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 

Anything

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!