Tuesday, 30 September 2014

The grass is always greener, or browner in this case, on the other side of the fence.

(Ellen Ripley, oh how I feel your pain.)

Can I have a new bowel please? Pretty please? And a new digestive tract while I'm at it? It's been a long time since Ruprecht, my recalcitrant bowel, first made an appearance both here on the blog and in my life. And since those first heady days of gastric apocalypse, there has been little improvement. There have been changes. But not one of those changes have been for the better.

Where once it was the big D, diarrhea. All day. Every day, Day after rank, day. It is now the big C, constipation, with the odd burst of D just to mix things up.

When stuck with diarrhea, you long for constipation.

When stuck with constipation, you long for diarrhea.

A regular healthy poo is up there with finding proof of Nessie. It's just not going to happen.

The grass is always greener, or browner in this case, on the other side of the fence.

But in truth both pose their own problems. Both now cause me syncope or pre-syncope. The rush of diarrhea, triggers my Vagus nerve, and that in turn leads to a full body melt down. It is completely disabling. I'm yet to find a trigger for it's arrival. Why my body goes from weeks of besser block to mount Vesuvius is still unclear. I have examined my diet, stress levels, activity levels, medication timing, the works. And still I'll wake up some mornings and it's on, on like Donkey Kong. And for a day I'll be caught trying to balance the competing needs of my bowels, vomiting and passing out. Holding on to consciousness by my fingernails. After which I left more shell, than person. It's an emptiness built of exhaustion and expelling all your organs and squidgy bits out of your confused and overwhelmed body. There's just....nothing.

And then it's back to constipation. Besser block, in need of a jackhammer, constipation. For weeks. Painful, debilitating weeks. I was excited the other day, to discover that I had gained 2kgs. I had been hovering around 50kgs which is way too underweight for my 168cm frame. Then it dawned on me. It was poo weight. And, as someone pointed out over on FB, poo weight doesn't count. A moment's excitement dashed with a dose of reality. The Movicol which was supposed to help me move, ended up causing nausea, vomiting and a bp drop. And so my stomach which already looks pregnant after eating, anything, ends up distended and rock hard from the buildup.

And with both there is the pain. Stabbing pain. Cramping pain. Pain that leaves you doubled up and in tears. It stabs in your abdomen and it stabs in your bowels. It overwhelms and leaves you crying on the tiles in your bathroom, or on your bed, or on the couch, or the carpet. The pain of spasming bowels that still won't pass anything is a pain unto itself and not one I'd ever wish on anyone. And then the meds you give into, because the pain is so incredibly bad, end up exacerbating the problem. Catch-22 eat your heart out.

And just as you finally pass that first bit of besser block and have blessed relief, you are hit with the first stirrings of the dreaded diarrhea again.

And you know even if you should manage to even have a half-hearted attempt at a real poo, it's never all. You never feel empty. It is half-arsed in every sense of the word. Because your colon is a poo-tease, and it sits back laughing maniacally, stroking a white cat, while you weep at dashed hopes.

You thought you'd have normal poo? Fool! Mwahahahahaha

Dysautonomia can play havoc with your digestive tract. You fill up quick when eating. You vomit up food. It simply sits in your abdomen doing nothing. It moves, or doesn't move. Too quick. Too slow. Too....something. Something, that it's NOT supposed to do. Something that involves pain and communing with the porcelain.

There is no greener side of the fence. We can laugh at it. Poo and all that surrounds it, is rife for humour. My friend Rach's recent post about self-administering enemas is hilarious (head over and check it out), but I also know what living like that can do to your sense of self. As strong as you become dealing with illness year after year, there are certain moments where you want to sob into your pillow.

It is incredibly debilitating. To your body and to your spirit.

And so you change your diet. You scour support groups and Medline and Pubmed. Is there something new? Have you missed an important paper? You meditate. You beg the Universe for an answer. You shell out cash for alternative therapies. Traditional Chinese medicine, naturopathy, reiki, healing ceremonies and crystals. You align your chakras and bark at the moon. Just in case. Because if you never tried and it was the answer....desperation wins and your bank balance loses.

And then you revert to taking a med to make it stop, make it start, to keep down the vomit and stop the pain. Because you have to manage it somehow to survive.

The world doesn't stop for you to do a six month wholistic treatment, where you focus solely on your health. 8 hours each day dedicated to taming your innards is a pipe dream. If you have kids, or a husband, partner, job, dog, desire to concentrate on something other than your health for five minutes a day, you can't just fixate on your defunct digestive tract. In reality, it's just one of a myriad of problems Dysautonomia throws up. When all your systems are dodgy it's hard to pick what to focus upon, except for the most pressing issue in the moment.

