My life was built on uncertainty
Not knowing when or where my abuse would be
Would he be in when I opened the door
Waiting for a kiss hello and more?
Would it be mum who tucked me in bed
Or would it be he who uncovered me instead?
Would I be groped as I stood by the fire?
Would he admit it the bloody liar?
Would he barge in when I took a bath?
Would he sweep it away with his sick fake laugh?
How many times at me would they shout?
Would I ever with my friends be allowed to go out?
Would I be banished to my room today
Waiting for him to have his sick gross way?
When would I ever escape that hell?
For years and years I couldn’t tell.
I moved away and for a while
Life was great, I had a smile.
That’s when the pains began
But the quack I saw didn’t give a damn
First my legs, hands then energy
But he didn’t try to find what was wrong with me
So I was left with uncertainty once again
With uncertainty and the aches and pains
And when I met the man of my dreams
There was uncertainty there so it seems
For two years we did not know
When he would die, I loved him so
Not knowing how I would carry on
Caring for him or when he’d gone
I tried to pick myself up again
But couldn’t shake the aches and pains
They are still getting worse I can see
And nobody understands what’s wrong with me
Will I get better or will I get worse
Will I ever shake this god awful curse
Will I ever love my home again
Or will this struggling drive me insane
Now I’m being told ‘I do not know’
When or if into rehab I will go.
Living with uncertainty for so many years
Is what finally brought me down to tears.
My life’s still built on uncertainty
And not knowing is what is wrecking me
If I was dissociating it’s clear I vow
I’d be dissociating from this hell I’m living now!

This poem was written 7 years ago not long after my condition was diagnosed. Although my health has continued to deteriorate, I am now wheelchair bound, double incontinent and have regular spasms and seizures among other things. I have not let it hinder my need to live a normal independent life.

I began by helping a disability charity with a large mail out, they were so impressed they asked me to help with other things, this boosted my confidence so much I now am vice chair of the charity, I have also become a trained support broker and advocate. I have picked up my love of teaching by designing a disability awareness programme for schools and have trained a group of mixed disability adults to come into the schools to deliver the training to the pupils and teachers.

Volunteering with the charity also gave me confidence to volunteer for the borough during both the 2012 Olympics and the rugby world cup. It has given me the opportunity to visit parliament and meet many high status officials. I love to swim and play archery in my spare time… the little I have!

Life may not be what I planned or hoped for but where there is a will there is always a way. No one way is the only right way. Thinking outside the box is often the best way.