Sunday, 14 September 2014

Prove it.


A music celebrity singles out two concert goers not standing and dancing. The concert stops and security is sent over. It turns out one was in a wheelchair and one an amputee. Satisfied the celebrity declares that it's okay then, and proceeds with the concert.

Where oh where to start?

I'm not even going to mention his name. It's all over social media at the moment and I've had my say over on my FB page. And in truth, his identity is irrelevant except to point out his incredible display of wankerism. I'm not even going to get into the argument that if you've spent your hard earned cash on a concert ticket and want to sit throughout, that it's your right to do so. But for me there is a bigger issue at play.

What this represents is yet another example of ableism and the persistent idea that disability is visible.

What if, like for many people there was no wheelchair, no cane, no prosthetic, no visible difference that signified genuine disability. What if the ailment that they live with is completely invisible and they look well to those who don't know them.

As Invisible Illness Week 2014 comes to it's conclusion we are shown a very public example of how many people envision acceptable disability.

Living with a disorder that is for the most part invisible it's hard not to imagine the singer's reaction to my sitting if I wasn't in my chair. Standing, particularly for an extended period, is incredibly difficult for those living with Dysautonomia. Standing up is said to require three times the energy required for those without autonomic dysfunction. The same issue occurs in multiple conditions. Prolonged standing for those with EDS, ME, COPD, CRPS and many other chronic and traditionally invisible conditions can be incredibly difficult.

Yet we may save up our limited energy to attend a concert. We may up our meds, rest for days, and book out days after to recover. We do all that we can to attend any events and as much as we'd like to stand and dance, we are simply stoked to be there sitting in a seat watching the singer of choice.

To be singled out and chastised for not getting up and dancing would be embarrassing to say the least. To then have to prove why you have the right to be sitting. To have a complete stranger who knows nothing about you decide that your disability is valid or not valid is dehumanising and out right rude.

Imagine if that person was only just coming to terms with their disability?

You have to stand:

"unless you got a handicap pass where you get special parking and s---,"

Ugh. Which bit of ignorance to start with? 


Why should anyone have to prove disability? Especially to a complete entitled douche who thinks he has the right to both chastise and decide who can and cannot stand at his concert.

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.

I don't wish this singer ill. I don't wish him to be in my position. I don't want him to spend a day in a wheelchair, after which he can just  get up and go on with life. I don't want him to think that the only way to experience disability is to be in a wheelchair. A day or a week or a month living my life, will not give him true insight into my experience. I have been ill 24/7 for 8 years and I will continue to be ill and get worse. A day in a wheelchair will not expose him to all that entails. And frankly why should that be what is required to simply act like a decent human being.

You can have compassion without understanding. You can have decency without understanding. You don't need to know the intricacy of anothers life to treat them with respect due any human being.

Disability comes in so many shades. Some visible. Some not. Some physical. Some psychological. Some intellectual. Some in a combination of all of those. I don't wish pain, or nausea, of passing out, or anxiety, or depression, or any other issue upon him or anyone else.

But I do wish that people would pull their heads out of their arse and

a) get some perspective,
b) stop trying to judge others on false criteria
c) become educated,
d) just be a decent compassionate human being who realises that they cannot spot disability at a single glance
e) have absolutely no right to ask for proof
f) or judge in the first place.

Oh and did I mention pull their head out of their arse.

Michelle

Sunday, 7 September 2014

In my mind.

(Why yes. I did get made up as a zombie and do a photoshoot.)

Who am I now? That's something I've been mulling over. I want to be many things. Many of them are reliant on being a fully able, fully healthy person, with unlimited funds. Those are the wants I bring out when I want to beat myself up. The unattainable. The ridiculous. The ones that I only want because I can't have them.

Self-flagellation and I are firm friends. Even when we haven't seen each other for months or years, when we get together it's just like old times. As if nary a day had passed. We take up where we left off and joke about all the ways I've failed or cocked up in life.

In my more sanguine moments I realise that I am being a dick, which goes right against my "don't be a dick" policy on how to live life. Somehow being a dick to myself is okay, because it's me.

Don't be a dick, Michelle.
Say it 10 times and repeat at need. 

Times like that I need to play this song (on loop and loud),



and list off all the ways I am pretty damn fabulous. Because I am. I just need to see it and embrace it.

Since being sick I've thrown off a lot of the usual constraints society places on us. Life's too short and energy too scarce, to waste it on filling a role designed by others. Coming from a pretty conservative family it's taken a lot of years, and soul-searching, to shake off the behavioural straight jacket that I was wrapped in at birth. It's been a little step here and a little step there, to find the pieces of me. To feel okay in my own skin, not the skin everyone else says I should wear. To realise my opinions are mine, and they are okay. That I don't have to spout the ones I was taught as I grew up. That I can speak my mind. That I don't have to apologise for being me.

At 41, am I still rebelling, or is it simply that I don't give a crap anymore? A little bit of both probably. I definitely don't have all my shit together, as evidenced by many of my latest posts. But I'm telling myself that is okay, and slowly I am believing it.

I realise as I type this my circle of friends and family, although small in number, represent those who take me as I am. Those who read the blog are the same. They are people who like me for me, in all my mixed up, slightly left of centre, contradictory glory, not despite it. They don't tolerate my difference, they are here because they like it. And that is a gift. One for which I am very grateful.

So thank you Amanda Palmer for making this song (and Map of Tasmania, because that never fails to crack me up. Whoever thought that little Australian phrase would make it's way into any song? NSFW for those who haven't seen the clip before.)

I need to start believing, that when I wipe away the crap I cover myself with and polish up the picture of me,

I am exactly the person I want to be.

Michelle

I've included all the lyrics below rather than just selecting a few, because all of them sing to me and I think they'll sing to many others.

