronic Illness are not friends.

They're not even casual acquaintances.

In fact, if Chronic Illness were to serve Logic a drink they'd probably spit in the glass and smirk, whilst they watched them drink.

It's a mind space that you are either in, or you're not. There's not a lot of grey. Logically I have known that I needed some form of walking aide for well over a year. But every fibre of my body has rebelled against the idea. It's a little similar to the feeling I get whenever I hear that some damn celebrity is given a token doctorate by a university because they can memorize lines and cry on cue; it just makes me a tad stabby.

I had a similar predicament with the shower chair. I have a shower chair now, and I love it. It means I can shower without face planting. It means I can have the water above tepid, and stay in for longer than a nanosecond. And it sure as hell beats sitting in the bottom of my manky shower. All good things. But the lead up to getting a shower chair was not paved with lollipops, kittens and rationality.

Buying a shower chair represented tangible proof that I was disabled. Ptooey! I spit on 'disabled'. "That's not me", I shouted whilst raising my fist in the air in defiance. Not that anyone was listening. Except my dogs, and they just looked confused. It certainly didn't help that they were sold in the 'Aged Care' section of the store. After a long period of denial, ranting, head shaking from a long suffering Mr Grumpy, and traumatising my dogs, I purchased a shower chair. There may have been some pouting and swearing involved. I may also have forcefully thrown it at my shower, rather than going for gentle placement. Whatever.

I still remember sitting down for the first time and thinking to myself,

"I'll show them. It wont make one bit of difference. I'll be right and they'll be wrong. And I'll say see, see, SEEEEEEEEEE I was right, losers".

But damn it. It was better. And easier. And they were right. And I was wrong. Bastards. See the extreme lack of logic involved? I think I should be studied. Or at least better medicated.

The reality is that I am now disabled. And at some level I acknowledge that. But there is a very large irrational part of me that continues to rally against that label. A label that if applied to others holds no such power. I spent my professional life, working with people with various disabilities. I always saw the person and not the disability itself. I helped to plan ways to maximise their independence, including the use of lifestyle aides like shower chairs. I know the theory. I've seen it in practice. And yet I still rally against it all. As I said, logic is not my friend.

The acquisition of a walking stick has fallen into the same category of rabid illogical thought processes. No doubt there will be many other items that will flail beneath the sword of irrationality, before I finally reach the point of acceptance and pull my head out of my own arse and acquiesce.

I am still on the lookout for a groovy walking stick, is that an oxymoron? I'm not sure. I really want one of those classy silver handled, black ones that look like they should be in an Agatha Christie movie. But will have to save up my pennies. I do feel as though I should be wearing a top hat and a monocle when I walk with my current stick. And saying things like "tally ho", or "jolly good show old chap". Or at least break into a song and dance routine complete with jazz hands and spirit fingers. But baby steps first. Coordinating, two legs, a stick, a handbag and breathing is still troublesome at present.

(It's grannified but it works)

I have used my stick as a light sabre, complete with sound effects. And as an improvised guitar whilst listening to AC/DC. It has also proven a great tool to poke cheeky children.

I did see a fantastic sword cane (think Crispin Glover's, The Thin Man in Charlies' Angels) which I want very badly. That way I can stab people who tell me it's greatI finally purchased a walking stick. And muggers beware, this disabled, uncoordinated chick would take you out. It's all very James Bond. Maybe I can also get one of those bowler that cuts off peoples heads, like Oddjob's in Goldfinger. Now there's an idea. I think I'm finally starting to come round to this whole walking stick idea.

Cheers

The dapper Michelle ;)

The Ministry of Silly Walks, Monty Python (1970)

Lady Melbourne, Westfield, and Shopping Extravaganzas.

2011-05-08T15:51:00.000+10:00

Once upon a time I was fashion girl. I loved shopping. I loved looking for the perfect shirt, skirt or, my greatest love, shoes. Unfortunately my Carrie Bradshaw taste was accompanied by the salary of an allied health worker in the public health system,with a husband, two kids and a mortgage.

Still, I was undeterred by my meager finances. I was bargain queen. I could smell a 70% off sale a mile away and spot a red 'sale' sign at 100 paces. I could mix and match with ease. I would drive across 10 suburbs to get to a great op shop that was renowned for it's treasure of vintage pieces. I always carried my wardrobe contents in my mental filofax. I knew exactly where a particular piece of clothing or accessory would fit. I could shop for hours and come home with only one piece, but it would be the perfect piece, that slotted in seamlessly with the rest of my wardrobe. My own fashion version of Tetris.

I would frock up for work each day in a killer pair of heels, carefully selected vintage or classic inspired outfit with the perfect accessories.

Then Bob came on the scene.

Slowly, bit by bit, my fashion sense went the way of my health. Part of it was the exhaustion. I simply didn't have the energy to do it. It was a case of practicalities. Ensuring adequate coverage for everything that needs to be covered in public became the number one priority, anything more was simply in the realm of fantasy. Mind you that didn't stop me from going to work with my top on backwards, or forgetting to iron half my shirt. If my hair was brushed I was pretty happy, as using a hair dryer was just too much effort. Makeup went out the window except for a quickly applied bit of lippy. I ended up with a wardrobe filled with slacks and shirts made from that hideous no-iron material. One less step to worry about in a world where energy was in short supply.