And it all leads to added anxiety. To worry about toilet availability. To worry about pooing yourself in public, or vomiting. Or both. Will today be a constipation day, or a diarrhea day? Will today be painful, well, more painful than normal? To knowing that if you don't get the med/food/water/energy mix just right, an outing could end up a complete disaster. Will the nausea impact on your ability to head out of the house, chat to others or simply remain upright? Will the burst of diarrhea end up in yet another ED visit? Will the excruciating stomach pain end in yet another ED visit? Will.........

But I take heart in the fact that I'm not alone. I don't want anyone else to be in this position, but the relief and comfort that comes from having friends going through the same or similar things is beyond words.

Plus, the ability to share a wry poo joke with someone who is also bent over, or stuck on, the porcelain?

Now that is priceless.

Michelle

And it's only 12 more days until I see the autonomic gastro. Please let him have some answers. Feels like I've been waiting forever

Faith No More's, Falling to pieces, just seems so apt today.


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 $2,600, keep donating and hopefully we can reach $10,000.

Saturday, 27 September 2014

Pink blossoms and buzzing bees: 30 Minute Poetry

(It really feels like Spring when the blossoms start appearing.)

I hit a rough patch, well more than one really. For a while it's been rough patch, after rough patch. You can only soldier on for so long when the rough is all you have, day after day for months without end. A post or three back I mentioned how I was at that point. You know the one. The one where it's just enough. Where what you could deal with yesterday, is simply too much today. And in the midst of that fog of struggle and wanting to build a pillow fort and simply disappear from the world for a while. When rough textures and sharp edges are all there are as far as they eye can see. Lovely people both here on the blog and over on FB reached out. Messages, lovely comments, silly memes and photos to make me laugh, songs to lift or just because. And it's hard to explain how much they mean. That people you've never met in the flesh, care. And not only care, but take their limited energy to tell you they care. And suddenly you find yourself emerging from your dark place and making inroads back into the world. Because there are others who have your back and offer their shoulders without expectation or caveats. So I wanted to say thank you to everyone for pulling me out of my hole to see the world again. Spring in the world around me and Spring in my spirit to match.

This one is my thank you to you all. xx



Thank you for the wind
The gentle caress on my cheek
as I sit eyes closed on the chair in the corner of my yard
Cool and invigorating
Cleansing and revitalising
The breath of life
The breath of love
The breath that joins us all


Thank you for the birds
That flit and soar
Shadows racing across the ground
Flashes of colour in the sky
That sing of love and joy
Joy for the sun
Joy for the small berries emerging on the branches
And the nectar in the tiny blooms
Joy for the myriad of small insects that emerge at the first hint of warmth and renewal.


Thank you for the budding leaves
The tiny bunches with vibrant red edges
slowly unfolding with each added ray of sun.
A tight bump on the sides of stark branches
soon one, then two, then three, are seen fluttering in the breeze
Chaperoned by light pink blossoms and buzzing bees.
The eye once attuned to their presence can't help but see them at every turn


Thank you for the sun
That warms my face
And winds it's way into my blood
To chase away the cold and heat the heart
To uncurl the spirit from it's hiding place
To stretch out to the world around
And feel it all
Familiar and new bound together in joy.


Thank you for the moon
Rising in the east from crescent to full
shining just enough to illuminate the world
To drain the colour but light the way
To show the shadows of the life of day
The outline of the trees, the swings across the street, and the chairs in the yard.
Echos of the day passed, the day soon to be.


Thank you for the stars
Strewn across the sky by a casual hand
Beauty in their disdain for order and regimental adherence.
Points of light in the darkness
To be spied when lying in the dark places
Look up and focus
On one just one.
Claim it as your own to shine for you
But to be shared with all.


Thank you for helping me see
Thank you for making me feel


Thank you.




Michelle

Now to sit out back and enjoy and appreciate a bit of it on this lovely Spring day.

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 $2,600, keep donating and hopefully we can reach $10,000.

Wednesday, 24 September 2014

Snippets: 30 Minute Poetry

(Agnes Toth, EmpathySource  
I'd love to track down a print of this, but I couldn't get her site to load. 
If anyone knows, or can get the site to load and check, that'd be cool.)

Today has been a fatigue and pain filled day. It feels piecemeal. My exhaustion and irritation morphing into an aimless picking at life. A bit here a bit there, and disatisfaction all around. Read every third word of this paragraph and try to understand what has been written. That is what I use to explain it, to the well people in my life. The fragments fail to coalesce and you are left with a hint, or an echo of the intent, of the day. So I wrote, as I am want to do in these states. The fatigue of chronic illness is unlike any other. There is a weariness to the soul as much as the body from unrelenting waves of illness. Even the most prepared and sanguine patient feels this from time to time. You can run from it, and pretend it doesn't exist, but it'll catch you, and pin you down, eventually. And then like the painting above you are forced to search for meaning in the pieces. We are hardwired to find the gestalt, the global whole. There is a pressing need for understanding and balance. And for me it is found in the writing and sharing of the experience. 