In My Mind
Amanda Palmer 

In my mind
In a future five years from now
I'm one hundred and twenty pounds
And I never get hung over
Because I will be the picture of discipline
Never minding what state I'm in
And I will be someone I admire
And it's funny how I imagined
That I would be that person now
But it does not seem to have happened
Maybe I've just forgotten how to see
That I am not exactly the person that I thought I'd be

And in my mind
In the faraway here and now
I've become in control somehow
And I never lose my wallet
Because I will be the picture of of discipline
Never fucking up anything
And I'll be a good defensive driver
And it's funny how I imagined
That I would be that person now
But it does not seem to have happened
Maybe I've just forgotten how to see
That I'll never be the person that I thought I'd be

And in my mind
When I'm old I am beautiful
Planting tulips and vegetables
Which I will mindfully watch over
Not like me now
I'm so busy with everything
That I don't look at anything
But I'm sure I'll look when I am older
And it's funny how I imagined
That I could be that person now
But that's not what I want
But that's what I wanted
And I'd be giving up somehow
How strange to see
That I don't wanna be the person that I want to be

And in my mind
I imagine so many things
Things that aren't really happening
And when they put me in the ground
I'll start pounding the lid
Saying I haven't finished yet
I still have a tattoo to get
That says I'm living in the moment
And it's funny how I imagined
That I could win this, win this fight
But maybe it isn't all that funny
That I've been fighting all my life
But maybe I have to think it's funny
If I wanna live before I die
And maybe it's funniest of all
To think I'll die before I actually see
That I am exactly the person that I want to be

Fuck yes
I am exactly the person that I want to be


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 $2,000, keep donating and hopefully we can reach $10,000.

Monday, 1 September 2014

When the target keeps moving.

(I made this earlier this year to try and remind myself to breathe. 
I think I might have to put it next to my bed.)

Pick a point and focus. That's what I tell myself. When everything is moving too fast and it seems like I'm about to be overwhelmed. Easier said than done some days. Easier said than done most days. I can feel it build. The days where the rubber bands are wound and wound and wound, until they sit stretched and pale on the brink of snapping.

Tiredness doesn't help. The all pervasive exhaustion that wraps around you and through you tying you down and pulling you apart.

No one thing stands out. It's all the things. All at once. When the respite is missing. When you keep thinking it's not supposed to be like this. I should be able to deal. By now. It's nothing new. It's the same old same old. The items are on shuffle, but the playlist is the same. But the down time is measured in moments, not days. Not weeks. And never in months. If there can be caring fatigue, surely I can have coping fatigue. You can take your strong and stick it.

I keep waiting for the planets to align. Those mythical moments where hope is fully realised and something happens. Something. I don't even know what that would constitute at the moment. Some sort of relief? Perhaps. An end to pain. I wouldn't knock that back. An end to nausea. An end to weakness and those days where even the sunlight on a light Winter day is too much for overstretched nerves. The advent of enough energy to do something. Something once more. Still no idea what that something is. But it is. The ability to do something, anything, I want. Just because.

But the planets continue to mock me from afar.

I keep thinking if there's one thing, just one, that rises above the rest, I can focus. I can concentrate my energies on that one point. I can set a plan. I list out my steps and write up dot points. I can address it and solve it and move onto the next. And then reset my focus to the next issue at hand.

And then the target moves. Or another rises up. Or one I thought sorted starts to spring up again. A hint at first. Then a nudge. Then a body slam. And I am back to square one. Or square negative ten, again.

Pick a point and focus. Pick a point. One point. Any point.

Take a breath. Start again.

Take a breath.

Take a breath. 

Shut out the world. Pull down the blinds. Batten down the hatches. 

Ride it out. Ride it out. Ride it out. 

Discard. Remove the layers of burden. Burden self-appointed. Burden appointed by others. Prioritise. Deal with the unavoidable. Ignore the rest. Shake off the unnecessary. 

Focus on the self. The primal self. The needs of now. The keystone without which the rest will fall. 

The definition of insanity is said to be doing the same thing over and over again and expecting different results. I know it, and yet I keep falling back to old patterns. I know it, but it is so much easier to retrace old paths. I push too far. I fall. I push too far. I fall. The familiar two-step. I know in my heart it'll end in tears, yet each time I convince myself that this time it'll be different.

Pacing. Self-compassion. Tied inextricably to a personality that wants to fight them on the beaches. Them being me. Them being my body. Them being systems comprised of nerves and neurotransmitters, cells and blood vessels. I dig in my heels to fight unconscious processes that simply do what they do. No plan. No intent. And I fall.

So I curl up and binge watch programs that I have seen a dozen times before. I curl up and look out the window. Watching the finches flit in and out of the bushes by the fence. I curl up and feel the soft fur of Freyja under my hands. The comfort of her warmth and familiar doggy smell. I curl up and watch the candle flicker on the top of my tallboy. I curl up and smell the soap sent by a friend. Part of a non-casserole care package. I curl up and breathe. I curl up.

And I'll stay curled up for a while. Tightly wound in my shell. In soft clothes and soft sheets. In soft light and soft sounds. Until it finally suffuses my being. Until I can feel it's gentle hum throughout. And I am restored. And healed. In the ways that matter. In the ways of the soul and the spirit.

So that's where I'll focus. That's where my small amounts of energy must be directed. Must. Must and Me not two words I normally associate with each other. It grates and feels wrong. But I will tie them together. Bound until they become familiar and comfortable. 

And I'll write it out again. I'll spew the words onto the keyboard. Empty it all out, so there's room for the things that will sustain.

Michelle

That not everything is gonna be the way
You think it ought to be
It seems like every time I try to make it right
It all comes down on me
Please say honestly you won't give up on me
And I shall believe
And I shall believe.
Sheryl Crow - I shall believe.

This is one of the songs in my angsty play list that tends to be on high rotation when a bump in the road sends me off into a ditch. Not everything is gonna be the way you think it ought to be. Time to learn that lesson again.

Wednesday, 27 August 2014

Mammograms, wheelchairs and complex boobs.


My boobs have been problematic from the start. They didn't even want to make an appearance for a long time, thus leaving me open to many terms of endearment such as Surfboard, during my teenage years. Not to mention that the top of my sternum and adjacent ribs like to stick out rather than curve in and I was cursing my genetic shortfalls even back then. By Year 12 they had made a half-hearted appearance and thanks to the wonders of the miracle bra I could pretend that my singlet worthy breasts actually had cleavage. I should have known from their early behaviour that they were going to be recalcitrant for years to come.

