Monday, 20 October 2014

Naomi: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014


Today on Exploring Dysautonomia Through the Arts, we have another poem, this time from Naomi. I can relate to Naomi's story and her poem and I am sure many others can to. The ups and downs of the journey and the balance of hope and acceptance, and self-preservation. I must say I am loving all the poetry submissions I thought I was alone in my love of writing and reading poetry but there are a load of us out there embracing poetry as an expressive medium.


I don't typically write poetry, but felt inspired to write about my POTS journey for fun. This poem summarizes my experience with the illness and begins right before I got sick, ending with present day. I became ill during my last semester of college when all my plans were suddenly derailed and I was thrust into a ten year quest for answers. I found myself in an unfamiliar world of unexplainable symptoms, unhelpful Doctors, and rounds and rounds of medical tests with no conclusions. When I finally got my answer (POTS), it was a relief to put a name to my condition, but disappointing to learn that the syndrome is not well understood and unfortunately, the treatments I've tried have not helped. It’s been almost 18 years now and I'm trying to let go of the search and work on acceptance, but it’s hard… very hard. I try to keep a sense of humour and sometimes find myself laughing at the absurdity of it all, while other times feel deeply saddened by the situation. But the great thing about emotions is they are usually temporary! This poem is dedicated to all long term, treatment resistant Dysautonomia patients.



POTS Poem

1997, about to start my life
On the right path, all was on track
The future was so bright

Then something went wrong
Strange symptoms took hold
I sought out many Doctors
But none of them were sold

“But I’m so weak, so darn fatigued
My head is just so dizzy
My feet turn blue, they also burn
And my heart is in a tizzy!”

“My dear, you’re just plain anxious
You’re too young to be that sick
Trust me, I’m your Doctor”
I decide he is a _ _ _ _

What to do? Where to turn next?
I am just perplexed!
I turn to Dr. Google,
He helps me with my quest

Search results: “Autonomic Nervous System”
I have a lead, I’ve got a clue!
An expert will know what to do!

Must travel to the city, there is no expert here
I finally get my answer, but it’s still so very unclear

“Postural Orthostatic Tachycardia Syndrome”
Unknown cause, no known cure
Invisible illness, the future unsure

What is that? I ask
I don’t get it, please explain!
I NEED to understand this
--It is driving me insane!

Forget it, say the Doctors
Too confusing, too complex
We’d really love to explain it
--In short, you are a mess!

Your vessels, they’re too open
Your nerves, they’re just plain shot
Your blood goes down, your heart beats fast
And this is known as POTS

How can we fix it, what is there to do?
Salt, compression, medication
--And if those don’t work, you’re screwed!

I try the treatments, I give it my all
I search for causes while trying to stand tall

I become a human pin cushion
I’m scanned from head to toe
Despite a valiant effort, no escape from my old foe

Many years have passed
My heart still beats too fast
How long can this possibly last?

I think no more Doctors, no more tests
I’m tired now and need a rest
--I am done giving it my “best”

NO!

Accept, but don’t give up
Be brave and learn to cope
Just do your best today
But never let go of hope

Naomi S.



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,200, keep donating and hopefully we can reach $10,000.


Friday, 17 October 2014

Writing Myself.



We were on our long drive home from the city after yet another disappointing and disheartening medical appointment. I was contemplating the injustice of the world, the universe, and life in general, and a blog post was already forming in my head. Words and phrases, the panacea to life's ills. If I could order my thoughts on the drive, I knew I could transfer them to my laptop when I finally made it home. I could write a post. Get it all out. And move on. In that moment I knew the need for words. No choice in writing. Just pure need. If people read, great. If they understand, even better. If no one reads or understands, the need is still there. And words will be written, if only for myself.

Each time the words build up and there is no room to breathe. Then slowly they trickle from my mind to my fingers and fall on the keyboard. I watch them appear on the screen in front of me, slowly drawing the venom from the bite of bad news. And then there's room to breathe again. My spirit is lighter and I can face the day. That is writing for me.

