• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer

PrettyIll

Header Right

Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

  • Home
  • The Driscoll Theory®
  • Videos
  • Meet Dr. Diana
  • Forum
  • Store

Reply To: "Free ME" poetry

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Spoonie Art Contest! › "Free ME" poetry › Reply To: "Free ME" poetry

September 27, 2013 at 10:12 am #4429
allyb
Participant

I wrote this in the early days when I was struggling to make sense my new reality; difficulty standing and sitting upright and the appalling response of the medical profession.
Someone asked which symptom I hated the most………..

Maybe you’ve hit a raw nerve or caught me on a bad night; on reflection, I hate most of the symptoms in equal measure

I hate the burning sensation that I get in my head,
Mitochondria malfunction; I’m stuck in my bed.
I hate staying home when I need things from town,
My heart rate goes up and blood pressure down.
I have difficulty travelling; I can’t sit for long,
My muscles are weak when they used to be strong.
I hate being sedentary, so inactive and slow,
When I used to have energy; always on-the-go.
I endure twitching muscles and migratory pain,
I hate my blood pooling, the effects on my brain.
I lose clarity of thought and it slows my cognition,
Causing muddled up sentences and word repetition.
I hate all this resting and having to ‘pace’
I’m just as fatigued and I can’t win a race.
I still have my humour; though it’s just not as fast
And I hate my ‘quick wit’ is a thing of the past.
This list is not exhaustive of the things that I hate
But now I’m exhausted; a familiar trait.

Part two: There are the secondary symptoms that I hate just as much

The symptoms are real but the medics don’t look,
“It’s all in my head” and it’s not in their book.
I can have CBT for “false illness beliefs”
My self-respect robbed by the dignity thieves.
The pain of my loved ones; from the havoc it wreaks,
The way we are silenced and made to look freaks.
We have no famous patron, to champion our plight,
Every day is a battle; we must keep up the fight.

If I had to choose one; as my list is not small,
I hate the injustice we face most of all.

Footer

PrettyIll.com

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

Twitter: @prettyill

What others say

“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

Listings by topic

  • Chronic Fatigue
  • Consult
  • Contact
  • Coping
  • Ehlers-Danlos
  • Fibromyalgia
  • Hydrocephalus
  • Mast Cell Disease
  • Multiple Sclerosis
  • Orthopedic Issues
  • Pain Control
  • POTS
  • Speaking Engagements
  • Store
  • Uncategorized
  • Vascular abnormalities

This work may not be reproduced, copied or used in anyway without the express permission of the author -- that's me © Dr. Diana Driscoll 2020