Wednesday, 28 December 2011

Momentum


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.

Friday, 23 December 2011

The Perfect Bob Christmas Card


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

Sunday, 18 December 2011

Merry Crafty Christmas

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.

Tuesday, 13 December 2011

Kiddy ER visits, do not a jolly season make.

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.

Saturday, 10 December 2011

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

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".

Thursday, 1 December 2011

You Got The Look

This blog was originally 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 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

Sunday, 27 November 2011

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

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.

Friday, 25 November 2011

All I want for Christmas is to Fart Without Fear.


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.

Monday, 21 November 2011

ABC Ramp Up Article

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.

Wednesday, 16 November 2011

Craft Like You Don't Have A Chronic Illness

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 :)


*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. 


Tuesday, 15 November 2011

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

(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 :)

Wednesday, 9 November 2011

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

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

Saturday, 5 November 2011

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


"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.

Wednesday, 2 November 2011

The Trick is to Keep Breathing.



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.





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".

Thursday, 27 October 2011

Blogging and Chronic Illness: Reclaiming Your Voice

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.   

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

Monday, 24 October 2011

Leap of faith

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.