Today has been made up of snippets. 


A little piece here. 
A little piece there. 
My day broken into unconnected activities. 
Partial activities. 
Things started and discarded. 
Only to be picked up an hour or two later and discarded again. 


I try and fit all the pieces together. 
To piece together my day. 
To find continuity. 
To account for all the time that has passed.
Only to come up short.  
Because
Tired fractured thoughts
Equal tired fractured activities.


The weariness of activities undertaken on the days prior.
The weariness of pain.
The weariness of the drugs used to take the edge off the pain. 
The weariness of existing in a broken body.
The weariness of not being the you that exists in your mind.
The weariness of a mind that 
Although fractured 
Is willing.
Confined within a body that is not.


So I start to type and stop. 
I open up my email and close it.

I try to stand and quickly lie down.
I make it to kitchen and look longingly out the window and my sun-filled yard.
And retreat 
Back to my default position, 
Supine on my bed.


Propped just right.
Down to the exact millimeter and exact angle.
To manage the pain.
And the blood pressure.
And the nausea. 
And.....


And I pick up the new pack of post its.
I take off the plastic wrapping.
But can't find my pen.
The pen that is right. 
The only one that lets the words flow.

So I toss them on the sheets next to me. 
Irritated and defeated.


To pick up my phone
And mindlessly scroll through.
Little more than a blur of colour. 
Names and images fail to register.
Until it too is tossed aside 
To sit next to the notebooks
And chips
And magazines
And books
And pill box
And empty silver squares
Crumpled in anger at the nausea the contents control. 


I flick through the channels on the television.
I'm not watching.
Or listening.
No details emerge.
Yet I know 

Nothing fits.
Nothing works.
The voice.
The music.
The theme.

All of it grates.
Nails on a chalkboard.
Ice scrapped in the freezer.
Tearing at already frayed nerves.

Because nothing fits.
Nothing works.
When you are in the midst of exhausted, 
Directionless,
Agitation.


So I reopen my lap top.
And start to tap on the keys. 
And write down the snippets.
Of which this is one.


And try to piece together my day.
The minutes.
The hours.

And me. 


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 $2,600, keep donating and hopefully we can reach $10,000.

Tuesday, 23 September 2014

Calling all artists, closet artists, occasional doodlers, frustrated poets, and interpretive dancers, with Dysautonomia.

(My paltry doodling trying to capture my Dysautonomia experience, source)

Back in 2012 I stumbled across UK based and award winning artist,  Sophie Ploeg. Her painting The Blue Dress, depicted a woman experiencing POTS. And it hit the mark in a way that only someone who was living with the condition could achieve.

As Sophie herself explained, "I wanted to express the feeling of dizziness and loneliness in a painting." And she captured it perfectly.

I was instantly drawn to her piece and have followed her work the last couple of years. Last year I was lucky enough to become the owner of a print of The Blue Dress, when she was generously selling them to support the work of Syncope Trust and Reflex Anoxia, aka STARS UK. I treasure my print because it's one of the few artistic interpretations of Dysautonomia that I've come across. I've been lucky enough to get to know Sophie since and am inspired both by her artwork and her ability to create such stunning detailed pieces whilst contending with the fickle nature of POTS. (You need to check out Sophie's lace work, especially her recent The Lace Trail collection. If I didn't have shocking brain fog this morning I may be able to come up with better descriptors than amazing, but really her work is amazing. I think her Black Lace Shawl may be my favourite.)

I've been thinking about Sophie's painting, and how art can be so incredibly powerful in conveying the illness experience. And also about how important it is for patients to reclaim their voice and tell their stories. And last night about 4am I had an idea.

For the month of October, Dysautonomia Awareness Month, I'd love to showcase artistic works of patients that examine life with Dysautonomia.

So the theme is:

Exploring Dysautonomia through the Arts.
  • It can be a painting
  • A drawing
  • A song
  • A poem
  • An interpretive dance (many internet hugs for the inclusion of jazz hands or spirit fingers)
  • A sculpture
  • Mixed media
  • Photography

You don't have to be a professional artist. Art therapy can be an incredibly powerful in both exploring our personal experience and helping others to understand what we are dealing with on a daily basis. So if you have a piece hiding in your cupboard, or a scrap of paper hidden under some magazines and coffee cups, get them out and send them in.

Deadline for submissions is 5pm 30th September 2014.

Guidelines:

  • This is open to patients only. 
  • The piece must reflect an experience with Dysautonomia (eg POTS, NCS, AAG, OI, PAF, generalised Dysautonomia.)

