Saturday, 31 January 2015

What if today you chose kindness?

(Frida Kahlo, Self -Portrait with Thorn Necklace and Hummingbird, 1940)



What if you were kind to one person today?

What if that person was you?

What if you said 

I'm enough



What if you allowed yourself to believe 

That perfection is but a lie

And imperfection the masterpiece

That the things don't matter

That the what if's

And the if only's

Are the sleight of hand we use to hide the truth




Lies are told

By the empty sages who howl at the door




The musts

The shoulds




False prophets yell from street corners 

To tell you the wrongs

The failings

The disappointment

The bruises and the hurts

Delivered and delivering.




Empty words 

Bleat incessantly

Beat you down into submission

Ease in agreement

False beauty with talons

Acquiesce and be torn apart

Momentarily placated

Before

The goal posts move

And

Conflicting commands

Come from new corners.




Close your ears to sirens

Bind them

And fill them with daisies

Hold the silence

Listen for the first whisper of truth

Let it grow





The rhythm of the heart writes on the stone

Slow and steady

While the world around ebbs and flows

While beasts scream and claw

And clamber to cover and obscure




It continues below. 

Waiting to be recognised

Waiting to be found




Feel

Vibration and resonance

Know 

That it belongs





The song plays

While the mosquitos buzz

Hear the breeze 

Gentle caresses on leaves above

Eucalyptus to cleanse

Hints of rosemary 

For remembrance and clarity

Scent and sound.

Wipe the oils on your brow

And wrap the leaves round your heart. 






Focus on the melody

Let the words rise





Enough 

Worthy

Okay




Believe.




What if today you chose kindness?





Michelle





Tuesday, 20 January 2015

#Hospitaglam: Giving illness a very fabulous middle finger.

(Yep blue hair, fabulous frock, bright red compression stockings and sparkly red heels for a pacemaker and cardiology check, I may be a fan of  #Hospitalglam)

I've been stewing over the reaction to #hospitalglam for about a week now. Comments have ranged from supportive to outright rude. And it is the later that have really gotten to me. Both the unwell and the well have slammed the concept. And whilst I must say I am not surprised by the comments of the healthy, I am disappointed by many of the comments from fellow patients condemning her for making their lives harder, or doubting the veracity of her health issues.

For the uninitiated #hospitalglam is the creation of Karolyn Gehrig and can be found on Tumblr, Instagram and Twitter. Gehrig was diagnosed with a form of Ehlers Danlos Syndrome (EDS) and like many of us with chronic illness, is a frequent flyer in the medical system. She wears funky clothes (I have serious dress envy over her pill dress) and poses for the camera in an array of hospital and clinic settings. Many have followed her example, posting various selfies of their own glammed up medical experiences, adding them to the hashtag. The concept came to light recently in mainstream media and the discussions around it have been interesting, and at times infuriating, to follow (why I read comment sections I'll never know. It's a bit like picking a scab until it bleeds. Or watching QandA.) The issues surrounding the accuracy of the information relating to EDS is an issue for another post, but I will say, journalists pick up your game. It's not that hard to find accurate information about this collection of disorders.

When you become a patient autonomy takes a hit. The very nature of disease and injury mean you are reliant on another, a doctor, to direct certain aspects of your life. You are reliant on the expert knowledge of treating teams to direct aspects of treatment and allow access to certain medications. Part of being on top of your disorders necessitates regular reviews and things like blood tests. You must, to a certain extent, suck it up, (as my your control freak nature screams in protest.)

You must accede control to a medical system which trundles on oblivious to your personal needs and desires. The hospital PA doesn't care that you want treatment yesterday rather than waiting for six months. Hospitals feel more production line, than houses of healing as time poor staff are forced to minister to an ever growing multitude. You must tell your story a bazillion times to every medical or allied health professional. You must play the game to a large extent, to have access to care.

The clinical nature of medicine both in the hospital or regular clinic is frequently cold and impersonal. You have to wear backless gowns and bear your body to strangers. You have to lie there while you are pushed and pulled, spoken about rather than too. As much as you pride yourself on being able to self-advocate, and some like myself are lucky to have a husband who is a strong advocate for my care, there are times where you are blocked. A doctor can turn around and say no to a treatment and given the rarity of my presentation, I know I am limited to where else I can go. Choice is a lovely word, but when it is spoken about in the context of health, it negates the realities of issues like geography, finances, availability, and rare illness.

Control is an illusion and when you are thrust into the medical system, particularly as a chronic or long term patient you are slapped in the face with this reality. It's easy to despair. It's easy to feel beaten down and hopeless. It's easy to lose yourself to illness and the world that surrounds it. How we find our way out is complex. The paths we take and modes we employ differ greatly. And we arrive at that place at different times. But if we are to not simply exist but thrive, we must find a way to reclaim control, and our sense of self, however that may look.

