My New Year Wish

Indescribably ill
Body unable to move
Feeling disappeared from so many parts of myself:
My hands, 
my feet, 
my side, 
my arm, 
my legs, 
my lips,
my face.
Yet pain, fine and constant 
continues to bite at me and burn me
To throb and scream and resound within me.
My life is tediously slow 
and empty 
Of virtually everything
And everyone.
I long for interaction
For movement
For fun
For creativity
For thought,
For conversation,
For ability,
Yet the slightest contact
The slightest engagement 
Has a price to pay
The interaction overloading all my senses
My brain broken inside somewhere
Cannot process
cannot comprehend 
cannot interpret 
cannot tolerate 
No sound is safe
No touch is safe
No light is safe
No chemical or perfume is safe
No engagement is safe
No movement near or past me is safe
Or predictable
Or bearable
Most of the time
On so many levels.
I want so much
But really they are simple things
Things that others take for granted
To cut my own food
To eat
A piece of cheese
A cream cake
A pie , either savoury or sweet with lashings of cream or ice cream
A sandwich
A piece of toast
A pile of chips
A glass of whisky
To play a game of chess or back gammon or even snap
To kiss, purely, simply, easily, totally
To receive a touch that could be borne, 
pain free 
and fully experienced and felt
To have a cuddle that would not make me flinch
Clothes that I fancy wearing just for fun
To dress up
To relax
To play
Clothes that would suit me
Clothes that are sexy, not just comfortable
Clothes in any old fabric
With any old material
In any old colour
With any old dye
To walk down the road
To write a letter by hand
And to post my own letter
To talk on the phone
To listen and hear 
and respond 
and just chat
Or support
Or laugh with another
To play my guitar
( I have long forgotten how)
To write a song
Even to have the energy 
and the breath 
to sing a song
Accompanied by music
To go out to a pub
Or to see a play 
Or go for a meal
Even a coffee out would do
To lie down without intensifying the pain
To rest my head anywhere at all
To swim
To dance
To walk on the beach
To paddle
To not be harmed by the slightest noise
To be able to lie down when I wanted or needed to
To be able to sit up when I wanted or needed to
To feel my hands and feet
To feel my face,my lips, my eyes
To have normal sensation
To feel safe eating
Without risk of choking 
or food getting terrifyingly stuck in my throat
To hold things big and small
To coordinate thought and action
To be free from all the multi- layers of total pain
To read books again
To write when I wanted to
To comprehend directions and information
To remember each day what I did
To remember names of people and things
To sort things out
To tidy my papers
To sit in a room with a person and understand two-.way conversation
To bear to have visitors
To tolerate perfume in any form
To eat curry and drink beer
To focus
To move freely
To be myself
To visit people
To cope with a dog barking
So I could have a dog
To eat meals with my husband without the noise torturing me
To be able to sit in my garden 
To get the fresh air whenever I felt like it
To to sleep at a normal time
To see my Mum
To go to weddings, funerals, family meals and celebrations
To go on holiday
To run on the beach
To do cartwheels
To play badminton
To cycle
To choose what to do whenever.......... 
All this is lost to me
Is a separation from the world
And everything in it
Is a loss
And a sadness
A continuing repeated loss
And all these things would harm me as I am
Incomprehensible to many
The experience of ME is bewildering
But when you get to the stage of Very Severe ME
Nothing normal is possible 
And all life is altered
And no relationships can remain the same
Without being lost or touched or changed or diminished
Or transformed.
And describing your reality becomes impossible
Because there are no words to describe
The suffering, the neglect, the ignorance, the harm and the hurt done.
What then is my New Year Wish?
It would be for comfort
For healing
For hope to be restored
For justice
For biomedical awareness and integrity
For a Biomedical consultant
For a proper medical pathway for ME
For  psychiatry to be shamed for its abuse and kicked out of ME
For paralysis to be recognised and investigated thoroughly
Then treated
For medical respect
For services that reflected true understanding 
and offered real medical support
For seating and bedding that gave me support and comfort
And eased my pain
For better protection from jets and the environment
For genuine friendship
For true understanding
And most of all for noise to no longer torture and paralyse me
And my brain to work properly so I can think and talk and interact again.
Three years ago it feels like
 I fell off a cliff into a hole so huge and vast and wide there was no way out
Just a massive void, a life, devoid of people and being
Where even my beloved husband could not help me
I became so tortured by the world.
I would like to say there was medical understanding
Support, investigation, comprehension and a plan to help me.
I would like to say it, but it would not be so
Because it was people who pushed me there, even well meaning people,
Then left me there
Distressed, violated, betrayed, rejected, defiled and in agony.
I wish so much more than the nothing that there is
For people like me
And I wish that there was accountability
And responsibility
For all the wrong things that have happened to me.
Most of all I would just like some peace and ease in my life
Some genuine ease
Some sleep that restored me
Some moments of rest
Some hope I could get well
So that my 21 year old married life
Could really begin
As it was meant to be.
Until then
I will continue to shake and paralyse repeatedly
At the slightest noise
For ever more
Without any consultant at all
And no way of accessing one
And anyway there does not appear to be any interested,
who might have a clue what to do to help me
And no
I don't need a psychiatrist!


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