In your submission include the following:

  • Attach a short 1-2 paragraphs explanation of your piece.
  • Attach a short artist biography (a few sentences only).
  • Attach your submission as a .jpg, .doc, or video link eg YouTube link.
  • You can be Anonymous if you like. 
Send all submissions to: rustyhoe(at)livingwithbob(dot)com

So dust off your paints and your pastels. Practice your vocal scales and dust off your leotards. Get your art on people.

Cheers
Michelle

Anyone who knows me, knows I love Frida Kahlo. Her vibrant and evocative works, especially the pieces where she explores her own medical issues are perfect. This song is a lovely tribute to her by Oz band Tinpan Orange, Song for Frida Kahlo. Love Emily Lubitz' vocals.


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 $2,600, keep donating and hopefully we can reach $10,000.

Monday, 22 September 2014

Break and mend.


We moved from the city to the country eight months ago. Well when I say city, we lived on the fringe, on the side of a mountain, and the edge of a lush national park. Not much in the way of the concrete and steel that epitomise most cities. We moved to the land of wide green floodplains dotted with black and white cows. Dairy country. There are also goats, sheep and an amazing amount of alpacas, but it really is dairy country. The odd patch of red gums stand sentinel over their bovine charges. And the aged grey skeletons of their massive kin dot the long tamed paddocks that surround. Three rivers collide here, and the land is lush. Thick green grass and vibrant yellow swathes of canola. Turn South and this country changes quickly to sandy scrub lands. In about 20 minutes you hit the coast, and the wild seas of Bass Strait.

In eight months we've never made it to the sea. We've talked about it. We've thought about it. But my health has meant that it just hasn't been a possibility. 20 minutes to the sea might as well be 20 days to the sea, when you can't sit up without gasping in pain or your body trying desperately to pass out. It's been sitting there just out of reach since we moved here. Golden sands and salt laden winds remembered from other times we've lived in the area. Time's rose coloured glasses morphing those previous experiences into some sort of beach Nirvana. Compounding the frustration of knowing it is both so close and so far.

Until yesterday.

Yesterday a moment of spontaneity hit. The point was reached. I dressed and made sure I was well medicated. And we headed down. All of us. Me, Mr Grumpy, the youngest, and Freyja. It was both exhausting and exhilarating (another post on that to come).

While we were wandering on a sandbank, in between the sea and a riverlet, a shell on the beach caught my eye. A giant amongst all the other small shells dotting the sands.

From a distance I could see it was a beautiful Conch shell.

Upon closer inspection I could see it'd been broken. Multiple times.


And healed.


Break and mend. Break and mend.


There's a poetry in that. A beauty that is more apparent for it's imperfections and resilience.


Each break, the owner of the shell, now long departed, had not given up. Instead they had rebuilt and reworked. It had remade it's home time and again. Undeterred by what were obviously large injuries.

It reminds me of the quote from A Farewell to Arms, by Ernest Hemingway:

The world breaks everyone and afterward many are strong at the broken places.

When I look at the shell. When I run my fingers over the breaks and the thickened scars, I can sense the hardiness of it's owner. New and old colliding to create strength. To continue. Again and again.

Nature does it instinctively. And as I look at the shell I get a sense that I need to trust to nature. I fight and writhe, trying to control my fate. But in truth crises have arisen and been weathered, and I keep going. The scars to my spirit are many. But the strength they create is also great.

Just like the conch that I brought home to remind me,


I am strong at the broken places.

In Buddhism, the Conch is an emblem of power, authority and sovereignty, whose blast is believed to banish evil spirits. I like that. I like to think that this imperfect shell, with breaks and scars, which has lived and weathered tough times in an unforgiving sea, has the power to banish evil. To chase away fears. That it is powerful and strong.

Just like me.

Michelle

I've heard multiple interpretations of this PJ Harvey song, but I like to think she's singing to herself, or at least when I sing it that it is about believing in myself. After not trusting my body for a long time thanks to this disorder I am slowly making my way back to seeing the amazing gifts and strength I still possess. That's the thing about music you can interpret however you want. The fact a song has meaning for you, whatever that may be, is a gift from the artist. It's You Come Through, from The Peel Sessions 1991-2004.



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 $2,600, keep donating and hopefully we can reach $10,000.

Sunday, 21 September 2014

Grief comes in many forms. Even in the form of a red, mass-produced work shirt.


I've written about grief here on the blog more times than I can count. About the difficulty of coming to terms with a life that is nothing like I ever envisioned. I don't really have any words of wisdom on the issue except for my own experience in navigating an ever-changing path. I used to be a psychologist, but that is a lifetime ago. A lifetime, that lying here in bed today, seems completely foreign. Like something I read in a book sometime. Or a late night movie, where I was watching but only half-awake, so I am left with nothing but half-formed snippets, that don't quite make a whole.