#Hospitalglam is one method of taking back control. And one I relate to strongly (Anyone who followed my Clicking My Heels for Dysautonomia fundraising last year, or follow on FB, will understand why I am a fan of the #hospitalglam concept.) But it is not the only one. Gehrig is not telling people what they should do. She is not telling people they must take her path. She is sharing what works for her and the large following she has garnered suggests that there are many people who can relate to her, and her mode of rebellion/control.

I have seen headlines talking about #Hospitalglam, taking the “ugly” out of illness, or removing the “shame.” Neither word deserve a place in the illness narrative, and their use misses the point of the hashtag. There is no shame in illness. It is simply something that occurs as part of life. It doesn't matter how good a person you are or how well you eat or exercise, illness can still come calling. No one wants illness, we don't actively seek it. Nor do we do things to prolong it. “Shame” is closely linked with blame, and if you have been ill for any length of time there will be someone who tells you how you are to blame for you continuing malady, be it your diet, lack of appropriate religiosity, lack of kitten cuddling or refusal to see their favourite swami or eat 85kgs of [insert super food of choice] each day.

We are continuously fed a lie both in the community and through the media that illness is shameful and ugly. Just to clarify NO ITS NOT. “Shame” and “Ugly” are judgement statements. Why should we be judged or internalise such a view, for something that is out of our control? So not only do I have to deal with a debilitating illness but now I must also feel ugly and ashamed in the process? I say F**k that!. Yes there is pain. Yes there is vomiting. Yes we fall over. Yes we require medical aides. We are cut and sampled. Swathed in bandages and stitches. We may need feeding tubes or colostomy bags. Gain excessive amounts of weight due to hormones or treatments, or end up little more than bones in a skin bag due to malabsorption and paralysed stomachs. Our mobility, speech, thinking etc may be impaired. We may be depressed, anxious, dealing with bipolar disorder or schizophrenia. But none of that is shameful or ugly. They are merely the cards we are dealt. To equate illness in any context with shame or ugliness is insulting. And perpetuates damaging stigmas. Again, I say to the media, pick up your game.

In #hospitalglam many see an alternative to the paralysing and disempowering pity narratives of illness. They see an “up yours” to illness and a system both medical and societal that says to be ill you must conform to a certain paradigm. You are either pity worthy or inspirational. But in neither case can you win. There will always be someone to tell you, you are doing it wrong. The classic “you don't look sick” in all it's forms is thrown at those who wish to frock up or pop on some lippy (if only putting on my heels cured my broken genetics). Alternatively, if you stay in your pjs and trackie dacks you are becoming your illness and need to pull yourself up by your bootstraps. Damned if you do and damned if you don't. And these are the themes peppering the comment sections of articles about the hashtag.

Gehrig is not telling anyone what they should or shouldn't do. She is expressing herself in a way that works for her. The media interpretation of #hospitalglam has missed so much of it's intrinsic value. Her behaviour is not unique (though it can't be framed as an inspiration narrative by the media unless it is seen as an abnormality), many frock up in hospital and at medical appointments, but hers has been a more public and organised expression. Given her background in performance art it is not surprising that this is what works for her. But the way she and others have chosen to express their experience is so anathema to the wider societal views on illness that it has been held up as more of the inspiration porn of which the media is so fond. Just like those dealing with disability, the expectations of those with chronic illness are so low, any achievement is seen as miraculous. We are taught that such life events are the end of the world, so many are unable to conceive of a life filled with joy or fabulous frocks and illness. It is this framework which is so angering to many patients who feel like #hospitalglam represents yet another burden to add to their experience, rather than a moment of choice with a bit of tongue-in-cheek sparkle. Thanks media.

Patients are people first. And people are inherently diverse. The way we react to illness varies greatly, but that doesn't mean we can't appreciate or support the way others choose to seize the day. Even if we don't understand or like their particular choice. While #hospitalglam celebrates fashion for it's power to give illness and the medical system the finger, others use art or music. Some form book groups or join support organisations. Some garden. Some engage in cosplay. Some are Trekkies and yet others, shudder, Beliebers. The idea that illness is some sort of end of the world scenario is far from the truth for many. When you are living with an illness or disorder that may never go away you find ways to deal with it, and that will look differently for different people.

Whether other's do or don't like #hospitalglam is beside the point. This is her experience and her expressive outlet. She is entitled to do whatever works for her. Just as every patient is entitled to do what works for them. As someone who wore sky high red sparkly heels to their MRI and bright red compression stockings during their pacemaker implantation, I celebrate her chutzpah and raise my bright red lippy in salute.


