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.
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.
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.
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.
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.
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.
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.
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.
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.