When I stopped working I gave up on fashion all together. I slipped into a funk that if I'm honest, was quite comfortable. There were small flashes where I would find a moment of care and put in some effort but they wee few and far between. When your permanently exhausted it's hard to care. With Bob my body shape also changed. I really have no idea what size I am now, all I know is that most of my pre-sick clothes nolonger fit. I don't really want to know more than that.

Now I wear the uniform of the sick, PJs and old trackie dacks (see below). Bugger brushing may hair, whip it up in a hair band and I'm set to face the world. When you're stuck at home for the most part, why put in the effort? I'm pretty sure my dogs are ambivalent to my permanent fashion faux pas. My only concession to personal grooming these days is my bottle of Chanel No. 5 that sits by my bed. A squirt every day to remind myself that once life was different.

(Abandon all hope ye who enter here.

2yrs post leaving work. Looking chic in pasty sick,

with hideous dressing gown, unbrushed hair, dog chewed couch,

and large Thor sized accessory).

(Mixing it up with old trackie dacks, which I still wear,

and hair pulled back in a hair band, with small Freyja puppy accessory)

(Ooh look, more pj's and another dog accessory, I have it going on.

Note carefully crafted bed hair and pasty chic look)

(And yet another pj, dressing gown and dog shot. I am serious need on the fashion front.

Good lord, even I can't believe my lack of style.)

Lately, I've been thinking that I need to put in some effort. My eldest monkey boy is doing his deb with his best girlfriend and I really want to not look like the bride of Frankenstein's frumpier, pasty sister, when we do the mum and son dance. PJs are simply not going to cut it. Bob's not going anywhere and I really need to find my mojo again. With his recent escalation I really need to put some serious effort into locating my elusive fashion sense once more. (Though despite my stupor even I know that jeggings aren't pants, and that orange spray tan is only acceptable if you are an Oompa Loompa. Maybe there is a remnant of my fashion sense left after all).

Whether it's kismet or fate or whatever, but one of my favourite fashion bloggers, Lady Melbourne, (Phoebe was the inspiration for my Dorothy Shoes post last year) ran a competition for a $1,000 Westfield shopping spree with a stylist. And,

I WON!!!!!!!!!!!!!

I know. I can't believe it either. I ran around (well stumbled around) the house yelling "I won", and doing a happy dance that may or may not have resembled the famous Elaine dance from Seinfeld. I then took my laptop out to Mr Grumpy to ensure I wasn't delusional from lack of O2 or in the midst of a super brain fog. But it's true I won. My name was right there on the computer screen. I have had emails from Lady Melbourne herself, and now have a pair of Westfield shopping centre gift cards in my hands. No need to pinch me, it's not a dream.

Phoebe has been lovely, managing to squish me in on short notice before Monkey Boy's deb on the 14th so I will be all gussied up for the big night.

So this Wednesday, May 11th, which just so happens to be my birthday, I get to meet Phoebe, shop with a stylist and have the best birthday ever. My gorgeous friend Kerri is coming along to help me out, carry bags or piggy back me at need. I don't care how badly behaved Bob is on the day I am going to shop till I drop, I don't care if I end the day being felt up by a pair of burly ambos or staggering like a drunken sailor and scaring small children and grey-haired grannies. There will be fitting rooms, coat hangers, seams, hems, buttons, zippers and most importantly, fun.

And just think, with a stylist I will actually have a chance at avoiding the dreaded Mutton Dressed as Lamb Syndrome (at nearly 38 I am classed as high risk) or a bad case of What Was She Thinking Disorder. Because lets face it $1000 on clothes can be spent wisely or very badly. I think Princess Beatrice has taught us all a lesson in that money cannot be trusted to purchase style.

(This must be avoided at all costs)

I will post photos of my new fashionable self after the big day and there will be no pjs or trackie dacks in sight!

Cheers
The soon to be re-mojoed Michelle ;)

A Word From Our Sponsor XV

2011-05-06T14:15:00.001+10:00

With my heath in the proverbial toilet, posting has been a little slack of late. I do apologise, but simply standing, especially when combined with the tricky act of breathing, has been challenging the last few weeks.

In. Out. Stay upright. In. Out. Stop swaying. In. Out. Grab wall. In. In. In. Oh shit........

Fun times.

It appears that Bob was feeling a little ignored and he decided to throw a tantrum to get my attention. It's worked. All that screaming, foot stamping and dish throwing has been a little hard to ignore. If only I could lose myself in a tasty bottle of mummies little helper, but alas that is off the cards at the moment. I am already doing a fair impression of a slurring, staggering drunk, one little sip and I'll be on my ear, or singing Ke$ha songs.