Michelle

Friday, 16 January 2015

Confusing


There is nothing better than a Neurologist who takes you seriously. There is also nothing worse than a Neurologist who takes you seriously. Better and worse, intertwined and inseparable of late. Since becoming ill I keep coming back to the idea from F. Scot. Fitzgerald that the holding of two opposite ideas and functioning, equates to intelligence. If that's the case, illness and intelligence are fond bedfellows and I'm some kind of closet genius. I wonder if he'd mind if I added a caveat, to the whole 'functioning' part of the equation. Maybe we could go with 'mostly' functioning. Or replace it entirely with 'still breathing'. I am pretty skilled at stuffing my mind with opposing ideas and breathing. Pure genius. Watch out, Hawking. I'm coming for you.

It's been six months since my last visit. We drove the three hours into the city. The land slowly transforming from flat paddocks dotted with cows and ancient pines, to smoke stacks and gritty pall, and concrete, more concrete and the tang of exhaust which always leaves me with a sore throat. Inner city Melbourne is lovely in it's eclectic nature. Green-leaved trees line the streets and expensive real-estate is set aside for verdant parks (we're not called The Garden State for nothing). Tram lines run everywhere and tight streets, packed with cars are bordered by a mix of everything from Victorian Terraces, Art Deco apartment blocks, and modern glass and concrete monoliths. Car repairers, sit next to surgeons, pubs, cafes, private residences, sex shops and art galleries. A quick glance upward and the sky is seen through the lens of tree branches and a maze of wires. The hospital is like the city. A mish-mash of architectural styles, punctuated with small green oases for patients and families to steal some reprieve from the ravages of the hospital setting. At the entry you can get your yellow fever inoculation, pick up your prescription, buy a Tatts ticket or plan your next overseas trip. A little something for everyone.

A lucky break means a park out front and a small clunking elevator ride up to the fourth floor. The way-too-familiar waiting room is muffled. Part of me imagines a frazzled librarian-type, lying in wait to step out and wave their disapproving finger and send an irritated “Shhh!” in our direction,should we make a noise or, godforbid, laugh. Excitement at an empty waiting room is quickly quashed as my appointment time comes and goes. The elderly man next to me sits head tilted backward sleeping. His wiry arms relax on his bone-coloured trousers as a small throaty snore starts to escape his open mouth. Across from us a woman and her two daughters sit heads huddled together over a magazine on the mothers lap. The well groomed woman to the right coughs and splutters, apparently unaware of the concept of infection control, or tissues.

My Neurologist is friendly. I've seen her for nearly seven years now. She's happy to see me on my feet and not in my chair, but misses my red heels from the past year. I look less gaunt. She loves my dress. We chat about my blue hair and how I've been as we make our way down the corridor to her room.

Oh you know, okayish.

Which of course is and isn't true. But okay is relative these days. Okay means same old same old. Okay means I haven't done a massive nose-dive since I last saw her. Well at least not in the neurological sense. Okay doesn't mean regular-folk okay. Regular-folk Okay and I don't socialise in the same circles any more. Okayish means I'm still broken and breaking. But nothing exciting. Just the usual boring, meandering, decline. I break in all the meh ways.

I stumble and shake over to the table, lay down and roll off my purple stockings. The tuning fork hums somewhere in the distance, even though I can see it is placed directly on my foot. Is it cold? No? What about here? Bend your knee. Relax. Tap. Over excited knee reflexes shoot out and shudder. My feet sit there, unresponsive and unimpressed with repeated attempts to elicit a reaction. Push up. Push down. Extend. Shake and collapse. Can you feel this? What about this? Here? Here? The factory line assessment continues until she is satisfied that my body is intent on being obstreperous.

The listing begins. All the things that are wrong or more wrong, than last time. I am allocated a new word “Confusing.” I add it to my long list of other diagnoses which includes the perennial favourites “Special” and “Interesting” and my other C word, “Confounding.”

Medications are discussed and dissected. Some are agreed upon others discarded. Something to stop me throwing my coffee everywhere? Or flinging glasses? Hmmm not yet, the side-effects outweigh the benefit. Something for migraines. Yes. We'll go with that. Collaborative and fruitful discussions a rarity in the medical world, are appreciated on the odd occasions they occur.

Two new firsts are added to my referral folder: Neurogeneticist and SPECT scan. My request, so I can't complain. One more attempt to find the elusive diagnosis. A label that I can print on a card or whip out at dinner parties. Two more opposing ideas are held in the palm of my hand.

I don't care if there's no label it wont change my treatment. Let me wave my Zen banner for all to see. I am woman, hear me roar my lack of caring.