I've been ill for eight years now and the last year has been particularly challenging (multiple ED visits and my specialists admitting there's little more they can do for me). And yet I've taken leaps of faith I may not have without that sense of having nothing left to lose.

When I finally had to admit just how ill I was and leave work in 2008, I felt defeated. Work was my life and I didn't know who I was, or where I was going any more. In 2009 a lovely Social Worker I was seeing, suggested I start writing again. I used to write when I was younger, but life had gotten in the way and it had simply slipped aside. Slowly, I started putting words to paper. I showed her, then on her insistence, my family and some other therapists I was seeing. Eventually I started blogging. And in the process I found a renewed love of writing. Therapy in a sense, just in the shape of a keyboard. But I never had the confidence to go further.

Then in 2013 I went to my first Write-ability workshop, offered by Writer's Victoria and Arts Access Victoria, and I began to believe that maybe, just maybe, I could take the next step. Another Write-ability workshop this year on Memoir and my confidence and excitement grew. I took a leap of faith and offered up a piece for a Write-ability Salon at the Emerging Writer's Festival, and suddenly I was in front of a room full of people sharing my words. Then, more recently I took a deep breath and applied for one of the Write-ability Fellowships and was lucky enough to be selected. And suddenly I feel like I can do this.

I wonder if I would still be sitting in my bedroom tapping away at the keyboard and hiding my words in the safe zone of blogging, if not for the Write-ability program? In all likelihood the answer is, yes. Becoming seriously ill and living with a progressive neurological illness challenges your sense of self in ways I cannot fully articulate. For a long time I thought I had nothing to offer the world as who I thought I was, was slowly stripped away piece by piece. And my confidence took a battering in the process. But now there is a real light in my life. I may not have my health but I do have my writing, and a new sense of confidence. Where it will lead I have no idea, but I am ready for the ride. The Write-ability program has been a huge part of that realisation.

So I wanted to take the opportunity to say thank you to both Writer's Victoria and Art Access Victoria, for creating the Write-ability program and for the fantastic team headed by Fiona Tuomy. It provides so many great opportunities for writers with a disability and means a lot to me, as a woman muddling through life with an acquired disability, and I know to many others.


Excited to announce that I was awarded a Write-ability Fellowship recently. Can't wait to start the mentoring process with Sam Twyford-Moore.

Michelle

For those who missed it, this isn't the best quality, but it's my first time publicly reading my words. And the first time since I left work where I've done any public speaking. I've presented research in a room filled with a couple of hundred other researchers, but this moment was one of the most anxiety provoking I have ever experienced. Plus, I had only been discharged from ED two days beforehand, so not in the best state. Go the power of good pain drugs! And supportive family and friends who convinced me I could do it.

Wednesday, 15 October 2014

Tildy: Exploring Dysautonomia Through the Arts, for Dysautonomia Awareness Month 2014

Today on Exploring Dysautonomia Through The Arts, is Tildy. I love the title of her piece, Well, the Tests are all Normal, as it is a line many of us have heard at some point along the way and particularly before diagnosis. Her choice of colour and the inclusion of the skull and crossbones are perfect.



I've been mysteriously unwell on and off since I was 10, but am awaiting an appointment this month to confirm my 'possible POTS' diagnosis. I've only since June, discovered the Dysautonomia community and am stunned that there's so many other people who understand what these symptoms are like. The blue dress is exactly how you said, amazing.

I work full time at a nail salon and love the designs and nail art side of my job. Although I wouldn't call myself an artist I do paint and draw a fair bit when I'm bored. I love colour! Last year I did an airbrushing course, and when I have time I have been sprucing up my Nana's garden gnome collection. 

Last year when I drew this on my partners tablet I was bed bound again. I had given up on my doctors, I was so frustrated by their lack of concern. I was pretty sure that's not 'just how normal tired people feel' but I tried to stay positive, ignore it all and appreciate the gifts in my life. 

On the surface I acted calm, 

"I'm ok, it'll go away soon, I just need a rest",

but really I was always scared that one day I wouldn't wake up.


*(POTS; Postural Orthostatic Tachycardia Syndrome) 



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,200, keep donating and hopefully we can reach $10,000.