I've been trying to catch up on some of that pesky blog administrative stuff that I always put off. I've finally gotten around to writing an About page and added a Contact page. Please let me know what you think. If it makes sense. If I look like a loon. Or have created a grammar and spelling abomination that would make a unicorn cry.

Still working on updating my Dysautonomia Blogs list so if anyone has a blog about Dysautonomia and wants me to add it in please leave your link in the comments.

In honour of Mother's Day I have re-edited an old post I did for 12 More Pages back in 2009, on combining motherhood and chronic illness. It's easy to feel guilty as a mum for all the things we can't do for our children but it's time we gave ourselves a break and realise what's important.

Hope you all have a fantastic Mother's day.

Cheers
Michelle :)

I've been singing this a lot lately. I'm thinking it would make a good Dear John song for Bob.

Basement Jaxx feat Lisa Kekaula, Good Luck, (2003)

Basement Jaxx - Good Luck on MUZU.

The View From My Couch: Tiny Umbrellas.

2011-04-30T18:57:00.002+10:00

Well it's been a rather rough couple of weeks on the health front (hence the lack of posting). Sad that I'm becoming rather sentimental about the 'good old days' of normal Bob symptoms. But what's a girl to do? Break out the tiny umbrellas of happiness, that's what. If I'm going to walk like I just sculled a jug of margaritas, I might as well at least have the mini umbrellas. And they are so pretty. So here's to glasses of water, rimmed with salt and a cheery little umbrella on the side. Though, a little medicinal tequila wouldn't go astray.

Twenty Years

2011-04-19T23:13:00.001+10:00

Twenty years ago today Mr Grumpy and I went on our first date.

I've known him for more than half my life.

It's hard to wrap my head around that.

Then.

Nervous laughter. Mumbled words. Furtive glances. Attraction. Uncertainty.

20 years would have seemed laughable to us both.

Now...

His presence is comfort.

No need for fancy words. No need for overt demonstrations of love.

Silence is embraced, not feared.

A simple touch. Our fingers entwined. His hand on my leg. My head on his chest.

He laughs at my jokes and I at his.

Even though we each know the others repertoire by rote.

We are both wider.

Grayer.

Saggier.

Youth has been replaced by 'character'.

Yet when he looks at me I'm still that 17-year-old girl, and he still that 18-year-old boy.

There are no words worthy to describe the bond created through those 20 years.

It is a creature born of time.

Of anger. Of tears. Of laughter. Of love.

Thousands of fibres intertwined.

No beginning. No end. Ever changing.

I read an article recently about a Sliding Doors life. About making choices too early. About whether we would make the same choices given our time over.

As I write, there is a single, long-stemmed, red rose sitting in front of me.

20 years later, and he still remembers that first date.

There is no choice to be made.

Michelle :)

Copyright.

2011-04-10T14:39:00.001+10:00

Being ill sucks. It really does. There's no two ways about it. There's no sugar coating the joy of having an 80-year-old's body, when your only 37. Doesn't matter your poison. Could be Bob. Could be MS. Could be cancer. Could be one of the other bazillion diseases, disorders and syndromes that pop up just to lay a large steaming nard on your life. Nosology doesn't matter. The result is the same. Life turns upside down. And where once you were tripping the light fantastic, you are now scrambling to recover your dignity and equilibrium after face planting in a big pile of the universe's fecal matter.

(Sometimes life just doesn't turn out quite like you imagined)

And when you're lying in that large pile of turds you can do one of two things. You can cry and gag and try not to barf. You can woe is me. And convince yourself the universe hates you. Or, you can laugh. Big belly laughs. Guffaw and snort laugh, until you have tears running down your cheeks.

That's not to say it's not okay to cry and swear at the universe. I've been there done that and got the crappy t-shirt. Grief and Illness are bound together. You can't have one without the other. You can't find the funny, or take back ownership of your life, until that grief is acknowledged, embraced, loved, slapped around, purple nurpled, and put in the naughty corner.

And finding that funny in the most unfunny of moments is all about ownership. About copywriting your experience. About taking back control. About saying this is mine, it belongs to me. I may choose to share parts of it with you, but this is uniquely mine. And I don't really give a crap what you or anyone else thinks.

Those who aren't, or haven't been ill often find my reaction to being sick a little hard to understand. Hell, even most doctors don't get my sense of humour. I still remember the gynecologist who whipped out my uterus back in the day going on and on about the fact that I would no longer feel like a woman, and all I could think of was this Monty Python sketch from The Life Of Brian. Was my reaction wrong? Should I have been more serious? Should I have felt less womanly? Should I have ascribed to his belief and spent the rest of my life grieving and being 'less'? As far as I was concerned he could take my dysfunctional and disrespectful womb and boot it up the arse. I've never missed it. In fact I celebrated it's removal. Given the comically perplexed look on his face, I don't think he quite understood that.

And so it's been since Bob came on the scene. I've done the tears and the woe is me, and frankly it's exhausting. Even I get sick of myself when I get like that. I could sit back and let it consume me. I could hand over title to my body and my life and sit back in a miserable state of perpetual helplessness. A seductive choice at times. That would be my right to choose. But it's just not me.