Sits snuggled next to,

I really really want a concrete label to wrap my arms around. Please give me a label. Someone. Anyone. please......

She doesn't bat an eyelid at my request. My listing, combined with Mr Grumpy's clarifications are enough. It seems things are looking more of the CNS variety as more weirdness comes knocking. My muscles aren't supposed to be doing the things they are doing. My cognition shouldn't be as bad as it's become.

A new script sits in my bag alongside the referrals and I make my way back out the door. We stop long enough in the city to grab a decent coffee and some sushi and quick visit with our eldest. A long black and something for the pain and nausea and we repeat our trip in reverse.

The drive home we are quiet. The rain is pounding. We hit the patch of the drive where black cows stroll under the giant power lines that link the coal pits of the Latrobe Valley and the city. Shirley Manson bursts out of the speakers:

This is not my idea of a good time.
This is not my idea of a good time.
This is not my idea of a good time.
This is not my idea.

CNS hey? So it really is “all in my head.”

Mr Grumpy doesn't miss a beat.

Just think of all the time and money we could have saved if we had listened to that doctor way back at the beginning!

Sometimes you just have to laugh.

Michelle

Monday, 12 January 2015

Rediscovering the Lost Art of Breathing.

The bliss of an empty beach cannot be underestimated. 

I should be writing. I brought all my book notes. The reams of printed paper covered in a multitude of black pen edits. Added words. Heavily crossed out words. The "what were you thinking, Michelle?" edits. Instead I am simply sitting at a rusty, glass topped table on the back porch of a cream weatherboard. I trace the rough edges of the metal work with my fingers and listen to the waves crash on the shore 100 metres to my right.

I can hear birds everywhere. In the scrubby beach dunes, darting in and out to the overgrown pig face and the gnarled banksias. Each day a little group of blue-helmeted finches dart around the brush outside the kitchen window. Little fluffy brown babies, just getting their wings, follow springing from twig to twig. Gulls floating effortlessly on the sea breeze, turns and a myriad other sea birds casually flying over the odd fisherman or float in small groups on the gentle waves near the foreshore.


I'm burnt. On my legs. An odd pattern marked out by dog slobber and the sticky sand that gathered in haphazard patches on my legs. It hurts. A lot. The breeze is kind but still tingles as it passes. Sheets and hands make me yell. It goes against all the Slip Slop Slap messages of my youth and manifests in the odd twinge of guilt. But it is a good feeling. My legs haven't seen the sun in years. They are always covered in compression stockings when I head out. Never to see the light of day. Or they are hidden away in the house with me. Too ill to head outside. But I forgot. I forgot all of that. I sat on the beach and whipped off my violet Size I 20-30mmHgs and stood in the waves propped expertly by Mr Grumpy. I stood there and felt the cool waves hit. One after the other higher and higher. I felt the sand slip from under my feet and rejoiced in the feeling of moving lower and lower, consumed by the fluid grains. When I reached my limit I lay on my beach mat and examined the infinite blue of the Summer sky. I felt the warmth of Freyja's body as she cuddled up close. And the feel of her paw on my leg and her tongue licking the salt off my leg. I breathed it all in. And it was good.



I've walked on the beach. Not far and not for long. But I walked. Slowly. Gingerly. Slipping and sliding. My walking stick disappearing into the loose sand. My youngest a few steps ahead resolutely pushing my wheelchair just in case. I follow the deep ruts left in the sand like breadcrumbs to the biscuit coloured sands we make our own. The soft deep sand up near the dunes and the stable darker form down closer to the waves. I have walked the midline between surf and dune, where the shells and detritus from the sea gather. I stopped and collected. A haul of sea shells whole and broken now lay on the table next to me. Pippies and oyster shells, clams of various sizes and the odd conch. Most I have no name for, but their size, the curve of the edge, breaks smoothed by the endless churning of sea and sand, catch my eye and draw my hand. My legs ache and I've tumbled but it has been blissful.


I have eaten foods I should not. I have downed expensive Ondan to stop being ill and put up with pain. I have eaten ham and turkey and a little spread of mustard pickles. I luxuriated in spinach and pepitas. Walnuts and raspberries. I sat with my family and ate Christmas dinner. And fish and chips and drank wine. I felt sick to my stomach and deliriously happy.


I have laughed with my family. Told bad jokes and endured way too many puns. We have hugged and we have sat. We played board games and paddled in the sea, and walked arm in arm up the dunes. We played cricket on the beach Christmas day. An Australian tradition that I have been unable to participate in for years. I batted. I bowled. I fell over and I laughed. We are staying in a house lent to us by a friend. And Mr Grumpy has gone above and beyond to make it restful and fun. I have been spoiled and I am truly content.




