Poems about Severe ME

Contents :

a photo of Linda, head in her armsDespair
Despair stalks my days
The true horror of my situation 
is invisible to most
The nightmare of my physical existence 
is masked from view
If you see me you will not see 
the terrible depth of pain and illness
wrecking havoc on my body
You will not understand
the tormenting impact your very presence has
on my body
You will think that my life
is as bad as I say
For you will not have seen
the endless hours I lie 
alone,
paralysed,
burning,
tingling,
throbbing,
immobile
and voiceless.
You will not know
how empty
my days are
You will think
comnunication is not a problem for me
because I sometimes say Hallo
You will not know
I cannot bear
The sound of your voice
You will not know
I cannot engage
in two-way conversation
because my head is blank
that I cannot understand questions
or retrieve the information
required for dialogue
nor follow your detailed descriptions
You will not understand
that your perfume is making me sick
and giving me a headache
that your mobile phone ring tone
is hurting my head
and battering my body
with its innane tune and loudness
You will not see me
return to bed
in a throb of agony
or see my body
falling into disuse
as the muscles lose
all ability to move
nor see me staring
into space
completely unable to focus my eyes
to read
to write
to talk
to listen
to the TV
the radio
to music
to anyone at all
You will not have a clue
why you fill me
with despair.

15/07/11




 	
	
a stick picture of a person with ME being tormented by swirls and arrowsDancing
Everything is dancing around me
And I feel stretched beyond my limits
by endless opportunities
and endless lurking pitfalls
My mind tries to catch hold
of each thought as it flies by
The world seems so busy
Even here in this quiet hamlet
Beside my stagnant pain-seared life
People whirl about
Creating changes beyond my control
Persecuting me by their ignorant actions
That assault my senses
And disturb my limited order
Decision making seems utterly beyond my whirling head,
As I try to remain still in my sea of fog
Punctuated by bright movement
That struts and stabs and twirls
And leaves me in a fuddle of anxiety
Not knowing what to do
to minimise the damage
And make my own straight path
Through the centre of what seems like 
deteriorating chaos
to a malfunctioning mind
and a tormented body
longing for peace
and clear sight.
a stick picture of a person with ME being attacked by denial etcME Attack
I do not want my ME to define me
So I try to define it
to clarify it
to demystify it
to explain it
so others understand
the intensity, complexity and 
torment of symptoms I experience
so I can be free from it
Despite being trapped in it
It is hard enough to bear the constant
torment of symptoms,
the never-ending
physical suffering
Yet harder still to bear
is the ignorance, the denial,
the downplaying of it all,
the almost complete lack of empathy
from others
The complete lack of understanding
of people , professionals, systems,
that negate and fail me
because they simply do not
comprehend my reality..even still,
17 years on.
Linda Crowhurst 28th March 2011
a pen portrait by LindaFriday afternoon
I am screaming
My body is screaming
at me.
Throbbing intolerably
many sensations assault
my sense of time and
place.
My body is expanding
and contracting on some
unseen invisible level
invisible to the world
Totally clear to me
My vision is moving in fact
I have a sense of
motion when still
My eyes are expanding
and contracting along with
everything else
Leaving me giddy and
out of gear with reality
I cannot bear this anymore
I cannot bear this right
now
I am screaming Who will
hear ?
25th March 2011
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Linda , a self portraitUtterly Broken
The breaks in connection
are complex and many layered.
I cannot bear to look out
my eyes contract with pain
I cannot find the words
there is merely blank space
where mind should be
I cannot read any information
my eyes jump about and 
will not focus
I cannot speak on the phone
my head is overloaded
with words and noise that
make no sense
I cannot listen to the radio
the talking muddles my brain
and irritates my ears
I cannot move my limbs
my muscles are jelly
filled with throbbing pain.
I cannot listen to conversation
my mind simply cannot follow
the thread of information.
I cannot bear to be touched
my body shrinks and shakes
with the lightest contact.
there are many disconnections
between thought and action
So many persecuted moments
from trying to engage with
ordinary life
The hardest thing to bear though
is the ignorance and
deliberate manipulation of truth
so that I am left alone
isolated and screaming
in agony
tormented by everyday living
not even knowing
the reasons for my medical
malfunction
because society has shut
its ears and eyes to the truth
and carries on
a path of denial and righteous persecution
against all who are like me
trying to live in a fractured body
that is utterly broken inside.
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Linda  in painWithering
I am withering away
by small daily degrees.
I am ill, yet
I am getting more ill.
I am reduced,
diminished to sitting in a chair
unable to move or think
or lying in bed unable to sit upright,
my muscles unsupportive
and unable to comply with my intention.
I am declining
while the government and the NHS speak about
service and choice.
There is no choice here.
There is no help available on the NHS.
Instead there is ignorance, 
apathy, 
avoidance,
deliberate denial,
inability to to engage with the truth
and take appropriate action
red tape
and fobbing off,
often negating or patronizing responses
ignorant practitioners
inappropriate services
and inadequate provision.
Yet this is a serious neurological disease.
I am disappearing
physically and mentally
whilst my loved one, my husband,
 my carer, my advocate, 
my all, fights on year after year ,
 decade after decade,
against the machinations 
of despair and denial:
the psychiatric psychosocial lobby
that destroys all hope of biomedical
 truth and integrity.
When is enough enough?
When will the Truth spearhead change?
When will the lies and nonsense
being disseminated about ME,
finally be recognised
and the great psychosocial scam
of the 21st century
be exposed ?
ME is a truly devastating physical disease.
But when will I have the security of knowing it
 is being treated as such?
When will I feel safe from persecution, ignorance,
 denial and neglect?
When will the NHS pay for the proper biomedical tests 
and treatments my serious disease requires, 
as standard care?
And when will I not be marginalised 
and hidden away,
misrepresented and misunderstood,
out of sight and out of mind
in splendid isolation,
coping with deteriorating health
without the proper  support of the National Health Service
Time is surely come for a change?
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Linda paralysed and in pain10/10/10
There are so many things
to do
in the emptiness of days
and yet, what will be done
is only the possible
or maybe the easiest
and generally it is none
of these
for paralysis
pain
and  no energy
quiet all action
and leave me free
to be
and that is all