If I were to sit down and list off every broken bit in my body, if I were to look at my ever increasing list of diagnoses, if I were to look at my ever decreasing functioning, my ever increasing pill collection, 'tis all rather depressing. The reality is that I can't change what is happening physically, I have no control over that. My body will continue to go along on it's own merry way, and I'm just the unlucky side kick along for the ride.

But I can control how I respond to what my body is doing. I can decide how I am going to deal with what I face on a daily basis, and the rather scary unknown that lies before me. I am going to choose how I experience this. I am not going to act my illness, and no doubt I'll be one of those old ladies who doesn't act her age.

It's not about being brave or courageous, those words are overused these days. 'Bravery' and 'courage' should be reserved for those who run into burning buildings to save others, who risk their own lives to save those who can't save themselves. Instead, it's about making a choice on how to live your life. It's about deciding to change your perspective and not letting anyone else, even your own body, dictate how you experience your world.

Illness takes away choice, it leaves you powerless, or so it would like you to think.

Those who have faced, or continue to face, illness know the power of perspective, the power of laughter. Of finding the funny in the most unfunny of circumstances.

I will live my illness how I choose to live it.

Not how anyone else tells me I should live it.

This experience is my own and I will make of it what I will.

I will shape it and mould it.

I will alter it at need.

It is my work of art.

I will tell inappropriate jokes. I will shock my doctors and those around me with my supposedly unconventional attitude. I will put pink glittery feather boas around my puke bags. I will name my doctors after Motley Crue songs and ask for my angioplasty balloon to be shaped like a unicorn. I will make totally inappropriate glittery red Dorothy Shoes that I can never walk in. I will laugh at the fact that my boobs are a garden or, that more recently, my lady garden has decided to grow a rather scary weed. And I will not apologize to those who think I should be more dignified and serious.

Each of us must make our own choice as to how we deal with the cards we are dealt.

Each of us needs to ignore those who throw the word 'should' in our face.

Despite Bob and his ever increasing possee of abnormal peeps, this is still my life.

And I will live it as I want.

Michelle ©

Alive and Brilliant, Deborah Conway 1993.

I will now impress you all with my incredible impersonation of a crazy woman.

2011-03-28T14:10:00.001+11:00

Well I've done it again. Broke out the camera and tried to be coherent for more than one nano second. Why do I do these things? Given that fact that Eunice is out on indefinite stress leave, you'd think that my nearest and dearest would intercede on my behalf and remove the camera from my delusional hands. But no. I'm starting to think they find the whole thing rather amusing. Our own familial form of the American Idol auditions where tone deaf fools get up and sing Celine Dion abominations, completely unaware of how truly crap they are.

Through my filmic endeavours I have discovered that I have a fondness for the word 'crap', that I forget to brush my hair, and that my crazy eyes are now accompanied by crazy mouth. I think my next craft project will be to create a dapper tin foil hat to complete the ensemble. Though I will have to borrow some cats from my neighbours as two dogs don't really give the right crazy vibe.

So I give you my manifesto of madness.

As my creative endeavours did leave me a little the worse from wear (ie, in excruciating back pain and unable to move from the horizontal) my delightful children brought me a glass of wine and a pink bendy straw. I am raising them right people.

(love my kids)

Cheers
Michelle :)

For those who don't know the joy of Faith No More, have you been living under a rock? Here is Falling to Pieces 1990. Brings back memories of Year 12 parties in dodgy backyards, a bucket mix of miscellaneous alcohol, and a whole lot of teenage angst. Good times.

A Word From Our Sponsor XIV

2011-03-16T14:22:00.002+11:00

Alternative title: I Am the Walrus, Koo Koo Achoo.

Shoot me now. Really, please do. Or at least knock me out for a fortnight and wake me up when the world is a rosier place. Next to the recent long list of horrific natural disasters that have happened around the world, my own grumbles appear petty. But hey, that has never stopped me from voicing them. I'm sure others want to hear my long list of woe is me. Particularly as I've been on strong pain meds for the past week. If I break out in a tortuous rendition of Lucy in the Sky with Diamonds, blame the meds and look away quickly. When combined with my delusional belief that I am undiscovered singing sensation thanks to a religious devotion to American Idol, it's not going to be pretty. I believe "hot mess", is the term being used by the kids these days, and may best describe my current level of decrepitude.

In time I will regale you with my exciting exploits of the past week. Be warned it involves my lady bits, a radiologist I call Igor the Inept, who makes Peter Garrett look competent (sorry, inside Australian political joke. Peter Garrett in Midnight Oil equals musical gold. Peter Garrett selling his soul to the devil to become yet another useless politician equals horror movie), and Mr grumpy adding adult jokes to an ABC book he was reading to a complete stranger's two-year-old whilst I tried to not pass out in my local ER. Good times. Though the fact that the little boy kept yelling "mummy" every time Mr Grumpy got to "E is for elephant", still cracks me up.