I've stayed up late and not rested. Walked on the beach without compression stockings and failed to hydrate properly. My knees and ankles are swollen from my efforts but I walk up the path from the beach again and again. My family simply smiling and shaking their heads, knowing it's pointless to insist that I pace myself. I have done everything I am not supposed to do and it's been magical. My hair is at angles from sea wind and salt. There is sand crusted in my stockings and on the rims of my wheelchair. I can taste the sea salt on my lips and I've lost hours simply gazing at pristine blue Summer skies. I have lived. I am exhausted and I will pay. But every drop of pain and illness. Weakness and vomit is worth it.


I sit on the cool concrete step out front now. The sun is going down and Angus and Julia Stone sing from my laptop. I can hear waves and laughter. Birds and the gentle sound of the wind through the yukkas in the yard. I can smell salt in the air and see it's mark on the house we have been inhabiting. I feel healed and cleansed. Renewed and reborn. For the first time in a long time I am breathing.

Michelle



Wednesday, 31 December 2014

10 Most Popular Posts for 2014


As 2014 comes to a close I thought I'd link up my Top 10 most popular posts for the year. They range from deeply personal posts to issues relating to health care, disability and chronic illness. A little something for everyone.

Thanks to everyone who has read, commented or shared my posts over the last year. And a huge thanks to all who have sent their support and good wishes through what has been a bit of a rough year healthwise. Here's to a better year ahead for all. xx


1. When being a woman is an impediment to medical care: Dysautonomia

"A quick review of patient support networks reveal a clear pattern of attributing physiological symptoms to a mental health diagnosis. And as many of the reported comments reveal, being female is a clear factor in this leap to a psychological aetiology. Comments range from being “too young”, or “too pretty”. That a “boyfriend”, “husband”, or “baby” would cure them. Other terms from “Working Women's Syndrome” to “Bored Housewife” are used. And diagnoses such as Anxiety and Depression are doled out with alarming regularity, and frequently without referral to an appropriate professional for official diagnosis or treatment."

2. Be quiet little disabled person. You're making me uncomfortable.

"Is she really surprised that PwD have a voice and can use it? That we have minds and can formulate our own opinions? That we know how to use social media? And that we are no longer content to sit back and accept the ableist behaviour of the wider community. No matter who the perpetrator or the level of their transgression?

Her reaction plays into the idea that PwD should sit back impotently and wait for others to speak and do for us. It plays into the idea that we should sit there smiling and grateful for the crumbs and pats on the head doled upon us by much of the wider community. It plays into the idea that we are incapable of having our own voice."

3. This is NOT funny.

"The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps."

4. Letting it go.

"I am grateful every day for those who show they care, online and in real life. For those core people who make me feel loved and safe. Who hold my hand when I need it, instead of expecting me to hold theirs because my illness is a burden to them. For those who offer their concern and care and don't tell me how much of an imposition or hardship it has been for them. For those who know what I deal with and how I deal with it, and don't flit in only to tell me how to manage my illness that they nothing about, before flitting out again. For those who give me dedicated time rather than the scraps left over from their busy lives."

5. Just to clarify.

"We see joy where you see nothing.
We find humour where you see darkness.
We smile, because our spirits shine.
Many of us thrive with illness.

I say with rather than despite, because it is part of us we can't deny, but it is not all of us. It doesn't define us. And it doesn't deserve the energy required to live despite it's presence."

6. Prove it.

"I am tired of others asking people to prove their disability. To prove that what they experience is real. That it is legitimate. I am tired that there is a continuing pervasive idea that only certain very visible issues are genuine or valid disabilities. I am over people who think that they have an instinctive right to judge the legitimacy of a person's disability. I am over people who have absolutely no expertise and no idea who suddenly feel they are experts in the field of disability and have developed some sort of superpower that enables them to identify disability at a single glance."

7. Without your health, you have nothing.

"Illness doesn't care. It doesn't care if you run 10km everyday. It doesn't care if you only eat organic. Or have never smoked or consumed alcohol. It doesn't care if you help old ladies across the street or kick kittens for fun. Good, bad or indifferent. Illness happens. Disability happens. Life happens. Genes can kick in, or accidents can occur. Yet we have so demonised the idea of illness that we fear and judge it."

8. Saturday night.

"She is sitting, bent in half on the hard toilet lid. Chest pressed to knees. The lights above beat down on the tangle of black hair on the back of her head. Pain-sweat sticks random hairs to the nape of her neck. She catches her breath with each heightened burst of pain. Cold smooth tiles anchor her feet to reality. She holds tightly onto that feeling, focussing on the texture below her heals. Overly controlled breathing, a futile attempt to control the situation. She continues to fight long after the battle is lost. Pain, misery, and lost dignity are thick in the air."