My memory is not great these days. I struggle to recall day-to-day, but in some ways the long term forgetfulness worries me most. I remember walking along the ward corridors. The hustle and bustle of over-worked nursing staff. Blue clad physios bent over our elderly patients gently lifting limbs and murmuring words of encouragement. I recall sitting at a patient's bedside holding her hand as she cried, distraught, wondering why her husband, long-passed, had not visited. I remember the little room at the front of the ward where we'd take patient and their families to deliver bad news. I remember the look on the faces of adult children forced to make the tough decision to send their parent to a nursing home. The smell of Avagard in it's pink bottles dotting every room and every corridor. The less savoury smells of patients no longer in control of the most basic of bodily functions. The beeping and the buzzing. But it is all snippets. Faces and events merge into one another. I am left with nothing more than a jumbled montage to represent that period of my life.

There is a special grief in losing the particulars of those memories. I was working in a new hospital on the edge of the city sprawl when illness first came calling. A growth corridor as they like to call it on the news. And grow it has. I drive past now and the open windy paddocks that surrounded are filled with building after building. Concrete, glass and steel. I can hardly see the hospital from the road. It is as half-glimpsed in real life as my time there in my memory.

So much of me was wrapped up in that job. I defined myself by the label on my ID card. And so did those around me. It was on my cards and my stickers. It was reflected in the books on my shelf. The large pull-apart brain model on my shelf, I used to explain the infinite varieties of strokes, tumours and dementias. The large posters on the wall of my office showing the same collection of disorders and injuries. And the handouts I'd prepared for patients and families. It was on my shelves at home and my green bag that carried my life from home to work and back again. It was the shorthand means of communication at parties. Though Neuropsychologist, usually leant itself to blank or confused stares. It's not the commonest of professions.

I was one of the lucky ones. One of the few who end up working in a job they love. And still I lie here today having forgotten the details of my time there. Given its importance at the time and the heartache I experienced when I left, it seems counter-intuitive that I would be left with nothing more than a mish-mashed collection of images and sense memories. It's like looking through a car window on a rainy night. Everything is distorted and half-formed. You know the splodge of yellow light above your eye line is a streetlight and the two red lights in front a car, but only through interpretation and deduction, not because of clarity. The survival mode in which I was functioning that last year at work seems to have been little beyond a ruthless practicality. Identify task. Complete. Drop. Move on. No time for reflection or integration. And as a result, I am left with a time more flickering mirage than reality. It wasn't living. It was existing. And lost time is all I really have to show for working myself into the ground in an attempt to cling onto a life I was no longer capable of living.

Slowly I have been unpacking that part of my life. First it was my work bag. Then my files. My text books are packed away in the cardboard box wasteland that is the garage. My awards and certificates are packed away somewhere. The fact I no longer care as to their location. a huge step. But I still have my professional membership cards, a handful of business cards and most of my work clothes. Slowly I am peeling off the layers. Slowly I am letting that part of me go.

A few days ago I sat on the floor of my walk-in-robe and started sorting through my work shirts. Our combined marital hoarding tendencies make it a cramped little space, but I kind of like that. Where normally I am claustrophobic to the extreme, that little room. filled with the bits and bobs of our life, is somehow comforting. I was holding a red long-sleeved shirt in my lap and I felt an unexpected visceral hit. It's an unremarkable shirt other than being my favourite colour. Just a small variation of every other work shirt I still own. A mass-produced, cotton and elastane blend. And yet I found myself rubbing my fingers over the fabric with a building sadness and longing. I don't recall any specific instance where I wore it to work. I don't recall wearing it whilst giving either inservice or bad news. I don't recall wearing it sitting in a meeting or conducting an assessment. It is remarkable in its ordinariness. But it triggered the feeling of loss nonetheless.

It would seem I'm still working on that part of my life.

Acceptance is done in pieces, disjointed pieces. I'd love it to be a clean, formulaic, one hour television episode. I'd like to believe that lie. But grief jumps up and grabs you when you least expect. Loss is loss. And so it would seem I am still attached to that chapter of my life. And that's okay. Or, at least that's what I am telling myself today.

Every part of our lives has meaning. That time that came before illness is as much a part of me as the now. It has formed me in ways I can both acknowledge and have yet to discover. I miss that time. I grieve it even now. I will no doubt grieve it in the future. The grief is far less than when I first sat crying on my couch while the social worker from the local outpatient rehabilitation centre sat opposite deciphering my sob-obscured mutterings. But while muted, it still has an impact.

