Thursday 19 December 2013

So it seems I've found my Holy Grail and it's goat-shaped.

Dysautonomia is a weird collection of illnesses. Even if you are lucky enough to find your subtype (eg Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure(PAF)) that is no guarantee you'll know the specific cause of your subtype. One glance at patient forums and you'll find that the majority of patients seem to have either no, or only a rough, idea of what is causing their symptoms. It's one of the conundrums with research in the area. Even in a room full of POTS patients, the causes can be as varied as autoimmune diseases, mitochondrial disorders, connective tissue disorders and a plethora of genetic conditions. If you're stuck with only a weird collection of autonomic symptoms (waves from this side of the keyboard) the choices are even greater. But we all hold out hope of finding our particular cause.

You see until you know your underlying cause all you are doing is managing your symptoms. That's not a cure. And frequently, given the complexity of our presentations, not all that successful. Finding your cause is the illness equivalent of the quest for the Holy Grail. Something very few seem lucky enough to do, either due to complexity or a lack of medical support. But a cause gives you something to actively treat and potentially, cure.

I can't even begin to articulate how important having a name for what you are experiencing can be. Legitimacy, tangibility, hope. It's all wrapped up in that diagnostic title. The shadow is gone. The grey is gone. And good or bad, the defeat of that uncertainty, can be an amazingly cathartic experience.

For seven years I have sought my Holy Grail. Frequently, the search has been more Monty Python-esque, than inspirational quest. I have lived the hope/disappointment cycle throughout. Hope for a cause/diagnosis/treatment, and disappointment time and again. I wrote about the toll it takes way back in my first post:

"How do you explain to someone that not getting a serious or life-threatening diagnosis is disappointing? After months of living with uncertainty and the fear and the doubt it generates, you start to long for a concrete diagnosis no matter what it is. How do you plan your life or explain your illness when it is this shadow being that can’t be measured or understood. I’m a rather practical kind of person. If I know what it is I can educate myself, I can plan my life; I can do what needs to be done. I can be legitimately ill." (July, 2009)

It's exhausting.  

After seven, nearly 8 yrs now, I went into my neurology appointment on Wednesday with mixed feelings. The neurologists who conducted my SFEMGs said they were pretty sure they'd found my cause. Since then I have lived with a mix of excitement, dread (the look on their faces was less than encouraging), and the resignation that it could have been nothing more than yet another diagnosis-tease.

But it seems the completely unexpected abnormalities they discovered have led me to my grail.

Not Myaesthenia Gravis (MG) as was expected. No it couldn't be that simple. I had resigned myself to MG. Had started the research process and moved forward. There are treatments. There is research. There are organisations. But no.


You see those pesky out of left-field abnormalities led me down a different path. Myotonia. Or to be more precise,

What you haven't heard of it? Me neither. Yep, I have developed something no one has heard of (again). Even better I have developed something for which there is no treatment (well there's one, but it damages your heart and as my neuro admitted very few of her patients take it). That is degenerative. That is progressive. That, and what is stressing me the most, is autosomal dominant.

I did bloods on Wednesday to try and narrow it down from the 3 possible subtypes, two of which are systemic and have an autonomic component. So now I have to wait, again, until March for those answers. How much it explains my autonomic issues? I'm unsure. Is it an all or partial answer is unclear and even the available research seems to disagree? For now I'm putting it all aside and concentrating on getting through Christmas.

I like my neurologist. She's calm, caring and practical. That works well for me. I'm extremely lucky that she has taken this journey with me and never given up. She has held my hand, directed when needed, and listened to my need to find an answer and helped me achieve that. Something very few patients seem to experience.

She didn't even bat an eyelid when I asked for the 12th time "are you sure there are no other possible causes?"

(This is the face of someone for whom 12th time is not the charm.)

Looking back it was all a bit surreal.

Me dolled up with my Dorothy shoes. My son taking photos all over the room. Discussions about glitter trails throughout her rooms. Me reading and re-reading the paperwork from the neurophysiology department. All whilst being told that I have a degenerative neuromuscular disorder and organising genetic sequencing.

All the while documenting the moments of what it's like to get one of those diagnoses. 

After so many years ill, and so many years of the hope/disappointment cycle, it simply left me numb. I remember smiling. Laughing at a joke. Asking questions. And underneath it all, numbness.

If this was the start of my illness journey I think I may have freaked out far more, but now? That I have a degenerative condition is not a shock. That's been clear to all and sundry. That my muscles have been deteriorating? Also not a shock. I can see the muscle wasting in my right hand and on the left side of my face, and the weakness is spreading. I knew whatever was happening, my health is deteriorating and I'd come to terms with that a long time ago. As Mr Grumpy pointed out the other day, I am far more resilient these days. Far more than at the start. And you do have to find a way of coming to terms with your lot in life, otherwise the toll is too great to bear. However, I do reserve the right to freak out in the near future. To cry and yell and rock in the corner.

That evening my eldest son got it into his head that after such a day I needed a margarita. So out he went and brought all the ingredients and made me a large margarita in a salt rimmed glass. He's a good boy.

But for now numb, compartmentalisation, blinkers, denial and margaritas (well one margarita, and a week later I still feel hung over) are my method of coping.

Plus, at the moment, I just can't face talking about it again.

Oh and my love of goats now makes sense as one of my 3 options, Myotonia Congenita, is the same disorder that afflicts the famous Fainting Goats. They truly are my animal!


I was going to add the obvious Hunters & Collectors classic Holy Grail as my musical accompaniment. But I think Throw Your arms Around Me, is more appropriate, because dear readers, I could do with a big virtual hug right about now.  

Monday 16 December 2013

And here we are again. *sigh*

Today this came up in my Twitter feed. 

And I felt myself let out a big disappointed sigh.

I'm a big fan of Nathan Fillion. Firefly is up there with my all time favourite scifi programs (one season was seriously not enough, though the movie Serenity did help soothe the loss). And really this isn't a post to slag off at him personally. He's not the first to make note of people who can walk using wheelchairs as a joke. Or even an object of derision. Or, as many have found, an object of abuse. But his tweet grated. And given some of the responses it would seem I'm not alone.

You see it's not even this single tweet. It's fairly tame as these things go. Though in a way that makes it worse. It's that subtle and casual message that some people don't meet the mark of real disability and therefore lose the right to respect, and become the object of a joke. It highlights the challenges many of us, myself included, encounter when we are able to walk a short distance but need a wheelchair for longer distances, or longer times. It highlights the general lack of understanding in the community. And the pervasive idea that disability can only be defined by a very narrow set of parameters. And I doubt we would have seen a tweet that read "Girl in wheelchair, wheeled over to get a photo with me"

I've spoken at length about my experience with a wheelchair. But for the new reader let me sum it up in a few dot points.