9. Stupid.

"Old familiar shoes. The story of my life. So often I fall back to what I've always done. Even when it hasn't worked. Even when it has ended up leaving me worst for wear. Since becoming ill I have teetered between trying to forge a new and more positive way of doing things and my old anally retentive, must do everything, all the time, push, push, push, way. That old way has served me well over the years. It's very familiar and very comfortable. In some ways it has worked over the last 8 years as well. It led me to a diagnosis, a good team of doctors and treatment. In many ways it has kept me going through the hardest times. But it has also been destructive in many ways."

10. It's the lack of a permit NOT that they don't 'appear' disabled.

"Here we are again with sloppy journalism that is representative of the views of the wider community. Back to the limited idea that all true disabilities are visible. The corollary of such a view is that if you can't see it, it's not a real disability.

There is a pervasive idea in the wider community that:
a) True disability is visible, most commonly involving a wheelchair.
b) That the illegal use of parking permits is rife.
c) That it is easy to obtain a parking permit.

a + b + c = people without a wheelchair, who look well, are frauds and should be called out/ridiculed/abused."


Happy New Year to all.
May 2015 bring love, joy 
and happiness.


Michelle

Wednesday, 10 December 2014

Neuropathy is a large pile of suckage.

(A fakir performs the bed of nails trick, circa 1955. Peter Purdy / BIPs / Getty Images source)

Morning are the worst. I'm unsteady, nauseous, my blood pressure non existent, and life just seems to suck more. Not that I have ever been a morning person. Way back in the dim distant past that was my pre-sick life, I was a night owl who greeted mornings with dread and expletives. Now I have the added pressure of a body that dehydrates overnight until I feel I must look like a dried up prune (mirrors are avoided at this hour for fear I'll be turned to stone should I glance at one. So the prune thing is supposition. I may be more sultana than prune, who knows). I also have body that hates to be upright at the best of times and is very reluctant to move from a night spent horizontal when Freyja starts whining at the door desparate for her morning pee.

This morning as I stumbled into the bathroom I hit my knuckles on the door frame. Hard. So hard it made Freyja jump. I let out an instinctive yelp. And then realised it didn't hurt. Not a bit. I looked down at my red and swollen knuckles. I'd heard the noise. I could see the result. But nothing. No pain. Even in my muddled morning state I had a hmmm...? moment.

I flopped down onto the tiles and looked at my hand which is apparently so inept that it can't even register pain. Sure, I pushed on it and I could feel that. But still no pain. Another defective part of my body to add to the list.

Neuropathy for the win!

It's a weird beast. How can I be in so much pain in some parts and so little in others? Yesterday, I lay on my bed trying not to cry as the pain shooting through the toes of my left foot was so intense. Today, I whack my hand and nothing.

It's not the first time.

I cut my leg whilst shaving and left a blood trail round the bathroom. If I hadn't noticed the blood I would never have known I cut myself.

I've pulled rose thorns from my skin, only noticed because something was tugging on my clothing.

I burn myself on the stove on a regular basis. And the oven. I have been burnt by steam and by splattering oil.

Even when I sliced my thumb the other day the pain was not what it should have been given I had a 1cm cut deep through my nail and top of my thumb.

When I had my last Evoked Potentials test done, the tech kept asking me if I was okay as he kept turning up the device while I sat there unmoved.

Temperature sensation is long gone in my legs and halfway up my arms. I have a spot on my back that is still able to register temperature but no where else. If not for the raging red colour on my skin I wouldn't know the shower was too hot. And I've had burns from heat packs I didn't know had been overheated.

And yet, as I sit here typing I can feel my feet burning, only somewhat dulled by the Lyrica. I can feel the tasaring in my left foot. And the small spot on my lower back that feels like you are rubbing salt and ground glass into an open wound from just the pressure of the air in the room.

And the pain on the right side of my stomach that my gastro decided was neuropathic. It varies from knives, to Knives, to KNIVEESSSSSS!!!!!!!

One part the fiery pits of hell and tear inducing pain, another nothing but void.

I can't even be broken in a consistent manner.

Maybe that's why my doctors keep telling me I'm "special."

Neuropathy is a large pile of suckage.

Michelle :)

Monday, 1 December 2014

Australian and New Zealand Dysautonomia community resources.


I am waaaaay behind in replying to emails. Time flies by and I lose days to this very inconvenient and uncooperative disorder. And the emails pile up way beyond my ability to catch up. So thought I'd do a short post regarding the three main questions I get asked.