So I'll hang onto those shirts until the time when I am ready to let them go. When I no longer need them, and they serve no purpose. For now they can sit there in the jumbled pile I shoved onto the shelf. To be ignored until the next time, I think I'm ready.

Michelle

I'm not afraid to say, I've had my ups and downs
On any other day, I'd run myself out of town

Now I'm standing in the middle of a good dream
Tryin' to figure what I do and don't need
Hopin' I can give myself a good chance
Not too proud to show the spirit I once had
I guess we'll wait for the night to fall

Bernard Fanning, Further Down the Road

 

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 $2,600, keep donating and hopefully we can reach $10,000.

Thursday, 18 September 2014

Dysautonomia Awareness Month is coming up next month. So what kind of awareness will we be raising?


Dysautonomia Awareness Month is coming up in October. A whole month. I know, I'm excited too. We need awareness. Lots and lots of awareness. We need to be educating doctors and the wider community. We need to be educating ourselves as patients to be able to access the best care for our particular case. Myths surround Dysautonomia. The only statistics come out of the US and even they are estimates, as it is such a misdiagnosed and under-diagnosed collection of disorders. Slowly more data on prognosis and numbers of particular subtypes, is coming to light, but for the most part, the numbers involved in research are small. Research is slowly gaining momentum, but it and awareness are desperately needed. So a whole month of focused international awareness is very welcomed.

But everytime this comes around I am torn.

There is a desire not only to provide general education, but also positive stories of recovery, or doing great things whilst ill. They provide a much needed boost of hope to patients and let the wider public know we are more than our illness. Often it is this side of the Dysautonomia story that dominates awareness. Everyone likes an inspirational story and they are much more palatable than the alternative. But I wonder if sometimes this desire to promote the positive, undermines the seriousness of the disorder? In turn undermining the experience of many patients. Also leading to the "it won't kill you", "just get on with life," type of comments from medical professionals who perceive these disorders as more an inconvenience rather than a serious and complex condition.

There are a subset of patients who are severely unwell and will continue to be severely unwell. There are many who won't get better. Who will continue in a chronic state or progress. There are patients who are in and out of hospital on a regular basis. Who should be given a frequent flyer card for their repeated ED presentations. There are patients who no matter what combination of meds, exercise, dietary and lifestyle changes, meditation etc will not get better, or at least for not a long period of time. There are forms like Multiple System Atrophy which are fatal. In every subtype, symptoms range from mild to severe, with disability varying accordingly. The point being that these are complex chronic conditions, and life changing for many. This is not to take away hope from patients, as there are many who get better or are well managed, but there needs to be a commensurate recognition that this is not all patients and hiding from that fact does a disservice to those patients struggling.

Time to diagnosis from symptom onset is thought to be around 6yrs, yet there are many patients who have been ill 10 and 20 or more years before finally receiving an appropriate diagnosis and treatment. Even 6 years is an appalling statistic. That represents six years of uncertainty, fear, declining health and either no, or inappropriate treatment. People lose jobs, drop out of school and university, marriages breakdown and the functional impact of life can be huge.

The misdiagnosis of a variety of mental health conditions is rife. Anxiety, Depression, Somatoform disorder, Conversion disorder are all reported prior to accurate diagnosis of a form of Dysautonomia. Trust is lost in the medical system. And patients experience stigma and shame which further impedes on their medical treatment. This feeds into the idea that Dysautonomia is related to mood and attitude rather than a dysfunctional autonomic nervous system. Once those labels are in your medical record they are incredibly difficult to remove.

Alternately, there is a strong correlation between chronic illness and mental health issues relating to the stress of living with illness. Dysautonomia impacts upon our sense of self, it changes our relationships, and impacts on our overall coping. Creating dedicated support networks for patients to discuss the stresses of living with illness. Linking in with community psychology and counselling services to be able to direct patients to professional services that understand chronic illness is vital if we are to give patients access to more holistic care.

Access to appropriate health care and medications is continually problematic. Finding a doctor to put the pieces together is difficult. Finding more than a handful of specialists in some countries near impossible. Western countries such as the Australia, the US, Canada, the UK and New Zealand are lucky in comparison to other countries. I receive messages from people based throughout Europe and South America who are having trouble finding even a single doctor who has heard of Dysautonomia, are unable to locate a tilt table or autonomic testing, and are winging pharmaceutical treatments. The patients in these countries are relying on other's in more well served communities, to help point them in the right direction as there is no local help available. This for me is a huge area of concern and I would love to see a more widespread International campaign for awareness and development of services.

Rural access to care is also an issue patients face. Most specialists are based in cities in major hospitals. Local health care is limited and most are unlikely to encounter either a GP or ED that has experience with Dysautonomia. This is an area prime for awareness. It also raises the issue of costs of travel to cities for patients who are often already doing it tough financially. Add in the simple logistics of such travel as many patients find prolonged travel and being upright in a car difficult and this is an area in need of both awareness and services, or at the least remote support from city-based specialists. (I have contacted both my local regional hospital and medical clinics to offer educational inservice on Dysautonomia for October. Looks like the hospital one is going to happen.)