(Do not let this man near your ladybits)

Long story short, what should have been simple pelvic and hip scans has led to popped discs in my back, a popped right hip and and introduction to the delight that shall for ever be dear to my heart, Oxycontin. I have spent the past five days flat on my back, trying not to move, whilst my three slave boys have brought me chocolate, drinks and taken care of household chores. I think they realised it was an above average amount of pain as I actually requested an ER trip, when normally I would rather poke my eyes out with a rusty spoon and sit through the entire movie ~~travesty~~ franchise, that is Twilight, than go to the ER.

I have now added the joy of trying to pass petrified pain med poo, and my youngest monkey boys pestilence (common cold to him, ebola to me) to the mix. Uncontrolled sneezing and popped discs do not good bed fellows make.

I am still not up to date with responding to comments, messages or emails. Part of that is due to FB which is trying to drive me to drink, by not letting me access my messages. If you'll get onto that Mr Zuckerburg, I'll much appreciate it. And part due to the fact I break out in tears every time I read the lovely responses to Processing. Stupid drugs making me teary.

Hilariously my friend Kerri has given me a copy of a speech she is due to present at the end of this month, to proof read. I'm not sure if writing "I am the Walrus" 2O times in the margin and drawing pictures of unicorns in left over dark chocolate Lindt bunny crumbs is going to help, but damn it, aint no mountain high enough, or pain meds sending me gaga enough, I am going to proof read this talk if it kills me. That's friendship people. Kerri is a tireless advocate for MS patients here in Australia, so the least I can do is add my cracking intellect to her talk.

(Bob + pain + pain meds + passing rock hard number 2s + pestilence = ......)

Okay, time to go and pass out in a corner somewhere. I do highly recommend pouring eucalyptus oil in the bottom of your shower, turning on the hot water, closing the en suit door, lying on the tiles and inhaling the fumes, whilst whimpering in pain. Not sure if seeing Ringo Starr sitting cross legged on the edge of my toilet, drinking champagne out of Thomas the Tank Engine's head is a good sign. But his voice is rather hypnotic and he had some really good ideas on how to de-mould my tub.

Ugh!

Do-over week please.

Koo Koo Achoo my friends.

Michelle :(

On a serious note: please give to one of the many funds for the survivors of the Japanese earthquake and Tsunami and the ongoing nuclear threat. I was lying in the ER watching it unfold live on TV and I still can't wrap my head around the size of this tragedy. My heart goes out to them and all those around the world touched my natural disasters over the past few months.

I do find singing dramatic 80's tunes as loudly as possible does make me feel better. This (1982, original filmclip) one of my favourite power ballads. Sung many times into my hairbrush as a child, sung loudly in the car to the horror of my children and their friends, as an adult. "Turn around bright eyes. Turn around bright eyes. Turn around", I hear you Bonnie. I hear you. Children of the 80's sing it loud and sing it proud.

1984 live at the Grammys. Bonnie Tyler, Total Eclipse of the Heart.

The View From My Couch: Healing Places

2011-03-10T11:12:00.001+11:00

It's not often I can say this, but I love my GP (General Practitioner) and her medical centre. I know, me giving a doctor a shout out, weird hey? But I do. When I see her it's never a stress. She goes with flow. She listens. She's helpful. And, perhaps most importantly she has a sense of humour.

(If you have to be sick at least be sick in a picturesque place.

It's quiet except for local wildlife, and filled with every hue of green imaginable.

There are even fish ponds and seats outside.)

Case in point. I rock up on Tuesday for my appointment, green, shaking, just a little wobbly. The counter staff don't bat an eyelid. They just take me out back. Hand me a puke bag and let me lie down in the quiet treatment room. No hassle. No stupid questions. No, how's your mother? My GP walks in laughs and says well "that's not how my patients usually great me" as she spies my legs elegantly shoved up against the window frame. She didn't make a big deal about my shaking as I stood up. She didn't make a big deal when I took an hour and a half to put on my thongs (shoes not butt floss underwear), thanks to uncooperative shaky feet. She gives me the option for lying down in her room but doesn't push the point.

(It just doesn't feel like the road to a doctor's office)

She's helpful. She knows my case and also asks about my son's current issues. When she orders more tests and scans she gives me a heads up about a possible internal ultrasound because "you want to be mentally prepared when they start waving that thing around down there" (please, please, please let them get what they need from the outside sweep). As she hands me my new set of referrals she says "here's hoping for nothing new to be broken".

To top it all off her name is Cicily, which always makes me think of Northern Exposure.

The centre is in a gorgeous natural setting, and I love the decor. It's clearly a medical centre but minus the cold clinical feel of 98% of the doctors offices I visit. If you have to get felt up by strangers, this is my choice of location.

(It's red and Asian inspired, as soon as I walked in I knew it was the right fit)

Now I'm off to the old dark and dingy local hospital to be felt up by yet another stranger. Fun times.

Cheers

Michelle :)

Highlights.

2011-03-06T16:27:00.000+11:00

This has been a week of highlights in Rustyville. Here are but a few.