They hurt. ALL. THE. DAMN. TIME. How two somethings so tiny, could be the source of so much pain, I will never know. But when the blast of the shower hit them or the dog accidentally whacked them it was beyond painful. Nothing soothed them. Not changing my diet or scoffing Evening Primrose oil. To this day they are tender little things. Add in the sharp electrical shocks that now inhabit them, and they are a tiny barrel of laughs.

Pregnancy brought mastitis, prior to giving giving birth. Who knew that was even possible? And I lost all the skin off my left breast and had months of biopsies and painful dressings until a plane trip to Melbourne finally diagnosed an obscure dermatological issue. (It would seem that my body has always been intent on being obscure in every possible way. Thanks genetic lottery. I am reduced to using floaties/water wings in the shallow end of the gene pool.)

My boobs have been continually problematic from their lacklustre late appearance, onwards.

Shortly before I turned 30 I discovered a lump.  A trip to the breast clinic at the local hospital went from it's probably nothing, to scans, to instant review, to on the spot biopsy. Luckily, apart from a bazillion grey hairs and a good cry in my car afterwards, I got the all clear a week later. But this marked the beginning of my complex, fertile boobs, upping the ante.

Since that time I've had two "we aren't sure" lumps cut out and many more biopsied. I have been told that my breasts are a garden and Swiss cheese. I have breast tissue growing where it should not grow and incredibly dense fibrocystic tissue throughout. They are more bag of demented marbles than breasts at this point, and this means I am left with a constant quandary. If I feel a new lump should I be worried?

Since that initial concerning lump of nothingness, I have been a regular scanner. My boobs have been felt up and seen by more people than I care to recall. I did have a break at one point. There is only so much cold KY and small talk in a darkened room, whilst a stranger tries to find your backbone through your miniscule boob, that a girl can take. But the last couple of years I sucked up my pride, had a good talking to from my doctor, stopped ignoring my defunct boobage and re-entered the world of scans, mostly due to more and more lumps arriving.

Last year a week after turning 40 I found a new and unusual lump. And so I had my first mammogram, plus bilateral ultrasound, apparently with my boobs of high complexity I have to have both. Luckily that was just a large unusually shaped fibroadenoma, but it reminded me that I can't always tell by feel what is and isn't a worry.

Today I had my first mammogram in my wheelchair.

Now getting your boobs squished is not the most fun in the world. It's uncomfortable. It's awkward. When someone is trying to simultaneously fluff up and squish/stretch out your miniature mammary to try and get something to scan, it can be offputting. This is where the staff can make or break the experience. As women we have to be aware of breast health. We can't avoid it. And our minds often make the idea of a mammogram seem far worse than it is. I know the first one I took my best friend along for moral support, but this time I was far more blaze about it all.

The reality is it is quick. And chatty friendly staff make it go smoothly. Today in my chair it was more awkward, well more so for the poor technician than me. But she made me feel comfortable and at ease. It was as simple as whipping back the arms of my chair, bringing the machine down to my level and having to stretch out awkwardly in what, minus the large medical scanning device clamping down on my breast, would have been a Vogue worthy model pose.

Of course I had to wait to see if I needed more than the basic four scans thanks to my complex boobs. Though I kind of like to think of them as more enigma than complex. Like some mysterious femme fatale in a French Film Noir production. Makes it a wee bit more bearable. Really it's hard to be worried when you're thinking of your breasts talking in a deep French accent. When you have scar tissue from past surgery and dense tissue it's never straight forward. but thankfully by the time I had also moved onto the, "there's another cyst, and another, and another, and that ones awkward, and there's that fibroadenoma you mentioned and...." ultrasound, I was free to leave no more squishing required. Winning!

Whilst I was waiting in the mammography room while the scans were checked, I was amazed at how little this mammogram phased me. It really is innocuous, especially in light of the myriad of other tests I've had done, or the surprise pelvic ultrasound I had earlier in the year (Dear Doctors, tell your patient when you've added that to the list of scans needed. It's not a test you should spring on anyone). I know a lot of women put off having a mammogram, for fear of pain in particular. But it is both quick and although uncomfortable, should not be painful. The staff do this all day everyday and you are treated with dignity and there is no embarrassment. And as I found out today they are happy to work around issues like wheelchairs, and teeny tiny boobs.

So now it's waiting to see my GP for the results. 

It is easy to get caught up in a world of Dysautonomia or other chronic illness, but we also have to take care of our more general health issues, just like any other women. And as my own experience demonstrates, being young doesn't mean you can't have breast issues. So check your breasts ladies and schedule in your mammograms and ultrasounds.

Interesting sidenote: I saw graph recently that showed fibrocystic breasts were over represented in Dysautonomia patients. As was endometriosis (which I also had) and PCOS. If I can find the link again I'll post it. 

Michelle.

I really wanted to put Diana Ross' Touch me in the Morning as my musical accompaniment, especially given I had a morning appointment, but really the trick with these things is just to keep breathing, plus I love Garbage.

Sunday, 24 August 2014

Today, tomorrow and yesterday: The symptoms they don't tell you about.

(Taking in almost-Spring from a different angle with my ever present furry companion.)

If you go online these days you can find a nice list of potential Dysautonomia symptoms. Whether it's a description of syncope, gastric disturbance or a faulty internal thermostat, the information is sitting there waiting to be read. It's a nice change from when I was first diagnosed many a year ago and information was piecemeal at best. Doctors will list off some of the most common ones when you're diagnosed. Never the ones you really need to know about. Those ones that scare the crap out of you and always crop up late at night or when you are all alone. Just the basics. Kind of like the common side effects list you get with every medication. But so many parts of your system can lose the plot when you have a disorder that affects a system that innervates your body from head to toe. But more than that they don't mention the ones that really matter.

The real life consequences of Dysautonomia aren't tachycardia or bradycardia. It's not syncope or gastroparesis. Not that any of that is fun to deal with. This disorder is no cake walk. And not for the faint of heart, all puns intended. But those physical symptoms are only the start. It's the ones that are an afterthought, or a no thought, that cause the greatest burden. And they are rarely found on an information handout.

Today I'm sitting in bed. Curled up again in pain, but it's not the pain itself that I'm cursing. Today I should be in the city celebrating my son's birthday. Instead I am stuck here hoarding what little energy I have for another trip next week for a medical appointment for my other son. I should be in the city, eating cake and opening presents. It's the first time I haven't seen him on his birthday in 20yrs. Mr Grumpy and our youngest have headed to the city bearing a cake I made and a present I wrapped. But here I am sucking back tears and hating on the world.