Many medications continue to be difficult to access in various countries. From Droxidopa and Midodrine to Octreotide, Ondansetron and Ivabradine problems, exist with access. In some cases cost is prohibitive. For example Ondansetron, used for nausea and vomiting, is only reduced in price for cancer patients going through chemotherapy (even patients who are receiving chemotherapy for other disorders cannot access the discount form), otherwise it is roughly $3 for a 4mg wafer in Australia. Yet 100 8mg tablets can be brought for $5 in New Zealand. Others like Octreotide used in the treatment of orthostatic intolerance and intractable diarrhea, are only available on the PBS here in Australia for 3 disorders, none of which include any form of Dysautonomia, off-label cost is roughly $4,000 a month. Access to IVIG for autoimmune forms is incredibly difficult (1000 blood donors are required for a single dose) and again incredibly expensive if you don't meet a limited criteria. The complexities of the health insurance industry in the US means that patients applications for needed medications is sometimes rejected. Prescribing rules in many countries are complex and some medications can only be prescribed by a small subset of specialists. Multiple medications quickly add up and financial burden is great. The cost of chronic illness overall is crushing for many and bankruptcy is common place.

Access to disability support in many countries is difficult. There are a tightening of rules here in Australia and in the US there are multiple stories of repeated rejections before finally getting on the paulty disability pensions. The UK treatment of disabled patients is legendary for its lack of care which is leading to increased suicide rates.

Paediatric patients face challenges in maintaining a school and social life. Schools are frequently reluctant to accommodate student needs. Many are forced to home or distance school, which can make maintaining a social life very difficult. Similarly, workplaces are often reluctant to accommodate workers who require modified jobs or job sites. Patients can find themselves quickly unemployed, often not by choice.

Many patients don't fit into the most common forms of Dysautonomia. POTS and to a lesser extent NCS, are the most recognised forms and receive the greatest amount of attention in awareness campaigns. Yet there are a variety of forms such as AAG, or those who have a more general Dysautonomia who receive little recognition or awareness, furthering isolation.

These are but a few of the serious issues associated with Dysautonomia. But they are issues that need far more attention. And I would love to see a focus on these important issues during our awareness month.

In only focusing on the positive stories we risk diluting the seriousness of the condition and in turn doing patients a disservice. Are we raising awareness in the wider community for better understanding of the seriousness of the disorder, or are we providing a hope boost for existing patients? Probably a little of both, but it is a question we need to ask. As patients, we are often the most informed sector of society when it comes to Dysautonomia, it is the rest of the community that is sorely in need of education.

Positive stories have their place in awareness but it is a fine line we walk. As patients we need hope. We need to believe in recovery, in life after illness. Alternatively, we need to believe in the ability to have a good life while illness is part of our day-to-day experience. I love reading stories of success. Of patients being able to return to study or work, starting families and getting married. But I also receive many emails from patients who feel the focus on this one aspect of stories don't represent their experience. That their families and doctors believe that if others can overcome, then so should they. In a sense the over-abundance of positive stories belie their experience and lead to a greater emotional and illness burden.

What the answer to this is I really don't know. It's a delicate balance of needing the wider community and in particular the medical community to understand the seriousness of these disorders, and maintaining our own hope.

Can we do both? I think we can.

But I would love to see a focus on the big issues of access to appropriate diagnosis, medication, health care, disability support, a more international focus, more subtypes, and an acknowledgement of how serious this group of disorders can be. These are the continuing daily issues with which patients must contend. They are the issues that have a direct effect on positive outcomes.

What are the big awareness raising issues for you?

And don't forget to check out the fantastic discussion going on over on FB

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 $2,600, keep donating and hopefully we can reach $10,000.

Wednesday, 17 September 2014

TMI



TMI
(Too Much Information) I see that written everywhere over support forums. Usually there's an apology stuck in there too.

Sorry, TMI post ahead. Please remove admin if not okay.

I've done it myself on more than one occasion. But each time a small part of me thinks, I wish I could just ask the damn question without feeling like I have to apologise.

You see, every time there is a TMI post it is always followed with comments like,

OMG, me too!

I thought I was the only one.

Thank you so much for posting.


Every time.


I've had the same reaction here on the blog, Whether I've posted about my bowels, or my hysterectomy, I am always flooded with thank you emails and messages. Though I wish people would post here on the blog, or over on FB, I understand their reluctance. So much of what is in truth, just a normal part of illness is wrapped up in layers of stigma.