  • I have a disorder which for the most part isn't visible.
  • I can walk short distances. Eg if the disabled toilet is locked or in use, I can grab my cane and stumble to the regular loos if desparate.
  • I cannot walk long distances, eg 50m is a stretch.
  • I cannot stand for prolonged periods. Some days that is 10 mins, others 10 seconds.
  • I am fatigued by even small amounts of standing or walking.
  • Standing or walking can leave me throwing up, falling down, or comatosed for a week.
  • If I don't use a wheelchair I can't really leave my house.
  • I have worked long and hard to get to the point of accepting that I need to use a wheelchair.
  • I know other people judge me for looking well and being in a chair, for looking young and being in a chair, for getting out of my chair and walking 3 steps or using my cane to go to the loo.
  • I live with that every time I go outside my home, and dare to use my wheelchair.
  • I hate having to use it and what it represents for me and my health.
  • I hate that other people have limited ideas of what disability means.
  • I hate that other people feel that me getting up out of my chair is a joke. (And yes, I know people who have had things like "it's miracle!" yelled at them when they get out of their chair for 5 mins.
  • I hate that I have to justify and explain it's use. Again.

I also know that Nathan Fillion doesn't know all this. And neither do the majority of the community. Hence it is note worthy, or humour inducing, when people manage to leave the confines of a chair for 3 minutes, when they are excited to meet one of their TV heroes.

The old responses, "get a sense of humour", "it's a joke, people" (not by Mr Fillion I want to make clear, but by some of his followers) etc, assume that we disabled folk don't have a sense of humour. Let me tell you, when you are dealing with severe chronic illness for years on end you have to develop a sense of humour. Quite a good and dark sense of humour in fact. It's a survival mechanism. The idea that it is joke and it is my fault for getting pissed off, is aimed at silencing my voice. Shut up and don't be heard faux-wheelchair girl. "It's a joke" continues to be the excuse of choice whenever those who are the target of a joke dare to raise their voice.

Am I too sensitive? Probably. I have lived with this for years now. And it impacts me every time I go out. When you deal with ignorant and hurtful comments on an ongoing basis, it kind of sensitises you to these things. But I am not here for your entertainment. My disability and declining health, not fodder for amusement. And should I meet a favourite celebrity, not worthy of a wry tweet.

For years I avoided using a chair even when I really needed it, because I knew attitudes like those above were the consequence. I had internalised them to mean that I obviously didn't need a chair because I could walk 20m. I was a fake. A fraud. Breaking through those thoughts took a long time and much pressuring by my family. I fight those feelings every time I plonk my bum in that chair.


Dear Mr Fillion, I will continue to love Firefly. How could I not? But I will now carry a little pit of disappointment with me, that you think a fan getting out of her wheelchair to get a photograph with you is worthy of note and humour.


Sunday 15 December 2013

Don't touch my wheelchair.

The past 6mths I have been using Vera, my trusty wheelchair, far more. Distance is my kryptonite. Between weakness, uncoordinated muscles, low bp, and pain, my head in now more often stuck at crotch height, as my bum is firmly stuck in a chair. This has also impacted heavily on my independence.

Previously, with Francesca, my walking stick (yes, I name everything), I could manoeuvre around, albeit slowly, to go where I wanted, when I wanted. Vera however, is a manual chair. The weakness in my arms means that I can only push myself short distances. My still recovering pacemaker incision, means that a short amount of pushing aggravates the wound leaving me in pain for days after. So I have resigned myself to being pushed in my chair. For now.

Now many things frustrate me no end about being in Vera. The lack of independence. The fact that most of my favourite shops are not even close to wheelchair friendly, I'm looking at you Ishka. The fact that people look at you like your very presence is an insult to their delicate sensibilities. Or the pity looks, or the "you don't look disabled enough to be in a wheelchair" look. Or that people tend to pat you and treat you like your two, hard of hearing, have English as a second language, or are cognitively impaired. Or that others ignore the fact you are even there, and speak only to the person pushing the chair (big props to Mr Grumpy who either pointed looks away, or walks away, when staff go to speak to him instead of me). Or that people will reach or stand, in front of you when you are looking at products. Or that I can't easily speak to Mr Grumpy or whoever is pushing me. All of these things frustrate me no end. And there may be days where I could scream from that frustration. But above all this, are the people who touch my wheelchair without permission.

Can I just say to all and sundry:


When I am in my wheelchair it is an extension of me. A part of my body. And you have no right to touch my body. I have been pushed and pulled without permission on more than one occasion. It has happened with everyone from doctors to shop staff and even the odd family member (although I may have bitten their heads off when that happened. That tends to work well as a deterrent.)

I may be slow but that doesn't give you the right to push my chair. I'm looking at you Dermatologist with the social skills of a rock. I am still coming to terms with my wheelchair. I am learning to embrace it's freedom and generally be okay with my loss of mobility. It may take me 10 seconds instead of 2 to leave your rooms but that doesn't mean you have the right to grab my chair and push me roughly out the door, nearly ripping my fingers off in the process, to pointedly dump me next to the only other person in a wheelchair in the huge waiting room. Because those of us in wheelchair society like to congregate together like seagulls on a pier. We have cool secret handshakes, and decoder rings too. Ugh. It's not like my son was there, and you could have asked where I wanted to sit. It is rude, demeaning, and disempowering. Do not touch my wheelchair unless I ask you to help. Do not rush me out the door without asking if I might indeed require help. Which I probably did, but was stubbornly wanting to try and do it myself. But that's not the point. Let me. Don't touch my damn wheelchair.

I may be in the way. Don't move me like I'm a box in the way. I'm looking at you ignorant shoppers and shop staff. Say "excuse me, could you move so I can get through?" It's not hard is it? I'm not furniture. I'm not an object in your way. To unexpectedly feel yourself lifted or pushed is a shock and a violation. When you touch my wheelchair you are touching me. Would you pick me up and move me if I was simply standing in front of a rack of dresses? No? Well don't move me when I'm in my chair. Keep your hands to yourself, use you inside voice and some bloody manners and simply ask if I can move. Just because I'm at crotch height doesn't mean I've lost the right to be treated with some dignity. It does mean that I am at crotch height and have a mean reflexive, left hook. Manners cost nothing people. Don't touch my damn wheelchair.

It's not hard is it?

Just because I am in a wheelchair doesn't mean that I have lost all right to be treated with respect. If you wouldn't touch my flesh and blood body, then don't touch my wheelchair. Because it is an extension of me. A part of me. Ask me to move. Ask me if I need help. But keep you hands in your pockets, and off my handles, until I say yes.

So just once more in case I haven't been clear.


Treat me as you'd hope someone would treat you or your loved one. Or you just may be faced with a pissed disabled woman ,who whilst she can't walk around a shopping centre, can still find your crotchal region with her fist, or your toes with her wheels.


AC/DC just seemed like the obvious musical choice.

Tuesday 10 December 2013

Clicking my heels for Dysautonomia: Raising funds for The Greg Page Fund for Orthostatic Intolerance and The Baker IDI

During this year's Dysautonomia Awareness Month I spoke about The Greg Page Fund for Orthostatic Intolerance, Greg Page aka the original Yellow Wiggle, being perhaps our most famous fellow patient. Greg's fund raises money for research into a variety of Dysautonomias and drug treatments that is being conducted at The Baker IDI here in Melbourne, Australia.