Tomorrow is my cousin's funeral. Five weeks ago she was diagnosed with ovarian cancer and now she is gone. I was supposed to be heading to the city to see her just after her diagnosis. But instead I ended in the ED and haven't been able to get above that in the weeks since. And now it's too late and I can't even make it to say goodbye. The tiny country town where the funeral will be held is too far away and I can barely travel 10 minutes without setting off the excruciating pain and nausea that have been my Achilles heel since before May. I tried to write, but it's too raw and the words won't form through the multiple layers of pain.

Yesterday I decided to try and help out around the house while Mr Grumpy and our youngest were away. I managed a couple of loads of washing before I had to curl up on the dirty clothes in the laundry until the pain and pre-syncope passed enough and I could head back to bed. I tried to walk outside earlier to clear my head and ended lying on the grass, trying to focus on the fact that it was a lovely sunny day and not that standing and walking overwhelmed me again.

Today, tomorrow, yesterday and the past week has torn apart a lot of my hard won mental and emotional peace.

I am back in the midst of FU illness. Which of course ends in the defeat I knew would be there before I started that first load of washing. But it's that or a curled up ball of hurt. It's irrational, cut off your nose to spite your face actions, or getting caught in a web of sadness.

These are the symptoms of chronic illness that I find hardest to deal with. And the ones our doctor's don't mention. These are the times where I would do anything to be well and be part of life. That is what the healthy take for granted. It's not just being able to head out to dinner on a whim or planning a holiday away, which are beyond me. It's the not being able to participate in the things that truly matter in life. The events that are actually important. Even if I can get on top of this pain, I can't get today and tomorrow back.

If someone would add that to a handout it'd be great. At the very least it would give you a heads up.

Michelle

Have to agree with Bernard and the guys from Powderfinger. 


These days turned out like nothing I had planned.


Monday, 18 August 2014

Ain't got no/I got life

(A sunbeam hit my Dorothy slippers and Freyja and I both sparkled. 
Sometimes it's the little things.)

I've been trying to actively pull myself out of the funk that's sprung up around this latest exacerbation. Being stuck in 4 walls for weeks on end and perpetual pain are not all that good for my mental health and I may be going a little stir crazy. I often think of those pictures in old zoos, where a tiger would be seen pacing up and down at the bars of it's cage for hours on end. That's what it feels like, although my pacing lacks the languid grace of a top feline predator. But I may take a feeble swipe at anyone stupid enough to pass close to the bars, in my directionless irritation. Which reminds me, my 'claws' seriously need a manicure and lets not even mention the abomination that are my pedicure-lacking lower claws. Shaking hands and nail art are not good bedfellows. But I digress.

One song has continued to pop into my head in the midst of all this. Nina Simone singing Ain't Got No/I Got Life.

I have been a huge Nina Simone fan for a long time. Do I Move You and I Want a Little Sugar in my Bowl, are two of my all time favourite songs. But Ain't Got No/I Got Life is one of those songs that is just right at times like this. From memory it is a partially a combination of two songs from Hair. But don't quote me on that. I have never heard two versions that are the same. The one I have in my play list is slightly different to any of the live versions I have seen, and none of those are exactly the same either. Verses are added and subtracted in each. But the basic theme is the same. It starts by listing all the things missing and then takes pleasure and in turn power, in listing all the things that are still there. They are simple things. And I like simple. There is so much joy in the simple.

Got my hair, got my head
Got my brains, got my ears
Got my eyes, got my nose
Got my mouth, I got my smile

It's so easy to get caught up in all the things we don't have. So easy to remember the loss, the hurt, the lack. Stuck in bed in pain means I have been ruminating on life. And I'll admit some of those ruminations have been about the negatives. It's so easy to see the hurts. They stand out like a flashing neon signs. Or maybe those long harsh fluorescent lights, that buzzes, ticks and flickers, doing it's best to make you break. But the good things? They can be so hard to spot when everything feels like a loss. But I'm getting there slowly. Some days are better than others. Some days are best forgotten. But I keep trying. 

Seeing the positives and finding joy are a little like riding a bike. Even if you haven't done it for a while you don't really forget how. You get back on. Your feet slip off the pedals and there are some quickly aborted starts. But after a wobbly beginning and a couple of practice rides up and down the street, you are back riding once more like you never stopped. Once you retrain your eye and get in the groove, you can start finding them in the smallest of things.

I just need to remind myself that I can. I just need to remind myself that there are many things that are good in my life. Little things. Dotted throughout the day. That add up and make life shine.

As Nina sings, 

I've got life
And I'm gonna keep it
I got life
And nobody's gonna take it away.

Michelle.

Do you have a favourite Nina Simone song? Or is there a particular song that helps you refocus and start the road back to finding the happy parts of life?



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 $2,000, keep donating and hopefully we can reach $10,000.

Thursday, 14 August 2014

It's life, Jim, but not as we know it.

(Made it to have 1/2 an hour at a local lake a couple of weeks ago. It was overcast and set me back, but it was beautiful watching the swans and just feeling the breeze.) 

(The words and thoughts are sort of rambling and unconnected and flowing today. Headaches and pain and blech all mixing together.)

Life. It's not going exactly as I planned. Or even remotely in any way shape or form like the life I had planned.

But, Mousie, thou art no thy lane [you aren't alone]
In proving foresight may be vain:
The best laid schemes o' mice an' men
Gang aft a-gley, [often go awry]
An' lea'e us nought but grief an' pain,
For promised joy.

Robert Burns, To A Mouse on turning up her nest with a plough, 1785*

Lying in bed again. Again. Again. Again. It's starting to wear me out. If it's not the pain, it's the post-pain exhaustion. Not that the pain ever actually leaves. It's just a question of degrees now.

Life is.... challenging, testing, demanding, confronting, painful, sucking, shit, crap, f'ed up.

