This was written in 2018 on national poetry day:
Have you heard the news about
This thing called FND?
Functional neurological disorder
It was a mystery to me
Until, about a year ago
When they said "that's why you can't see"
For several years before that
I'd been told I had MS
But this was changed to FND
After a huge series of tests
The neurologist said it was good news
Though really quite complex
Questions, I had many:
So what is FND?
How is it affecting me?
What help might there be?
Will I see again properly?
Could I regain mobility?
Sadly, answers were few
It seemed no one really knew
More research was due
But there's a funding queue
Go online and pursue
Your own research on you
So that was what I did
Read all there was to find
Papers, presentations
Wasn't easy being blind
But what else could I do
Needed to understand my mind
And that is where it is
This thing called FND
A disruption in the brain
On that everyone agrees
The wiring's gone wrong
Though no one's sure why that would be
Neuro signals get confused
Some stop, others go insane
My eyes see, but brain is blind
Nerves don't feel, but brain feels pain
Legs can move, but brain just won't
Intellect is there, but brain is slain
So what is there to do?
A few therapy's exist
But within a few months
I'd been to every on the list
And all of them agreed
Nowt to do, I was dismissed
So back I went online
I found "FND hope"
A small charity, growing
To meet the massive scope
There I found advice on
How to live, more than cope
Thousands of people
Just like me
Suffering each day
Often invisibly
Determined to improve
How life will be
Being part of the FND
Online community
Gives hope and understanding
It's inspiring me
To live and be
The best I can be
I must balance
My energy
I must try to
Think positively
I must keep remembering
I'm still me
I hope this little poem
About living with FND
Will raise more awareness
About its complexity
And maybe raise some funds
Research needs money!!
You can find out more about FND at FND Hope UK