I have pulled back from social media a fair bit over the last couple of weeks and will for the next month or two to preserve my very limited spoons. But I have decided I need a bit of a positive focus at the moment and have decided to get on board and raise some funds for the Greg Page Fund.

It took a while to work out what to do. Run a marathon? Ah no. I can't even walk to my mail box most days. Trekking? Ah not unless there's a sherpa willing to drag my sorry lump of flesh around. Dance-a-thon? Well, I do a mean set of jazz hands and I have been known to bust a move to Vogue whilst stuck in bed, but I don't know if that would count. So what to do, what to do?

Well late one night (go, 3am insomnia!) I had an epiphany. I would combine the joy of Dorothy shoes with my medical appointments!

I did a trial run when I went for my SFEMG and was pleased when the somewhat bemused neurologists let my eldest come in and take photos of me and my shoes, whilst they stuck a needle in the side of my mouth. I had multiple comments from strangers and much curiosity in the waiting room. It seems that a woman in a wheelchair dressed to the nines and wearing bright red, sky-high, glittery red heels peaks people's interest, and tends to bring a smile to the face.

So my plan was born.

For the next 12 months I will wear my Dorothy heels to every medical appointment, be it a specialist appointment, GP visit, investigation, ER visit, blood test or physio appointment. I will document the process in photos here on the blog, FB and the fundraising site. In a way it is also document a year in the life of Dysautonomia. I plan to hand our information about the fundraising and about Dysautonomia for those who question about the shoes.

All funds go to the Greg Page Fund for Orthostatic Intolerance at The Baker IDI, to directly fund research into the mechanisms and treatments of Dysautonomia, be it POTS, OI, NCS etc, at the Human Neurotransmitter Laboratory run by Professor Murray Esler.

(Professor Murray Esler, head of the lab)

So click on the link below to find out more:

So come and support me and follow along. Donate a dollar or two if you can, or share with others who may want to support me for the year, to bring glittery fabulousness to the world of Dysautonomia and support the great work done by The Baker IDI. Lets find a cure!

*With special thanks to Dejana, the Donor Relations/Community Fundraising Coordinator at the Baker IDI Heart and Diabetes Institute for helping this fundraising virgin in setting all this up.

Cheers Michelle :)

Sunday 1 December 2013

Poverty and Riches.

I've been reading a lot about poverty and health, and poverty and disability. It seems that poorer you are the poorer your health, and the higher the likelihood of developing a disability. In many ways it's a no-brainer, but it does seem to be an aspect of health that is largely overlooked by the medical community and frequently a taboo topic in our society as a whole. The more I read, the more I wonder how much my childhood has contributed to my current health issues. The more I read, the more I think about those early years and am forced to process my memories with a more measured eye that only comes with age.

Canned Heinz spaghetti was a staple, alongside overly processed white bread, Vegemite sandwiches and glasses of Tang that never quite dissolved. Cream and jam on fresh white bread was a special treat that part of me still hankers for. Many a morning it was poached eggs in the old aluminium poaching pot that had belonged to a grandfather I have never met. A can of Leggos spaghetti sauce on some over-cooked pasta, was a treat reserved for birthdays. Times were that we didn't even have money for cordial or jam. We were poor, although I don't think it fully registered exactly what that meant in my child's brain. My child self was more aware that I couldn't have the things I wanted, rather than we might be struggling to have a roof over our head. I recoil as I recall some of the tantrums and words hurled at my mother when I couldn't go on school camp, or was forced to wear hand-me-downs on Free Dress Day. An unbearable indignity to my teenage self, and fodder served up on a silver platter for the mean girls at my local high school. The ignorance and self-centeredness of youth, shelters you from much of the harsh realities of the world.

I think of my childhood as having two parts. The first 10 years were blissful ignorance for the most part. Trampolines, princess beds and way too much pink. There were moments that jarred in those early years, but they were quickly over-written by bubblegum Paddle Pops and Big M hula hoops. Then there were the years after, when life took a sudden and sharp veer to the left. My parents went their separate ways. My father to the city, my mother, brother, sister and I made our way out of town to an isolated and dusty old farmhouse, surrounded be mile upon mile of farmland. Soon it was down to two, my mother and I, negotiating a new world order for which we were both ill equipped.

When I was 10, our home, our car, our dreams, were swallowed up by the TAB, VB and the smell of old Peter Stuyvesant's. Even now, I have to resist the temptation to hurl abuse at Tom Waterhouse's commercials as they are played on the TV. Gambling isn't glamorous. It isn't exciting. It's no food on the table and bailiffs at the door. It's the end of dreams and the sound of your parents fighting, and your mother sobbing in her bedroom. Gambling is a blight on the world, my child's world. The wrecker of many families, and many lives. Even now all these years later, as the pieces are patched and the scars more faded, my hatred of gambling is just as strong. Something broke when I was 10, and I am still finding pieces that need patching.

We moved out of town to nowhereville. To a town that wasn't really a town. No post office, no stores. None of the usual trappings that mark a human settlement. Just a stretch of land bordered by other tiny rural communities, barely more than a name on a map. $50 a week for the privilege of living in a worn old farm house, that really should have been torn down years before. Peeling paint and crumbling plaster, revealing old red brick and powdered mortar. I would sit on the floor in the musty hallway absently peeling pieces off the wall, adding my own efforts to the decay, whilst Casey Kasem played the American Top 40 on my plastic fantastic tape recorder. There was a crack in the wall of my mother's bedroom. So big sparrows could and would, fly in, as would various opportunistic bugs. So many moments of madness. Of running around with towels. Flapping our arms. Leaping across beds and onto dressing tables. Yelling,"Catch it! Catch it!", as our tiny feathered foe would flit back and forth around the room, mocking us with it's excited churps.

We never used the front door. The veranda that sat out in front had a definite list, rotting boards too unsafe to bear even my child's weight. It was also the abode of many a snake. Tiger, brown, red-bellied black, copperhead, we had them all. We lived smack bang in the middle of Snaketown. They were near the front gate, down near the horses' trough, and frequently by the dam that kept our house watered. Lose the coin toss and you grabbed a big stick or an old golf club, and braved the walk down to start the pump. Warm Summer night's were the worst and let me just say, brown snakes don't flee, they fight, they lunge and they make even grown men fear. On occasion, they were also to be found sunning themselves on the warmth, of the concrete back step. We learnt quickly to be wary. To look before we leaped, or put a slippered foot down on our way out to feed the dog.

Colonies of tiny turtles floated in the dam. Groupings of black nostrils poking up through the top of the water. The greatest of escapologists, I would catch them and put them in plastic pools and tubs. I would declare them our newest pets. I'd give them names and plan their adventures. And every morning they would all be gone. Back to their dam and freedom once more.

The chimney of the half-bricked up fireplace in my bedroom, was frequently home to tiny black bats. One hilarious night, one became entangled in my sister's long black locks. I lay on my bed clutching my stomach, hardly able to breathe for laughing. Her piercing screams suggesting that she didn't find it quite so amusing. Trying to get her to stay still as my mother attempted to extricate the poor little bat from her tangled hair was an equally amusing endeavour. Many a dirty look was thrown our way as we continued to laugh while we checked if the poor little thing was okay, before sending it back out into the night.