10/10/10

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Linda lying in bed, with our dog by her sideDust
Everywhere I  look is
dust
Letters pile up go
unanswered
Documents remain
unfiled
Ideas go
uncreated
Clothes lay on empty chairs impossible to
hang up
And all I can do is
look on
A by-stander in my 
own life
As nothing gets
done
And dust comes 
down
While the pain goes on
regardless

26.6.10


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Linda lying in bed, with our dog by her sideLove
I cannot express
the frustration of inability
I cannot explain
the 'why I cannot do'
All I can be
is Present
All I can seek
is Peace
All I can find 
is Hope
For the illness has taken
so much
And left me formless
in a total void
Where all I can do 
is cling to you
And find in my heart
that we are greater than this:
that Love
transcends all.

26.6.10
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a hand-written sign that say words hurt meWords Hurt Me
I try to search for adequate words
to describe my reality
and squeeze them out past the vicious
thought police
who patrol my brain fogged mind.
denying access and expression.
I scrabble around in a
grey empty world
seeking strands of colour
to obliterate the bland dull emptiness
of my head.
How to describe the indescribable?
How to convey the extreme
difficulties
in finding
anything valid
in a foggy void
that once held brilliant ideas
and excited chatter,
The stillness, much sought after
on spiritual quests
comes at a high price
Mindless, silent, emptiness
all memory and creative thought
pressed down to the edge of existance
squashed flat by the  pressure
and the pain
and the dull dull soggy
nothingness
of my demented ME brain.