Tuesday, 14 October 2014

Sarah: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014


Today on Exploring Dysautonomia Through the Arts is the first song offering courtesy of, Sarah. I am constantly amazed as each submission is able to capture another aspect of living with Dysautonomia and chronic illness. The ideas of burden and inconvenience Sarah explores are something with which I continue to to struggle.


I'm a 22 year old musician, I've recently moved out of home hoping it will help my health; I have a neurologist, cardiologist and a great gp. My family and friends try to understand my illness but they don’t. How could they? So maybe this will help people understand. 

My piece is a song I wrote last year about my struggle with keeping relationships together while Dysautonomia controls my life.

I wrote it while at university, I was diagnosed with Neurocardiogenic Syncope within my first year, I was passing out left and right, having seizures and terrible pain. I would lose consciousness on average of 8 times a day, everyday; my biggest seizure/convulsion attack lasted for more than 14 hours straight. 

Often, I’d be unconscious on the floor of a classroom or in the hallway at uni, most people would leave me and I'd be there for hours, though some special people sat down and tried to help me. This song is how I feel about that, I'm grateful that they try to support me, but I don't know why they do – I’m an inconvenience, I make life hard by just being, I can't ever return the favour. 

The song is called Let You Go. In the lyrics I talk about the struggle of deciding to cut myself out of everyone’s lives for good just to make it easier for them because I'm such a burden.

We are in our pjs because I wanted to dress is my 'I’ve given up on life clothes,' to show that struggle affects every part of me and it’s too hard to keep trying sometimes. 

"The lyrics can be a bit confusing if you sort of don't understand, so as most of you know I have this condition thing where I pass out and convulse and stuff…so it’s sort of about that how people will come and look after me but I don't really know why they're doing it…because I can't look after them, 'cause they're not screwed up in the brain like I am, I can't give them anything in return and I don't really understand why people would help me. So this is what this (song) is about.”




Let You Go – Sarah Foord
lyrics:

I never wanna let you go,
And I don't know, what else to say.
I never wanna let you go,
And I don't know, what else to say…

‘Cause you take my pain.
I wanna do that for you, babe.
Oh you take my pain,
While you have nothing to gain…

You always hold me tight
While I try to fight the ghost in the dark.
You'll always hold me tight
While I’ll try to fight the ghost in the dark…

‘Cause you take my pain.
I wanna do that for you, babe.
Oh you take my pain,
While you have nothing to gain…

I love when I'm lost,
‘Cause you're always there.
But that’s not fair…

I never wanna let you go,
And I don't know, what else to say.
I never wanna let you go,
And I don't know, what else to say…

‘Cause you take my pain.
I wanna do that for you, babe.
Oh you take my pain,
While you have nothing to gain…

While you have nothing to gain…


While you have nothing to gain.

This song is protected by copyright and belongs to Sarah Foord



*(NCS: Neurocardiogenic Syncope; POTS: Postural Orthostatic Tachycardia Syndrome)


Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,200, keep donating and hopefully we can reach $10,000.


Monday, 13 October 2014

Nuntia: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

Getting back into the schedule for Exploring Dysautonomia Through The Arts after an ED hiccup that set the schedule back. Today is Nuntia, whose beautiful and vibrant pictures depict her life with ME, Fibromyalgia and Dysautonomia. I really love her bottom picture Broken Wing, something about it really resonates with me.

My artistic name is Nuntia. It means 'messenger' in Latin. Art to me is primarily communication so in a sense I feel like I am a messenger. I held my first solo exhibition in June 2014. It was autobiographical and alongside twenty self-portraits I exhibited ten poems in my mother tongue which is Maltese. I have suffered from ME and fibromyalgia for twenty years and in the last twelve years I have also developed dysautonomia. When my health permits I paint. I am currently working on my second collection of works. This painting is called Jailbird. It is acrylics on canvas and is one of a series of self-portraits I painted for my first solo autobiographical exhibition which was held last June. It depicts me looking out from my bedroom window, yearning to be outside but stuck inside for the nth time!



