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.


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.


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).