I want you to think
of the worst illness
you have ever had
Remember how dreadfully ill
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
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
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 on the radio 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,
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
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,
day after day
night after night
week after week.
month after month
year after year
decade after decade
Imagine this surreal
becoming your whole life
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
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.
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.
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.
Linda Crowhurst 11th May 2010