This drawing is called Broken Wing and it's pastel on paper. In it I tried to express the broken feeling I get because of my debilitating illness especially when I'd like to fly and instead I have to crawl.


Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,200, keep donating and hopefully we can reach $10,000.

Sunday, 12 October 2014

Step 1 Numb.



Sitting on the couch tonight, I feel.....I'm not sure what. Empty. Numb.

Standing on an empty beach. A black and white photo purged of detail. An echo of a person. A ghost on the scene. The invisible winds erasing me particle by particle. Until I am but a whisper. It's easier that way.

Remove yourself. Erase yourself. Too raw. Too soon. Not today. Self-protection mode. Until later.

I'd built up today. I had told myself not to get my hopes up. But a part of me did. The part that has been clinging to the edge of the precipice by its fingernails. The part that said this is bearable because I just have to get to there. The dot on the map. Point B. I can deal with the journey from Point A as long as mythical B is reached. When I can step through the wardrobe to a world of magic and wonder, hope and strength. A world without pain and worry. When the journey is made bearable because there is a reward at the end. That part of me may have been small but it was powerful. More powerful than I realised.

I wish I was still on the journey. Uncertain future is better. Than cold hard reality.

I sat in the appointment today and my fear was realised. That fear I had buzzing in the back of my mind for most of this year. That I'd stuffed in a cupboard bound and gagged. Because if spoken it would give it power. And yet today it was spoken and now I have to make sense and get through. My pain for the last year is not gastric but neuralgic. Neuropathy strikes again and I get to have knives in my abdomen. An answer but no solution. And now I have to learn to live with it.



Live with it.

Live with it.

Live with it. 


I may have some hope with some issues that surround. The gastroparesis. The fact I can't crap like a regular person because the nerves in my muscles don't work properly.

"We see it in a lot of people with chronic neurological disorders."

How many times have I heard that this year?



Losing weight?

"We see it in a lot of people with chronic neurological disorders."

Unexplained loss of function in one foot?

"We see it in a lot of people with chronic neurological disorders."

Not being able to work my muscles properly to defecate?

"We see it in a lot of people with chronic neurological disorders."

Excruciating abdominal pain?

"We see it in a lot of people with chronic neurological disorders."



It happens in a lot of people. But we can't be arsed working out why, or finding solutions.

It happens in a lot of people. Like that makes it better.

It happens in a lot of people. So for us it is meh.

It happens in a lot of people. A skewed group of extremes which creates a skewed view of normal.

It happens in a lot of people.



It happens.

Live with it.

We can do this and this. But really it won't change much.

See you before Christmas.


Live with it.

Live with it.

Live with it.


Deflate. Vague out. Retreat. It's palpable. It's visual. Even in the chair I could feel myself drop. The tense anticipation that held me together left and millimetre by millimetre I shrank. Down and into myself. Put up the walls and dissolve the emotions. Don't feel. Not yet. Ignore. Process later. Down the track. When you're stronger. When your armour is thicker. When the defenses are raised. When you are that other person. The one not crushed by dashed hopes and broken dreams. The one that must learn to live with it.


Live with it.

Live with it.

Live with it.


If I say it enough times I'm sure I'll understand.

Michelle

Wednesday, 8 October 2014

Patricia: Exploring Dysautonomia Through the Arts for Dysautonomia awareness Month 2014



Next up for Exploring Dysautonomia Through the Arts is Patricia. She captures the frustration of living with chronic illness so well in her poem.



I was given my diagnosis as an aside about three years ago after the usual 'pin-ball' ride of medics who had no clue what was wrong except it was probably 'my age' or 'all in my head' and anti-depressants would surely make me feel better, they just made me angry! and they were the doctors who were actually pleasant and non-arrogant.

My life now, succinctly, makes me feel like I am a badly wrapped parcel that has been left in the sorting office as the address label is illegible. This poem is a small portion of the feelings I experience in various amounts on a day to day basis. But there are one or two people who keep me going, loving in flesh and in the cyber-space, they know who they are! x


Chronic Life

A sorry path of wasted days
look back again and see them trailing
like broken feathers,
from 'game birds' flailing.