We went through mice plagues. Thousands upon thousands of the little brown bodies running, ruining and reproducing. Lift a bale of hay and they'd scatter in their hundreds. Go into a shed and they'd scatter to the four winds. The rattling of the corrugated iron like thunder, as they forced the way through in numbers too great to count. They invaded our house. Our cats so over-taxed by the apparently limitless numbers of their prey, just sat and watched as they ran freely across the loungeroom floor, or down the hallway. And then it would be over as soon as it began. One moment we were inundated with a tiny brown tsunami, and then there were simply gone.

There were locust plagues that stripped the world bare. My friends and I would ride our bikes down roads more insect than bitumen. A road in constant motion as the clouds of insects vibrated their wings in the sun. In numbers so vast, the chitinous sound of their movements filled the air. We'd do our best Moses impersonations, parting the sea of locusts with our rattly old bikes. Yelling and laughing, flailing our arms and ringing our bells. Left with a face full of shattered carapaces and tiny cuts from the sharp edges of their shells, more often than not. The acrid insect smell filling the air. Hours spent washing their glue-like residue off our bikes. Or if unlucky, being coerced into scrubbing them from the front of the family car. Insect-concrete bound to glass, enamel, and chrome alike.We would chase them around our yard with tennis rackets and cricket bats. Seeing how many we could kill. A futile attempt to reduce their numbers in the guise of childhood competition. And then, just like the mice, they were gone.

Drought after drought. The sound of the shot guns as our neighbour killed his starving and emaciated sheep. The sound of the tractors and bulldozers burying their bodies en masse. No dignity in death. Just the practical demands to dispose of their stock. To end their suffering and cover them before they began to putrefy. Dust storms. Drought's gritty cousin. The sky dark orange, the sun barely seen. The clouds would roll in slowly across the paddocks, blocking out the world beyond. Beautiful in their own way. We would run around, desperately trying to close every window, putting towels under doors and covering up fireplaces. Then we would brace for it to hit. The air would become gritty. Hard to breath. My mother would clutch her inhaler, her asthma sure to spike. It would get in your eyes, and cover your skin. It's taste on our lips and tongues. And it found every place we missed. It forced it's way through every unprotected crack and crevice. Found every hole, and every opening. It forced it's way through louvres and pushed and wailed through shaking sash windows. And the house would be covered. Layer upon layer of orange dust. On bedding and carpets. On lounges and in cupboards. Storm after storm until the drought passed. A life time spent living in heat and grit.

Poking around in old farm sheds and derelict pickers huts. Clambering over boxes and machinery. Piles of old hessian bags, stiff with years of grime and old diesel, and way too many Huntsmans. Discovering treasures. The soldier settlers post-World War I, left a bounty of bottles, sinks, and rusty old machinery strewn across the area. Each farm had a bounty of ceramics and metalwork, just waiting for our childhood imaginations to incorporate into our stories and adventures. Our farm had a collection of ceramic insulators from the old power lines, and pink 1930's sinks in the hay shed. Who collected them or why, was a mystery we never solved.

Summer meant days spent swimming in the concrete channels that ran between all the properties. Diving in, head first, completely unaware of the risks involved. We swam through the huge dark pipes that ran under the road, and squelched our toes in the mud and ooze that covered the bottom few inches. We'd chase the boatmen bugs, and catch redfin and rainbow trout. Two of us would grab a sheet of chicken wire each and start at opposite ends moving ever closer to herd our prey, or soon-to-be dinner, between us. Or when the channels were emptied during the Winter months, putting on our gum boots and wadding through the murky foot of water left behind under the road, to catch more fish. We'd run to my friend's house to fry up our catch on their old cast iron wood stove. So proud of our delicious handiwork. I can still smell the mix of wood smoke and fish cooking in butter.

So cold in Winter.  So hot is Summer. The land of extremes. We would huddle around the fireplace in Winter and dread having to leave its warmth to head to bed. So cold it hurt. In our bedroom, my sister and I would blow our breath out into the room to watch it swirl in front of us, or blow on the icy window and draw pictures in the fog left behind. Sitting at the bus stop. Marked by a single pole on the side of the road and surrounded by a sea of flat paddocks dotted with salt bush and purple statice. The frost crunching under my feet as I huddled down to keep off the worst of the wind. Chilblains and hot water bottles. Big Red tomato soup guzzled down with slices of warm buttered toast. That was Winter. Summer we would sit in front of the water cooler and suck down cold drinks in a vain attempt to keep cool. Hot and dry. 40C+ all through those long Summer months. My friends and I would ride our bikes all over the district. Stopping at various farms to grab a drink from an unattended water tank, before riding off once more trying to catch the heat waves rising from the road. Tunnelling through the shoulder high dry rye grass, creating a maze of pathways and cubbies. Yelling to ward off the snakes that so often inhabited the grassy sea. Sitting cross-legged in our hidden places, listening to our serpentine companions slither close by. Telling stories and sharing secrets.

Little goldfish, baby carp, would be sucked up by the dam pump to the house tank, and end up in the bathtub. Always checking for piscean companions before plunging into the bath. Or, at their worst, tying an old stocking over the tap to catch them. During drought, the water would be orange and thick. We showered in turbid water, water that stained the bath and our clothes in equal parts. We plucked dead sparrows from our rain water tank. The only drinking water we had. The metallic taste of the old galvanised water tank in every glass. My friends and I would sit on top of the tank in Summer. Grabbing fruit from it's neighbour, an old gnarled pear tree. Carving faces in the fruit with nails. Leaving them to dry and shrivel in the reflected Summer heat on top of the tank. Creating a macabre collection of witch faces to decorate the shed. Collecting bunches of mint, from the prolific planting that grew on top of the cracked septic tank. Crushing and rolling it between our fingers to release the smell and hanging it in our various sheds come cubbies, to repel the flies. And figs from the tree that sat alone on the side of the dry dirt driveway. I'd never eaten a fig until we moved to the farm. That first bite a treat never to be forgotten. Nor throwing that unripe one at your older sister during a fight. Not something I'd recommend.

Corn and watermelons growing in the wire-covered front of one of the old chook sheds. Our chickens roamed freely around the property and had an inexplicable hankering for the highest corners of the sheds. Hours spent hunting for chicken eggs throughout the hay shed. Never the same place twice. I swear they went out of their way to make it as difficult as possible. They were, it seems, the craftiest of chickens. There was our ever growing collection of cats, that would follow us as we took the dog for a walk. A fine sight, me, our dog, and line of feline soldiers marching down the road. Coming to terms with death when my ginger cat, Marvin, was bitten by a snake and my brother and father took him down the paddock never to return. And the beauty of life when another of our cats gave birth in our laundry. Tiny mewling kittens butting blindly at her stomach. To hold them minutes after birth, and place their fragile little bodies where their mother could lick them clean. Those moments were a gift I'll never forget. Sitting on the fence post feeding my sister's horses carrots. So many horses. From calm and plodding Chester to, the beautiful, but highly strung,ex-racehorse, Firetron. Mixing thick black molasses with chaff in the shed. The perfect concoction for an ex-racer. Carrying bales of lucerne out to the paddock for those with more humble beginnings.

