This illness inside of me
What can I say that will express this illness inside of me,
so huge it overwhelms all of me onevery level?
What can I say to make it all right again?
How can I find a pathway to restore me?
Is it even possible?
I am too blank in the head
Too empty of thought
Too weak in my hands
Too uncoordinated in my movement
Too cut off from my motor control
Too dark in my vision
Too uncontrolled in my eye muscles
To look at a page
And hold a pen
And think anything coherent
Or discerning enough
Then write word after word in a straight line on a page
I am too breathless from my swollen stomach pushing against my diaphragm
Too physically numb
In too much pain in too many parts of me
No part untouched within or without me
I am too exhausted and cognitively impaired to answer my own question
To find the thoughts that might give me some glimmer of hope
Too unable to process the information I need to understand my own body
I am too nauseated by chemicals and perfumes
Too irritated and trembling from noise vibration
Too shaken by muscle spasms from head to foot
Too swollen and inflamed
Too at risk of instant and total paralysis
Even to bear the sound of a scratching pen on a piece of paper
Because noise is a danger and a harm to me
That can complexly incapacitate me for hours on end
Leaving me numb and my muscles screaming and collapsing in immovable agony
Then leave me weeping, overheating, freezing, shaking, irritated, fuzzy headed, weakened, thoughtless
Still unable to do anything at all
My whole life a dance between total paralysis and almost complete inability to function
In any normal, accepted, understood way, sitting hunched over, immobile
Or staring into space
Lying flat and unable to communicate
Tortured by normal reality
Persecuted by people living ordinary lives
In my vicinity.
This is no way to live
Of that I am certain.
The torment is indescribable
Moment to moment
With the addition of constant pain on multi- levels
And sensations few would know
Or begin to believe possible
Flowing all over my body
Muscles screeching, body burning, itching and irritated
Feeling as if it is expanding and contracting
Disappearing and assaulting me.
Yet this is my life.
This is me
Having to live in it and through it and deal with it relentlessly
No clear explanations
No adequate investigations
No safe medical pathway to follow
No security of reliable specialists supporting, investigating, monitoring, reassuring, treating, explaining, understanding me.
Except a GP
And a loving husband
Who do not know
What to do.