I lay curled up in a ball next to Mr Grumpy last night. Across the bed because that's where I fell after making my way from the bathroom. He just picked up my head and lay it gently on his stomach and opened his book. Because that's where we are now. Because carrying me to the couch to eat dinner, knees clasped to chest, carrying me to the bathroom, and me being a constant ball of pain are just normal. He brings me heat packs and rubs my back. He holds my hand and makes jokes about keeping the pain moaning down to a minimum so he can sleep. Abnormal normal strikes again but this time with a side of unrelenting gastric pain.

Two months until I see the specialist. Two more months of pain, if past months are anything to go by. Wait lists. Cancellation lists. Force the food. Feel the pain. Force the food and still lose weight. Force the food. Feel the nausea rise.

And we wait. I say we because it is we. My little family are waiting with me. They have a pain of their own in watching me writhe, and not being able to help.

Small victories are celebrated.

An excited, Hey you're out of bed Mum?
Followed by a wry, You must be cured!

We find joy where we can. My foray into the cinema of superheroes continues. Lets face it there's not a lot of thought required and a decent chance of a reasonably attractive hero or villain to satisfy. My youngest (though at 16 I'm not sure I can call him youngest any more) sat in bed with me watching Iron Man. Discussing the total waste of time, and crime against cinema, that was The Hulk, and who is the best Marvel character. It is hard to explain how much those times mean to me. That at 16 he's still willing to go out of his way to spend time with his mum. I treasure every moment.

I have surrounded myself with books and magazines that feed my soul and challenge my brain. That let me escape for a while. That don't mind if I read them in fits and starts, in a contorted mess of limbs. Poetry and classics. Philosophy and comedy. Each filling a needed role. I am surrounded by a husband and sons who love me just as I am. Who sit with me and accept me whatever comes. Who make me laugh when I least want to and who give hugs and silence when that is what I need most. I look out the window at the small park across the street. The galahs gather every night on the park and our front lawn. Squawking waves of pink and grey. Freyja comes and gently pushes her head under my arm, pushing and flicking, pushing and flicking until it goes high enough that she can dart underneath, and stick her face as close to mine as possible. I lay on the pillow with whiskers on my cheek and warm, smelly breath, regular and comforting, in my ear.

Life is.... beautiful, joyful, loving, amazing.

It's life. My life. It's not what I would choose. Not for me or anyone else. But it's still life. I have moments of wanting to fight against it. I have moments of despair. And moments, like last night, where I just want the pain to stop. Where I would give anything to have my old plans back.

But

Life changes. Even without the mark of illness it changes. It's not static. It would be less if it was. We grow and change and transform. We continue on, maybe not as we expect or want, but we continue on all the same. Tired and weary, we continue on.

I am a mess of conflicted thoughts and conflicted feelings. I want to cry and to embrace all around me. I want to hide away and force my way back into the world. I reach out and hold on. I reach out and lose my grip. I reach out and continue. Life is messy and contradictory and mine. F Scott Fitzgerald said,

The test of a first-rate intelligence is the ability to hold two opposing ideas in mind at the same time and still retain the ability to function.

I'll take that at the moment. I'm still functioning and I am still contradictory. I'll win and lose all on the same day, all in the same minute.

Do not go gentle into that good night
Rage, rage, against the dying of the light.

Dylan Thomas, Do Not go Gentle into that Good Night,1939.

I love that Thomas poem. I remember reading it aloud in my English Literature class years ago. It needs to be read aloud and with passion. It still strikes me now. The feeling imbued in the words. But, I think I'll take a gentle rage. A whispered defiance. A slow and steady persistence. A peaceful acceptance and endurance. A knowing that each breath is a sword drawn and shield raised. 

In the midst of the pain it is those little sparks that keep me going. That put me back together. Or at least hold the parts in place.

Michelle

NB For those who didn't grow up in the 80s, the title of the post comes from a nonsense song Star Trekkin'.

And yes, John Steinbeck was inspired to title his 1937 classic Of Mice and Men, based upon the Robert Burns poem I quoted.


Just a quiet little song today



You worry much about things you don't understand

But don't give up, if it doesn't go with the plan



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 $2,000, keep donating and hopefully we can reach $10,000.

Tuesday, 12 August 2014

Non-compliant


(I primarily discuss patient relationships with doctors in this post, but the same issues apply to all medical, nursing and allied health professionals with which a patient interacts) 

Words matter. They have great power. If the current push to recognise bullying has taught us anything it is that the old saying "sticks and stones will break my bones, but names will never hurt me" is a lie. Words wound. Words define how others see us and how we see ourselves. Words can be used to heal or to cut, in equal measures. And words also define relationships. In medicine much of the lexicon is handed down from a time when medicine was set in the do to and not the do with model. They represent power and the unassailable position of the doctor as the expert and controller. Often the legacy of these words is lost to those who use them. They are part and parcel of practice, used without thought for the schema they represent. And yet, their use influences how they interact and view those around them.

If there's a word I hate in medicine it's non-compliant. I hated it as a professional. I hate it even more as a patient. It is laden with judgement. And it is set firmly in the paternalistic model of medicine.

Non-compliant = bad

And, it has been used by many as an excuse to stop seeing particular patients.

Non-compliant says that a patient has gone against the treatment advice of their doctor. It is a challenge against expert authority. It also says that the advice was unassailably correct and that in going against that advice, the patient has made a bad decision.

Back in my old life I used to assess the decision making capacity of patients, most commonly those who were refusing medical advice. Mrs A is refusing to move to a supported care facility. Mr B is refusing to take his benzodiazepine. Mrs K is refusing to allow nursing to shower her. I would go in and undertake a lengthy assessment of the person's situation, explore why they were making the decisions they were making, and their cognitive abilities. Sometimes following the assessment I would recommend that a referral be made to the Victorian Civil and Administrative Tribunal for the appointment of an Administrator or Guardian. But many times the discussions would unearth previously unrecognised aspects of the decision that made perfect sense to that particular person. The issue wasn't that they were making a bad decision or were no longer able to make a decision, but that refusal had been interpreted negatively by the team, and that had ended discussions. What made perfect sense to the team, was seen as negative to the patient for a whole host of reasons. Once discovered, some could be addressed and worked around. And some were seen by the patient as a deal breaker.

Every person is assumed to have the capacity to make decisions
until proven otherwise.

Unless a person has lost the cognitive capacity to make decisions (even a person with dementia is capable of making certain decision in their life, or at least participating in the process at some level) it is assumed that the decisions they make are reasoned, even if that reasoning isn't immediately obvious. People make questionable decisions every day. Some are huge life changing decisions eg who they choose to marry. And some more mundane eg when they decide to eat the entire packet of Tim Tams in one sitting. But there is reasoning in each decision. And while Barry may not be everyone's cup of tea or a more moderate intake of chocolate biscuits may seem a healthier choice, that doesn't mean it wasn't the right decision for the person at that time. Whether either was a good or bad decision is dependant on perspective. And there may be factors that only the person making the decision fully understands. Often the refusal of medical treatment is instantly equated as a bad decision. But that judgement is firmly set in the medical perspective, not the individual, for whom it may be a totally reasonable decision.

The definition of decisions as good or bad is highly personal. 
It is a judgement call. 
Not a fact based call.
Even when one party may feel that the facts support their position.

As a patient you see a medical professional for their expert advice. At the beginning of the appointment both parties share the same goal:
  • The patient is unwell and wants to return to or achieve health. 
  • The doctor wants to help the patient return to or achieve health.

Yet from this point much divergence and conflict can occur.

Most treatment plans are still the province of the treating doctor, although depending on the individual doctor and the patient involved, that may vary in degree. Still, particularly in areas such as prescribing of medication it is the doctor who has the most control. Often a patient will go in with a complaint, they are told to try a particular medication and sent on their way to return in 3 months. If on return the patient has failed to take the recommended medication they are seen to have made a bad decision and difficulties in the relationship can begin. Although in truth, the problems began at the time of prescription during the initial appointment.

With medications there are many issues that can arise which affect a person's choice to start or not start a treatment. For example:
  • They may not understand the prescribing instructions.
  • They were scared about taking the medication.
  • They wanted to try alternative options first.
  • They couldn't afford the medication.
  • They couldn't tolerate the side-effects of the medication.
  • They were socially isolated and unable to access a chemist to purchase the medication.
  • They discovered that the medication led to other complications that they were unwilling to risk.
  • They were dealing with multiple life issues and could not contend with starting a new treatment on top of these issues. 

Many of these issues could have been addressed at the initial consultation. Talking and listening to the patient would have unearthed many of them, and set up the opportunity to problem solve together. Issues such as side-effects, risk-benefit and cost are easily conveyed and potentially solved. Issues regarding access and life stressors take more time, but are just as important to decision making. Even when a patient is motivated to undertake a recommended treatment there may be aspects of their life that create difficulties and end with them choosing to not undertake a particular line of management.

For a personal example:

Exercise is an important aspect of Dysautonomia management and patients are often referred to exercise programs. I was referred to an outpatient rehabilitation service for physiotherapy and occupational therapy at a local hospital after a significant deterioration in my health. I was motivated, but physically accessing the program was highly problematic.
  • The only time offered at the hospital was early morning. Mornings I am highly symptomatic. My bp is erratic, and often accompanied by vomiting and diarrhea amongst other symptoms. It is an exhausting time of day and it is often not until a couple of hours after I take my medications and rehydrate, that I am able to undertake any physical tasks. 
  • I no longer drive. With no one home during the day I was unable to easily get to the hospital. 
  • The local taxi service was haphazard at best, even with a booking. With no discounted taxi card cost was prohibitive at nearly $30 a round trip. 
  • A volunteer driving program was available and was discussed.
  • However, I have trouble with travel. The simple sitting in a car is exhausting and can end with symptom exacerbation and my passing out. Even when a lift was available by the time I reached the hospital I was often so symptomatic that I was unable to participate in rehabilitation.
  • At the time I was having trouble with stairs and my house had 3 flights. Leaving the house was at the time problematic and dangerous. 
  • The effort involved in undertaking the offered program would have left me so exhausted that I would have been unable to participate in other aspects of my life that were important to me. For example, attending my sons' school events, or even cooking them a decent meal at night.

Overall it was looking unlikely that I was going to be able to participate in the program.

  • When I called the head of the program to say I was not going to be attending the morning sessions it could have gone one of two ways.
    • I could have been seen as non-compliant and unmotivated. I could have been told my place would go to another patient who wanted to get well (these comments are not unusual). Or,
    • The program head could have asked me why I was unable to attend and if there was anything they could do to facilitate my participation.

Luckily, the latter option was selected.
  • After discussions it was decided that the morning program wasn't suitable given my restrictions.
  • We discussed each obstacle and problem solved together.
  • Home visits were organised twice a week, plus the option of a phone service for any discussions.
  • Rehabilitation goals weren't focused on getting me to walk a certain distance or lift a certain weight but on how they could improve my quality of life. A quality of life as defined by me, the patient. 
  • They were individualised to my personal circumstances rather than being forced into a generic group where I would have been unable to keep up.
  • The effort involved in travel and preparation were removed and the extra energy allowed me to continue to participate in my sons' activities. 
  • Overall, I was able to have the ongoing physiotherapy and occupational therapy that I required.

Without that one phone call I would have been unable to participate in the rehabilitation program. The cost-benefit would have been heavily weighted on the cost side of the ledger, making it an even less attractive option. I would have returned to my doctor having not undertaken the program she recommended. On it's face I would look non-compliant, when in reality it was the obstacles of life and my disorder that were preventing my participation, and not my motivation. Non-participation would have been a reasonable decision in my mind, based on the initial treatment parameters.

Time and again I read on forums of patients being termed non-compliant and often told not to come back by their doctor. The reasons a patient may make a decision not to undertake a particular treatment are many and varied, but that does not make them bad decisions. Nor does it make them unmotivated.

If doctors fail to include patients in the initial treatment decisions as an equal partner, any treatment program can fail or under-perform. A patient's decisions should not be framed in the context of good or bad, they should be framed in a context defined by what is best for each individual patient, as defined by the patient. Both sides should come to the table with their particular area of expertise and a decision should be reached together. How that decision looks at the end of those discussions may be very different to what both parties expected? It may end up that the initial treatment offered is seen as the best option by both parties. It may end up that no treatment becomes the best option for the patient at that time. Problem solving access, and understanding the multiple factors that influence decisions is vital if the shared goal of best health is to be achieved.