Eating platefuls of dry Weetbix slathered in margarine and strawberry jam, whilst I watched the tiny black and white TV in my mother's drafty bedroom. Dr Who, Degrassi Junior High, You Can't Do That on TV, Dangermouse, Roger Ramjet, Bananaman, The Goodies, Monkey, the list goes on. Every night after school I would run to watch the ABC and beg to be allowed to eat tea whilst watching Dr Who. Tom Baker will forever be etched in my mind as the only Doctor, as will the entire theme song and opening monologue to Monkey. Or Saturday mornings getting up early to watch Rage. The thrill of our first video recorder, remote attached by a cord, second hand from the electronics store my brother worked at and eventually owned. My brother sneaking over a video of Thriller for us to watch. Something which my mother had decided was too scary for me to watch. The illicit nature of the viewing making it even more special.

I was a latchkey kid. Not that there was a term for it back then. It was simply the way it was. My mother worked long hours. The thankless and poorly paid jobs of fruit picker and cleaner. Doing all she could to keep a roof over our head. She would often leave before I got up and came home long after the bus dropped me off down the end of our road. It gave me a freedom I would never have had otherwise. I was free to run or ride, to visit friends or run down to the horses. I made my own schedule and my own snacks. I had the safety of a local close knit farming community that would help a child out if in trouble, or provide sustenance after a long day of exploring. I would stay out till dark in Summer and even in Winter I would push the time and my curfew. My continuing existence often only confirmed by a floating spot of torch light moving through the night, as I negotiated cow paddocks, channels, gates and barbwire fences, on my way home.

So many stories. So many memories. There are many parts of my childhood that I would rather forget. But there are moments, peppering the bad, that are worthy of remembrance. Moments with my friends from neighbouring farms. Soda Streams on a hot day. Salada biscuits. Oh the joy of squishing them together as hard as I could, until the Vegemite and margarine squished like worms through the holes. Bags of Burty Beetles and boxes of Chicken in a Biskit, scoffed in tents and sheds, and out under the stars. Sitting in my friend's house de-podding peas and eating tiny radishes from their garden. Picking garlic for her father, and laughing, throwing cow pats at each other, or sliding in the mud between the grape vines. Sharing secrets in my other friend's old dilapidated pickers hut tucked far away from their house. The three of us were thick as thieves. Eating grapes purloined from other neighbour's vines. Or even the day we got stuck up a crane in the back paddock, whilst her neighbour's pigdog barked and growled below having decided he'd like to tear us limb from limb. An adventure, touched with just a little fear, thanks to the slathering maws below. Making the run past her vicious geese and her head-butting goat. Her galahs that would mimic her mother screaming her name. So loud we could hear it across the intervening paddocks. Holding my breath and praying for no red back spiders using my fish-frying friend's outdoor pit loo. Avoiding the line of depressions, the tell tale evidence of its previous locations. Indoor plumbing is definitely not over-rated. So much laughter. The freedom of our bikes and the endless back roads of the surrounding farm district. Black rubber gumboots and mushroom picking in cold sheep paddocks in the middle of Winter. And patting the rescued battery chooks, reassuring them that their lives would be better now. Fresh melons and pomegranates. Pilfering apricots and peaches from neighbours' farms. Or sultanas and apricots straight off the drying racks. One of the perks of being a child living in a farming district. The kindness of one friend's family wheeling over a barrow load of vegetables because they knew my mother and I were doing it tough. Her mum feeding me up all those nights I stayed at her house, avoiding my own.

Those are the memories I want to keep. We moved back into town when I was sixteen. The farm house burned down a few years later. Given that the chimney had caught fire previously (I can still see my sister's then boyfriend on the roof pouring buckets of water down the chimney as fire roared and shot out of the bricks), not much of a surprise. It, and all the evidence of our time there, scorched from the earth. I drove back not long after. To have a look. To see what remained. Nothing but a bare paddock with a couple of old falling down sheds. Nothing to go back to. Nothing to see. The years erased. Both of my friends parents had sold their farms and moved into town. The familiar warmth of their wood stove, the call of their galahs, and the paths of my youth, also denied me. But memories remain. Riches found in the midst of nothingness. We may have been poor. It may have been hard. But there were moments. And I am richer for them.


Thursday 28 November 2013

Pay it Forward: Dysautonomia style.

One thing I have learnt about the chronic illness community is that it is filled with many wonderful and generous people. The support I have received from complete strangers, both here in Australia and all over the globe, has kept me going through some of the toughest times. For someone to spend their precious energy to send me a funny photo or Dorothy related shot because I'm down or they just wanted to share a laugh, is a beautiful thing. And it is one for which I am very grateful. This is the strength of the community, and the beauty of the Internet. To support, and receive such support, is truly wonderful. 

In light of that I wanted to propose an idea. This idea was born from an event earlier in the year, and my favourite Ghandi quote,

"You must be the change you wish to see in the world."  

Back in May I was lucky enough to be given a free wheelchair, Vera, to tide me over until my reclining chair comes. Vera was an upgrade from my first wheelchair, Bernice, and has a fabulous squishy cushion for my dodgy coccyx. This left Bernice, my first wheelchair, sitting forlornly in my rumpus room going to wrack and ruin. I didn't like seeing her sitting there unused. So I put an advertisement on our local Dysautonomia support group. It ran a little something like this:

"FREE TO GOOD HOME: Bernice has been a trusty companion since I first got her. Despite my initial reluctance she's been increasingly on the scene, going to shopping centres, restaurants, even comedy gigs. As you can see from the photo she's up for a laugh and appreciates sarcasm. She may be a little cheap, but in no way nasty, and is up for bedazzling or a new coat of paint. Don't let her start at the Aldi Home for Wayward Wheelchairs fool you, this lovely lass has gusto and class. I have recently upgraded to Vera and despite my love for Bernice she is looking a little forlorn in the corner of the rumpus room, especially when Vera and I head out on a date.

Such a comely lass as Bernice needs to be out and about, and is the perfect starter chair for someone tossing up if they need/want a chair. So I'm offering her up free to a good home to anyone in the Melbourne area who can come and pick her up. She may even be the perfect starter chair for many and travel all over Melbourne as part of a pay it forward campaign.

So if anyone has a forever or at least a, for a while, home where they can give Bernice the love she deserves, she's yours. First in best dressed, Melbournians."

Bernice was snapped up quickly, and now lives with Caroline a few hours away. Here she is in the doorway of her new home poised for an outing.

("The beloved Bernice. My freedom wheels." - Caroline.)

I was lucky to have Bernice and I wanted someone else to have the freedom she gave me. And I'll have to admit the first time I saw a photo of Bernice and Caroline out and about, I was filled with joy and a wee bit teary.

(Vera will also go to a new home when my tilting chair comes.)

There are many people in our community who are either unsure they want a particular aid and don't want, or have, the funds to try them out. Alternately, many simply don't have the money to purchase aides they desperately need. When you think that even one pair of medical grade compression stockings can set you back $100+ you begin to realise that being ill is an expensive business. And for many it comes down to a case of prioritising a litre of milk and some bread for their family, over a much needed chair or cane. 

So I want to propose a medical/Dysautonomia style, Pay it Forward movement.

How many of us have equipment, be it canes, wheelchairs, shower chairs, compression stockings we brought, we wore once, and didn't like, or they didn't fit? How many have gym equipment, a mini cycle, therabands etc that are just lying around thanks to a change in our health, or an upgrade?

If you've improved you may have devices you no longer need. If you have been lucky enough to get upgraded equipment you may have your old equipment just sitting around gathering dust. Why not give it to someone who needs, and can use it?

It's easy to participate:
  • Decide if you have equipment you no longer want or need.
  • Make sure it is in working order and mank free.
  • Hop onto your local support group site.
  • Or, alternatively a forum or general support group.
  • Write up a short “Free to Good Home” speal.
  • Organise a pick up or drop off, whatever you are comfortable with.
  • Know that you have made a difference in someone else's life.

Remember this about gifting the piece FREE. 

It's about paying it forward to those who may not be able to afford that chair, cane, pair of compression stockings, etc.

That piece of extra equipment you have languishing unloved in your cupboard or back room may change someone else's world.

So what are you waiting for?

Michelle :)

I would love to hear how people have Paid it Forward. Drop me a line here on the blog, via email or over on Facebook or Twitter.

Wednesday 27 November 2013

Giving in or taking control?: Mobility aides.

(I've loved this chair since I first saw it a year or two ago.
It belongs to Italian art director Fabrizio Sclavi. Full photos can be found here.)

I've seen a number of posts lately where fellow patients have been chastised by their doctors for using mobility aids. There is a perception amongst some, that to do so equates to patients "giving in" or "becoming" their illness. Whilst there will always be a small subset of patients who do indeed embrace their illness, these patients constitute a distinct outlier and are not reflective of the wider patient population. Instead, choosing to use a mobility aid for most, is an exercise in taking control of their situation and accessing the world. It can also require a large emotional leap, letting go of our stubbornness, and a swallowing of our pride.

On one hand I can understand the doctors' concern. Embracing the sick role is not helpful. It impedes recovery or management and increases what is known as, excess disability. But a large part of me wants to yell at the computer "are you serious!" Very few are the patients who truly revel in being ill. Most rally against illness, are desperate for a cure, and are driven to do anything to return to their old lives. Patient's who do otherwise are the exception, not the rule.

For the majority of patients, be they from the Dysautonomia or other chronic illness communities, to use a mobility aid, particularly in public, takes an enormous emotional wrench that is hard to articulate. Even when these devices are clearly required, taking that first step or roll can require a huge change in thinking. Acceptance is a hard road. Especially when you still cling to the hope that you'll suddenly get better and therefore not require that particular aid. Those early days can be fraught with much stress.

I've documented my own struggles coming to terms with buying and using a walking stick, and wheelchair, and finally doing the paperwork for a Disabled Parking Permit. In each case it had been a case of others forcing my hand. I went through months of increasing unsteadiness, until my children looked at me one day precariously balancing/hand walking around the car to make it from the drivers seat to the passenger seat and they simply said "you need a cane, Mum." I was walking like a drunk on a daily basis, but without their strong prompting I would never have purchased one. Same for my wheelchair. And if not for my firm but gentle OT, I would still be without my parking permit.

The use of a mobility aid when you are in your teens or 20s or 30's or really any time, is confronting. Such products are not directed at the young. My first wheelchair, Bernice, was found in the local Aldi brochure under Aged Care Products (as was my shower chair). There is an inherent belief that such products are the province of the elderly, when in fact that traverse all age groups. In the wider community looks and questioning quickly inform the user that their situation is abnormal. I still recall the look on one check out server's face when she asked how I'd injured my leg. Was it a sports injury? Had I been hiking? She looked confused and then aghast when I mentioned a neurological disorder. This is not the norm for a then 30-something woman. Whilst even now at 40 I frequently recoil from the looks, for a teenager, at a time when self-image and self-worth are being defined it can be incredibly difficult, no matter how helpful such a device may be.

For many their use signals that you are in fact sick. I know for myself having my GP fill in the paperwork entitled "Confirmation of Disability" was confronting. Not because I didn't realise that I could barely walk from my car to the house some days. Not because I didn't know that my health had deteriorated significantly. But getting that piece of paper signed made it real. I could no longer live in denial. And frankly, I was quite comfortable and happy in my denial.

For many we keep pushing on. Collapsing when out. Or simply, not even venturing out of our homes. We fight through for as long as possible, often to the point where it becomes harmful. We convince ourselves that we aren't that sick, or not sick enough, so we don't need help with mobilising. We are stubborn and often need to be coerced to accept that a wheelchair or cane may indeed be helpful. Even long after accepting that a wheelchair is needed to venture out of the home, especially if any distance is likely to be involved, I still resent having to use one. Logical me knows it helps. Emotional me wants to run it over with a tank. Repeatedly. Luckily, logical me combined with persistent family members who give me the "you're being a dumbarse," look win out more often than not.

For many we have other competing medical issues, for example pain, which we don't mention to anyone but the doctor dealing with that particular issue. As a result one doctor may be completely unaware that walking more than 50m leaves a person in bed for days thanks to residual pain, dislocations or post-exertional malaise. For many these competing issues creep up on us bit by bit over time. For example, you can normalise the subtle increases in pain until suddenly it begins to impact on functioning, and that next small increase is the proverbial straw that broke the camels back. It is often only when all these competing disorders reach that magical combination that we start to look at mobility aides. And what can seem like a sudden and un-needed decision, is actually the result of a long process of subtle exacerbations in symptoms from competing and combined disorders.

For many their choice is accept using a mobility aid or never shop, or go to the movies, or a market, or to socialise. If walking 50m equates to passing out or pain, you are unlikely to venture out on a regular basis. If however you have wheelchair you may be able to go to the shops for a few hours or visit a market. You get to be out in the world. The benefit of having the ability to participate in the community or attend family events cannot be underestimated. Chronic illness and isolation frequently go hand in hand. Depression can often follow. That wheelchair that allows a patient to go to a family wedding can be the difference in successfully dealing with or managing disability or, becoming overwhelmed by isolation and hopelessness.

For many mobility aides are used only when out in the world. At home, in small areas, they still manage to walk as much as possible. Or they are used to help with safely navigating the house when their illness is flaring. The stubbornness that stops many from wanting one in the first place frequently means that when they step in the door walking sticks and the like are thrown against the wall and we manage as best we can without. Hardly a case of giving in, or embracing illness.

For many they still attend physiotherapy or exercise at home. Whilst they are working on increasing their fitness and strengthening their endurance, to hopefully be able to walk around aid-free, these devices help us to be mobile. To get to our appointments and to continue with life as much as possible. The idea that their use will set back a patient's improvement, negates the fact that most only use them at select times and are still committed to re-conditioning their body as much as possible. Additionally, a mobility aid may allow for access to the gym that would otherwise be inaccessible. Ie, it would allow someone to conserve their limited energy to exercise once inside.