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a photograph of Linda  in great painME : 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 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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a photograph of Linda  in great painOrdinary People
     Ordinary people
     doing ordinary things
     inadvertently
     drive me to 
     Distraction.
     The rustle of a paper bag
     sounds like roaring thunder
     in my head.
     A gentle touch,
     which might almost go unnoticed,
     is like a ten ton pressure
     releasing uncontrollable anger
     and irritation
     which seems unreasonable,
     seen from the outside.
     The brilliant sun
     steaming through the window
     pierces my eyes
     with agonizing pain.
     I have to shut it out
     and live in semi-darkness
     half my life
     and wear sun glasses in winter.
     My perception of the world
     is altered,
     damaged,
     diminished.
     I no longer live
     in the same world as you.
     Your world hurts me.
     Even being with you
     hurts me.
     My world has to be
     buffered by silence,
     surrendered to stillness,
     separated from yours
     to survive.

     Linda Crowhurst 1995
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a painting of Linda in great painDay after Day
   
Day after day after day
The pain assaults me
I waken into an intensity of burning,
 throbbing, itching agony of muscle pain,
I cannot escape from it or wake up from it,
My body flows with weird sensations,
Pins and needles crawl through my hands and feet
I feel as if my whole body is disintegrating
Noise hurts me
Light hurts me
I can barely speak or think
And I cannot open my eyes
Yet I am expected to wade through 
all this physical experience
And appear to have normal conversation
To be reasonable
To wait patiently
With my bladder bursting
My chest heaving with breathlessness
My muscles unable to move
I am expected to smile and 
say “hooray the day is here”
I am expected to walk, talk, sit
Eat and drink and converse deeply and interestingly
To have sharp comment and wit even
To feed the dog a continuous stream of biscuits
To reach out and be loving, to be kind, to be thoughtful, 
to be sensitive, to ask the right questions, to pray, 
to deliberate, to have new ideas, 
to deal with the unexpected,
 to tolerate the doorbell ringing, the phone, 
 the noises in the street, the dog barking,
Yet no part of me is normal
So how can I do all these normal things?
No part of me is  well, healthy, fit, capable, 
awake, alert, functional
No part of me can respond in a normal, 
reasonable, ordinary sort of way
My body is screaming at me
My mind is completely fogged
My skin is tormented
My hypersensitivity makes me irritated
My eyes are swollen and completely inadequate
Nothing responds to intention or need even
I have to wait hour upon hour
Hoping I will see through the fog
Hoping the pain will lessen
Hoping that movement will return
Hoping against hope that I will be able 
to speak calmly, rationally, kindly
Hoping more than anything that I will
 remember that you love me
That you are trying to help me
That it is my experience that is bizarre
That you are kind and gentle and utterly loving
That it is this illness that robs me
Of true experience
Of right feeling
Of reasonable response
It is only the illness that creates separation
For the truth is you love me
And I love you so much
It breaks my heart
When I see,
In tiny glimpses and lucid moments
What you have to endure
Day after day after day 
And how I have to be
Day after day after day after 
day after day after day.

Linda Crowhurst (Aug 2 2007) 
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a grey stone carving of a pigeon-like birdThe Stone Bird
   
		The stone bird sits
		silently waiting,
		staring into the middle distance.
		Its wings closed.
		It has no hope of flight.
		My own plight
		is similar perhaps.
		I lie silently waiting
		to be able to move
		to be able to talk
		to be able to function,
		in part, at least.
		My eyes stare into the middle 
		distance,
		unable to focus,  
		throbbing with a pain
		that burns my whole face.
		If I had wings
		they too would be closed,
		folded away,
		in a grief indescribable
		for the many untold losses.
		Flight would be an impossible
		dream,
		a memory of another life time
		and yet
		and yet the bird is
		beautiful.
		I love to hold it in my hands.
		Its comforting shape somehow
		eases the burden
		of pain I carry
		and in the silence
		I feel somehow,
		consoled,
		that there is more to life
		than action.
		Its simple stone hard body
		has blessed me with
		a gift
		and I am lifted
		above my own endless
		suffering
		to a place
		of love
		and comfort.
		peace and hope,
		where even stillness can have
		meaning.
		
		Linda Crowhurst 16.12 09 
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