Understanding a patient's decisions is often seen as time consuming. 

But a refusal to understand the why is even more time consuming in the long run. 

It results in more visits, higher rates of hospitalisation and re-presentation, 
and overall poorer outcomes.

It is the patient who may become unwell due to side-effects of a medication or a decision of no treatment. It is the patient who financially bears the cost of treatments, which are not accrued in a vacuum, but must be balanced against other items like rent, food, or a child's school excursion. Culturally a treatment may be inappropriate. Physically a treatment may not be appropriate. A cost-benefit analysis of a proposed treatment may have risks that a patient is unwilling to accept. The patient is the expert in their experience of living with illness, and in the way they approach illness and life in general. It is the patient that lives with the illness 24/7 and not just the 10 minutes of a consultation.

And with every treatment decision, 
it is the patient that takes the greatest risk and will bear the greatest burden.

Patient's do not exist in isolation. Their interactions with the medical world are coloured and shaped by life experience, culture, social situations, religious beliefs, support systems, their ability to research, and many many other factors. Patients are no longer happy to simply sit back and be told what to do. And many are very capable of researching and understanding their various treatment options, and the intricacies of their diagnosis. Without understanding context, the why of a person's decisions, it is easy to label them as non-compliant, when in fact they may have made a valid and reasoned decision for them.

Non-compliant is a lazy, value laden label of little value except to reinforce the idea that the doctor is all knowing and the patient should do as told.

Good and bad decisions are defined from a medical perspective, and exclude what may be very valid reasons for the individual.

It does little more that provide an obstacle to appropriate treatment.

It colours how other medical and allied health professionals will react to a patient in the future.

And it will have a huge impact on a patient's ability to trust future doctors.

If it is accepted that patients come to their doctors seeking health
 and doctors want to aid a patient in seeking health, 
then it is counterintuitive for a patient to refuse a suggested treatment
 without good reason

A refusal of treatment is not a challenge to a doctor's expertise, it is an opportunity to understand a patient and provide the best treatment option, with the greatest chance of success, for that particular patient.

And that is a great outcome for all involved.

Michelle

You can also follow the conversation over on Facebook.

Sunday, 10 August 2014

Chronic Illness is Comedy Gold.

(The death-breath of life.)

Finding yourself face-to-face with a suspicious short and curly in a public loo is comedy gold. Okay so I'll admit, in the moment it's not all that hilarious. There may be much swearing and shaking of weak fists at the perverse nature of The Universe. There may even be a tear or two. But there is a moment when you move from overwhelming despair, wipe the best-left-unidentified goo from your cheek, and onto a moment of laughter. For example, that time in Myers during the pre-Christmas madness when I suddenly realised that I was lying there on sticky white tiles, as a distorted It's beginning to look a lot like Christmas, spilled out of the crackling speaker overhead. A kind of hysterical laughing fit takes over at that point. But it's laughter nonetheless. When you've spent a large portion of the last 8 years becoming overly familiar with the communal stench-filled porcelain dotted throughout the state of Victoria, you learn to laugh.

There's a huge component of black humour involved in illness. If you have a chronic condition you quickly learn to embrace that humour. When you become ill you find yourself thrust into a bizarre world that becomes more and more Monty Python sketch and less and less normality, as time goes by. You are one of the unlucky few to discover that medicine doesn't have all the answers. Depending on your disorder you can discover it has none of the answers. And the actual living with illness is so far removed from the clinical details that it can seem like you have been diagnosed with the wrong condition. You can either embrace the ridiculous nature of your new environment or fight it. And for many like myself, the former is a far better option. But laughing at illness can make others uncomfortable, and frequently confused.

I've always had a dry sense of humour and since becoming ill it's taken on a life of its own. I've found that sarcasm doesn't always translate, especially across doctor's desks, or across international borders. Odd times I've made a joke and by the look on the face of my specialist you'd think I just told her I wanted to eat the stapler off her desk. It's a mix of confusion and worry, often accompanied by a slightly uncertain laugh, and tends to be quickly passed over. But even amongst family members and friends it can be hit and miss. I'll write a tweet or status update which in my head is dripping with sarcasm, but many will take it verbatim and send me concerned messages. If I end a passage with "Living the dream" odds are the preceding line or paragraph was sarcastic. Yes waking up on the bathroom tiles with a concerned Great Dane trying to French kiss me is foul, but it's also funny. And the fainting while trying to simply go to the loo, is kind of beside the point. It's not fun, but it's white noise by now. And really if you can't find the funny in being given the rancid breath of life by a giant dog while you try ineffectually to beat her away with your weak arms, you have missed the point.

And I should give a shout out to the poor pharmacy assistant who innocently asked me if the compression stockings I was enquiring about were for an elderly relative. I probably shouldn't have responded by saying that they were for me and that it's what all the girl's were wearing to turn on their elderly clients. Personally, I found that hilarious. Her, not so much. 

My husband and kids get it. They joke about me dying and them inheriting my vast fortune. This horrifies my parents, but leaves us pissing ourselves laughing. But then again we are the family that tormented each other by playing Burning Ring of Fire during our respective colonoscopy preps. They too have lived with my deteriorating health for the past 8 years. Whilst other people flit in and out they are the ones who have lived it with me, picked me up off the floor and wiped the drool from my mouth. They've seen it all and they too use humour to get by.

If you can't laugh about the full body floss (the dual fun of a colonoscopy and endoscopy) what can you laugh about? When you're neurologist is telling you bondage jokes during your tilt table test you have to giggle. When you manage to snort your Florinef into your left nostril rather than swallow thanks to an ill timed cough it is rather funny. When you're trying to put on your constrictive granny compression stockings and lose your grip and punch yourself in the face, that is worthy of laughter. When you are about to head into your pacemaker surgery and your husband makes a joke about The Borg Collective and his hopes that you'll turn into 7 of 9, you snort laugh. And when you realise that you're not going to get better you make jokes about your non-existent inheritance and the fact that your husband has no chance of scoring himself a hot replacement wife after you're gone. 

Because sarcasm and gallows humour is a fantastic coping technique. You need to be able to laugh at illness. To put it in it's place, and make it bearable.