A sorry trail of wasted 'friends'
'at loss' for words to heal your ills,
fall one by one along the wayside
the box of 'use to be's' soon fills.

A sorry string of knowlege gained
from sites and books to speed a cure,
frustrated by the NHS
you're just a number that's for sure.

A sorry line of social gatherings
that you've refused or left at speed,
so overwhelmed by those sensations
your 'joie de vivre' they use to feed.

A sorry knotted snake of gut loops,
my peristalsis shot to hell,
plain rice or figs; how best to feed it,
a figgy cramp or 'pregnant swell'?

A sorry tale of 'loving' family
impatient with this useless you,
who wish you would just 'pull together'
oh, were that simply mine to do!






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 $2,900, keep donating and hopefully we can reach $10,000.




Lost words: 30 Minute Poetry



Saturday was a bad day. A day where I had an unexpected and very sudden flare that left me vague, slurring and having to be carried into the house. That stole my words. The frustration that the words which are my world, that have always been my word are so distant and so hard to access. Even today four days later I am struggling. It's a deep mental exhaustion, on top of the physical. I can feel it in my bones, in the very fibres of my body and spirit. I know it'll end. That I'll come around again. Just the post flare lag is longer now. Everything is slowed, my muscles, my brain, my recovery. A snails pace to taunt my impatient self.



I'm losing my words again.
Every time I have a flare.
Something in my brain goes silent.
Or dies.
Underfed. Partially fed.
Another brain cell lost to poor blood flow.
And exhaustion.
Bone weary exhaustion.


I know where they are stored.
I can visualise it still.
But I can't recall the name
that part of the brain that stores them.
Vague images of pathways 
I drew in postgrad float before me.
But there is no clarity to the image.
No meaning.
No understanding.


I have held it in my hands.
I can close my eyes and clearly remember
tracing the sulci with my gloved finger.
The feel and weight of the plasticised brain.
The smell of the preservatives in the anatomy lab.
The muffled silence of the room.


A real brain.
Donated.
Honoured and respected.
A gift.
A miracle and mystery.
A tangible aid to the acquiring of knowledge.
That was once so familiar.
But the specifics are lost again.
I can see it.
I can feel it.
But I cannot name it.


I see the words before me.
Indistinct and shimmering.
And on the edges of my vision
Swirling and darting.
Try to focus and they move
taking up residence in the distance
 or on the periphery once more.
Like water, they trickle through the fingers of understanding.
And I am left at a loss yet again.


I know what I want to say.
But I can't follow my own train of thought.
I know the phrase but it is jumbled.
Bits replaced by words that sound the same.
That create the same shape on the page.
But are meaningless in the context.


I talk around the word.
Around the thought.
I gesture and I hesitate.
I slur and I um.
Thing, the thing.
You know the thing.
The description of the word compromised
by the very lack of words to describe.
Pauses. Hesitation. Silence and confusion.
Work. It's hard work.
The expenditure exhausting.


Words trickle slowly.
By the time the sentence is formed it's initial intent is lost.
The sentences and thoughts that came before, also lost
To a mind unable to focus.


The thoughts form.
Slowly swirling.
Almost coalescing only to dissolve before me.
A fog of curves, straight lines and sharp corners.
Letters rotating, morphing, joining
and breaking apart.


A word, a sound,
the interruption of competing thoughts,
or bodily processes.
The least shiniest of objects
and
the moment of coherence is lost as if it never existed.
The time from thought to word,
spoken or written.
A second,
a minute,
it is all too much.


And the words are lost.


Words which are me.
Words which are my link to the world.
The vague hope that they'll return.
That despite everything
I'll be able to transfer my mind to the page.


Once more.


That concentration will return.
That organisation will return.
That I will return.


I will see me.
I will write me.
I will read me.
I will share me.
I will be me.
I will.

Michelle

I've written about persistent communication difficulties before in Speak Words Hard But the poem above is more a description of the experience of losing the words in the recovery phase after a flare.