Have used Charlie Sheen as my new barometer of crazy, and have decided that on the newly devised Charlie Sheen Insanity Scale (CSIS) I am completely sane.

Not to self: using a man who states that he is not bipolar but "bi-winning" to gauge my own sanity may in and of itself suggest that I am well on my way to Loonyville.

Sang badly and loudly to Evanescence in the car.

Note to self: don't listen to dramatic emo music whilst already in the "I'm the worlds worst mum" state of mind. The sight of my sobbing, snot-smeared face, belting out misheard lyrics may qualify as road hazard to other drivers.

Started, yet again (100th times the charm), to write a book (stop laughing Mr Grumpy). First paragraph alluded to cousin loving in my pre-electricity familial tree, and a parental "lie back and think of England" sexual attitude, as potential causes for my ill health. I'm sure my parents will be proud.

Note to self : check if it's possible to add banjo music to a book?

Have repeatedly used the phrase "but um" in conversation when words and conscious thought have failed me. Children think this hilarious, thanks to an episode of How I met your mother, where one of the characters said "but um" so often on her TV show, it was turned into a drinking game by college students.
For example:
Me: "Eldest Monkey Boy!!!" (screeched out loud enough for my deaf and confused elderly neighbour to hear).
EMB: "Yes mommy dearest" (must stop threatening children about using wire coat hangers).
Me: "I need you to.............but um".
EMB: "But um!" (snigger)
Me: "Stop that! Now, but um..... Damn it!"
EMB: "But um!" (more sniggering)
Me: "That's not funny. Now, but um..... Damn it!"
EMB: (rolls on floor, holding sides whilst laughing and shouting) "BUT UM, BUT UM, BUT UM".
Me: "Fine. You are now grounded forever. Right. (deep breath) Now, but um......Arghhhhhhhhh", (storm off dramatically).

Not to self: purchase a DeLorean and flux capacitor, to enable current self to go back in time and slap younger self for thinking having children would be a wonderful idea.

Have only just remembered I have a Twitter account. Am amazed that people have decided to follow me even though my last conscious tweet was on the 9th of January. Thankfully, I had linked up my FB page to automatically tweet my frequent witticisms, so it looks like I am a social media savvy tweeter. Rather than a sad old woman who keeps forgetting that she has a Twitter account. Though I am just a little concerned that Twitter keeps suggesting I follow Justin Beiber and Kanye West and some strange woman who wants to show me her breasts. Explain yourself Twitter.

Not to self: must discover what else am I forgetting. Lets see. Wearing underwear? Check. Used BO basher? Check. Fed spawn of Satan/children? Must have, can't hear whinging. Check.

Have attempted to answer the multitude of emails, messages and comments that have been building up, thanks to the "Vacant" sign that has taken up residence inside my head. I'm really not trying to be a rude cow by answering in such a tardy manner. Just when you are down to one brain cell, who refuses to work overtime and insists on taking every last second of her allotted coffee breaks, it can be a slow process. Especially if you want a coherent response. However, if a response composed completely of neologisms is okay, let me know and I'll send one off immediately. I'm sure at my current speedy pace of one response a day I will get there.

Note to self: must get around to hiring Eunice a PA. Hot, shirtless, cabana boys are encouraged to apply.

Have alternated between staring at the ceiling for hours on end without the pleasant distraction of considering how I can get away with smothering Mr Grumpy in his blissful sleep (he was away for work), and coma sleep. As usual the universe has delighted in making fun of my sleep challenged life by sending this link my way. And yes it is in Finish, or Finishian, or whatever the correct term is. Yes universe send me a link to artsy pictures of Finlandites (it's my blog and I will make up words if I want) blissfully asleep, bastard.

Note to self: must stop thinking that the universe is so obsessed with me that it would go out of it's way to mock me on a regular basis or I will end up at the 'bat shit crazy' end of the CSIS.

Extra Note to self: stop watching any TV show, radio broadcast, newspaper column, blog, or internet site that makes reference to Charlie Sheen in any way. Must make life a Charlie Sheen Free-Zone. Though I am kinda interested in how he cured himself with his "brain". Maybe I should send Eunice round to his place for a few pointers. On second thought, he's liable to make Eunice his next 'goddess' and I couldn't put the old gal through that.

So dear readers, what delights have been the highlights of your week? I hope you too are livin la vida loca*.

Bring on the margaritas.
Michelle :)

* Should I add that my eldest loved Ricky Martin when he was little and knew all the words and dance steps to his early albums? I'm sure he wont mind me sharing. He also had a thing for Shania Twain's I feel Like A Woman, but that's really something I should probably keep for his 21st.

A small musical interlude in remembrance of my pre-children, pre-husband, pre-sick golden days. I give you Blister in the Sun by the Violent Femmes (1982). Plus this particular film clip has John Cusack in Grosse Pointe Blank, and includes a cat puppet. What more could you want?

