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.