Question 1

Number one comes from contact with Australia and New Zealand patients looking for a place to start, and doctors to see. I don't keep a list of doctors on hand and am reluctant to recommend any one in particular as one person's godsend can be another persons a'hole. But there is a place to go.

If you are from Australia or New Zealand there is a combined Facebook group which has files relating to everything from local doctors to local blogs. It's a thriving group with nearly 5OO members and is a fabulous supportive community. There are periodic catch ups in both countries and heaps of local information relating to things from Special Access medication procedures to applying for various welfare programs and mobility aides. It is a closed group so only other members can see posts and is for Australian and New Zealand residents ONLY.

The group can be found HERE


Question 2

Number two I am also asked if there is any local research. And luckily the answer is YES and they are often recruiting.

The Baker IDI Heart and Diabetes Institute has a lab where Dysautonomia research is undertaken, from drug trials (eg Droxidopa) to underlying mechanisms. A number of the doctors undertaking research also run clinical practices and see patients.


Question 3

Number three is there a local Dysautonomia charity. Again the answer is yes.

There is The Greg Page Fund For Orthostatic Intolerance, which raises funds for a range of research. It is also the fund for which I have been raising money for the last year. As you may recall Greg Page was the Yellow Wiggle and had to stop wiggling thanks to the development of Orthostatic Intolerance.


But wait there's more

2013 I dedicated Dysautonomia Awareness Month to Australian and New Zealand stories. It was great opportunity from patients and their family members from both sides of the pond to share their stories. So whether you're from Australia or New Zealand I'm sure you'll relate to the stories told

A roundup of all the submissions can be found here.


So there you go until I can get on top of my email nightmare I hope that helps a little. There is a small but growing patient community in both countries and lots of support to be found on the Facebook group.

Michelle

The musical accompaniment had to come in the form of the Australian New Zealand powerhouse that was Crowded House. Love belting out this song



I am on the last week of my year long fundraising so still time to share or donate.

You can head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $4,300, keep donating and hopefully we can reach $10,000 (ends Dec 9th 2014).

Thursday, 27 November 2014

Low High

Earlier this year I was super excited to head to my first concert in years. I haven't seen a live music act since becoming ill in 2006. I had tickets to see Scissors Sisters way back in 2007, but had to give them up as I was spending more time bent over my toilet or communing with the floorboards than upright. Then this year, which has been my year of worsening health and also the odd, "Screw it!" moment, I decided I was going to a concert.

I wrote about my excitement. Ella Hooper had put out a song The Red Shoes and it seemed kismet had finally gotten off it's arse and said "Here you go Michelle. After a year of shite and nearly a decade of crap you get to have some fun." In all fairness to kismet I may have misheard or misinterpreted it's words. My cognitive function can be a little poor on occasion thanks to that whole poor blood flow thing.

But here was a song about red shoes, put out by an artist I've followed for years, my shoes ended up in her fan video for the song, Mr Grumpy bought tickets, the venue was happy to help me negotiate the stairs, Ella even chatted on Facebook, and the single launch fell exactly on the one year anniversary of getting my pacemaker, Jeri, put in. All I needed was a choir of angels and nymphs throwing rose petals before me to fill in the moment to perfection.

(Artsy photo of The Red Shoes ticket in my red shoes.)

Then I stupidly declared to the world I was telling my body, "Screw you, body. I'm going to a concert. You can't stop me!" And like the petulant child it is, it raised my "screw you" with a "screw you and the horse you rode in on."

A few days before we were supposed to be heading to Melbourne my symptoms started to flare. I put on my blinkers and started some very peppy self-talk.  But things got worse, and worse. So on the day where I was supposed to be in Melbourne seeing Ella Hopper and bopping along to The Red Shoes, I was stuck in Emergency.

(Screw you body, I'm still wearing my red shoes! Even if they are squishy slippers)

I think I held it together for about the first hour, but I am not ashamed to admit there may have been tears. And for about a week after I rocked some fine ennui. Good ole Mr Grumpy did offer to still drive me to Melbourne to catch the last hour or so if I wanted, but a three hour car trip after an afternoon and early evening spent in Emergency was not exactly the best move. So I chose a pity party for one instead.

Cue a few months later and Mr Grumpy spots that Ella Hooper's album launch for In Tongues is happening in Melbourne on the 6th of December. Unbeknownst to me Mr Grumpy contacted the venue to see if they are wheelchair friendly. Sadly no, but they are very happy to accomodate me and hoik me up the stairs so I can go. After some discussion about me not wanting to get my hopes up and not wanting to waste cash again, Mr Grumpy had his own "Screw it!" moment and I am now the proud owner of two tickets to the Melbourne album launch!