Processing

2011-03-03T11:42:00.000+11:00

To post, or not to post? That is the question. It's hard some days to decide what to write about. How much of yourself do you share? Are there topics that simply shouldn't be put out there? I need a Blogging for Dummies, that sets out neatly, the okay and not okay topics. Not that I'd probably read it. It would just end up sitting on the table collecting dust and coffee cup stains. Or end up as another brick in my fall back plan for fame, ie to get onto Hoarders.

I'm pretty much of the school that says sharing stories makes them more bearable. Blogging as therapy. I think it works, and it's way cheaper than the regular types. So often we hide what we think is shameful, or too personal. I know for myself at times, pushing the 'publish post' button, feels like I'm standing naked in the middle of the crowded room. Exposing yourself can be a strange melange of pee your pants terrifying and exhilarating. It can be freeing, as you find others who have shared your experiences and support that comes form unexpected quarters. And finally those mountains can be seen for the molehills they truly are. So I'm going to take that plunge once more and hope that if nothing else, it helps me sort through and organise my personal maelstrom of thoughts and emotions.

We all have fears. Over the last few years I've had new ones crop up. Ones I never thought I'd have to confront. I don't usually voice them as, illogically, it feels that to give them voice you give them power and that increases the chance they will become manifest. Stupid I know. My practical science background laughs derisively at my foolish illogical side. But the reality is that voiced or unvoiced they sometimes come true. Sometimes life is simply completely out of your control and you have to find a way to deal with what comes your way.

As my own health issues have progressed over the past few years a new fear has crept into my mind. Although Bob is not currently thought of as a genetic disorder, except in very specific forms, it can run in families, as can some of my other health issues, and there is an increased risk of yet other cluster illnesses. I have spent many a sleepless night worried that some part of my defective genes will be passed onto my children.

As a mother you have an instinctive drive to protect your children from harm. Every tear, every disappointment, every hurt, rips out your heart. Knowing that you may be the cause of that hurt, is more painful than words can describe, and there is no salve. And that is the path I am now treading. Over the past year my youngest has been on the doctor roundabout as his young body has started to have problems. Over the past year I have come to the realization that my broken genes have been passed down to those I hold dearest.

I've had a little pit of fear stewing in my belly. Every time he has felt nauseous. Every time he has run to the loo. Every time he looked pale. Every time I have seen him limping along. I have seen a little still from my own teenage movie. And it has scared me.

Even without a doctors diagnosis I've known for some time that he has developed the same gastric issues I had as a teenager. The same food intolerances, which are now confirmed by recent tests. Similarly, I've know that his poor little joints are like my own. I know the pain he is feeling only to well. Yet despite all the evidence I have held onto a little glimmer of hope that I was wrong. That it was indeed "all in my head". But it was not to be. And I know that what he (and to a lesser extent my eldest) is experiencing is due to my own faulty DNA. And the guilt is overwhelming.

I've been good at stuffing those pesky emotions down. But sitting in the phsyio's office listening to words like "sublaxation" and "bad collagen" has hit me harder than I ever thought possible. I was totally unprepared. Those words said out loud about my child, were like a clarion bell. It was real. More real than I have allowed myself to believe and it's like I'm now standing under a never ending waterfall of guilt.

I know it's not truly my fault. As my best friend pointed out (and I am so glad I have her voice of sanity in this matter) it's not like I decided to pass this onto my children. But it doesn't stop the feelings of guilt, rational or not. In my good moments I know the truth, but in those other times........

A mother's job is to protect her children, and this feels like I have failed on the highest level. I know only too well what it's like to be a teenager with health issues. What it means physically, socially, and emotionally. And I think in many ways it makes it better, and conversely, far far worse. It's a challenge to keep perspective and stop my own baggage from interfering with what I need to do now. To not transfer my own emotional memories onto his little shoulders.

Last night I strapped his ankles in a vain attempt to keep them in place for his cricket training, knowing full well that it was more placebo than panacea. I spent the drive back home bawling my eyes out as grief and guilt took turns at beating the crap out of me.

I am in that horrible acute phase, where the the roar of my emotions is deafening. I have argued irrationally with Mr Grumpy, as my own insecurities and baggage have taken control. I have yelled at the dogs and screamed abuse at the washing machine for not washing quickly enough. Even the discovery of the empty coffee container feels like a deliberate personal attack. It's my irrational side in all it's glory.

I want to punch something. To yell and scream. Or grab a bottle of tequila and hide under the covers until I can view the world through the same beer goggles that transform the Elephant Man into Cindy Crawford. But I'm a mum, and mums don't have that luxury. We have to hold our shit together. Stuff down our fears, put on our calm faces and tell them it's going to be alright, even when it's not, even when that little voice inside is screaming in our ear.

There is a creeping fear that this may be indicating the arrival of Bob in his life, but I can't face that just yet. I'm going to put that one in a box, tie it up in chains, and bury it deep down. I'm not ready to tread that path. Though I know that if the time comes, I will. But until that time I shall say a prayer to every deity known to man that he will not have to take that journey, that I can spare him from at least that burden.