For many it's a conscious decision of how to best spend their energy. For example, if you want to go to your child's sporting event, standing or walking a long distance may become prohibitive and you are forced to stay home. A wheelchair or cane, takes one energy task out of the list. You may be able to sit for an hour or two and watch a game, or walk from the car park the long distance to the field. But often you can't do both. The wheelchair allows us to conserve our energy and participate in our family's lives. That is priceless.

Mobility aides are just that, aides. They help us to get around. They help us to last longer when out. They take away the anxiety of passing out in public, or falling over.

They are a tool in a patients overall treatment arsenal. We use medications to control our blood pressure or pain. We use compression stockings to minimise pooling. We use shower stools to stop falling over in the shower. We use mobility aides to help us interact with the world. To get out of the home and socialise.

For most patients the choice to use a mobility aid is not an easy one. We fight the decision. Often long after their use is required. We hope that one day we can put it aside. But in the meantime, we try to learn to embrace them and celebrate the freedom they give us. To be chastised for using a mobility aid after finally getting to an emotional place where you feel comfortable to use one is a hard pill to swallow.

My message to doctors is:

Support your patient. Have a discussion. Ask why. Don't leap to conclusions. Don't expect the worst. And you may just find that the decision is well thought out, very practical, and yet another important part of their overall therapeutic program.

Michelle :)

"Hey teacher. Leave those kids alone".

Sunday 24 November 2013

That time I got waaaay too excited about medical tape: 3M Nexcare Sensitive Skin Low Trauma Tape

My track run with medical tapes, or more precisely medical adhesives, has not been a good one. Prior to becoming ill this wasn't a huge problem. The odd Band-Aid would leave me a bit itchy but that was about it. Then Dysautonomia came on the scene and BAM, my body gave a big "Hell No!" to each and every medical adhesive I came across. Having a connective tissue issue has also not helped. Bodgy over-sensitive skin, that starts itching and breaking down when it's within 100m of an adhesive, has made life somewhat difficult. To add insult to injury, my every increasing ill health meant that medical adhesives became a common part of my life. IV's, surgeries, 24hr holter monitors, ECG dots, all become part and parcel of a life with complex chronic illness. And all require medical adhesives in some form or another.

Waking up from my venogram to find a Tegaderm stuck on my groin covering the incision into the femoral vein, made me want to weep. Even removing it as quickly as I could, I was left for weeks with a red, itchy and weeping groin of burning pain, all in the nice neat shape of the Tegaderm. I do believe this is about as far removed as you can possibly get from what Justin Timberlake had in mind when he was singing about "bringing sexy back."

Even the most hypoallergenic tapes and wound covers I've encountered in various hospitals, have ended with me red, rashy and weepy. Sometimes nursing and surgical staff believed me and went out of their way to at least try and find a less reactive alternative, but more often than not there was scoffing and a lack of belief which led to more red weepy rashes. Even a red arm band is no deterrent to many. I can't count how many times I have waved my red wrist or ankle band at medical staff who still insist that the tape, ECG dot, dressing they are about to use will be "fine". 

(This is the welting 2 weeks after 5 fun filled days in hospital)

It's a hard one. What can you do when you are fast asleep in theatre? You can hardly object. And at times you simply have to suck it up and endure the pain to keep a surgical wound covered to avoid infection. Although as I found out last year, those red weepy patches from the adhesive can also become infected and leave you mighty unwell. Or, when you need a holter monitor or ECG what can you do when you need to know what is going on with that pesky heart. Though I would say to all nursing staff, rubbing the skin with sand paper prior to putting on the ECG dots is one sure fire way to make my reaction even worse. Connection be damned, it's going to be bad enough without already inflamed skin thanks to taking an emery board to my chest.

(One of my scars courtesy of an ECG dot from my last 24 hour holter monitor)

So I've put up with burning and itching and scaring. The worst was perhaps my non-healing pacemaker incision which required continuous covering for 6wks. Crying as you put on or take off dressings, or watching as layers of your skin pull off like old sunburn, is not a fun past time.

(The adhesive burn pattern over my pacemaker incision was incredibly painful and many tears may have been shed. Though the alternative of leaving it exposed and risking infection in a wound that would lead straight to my heart, was not really an option I wanted to pursue.)

I did try testing to see if the local allergy dermatology clinic could find me some safe alternatives. 
(This was not a pleasant experience for either the itching and burning, 
or the week long non-bathing.)

And after two weeks of hell I was none the wiser. (After the first week they added another strip down my arm, just for shits and giggles.) Although I do now know I have an allergy to clove oil, a heap of chemicals I can't pronounce and most perfumes. All of this did not help me find safe dressings.

I do use a blue cohesive bandage where I can. This contains no adhesives and sticks to itself, and for those who need it, you can get latex free versions. It comes in a range of widths and colours and is available from a number of different companies. Brilliant stuff that my lovely phlebotomst, Jacqui, put me onto. It's the same tape they use on race horses. Me and a thoroughbred, equine super-athlete, the link is obvious, right?

(Works a treat for IV Saline)

The nurses who managed my weekly IV saline infusions were also clued up on this dressing and as you can see above it was used instead of the usual Tegaderm/tape combo to keep my cannula in place. And because it is elasticised they simply wrapped my arm with the same after the cannula was removed to provide the needed compression. I now have a stock of this bandage at home so I can take it to hospital or wherever I may need an IV these days.

*Every time I write Tegaderm, Spell Check wants to change it to, Megadeath. Somewhat appropriate I think!*

Having complained long and hard on Facebook, as you do, and lamenting that yet again I was a blistered and weepy mess, I was lucky enough to have an alternative tape suggested by one of my fabulous readers.

Their suggestion was 3M™ Kind Removal Silicone Tape 2770-1

So of course I searched high and low for this tape so I could test it. Which of course meant that I couldn't find it here in Australia unless I wanted to buy it in bulk. Now if it worked, like my blue cohesive bandage, I would stock pile the rolls. However if it didn't, 40+ rolls of useless blue tape mocking me from under my bathroom sink would not be the best use of my limited funds.

Luckily, my Facebook is filled with marvellous and generous people from all over the world and the lovely Jessi, who first suggested it, sent me a sample all the way from the U.S. of A. Thanks, Jessi.

So the testing began. I put a small piece on the inside of my lower arm with the aim to leave it on for 48hrs.

(Of course I forgot to use a pen with ink that doesn't give me a reaction. *facepalm* 
Luckily the redness did disappear after a few hours.)

24 hours in it was a tiny bit itchy but nothing to write home about. It did manage to mostly stay on after a shower, with only slight lifting on two of the corners. This was also after many hours of pre-open house cleaning and Great Dane slobber, so quite a feat.

And after 48hrs, well 57hrs really, as we had our open house, and time went by in a flurry of cleaning and praying to every deity known to man that someone would buy our house. And basically I forgot until I was about to hop into bed, which is a good sign when you think about it, the photo below shows the result.

So 57 hours later there is a tiny bit of redness but no itchiness or burning. Hallelujah! It didn't hurt to take off, didn't pull, and, most importantly didn't leave any residue.