It doesn't mean that I don't cry or feel overwhelmed by everything at times. It doesn't mean that it's not hard living with a deteriorating body, especially at the moment. But it does mean that I can write numerous blog posts about my porcelain lover's pine-fresh breath while a new medication is making me vomit repeatedly (see my short lived dalliance with Mestinon up in the Treatments section). And, after 8 years, I can still laugh.

I may be living a life part pain and sickness, part I Love Lucy and part The Machine that goes Ping, but the bizarro world of chronic illness is filled with comedy gold my friends. Comedy gold.

Michelle



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 $2,000, keep donating and hopefully we can reach $10,000.

Wednesday, 6 August 2014

Mindfulness, pain and the waiting game.


Last night I lay in bed, heat pack on my stomach, knees bent, the godsend that is Onsetron and Endone running through my system, trying to not let the pain overwhelm. Again. A mix up with medical records and referrals means that almost 5 months after it was first discussed I am still waiting to get an appointment, let alone see a specialist gastroenterologist in the hope of a review. In hope of a solution. In a hope to the end of pain, nausea and vomiting. A fresh pair of eyes on my complex problem. It would also be nice to absorb what I eat and have my pajama bottoms stay up when I stand rather than threaten to fall from my emaciated body.

If it's not one thing it's another with Dysautonomia. But this pain and gastric quagmire are the latest to take their toll. When in a flair, though does it count as a flair after months on end of relentless pain? Lets just say out of the collection of symptoms I experience, that this issue has come to the fore with a perpetual flaring vengeance. Either way, when my abdomin and all the organs and gooey bits it holds, decide not to play fair it triggers everything else.

I am tired of pain. I am tired of a lack of respite.

This year held a first. The first time I have ever called an ambulance. The first time I have ended in tears from pain in a long long time. When you live with pain everyday it takes a lot to reach that point. When you are forced to make a decision on pain medication. To take or not take. To keep it bearable means to also take in the side-effects that the most common medications bring. With a stomach that already doesn't move the idea of slowing it further is not one to take lightly. To see the confusion on the face of the ER doctors when I am lying curled up in a ball and pale from the pain and I say I don't want any of the opiate derivatives for pain relief. At the point where I'm not sure why I went in, except I was at the end of my tether and wanted someone else to take over. IV Saline and Fentanyl. An admission that they can't help me beyond trying to take the edge off the pain. An admission that there are no specialists or specialist services in the area that could even potentially manage me and my complexity. Resigned to the disappointment after so many years, but still you hold onto a nugget of hope that this time it'll be simple and regular. A dodgy gallbladder, a shitty liver, a nasty cyst on my ovary. Something that this once they can figure out and fix. The deflation as you roll out the sliding doors, a genuine "I'm sorry" from the doctors and something to take the edge off until you can see the specialist in the city. Whenever that occurs.

I am trying to breathe through it all while I wait. I have time to spare, might as well make the most of it. Mindfulness is my latest weapon in the arsenal. I've been doing it for a while now. But like all things I'm not big on continuing. Every time I think I've found my stride and I dare to plan my body throws a curveball and it all falls apart again. Then I am back to picking up the pieces. Back to trying to get the habits started once more. I'll persevere. What's to lose at this point?

Pain medications. Nausea medications. Heat packs. None of it is cutting it right now. They are my edgers. Simply taking the edge off the pain or the nausea. But always it is there. When I wake up in the morning. When I let the dog out. When I shower. When I do my teeth. When I try another bland food. When I go to bed at night. And when I lie awake in the dark.

And it's those night hours when I run through the exercises. Trying to focus, losing focus and struggling back again. Pain, pain and more pain. It's exhausting and yet I can't sleep. The ironies of chronic illness being many and varied. I feel myself reaching across the chasm, hoping, trying, striving, but sleep simply stares back blankly far across the void. I lie listening to the ticking of the clock. I hear the dog barking in her sleep. Our neighbours cat jumping on our roof. The knocks and cracks as the house settles in the cool night air. And I run through it once more.

Feel your feet
. What can you feel?....

Ha! Already distracted. Neuropathy means that simple instruction carries much wry mirth. 

Focus. Focus. Focus.

Already distracted. I can trace the outline of my pain. It hasn't changed in months. The same area on the right of my abdomen. Endone required just for an ultrasound of the area. A clearly defined area of....well that's not clear. And so I wait and I lie awake at night focusing on the feelings of my body.

The feel of my body where it connects with the mattress beneath me. The feel of the sheets on my skin.

And wait and wait and wait.

Stuck in the cycle of not wanting pain medication, followed by chasing the pain made worse for my stubbornness.

And if the gastroenterologist has no answers. What then? I can't think of that. Not at the moment. I need to work this out. I need to believe in solutions. I need to believe in a time where I'm not texting Mr Grumpy in the lounge to grab some pain meds because I am in so much pain I can't move to get it myself. Trying to wait out the nausea as the Onsetron is so damn expensive. Losing more muscle mass because I'm not absorbing anything I eat. Losing more muscle mass because I am too weak to exercise.

I realised I can circle my thighs with my hands now. And then I stopped because it scared me a little how much my body has deteriorated while I wait.

Trying to manage, while I wait.

Trying to maintain hope, while I wait.

Trying to keep going, while I wait.

Watching my family worry, while we wait.

Watching the helplessness and fear on their faces, when I let on.

Hope and wait. Hope and wait. Hope and wait. Hope and wait.

Now where was I?

Get comfortable. Now. Feel your feet. Can you feel where they touch each other? Where they touch the sheet?. Do they tingle? Do they.....

Michelle

Throw your pain in the river
Throw your pain in the river
Leave your pain in the river
To be washed away slow

PJ Harvey, The River 

Huge PJ Harvey fan. I think I have 9 of her albums. Raw, haunting, and slightly off kilter you can feel every exposed nerve in every word and her blood flow on the strings of her guitar. And whilst Stories from the City, Stories from the Sea may be my favourite album, this particular song from, Is This Desire? is a favourite for it's haunting quality. These lines have always stood out in this song. And right now it would be so nice to throw my pain in 
the river to be washed away slow.

 

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 $2,000, keep donating and hopefully we can reach $10,000.