I know that logically, at the least, I can now find him the help he needs. I can give him the gift of believing him when he says he is in pain. I can support him in the multitude of ways that I didn't have as a child, when these disorders were not recognized and the title of hypochondriac was readily bestowed by the medical profession and family alike. I know the power of a diagnosis. I am glad that it gives us a starting point from which to tackle these issues. But none of that changes the fact that I cannot give him the gift of good health.

My own health issues mean nothing in the face of those of my child. I want to have the magic wand I had when he was little. Where I could make the monsters disappear with my miraculous mummy super powers. Where I could kiss his bumps and scratches better. Where he knew without doubt that I would keep him safe and protect him from the harms of the world. I want to wrap him up in joy and peace, and let him live in a pain-free world.

So I will take a breath. I will dry my tears and patch my heart. I will put on my practical hat. I will book the appointments. I will take the steps. I will don my armor and fight for him. I will help him find the path to acceptance of his physical limitations. I will help him discover that his true gifts are not the ability to kick a ball, but lie within his spirit and generous heart. I will do all in my power to heal and soothe.

And I will try to find that place where I can be okay with all of this. But at this stage I am still processing.

Michelle

Holy Crap I'm Normal! Australian POTS & Dysautonomia Lunch 2011.

2011-03-01T14:22:00.001+11:00

Lordy, it's taken me forever to get around to this post. It's been on the cards for ages. Started and stopped, started and stopped. Partly due to slackness. Partly due to a rather prolonged and continuing period of bleechness. Partly due to a lap top that was on life support. But I'm going to pull my finger out. Mr Grumpy has done a MaGyver and created a laptop with a piece of duct tape, a used tissue and a hairy piece of gum he scrapped off the bottom of a table at the local Maccas. He may not be fancy. He may not have speakers. And he may insist that it is still 2010 despite repeated reboots, but technically he is a laptop once more. So I will now put on my Uri Geller hat, and will my fingers and brain to coordinate enough to tap out a couple of sentences on the old dog hair encrusted keyboard.

Time to get away from the "woe is me, life is crap" mantra I've been spouting of late. Time to find my happy place and live in the warm arms of denial for a few minutes.

(FB Group)

A few weeks back (well actually a bit longer) I finally met a bunch of fellow Bobettes here in Melbourne for lunch. For a while now we've been in contact on an Australian FB group, with Bobettes coming from all around the country and New Zealand (which, lets face it, really is just another Australian state, although with an above average fondness for their woolly artiodactylan brethren). The Dysautonomia community is very small here in The Land Down Under. Hell you are hard pressed to find a specialist, let alone others in the same leaky boat. But what started out as a handful of people has now stretched to 43 members! Diagnoses are varied, from Postural Orthostatic Tachicardia Syndrome (POTS) and Neurocardiogenic Syncope (NCS) to WTF?, but we have a wee little community who all share a group of pesky symptoms and a body that is not playing the game.

It was a brilliant day. The first time in a long time that I actually looked forward to meeting a group of strangers. Not that they are really strangers. Over the past six months we have all shared the highs and lows of living with Bob. The daily struggles, the tears and the hysterical laughter. It has been a great place to share local information, which is sorely lacking, and to find normality in the most abnormal of circumstances.

I can't recall the last time I went somewhere, where everyone reached for the salt and piled it on their lunch, and no one batted an eyelid. Or guzzled water by the gallon. Or did the standing shuffle to get the blood flowing. Where the bazillion things you do to simply last through a meal or stand up, and normally makes you stand out like a freak, finally feel normal. For those few hours our shared abnormalities were made normal and it was wonderful.

To sit and laugh with people who know the joy of lying down on floors in public, throwing up, looking like a drunk and all the rest of the joys that go along with this syndrome, is fabulous. The shared joys of the medical system, inconsiderate doctors and fun medications. Tips for managing, stories of when we didn't. Stories of lives outside of illness. Sharing our histories and finding so many commonalities, none of which our doctors have mentioned. Hands up who had severe gastro problems when they were a teenager, or mutliple traumas/health issues leading up to the final bomb of Bob. Hands up who has joint issues. Hands up..........

For all of us it was a challenge to get there. Many of us were ill leading up to the day,on the day, and the days after. Some couldn't make it due to bodies that refused to cooperate. Some are now in hospital (checking out the male staff off course, can't keep a good gal down). But I think we would all say it was worth it.

To all who attended I am so glad I got a chance to meet you all in person. To all those who couldn't make it on the day I hope we can meet up on another day. Big love to a strong group of women.

For all Australian's and New Zealanders looking for support come some say hi. FB Group.

Oh I forget to mention, four of us stayed till 6pm! 6PM!! That's like staying out till 3am on a bender, snogging total strangers, dancing with your undies on head, and eating a dodgy kebab from a mobile vendor at a petrol station, type of night for normal folk! (God, I miss those days)

WE ROCK!

Cheers
The normal for four hours on one Sunday in January 2011, Michelle :)

In honour of my resurrected lap top I give you, Back in Black, AC/DC.