(About 72 hours post-first putting it on.)

And today? Another day later there's a tiny amount of redness that you would only notice if you were looking for it, and most importantly, no welts, no weeping, no inflamed rash, no blisters, no itching or burning. No need for tinctures and creams. Woo Hoo! If I wasn't stuck in bed thanks to my post-open house malaise I would dance for joy. Though I may expend what little energy I have in doing some in bed, jazz hands and spirit fingers to celebrate.

So thank you Jessi. Thank you 3M. And thank you feeble brain and general apathy, that I didn't have the energy to turn on my computer camera and capture the abomination that is my bad in bed celebratory Voguing.

Now I'm off to bulk buy some tape.

Oh and if someone can suggest a waterproof wound dressing that works just as well, that would be fabulous.


I should probably add this is in no way a sponsored post. Just sharing something that worked for me and may help others who have the same issue. 

This is as close to dancing as I'm going to get today.

Friday 15 November 2013

Health Activist Awards: And what's in a photo?

Wego Health's Health Activist Awards are open to nominations at the moment. You can nominate for everything from Best in Show: Blog to Advocating for Another. I've been lucky enough to be nominated again this year for:

Best in Show: Blog (I originally wrote "Best in Shoe". Freudian slip perhaps?)
Best in Show: Facebook, and
Hilarious Health Activist.

Thanks guys. I really appreciate you not only thinking I'm worthy of a nomination, but also using up your spoons to take the time to fill it in.

But that's not what this post is really about, although I am pretty stoked

I was looking at my photo above and realising I don't look too shabby. If I look back over this past year that's a bit of an aberration. I don't normally look like that. The effort involved isn't all that worth it. But, after looking at some of the other activist's pictures I thought I should at least try to look a little presentable.

The fact that I was un-bathed, that I was still wearing my pj bottoms, and could hardly get off the couch, doesn't show up once you throw on a bit of colour, brush your hair and chuck on some lippy. I hadn't even managed to do up all the buttons on my cardigan as it was simply that bridge too far. Thank goodness for the ability to crop the photo. And the lack of smellevision.

 This is what I looked like prior.

Pasty, tired, and hair unbrushed. If you'd asked me to speak you would have had to translate through the slurring. I couldn't feel the left-side of my face and my eye-sight was complicated by some slight double-vision. Fatigue is now a constant trigger for my muscle weakness, particularly in my face and there doesn't seem much I can do to alleviate it.

In my spiffy photo, you can still see the droopy left-side of my face, which seems to be becoming more prominent. Who knew smiling could be so hard? But it is far more hidden thanks to considerable effort and good lighting. Much slapping and rubbing of my face made some movement possible, and thankfully you can't see the tremor in the muscle.

(Which is the real me?)

Now I sit back and wonder if I should have put up the unaltered version of me? The real version of me. The real version of living with chronic illness. The one that would have left me with some energy for the rest of the day. The one I see 99% of the year.

I feel like a bit of a fraud telling people they shouldn't worry about showing their sick face and here I am hiding my own. Nine times out of 10, hell, 99 times out of 100, I don't bother with make up. Hair brushing is an after thought. And bathing? Well that's why they invented perfume! Normally, I'd rather spend my limited spoons on meaningful activities like planting some herbs in a pot, or doing the household chores that can't wait.

But every now and then I have an overwhelming urge to feel girly. Sometimes I want to look normal, whatever that is. Sometimes it's simply nice to hide the pasty blancmange.

In the end it's about balance.

"But you don't look sick!" is a phrase that becomes part of your psyche. Repetition burns it into your brain. It's a bit of a trigger for me and makes me want to parade my droopy, pasty, blancmange face for all to see. A bit of an "Up Yours!" to the world of disbelievers if you will.

The reality is that I don't care if people see my sick face. I've shared enough photos of me at my worst that it's hardly a secret. And I'm open about all the less savoury sides of illness. But some days it's just nice to take the time to pop on some red lippy and brush my hair. Even if I'm going to be sitting on the couch with no one to see but the dogs. Sometimes I will even put on a nice dress, even if all I'm doing is running from the couch to the bathroom 38 times a day.

Sometimes you've got to do what's right for you in the moment. And sometimes it's simply nice to have at least one picture where you don't look like The Corpse Bride.

Michelle :)

If you want to Endorse me for the Health Activist Awards head on over to here and click under my picture.

I love a bit of Tony Bennett,and this duet with James Taylor is just what I needed.

Monday 11 November 2013

Treading water

Some days it feels like I'm treading water. Or maybe it's mud. it certainly feels heavy and confining enough to be mud. It clings and drags and consumes. Treading in my endless muddy water, barely keeping my head above the ripples I create with my ineffectual flailing. Exhausting. Draining. I hate those days, or should I say these days. Because that's what it's felt like of late.

I paint on my smile and put on my Can-Do hat. I do what has to be done and try to live in the moment, rather than the overwhelming notion of tomorrow or the next day. Time never ending is intimidating in it's endless expanse. It swamps me when I try to think about it. When I try to make sense of it. So much is in flux and it's tiring. There is a desperate need to finish something. To have an end to even one small thing. A decision made. A task completed. A symptom to finally reign in. An answer finally bestowed. So that I can dump it and forget it and move onto the next task at hand.

But life isn't like that. Illness isn't like that. Neither care for my need of ends. Flux is hard to deal with. But it seems to define life in all it's permutations. A permanent state of flux. There are no nice neat boxes that I can pack, seal and stack in neat rows. No storage lockers for all the sorted and completed tasks. All labelled and marked. Colour coded to reflect the effort taken and the task overcome. So I can go in at need and reassure myself that those are the burdens I no longer need to bear. A tangible tally of all I have dealt with and completed. To give me the impetus and encouragement to know that today's issue will be sorted. That it will have an end. Nice and crisp.

In my more sanguine moments I know that such dreams are unrealistic. In those moments I can tell myself that this is life. In those moments I am okay with the uncertain nature of life. I can take a deep breath and move on. In those moments I have the reserves to deal with the lack of tangible endings. I can appreciate that uncertainty also has that magical flipside of as yet unknown possibilities. That the future is unwritten and that mystery can sometimes be the most precious gift we can be given.

But today I am going to wallow. I am going to let myself feel the weight and the exhaustion. I'm going to pout and moan and shake my weakened fist at the sky, and scream obscenities at the universe. I'm going to shout about the unfairness of life, the lack of justice in the world. I'm going to sob into my pillow and throw plates at the walls that surround me.

And then...

...when the roar is over. When my fury and and sadness is spent. When the venom that is that little voice in the back of my mind, is finally exhausted and silent. I will take a deep breath. I will feel the lightness of my being. I will stand. And I will be ready to accept the possibilities before me once more.

In the words of Maya Angelou (1978)

Still I rise.

This is one of the first of Maya Angelou's works I ever came across back when I was a teenager. I remember feeling the power in the words as I read them on the page, but it wasn't till I was older that I realised the true importance of her work. Hearing it in her own voice sends shivers down my spine. Whether the voices that harangue you are external or internal we can choose to be stronger. We have to believe we are stronger.