August 8: SEVERE ME, YOUR WORSE NIGHTMARE

 

SEVERE ME, YOUR WORSE NIGHTMARE

I want you to think

of the worst illness

you have ever had

Remember how dreadfully ill

you felt

How everything you normally did

suddenly became totally unmanageable

Perhaps your head hurt so bad

that you had to lay in bed all day to cope

Perhaps you felt or were utterly sick

and food made you feel even worse

Perhaps you were dizzy, off balance

and disorientated

so that you had to sit or lie down

or fall over

Perhaps you had an operation and

felt weak, groggy and sore.

You must have felt out of synch with the world

and unable to participate in it

like you normally would

Now I want you to add pain

Pain that spreads all over your body

Not just one sort of pain

but pain that throbs ,

pain that burns, pain that itches

and screams at you

pain that crawls up your skin

and invades every millimetre of your body:

Your nose, your eyebrows,

your eyeballs,your ears, your scalp,

your neck, your front,

your back,your toes,

even the soles of your feet

Everything expanding and

contracting in agony

Now look inwards

and you find your stomach hurts,

your intestines throb,

your diaphragm aches,

your muscles burn

with exquisite pain

like you have never known before

Now imagine that this

unbearable, intollerable,

never ending pain

that you simply dont know

how to tolerate

Gets worse everytime you

sit or lie down

and intensifies even more so that when,

if ever ,

you actually manage to get to sleep

you waken up in even more

tormenting pain than

you were in before

And this is only the

beginning of your nightmare.

Now I want you to imagine the world has

suddenly got incredibly loud and everything

is irritating to your ears.

Noise sends piercing pain into your head

and the vibrations echo round your whole body

exacerbating every inch of pain to a crescendo

A whisper sounds like a shout

Banging in the street turns your head

into a drum

Music which you previously loved

suddenly becomes a torrent of cascading irritation

Voices suddenly become

an assault of indefinable words and sounds

The picture moving on the tv screen becomes

a piercing blur that tears at your eyes

and pierces your mind

You cannot follow the plot

You cannot understand what is going on.

Incoming information jams in your head

You are left in a bewildering fuddle

Your thoughts disappear and your mind

becomes an empty blank

The phone rings and you put your head

in a cushion to stop the noise

And now you begin to realize that

you are being tortured by normality

Think what it is like to discover

that people make you feel very ill.

Their very presence, their noise,

their movements,their conversation,

their perfume,

even their touch, makes you feel

worse and worse and worse

so that you cannot bear to see people,

you cannot talk to them,

you cannot answer their questions

You cannot even speak on the phone

to them or hold a pen to write a letter.

Think what it is like to then discover

that on top of all this

you are light sensitive.

Even dim light hurts your eyes.

Suddenly you have to live in darkened room,

wear sun glasses in winter

Cover your head with a cloth

to avoid over stimulation

and to your dismay you find that your muscles

have mysteriously ceased to function

Your hands wont hold anything

Your legs wont work

Sometimes your eyes wont open and you cannot speak

You cannot eat without help

You have not got the energy to chew your food

Swallowing has become difficult

and dangerous as food gets stuck

You have become strangely sensitive

to most foods and only a

strict diet is possible

and very very dull..

Working has become totally impossible

You cannot do the basic things

you need to do to get through the day

You cannot get to the toilet unaided

You cannot cook your food

You cannot wash and iron your

clothes or clean the house or

use the hoover

or mow your lawn or answer

the door or post a letter.

All the things you take for

granted simply disappear from reach.

You cannot even walk.

And your worse nightmare

has come true too

Every time you sleep - and you find

this is sometimes two or three times a day-

you wake up completely and absolutely totally

Paralyzed.

Conscious

Yet unable to speak or call for help

You have to lie and wait in a

numb body that cannot move,

Tormented by intense pain and

extreme pins and needles

you wait till finally help comes

But even then you cannot bear

to be touched or moved.

You are helpless to the

power of this paralysis

till it releases you slowly

from its clutches.

Imagine all this happening to you

not once or twice or even for a few days,

but continuously

day after day

night after night

week after week.

month after month

year after year

decade after decade

Imagine this surreal

life suddenly

becoming your whole life

without relent

Then discover that

this is not like any other illness

where you are treated with respect

provided with a knowledgeable consultant

Given proper biomedical tests

and offered treatments

based on the results.

And your GP actually

believes you are physically ill

Not so in this illness.

Nothing is given.

Nothing is as it should be.

Everything is different.

Now you find that you are on your own.

Most people and especially

professional people,

but also your friends and family

who should love and care for you

Simply don't believe you.

Cannot understand you.

Give up trying

Blame you for being ill

Get angry and persecute

or reject you

Simply fade away.

This is now your ongoing reality.

Severe illness.

Complete Isolation.

Neglect.

Poverty.

Torment.

Denial.

No biomedical treatment.

No proper testing.

Difficulty getting aids

and equipment to help.

Difficulty accessing services

and benefits you are entitled to.

Difficulty communicating your needs.

Living on the edge of society.

Abandoned by people.

No hope and little understanding.

The future is dim..

Think how this feels.

Remember what I have said.

Then do something about it,

Change my reality.

Speak up for ME.

Reach out to those in need.

Understand their illness.

Understand the

true horror of their experience.

Stand in solidarity with them.

Make things change for the better.

and make it happen today.

Speak up for ME.

Remember ME.

(Words by Linda Crowhurst)