You don't speak about those things.


Disorders like Dysautonomia come with a whole host of less savoury and often confronting symptoms. The Autonomic Nervous System runs throughout the body controlling multiple systems. And yet even most of our doctors speak only to a select number of symptoms, most commonly blood pressure and heart rate.

When was the last time your doctor asked you about your sex life? The literature is quick to point out impotence as a potential for men, but we women rarely get a mention. In truth, even for men apart from the impotence issue, little else is discussed in relation to sex. Yet whether physiologically, emotionally, or both, our sex lives can be impacted by Dysautonomia. A recent closed session from Dysautonomia International with noted neurologist and Dysautonomia specialist Dr Svetlana Blitshteyn (Sexual Health and Pregnancy in Autonomic Disorders), revealed a wide range of sexual, gynaecological and reproductive concerns. For many it was the first time these issues had been addressed let alone acknowledged. Dr Blitshteyn was able to provide answers to multiple physiological questions in these areas, clearing up myths, pointing out continuing holes in our knowledge and allaying fears for many. I have been ill for 8 years, yet this is the first time I've seen this subject addressed so directly. And the response from patients was overwhelmingly positive and grateful.

This of course doesn't include the emotional aspects of intimacy. When nausea and other symptoms get in the way of sex. Or the way we respond male or female, to body image, and the changes that can occur thanks to medication effects. For many of our doctors it would seem that as chronically ill or disabled patients we are supposedly asexual beings. Yet intimacy is an ongoing issue discussed in many forums by patients at a loss as to how to maintain it in a relationship.

Bladder and bowel issues are also highly common in the Dysautonomia community. Diarrhea, constipation, dumping syndrome, urinary frequency and urinary retention, and issues relating to continence abound. Yet again these are so rarely discussed by our doctors that patients feel there is something wrong with them when they occur. Without fail, every time I have brought up my own bowel issues here on the blog I am inundated with emails, the same for urinary issues. There are patients living with devastating continence issues who are embarrassed to discuss the issues with anyone, let alone a doctor. Yet there is help available and organisations such as The Continence Foundation of Australia who can help.

I had a little hissy fit over on FB recently about the LBL campaign from Poise, which exemplifies the problems we face.

Maybe I'm tired and grumpy today, but I get irritated with the Poise LBL ads. Are we so afraid to talk about bladders and incontinence, that we have to create an acronym to cover up what is being discussed? Women don't seek help because they are embarrassed, and yet there are organisations like Continence Foundation of Australia which can point women in the right direction to find help. There are specialised programs and specialised physiotherapists. Urinary incontinence is amazingly common, especially following childbirth, and can occur in certain patients with autonomic issues, and there are solutions, but people feel alone because it is not openly discussed. We don't need to shy away from the words 'bladder' or 'incontinence' as if there is something shameful about them. We need to be able to discuss these things, go to our doctors and find our individual solutions. Part of that is using real words and treating it as any other health issue. Take away the taboo and stigma through openness!

And given the numerous response's underneath I am not alone in a wish to destigmatise this issue.

For the most part Dysautonomia patients will be under the care of a neurologist or cardiologist. Embarrassment aside, it is not instinctive for patients to ask these specialisations about their continence or sexual issues. The emphasis is on heart rate and blood pressure, and many other symptoms simply remain undiscussed and in turn unknown. Many will need their doctor to raise the issue. Yet time and again this is not occurring. If our doctors are ignoring or uncomfortable asking about these aspects of our disorder, why would we patients feel comfortable discussing them? How do we even know to ask?

Not every patient will experience sexual or continence type symptoms as part of their presentation. But at least knowing it is a possibility opens up the door to discussions and takes away the fear and embarrassment associated with what are simply symptoms of the disorder, or potentially, another disorder. Symptoms just as normal as tachycardia or hypotension.

Being open about these issues allows doctors to treat the whole patient. It is not about expecting our cardiologist or neurologist to treat our continence issue. But to at least be able to discuss the issue and refer us to an appropriate specialist.

It is also up to us, as patients, to move beyond a TMI response to what are normal regular symptoms of Dysautonomia and other disorders. Too many suffer for our silence. Sex, periods, bladders and bowels AREN'T embarrassing unless we make them so. And openly discussing them is the only way we will change this perception.

So I say, lets remove the stigma and taboo and move forward in discussion and better all round treatment.

No.More.Taboo

Michelle :)

(I written extensively about the other taboo of mental health and chronic illness. You can find two of my main pieces here and here.)

I had to choose this Queens of the Stone Age song as my musical accompaniment. It's one of my favourites of theirs from the much under-rated Rated R album, plus the chorus kept popping in my head as I wrote.

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 $2,600, keep donating and hopefully we can reach $10,000.

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.