(My nanna self is usually putting on her pjs and getting ready for bed at 9pm.)

So next week I am making my way to the city again. Praying to every known deity that my body will hold it together so that finally I can see Ella  Hooper sing The Red Shoes while I dance badly in my chair and sing along. No idea how long I'll last being late at night and the Summer heat, but Screw It! I'm going to give it a go.

I'm going to carpe the crap out of that diem!

Michelle

Low High seemed the perfect pick off the new album. Amidst all the highs and lows of late I'm focusing on loving and living this life I have.

 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $4,300, keep donating and hopefully we can reach $10,000 (ends Dec 9th 2014).

Monday, 24 November 2014

One of those days.

(Giorgos Rorris, source)

Today was one of those days.

In truth it began yesterday when I walked from the bedroom to the lounge to speak to Mr Grumpy. Only to disappear behind the couch as the world went black and my legs buckled as if their bones had suddenly been vapourised. Unphased by my disappearing act, Mr Grumpy remain seated on the couch.

Do you need a hand?

Give me a minute.

Okay.

He remained reading a book on his tablet, waiting for me to compose myself. More concerned that I was about to smash my favourite coffee mug than any stress over my state. My 40th birthday present to myself. He knew I'd be more upset about breaking that than any limb. I appreciate that more than words. No fuss. It's a gift. He knows me so well.

I struggled back to a seated position. My legs trembling and world spinning. A few words to let him know that I was ready to be picked up and poured back into bed.

A foray back to home and family to eat some tea. Before being carried, slurring, back to bed after collapsing sideways from a seated position on the couch. Exhaustion, pain meds and a hot pack all that was needed to fall into a rare deep sleep.

This morning I pushed. I showered. I dressed. I was determined. I had a plucky can do attitude. And then I sat looking at my computer, vague. Words there just out of reach. A jumble of ideas and sentences that I'd just start to understand before they vanished leaving no trace behind.

I drank. I ate. I had more coffee. I sat outside in the cool air and the rain. I sat and I stared.

It's a hard place to inhabit. The Vague Lands. Empty. It feels like a part of me has been stripped away. Losing my mind. Losing me. My face numb. My hands numb. It feels like I am moving in slow motion. Through treacle. The tremor and pain in my hands worsens. Cramps in my feet curl up some toes and splay others. I can feel the failure looming closer. Quicker. My head heavier. A small flicker of alarm registers in my mind, but is heard through the thickness of decreasing consciousness.

I sit watching a small snail glide down the brick wall of the house. The cool moisture in the air a call to all that it's time to move. To explore. To find its way to another of my pot plants. I envy that snail. Gliding effortlessly. Leaving a glittering trail behind. While I struggle to sit and breathe.

I call for assistance. My youngest to carry my laptop. My limbs too weak and unreliable. I daren't carry anything of value. I lift my feet and stumble through the house. Lead and mud. The dregs of my mind urging me on. Telling me it's not far.

Lady Day continues to play on my lap top. God Bless the Child. I feel more than hear. I have her languid voice on loop.

To fall on the bed in my darkened bedroom. I can hear the rain once more. Heavier now. But more distant. The fine line between passing out and sleep is reached. My youngest grabs me another drink but I am too tired to register it's presence. My response to the question of need merely reflex. Drink? Yes. Heat bag? Yes. Door closed? I'm not sure I answered the last. The darkness overtook me quick or slow I'm not sure. Time was liquid. Indeterminant. Gone.

I awake a few hours later. Sore. I lay where I fell. Curled in a ball on my side. Too exhausted to move. Protesting limbs refuse to move. I breathe through the pain and uncurl. The call of my bladder to strong to deny. And back to bed once more.

My necklace is gone. Did I remove it or someone else? Time and action are lost again.

Everything is short and sharp. Piecemeal. A paucity of words and thoughts. Parts of me misplaced. Words and phrases fall from my mind. Disparate pieces thrown across my mind and the screen before me. I type. Fractured. Exhausted.

It's been one of those days.

Michelle

Monday, 17 November 2014

Boadicea in comfy pjs and slippers.

I wrote this a while ago but it still holds true for me. 
Whilst in recovery mode I thought I'd put it on a photo of my pasty feet and one of my pairs sparkly Dorothy slippers. 

My mantra for living with Chronic Illness.



It's coming up to the end of my year long fundraising for Dysautonomia research. Three weeks to go (Dec 9th is the end). So time is running out to donate. Make sure you head over and donate or share with others who may be interested. Huge thank you to all those who have already given. The video below is me explaining a little about my life with Dysautonomia and why we need more money for research. 



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,800, keep donating and hopefully we can reach $10,000.