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.


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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx