ME: Your Worse Nightmare

ME : Your Worse Nightmare

(for ME Awareness Week 2010)

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 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,
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.
Invest in ME.
Remember ME.

Linda Crowhurst 11th May 2010

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