Search This Blog

This illness inside of me

What can I say that will express this illness inside of me, 
so huge it overwhelms all of me on
every level?
What can I say to make it all right again?
How can I find a pathway to restore me?
Is it even possible?
I am too blank in the head
Too empty of thought
Too weak in my hands
Too uncoordinated in my movement
Too cut off from my motor control
Too dark in my vision
Too uncontrolled in my eye muscles
To look at a page
And hold a pen
And think anything coherent
Or new
Or accurate
Or discerning enough
Then write word after word in a straight line on a page
I am too breathless from my swollen stomach pushing against my diaphragm
Too physically numb
In too much pain in too many parts of me
My head
My face
My lips
My tongue
My gums
My teeth
My eyes
My eyebrows
My nose
My ears
My skin
My muscles
My legs
My calves
My thighs
My feet
My soles
My toes
My chest
My arms
My hands
My fingers
My back
My spine
My stomach
No part untouched within or without me
I am too exhausted and cognitively impaired to answer my own question
To find the thoughts that might give me some glimmer of hope
Too unable to process the information I need to understand my own body
I am too nauseated by chemicals and perfumes
Too irritated and trembling from noise vibration
Too shaken by muscle spasms from head to foot
Too swollen and inflamed
Too at risk of instant and total paralysis
Even to bear the sound of a scratching pen on a piece of paper
Because noise is a danger and a harm to me
That can complexly incapacitate me for hours on end
Leaving me numb and my muscles screaming and collapsing in immovable agony
Then leave me weeping, overheating, freezing, shaking, irritated, fuzzy headed, weakened, thoughtless
Still unable to do anything at all
My whole life a dance between total paralysis and almost complete inability to function
In any normal, accepted, understood way, sitting hunched over, immobile
Or staring into space
Lying flat and unable to communicate
Tortured by normal reality
Persecuted by people living ordinary lives
In my vicinity.
This is no way to live
Of that I am certain.
The torment is indescribable
And unimaginable
Moment to moment
Of uncertainty
And inability
With the addition of constant pain on multi- levels
And sensations few would know
Or begin to believe possible
Flowing all over my body
Skin crawling
Muscles screeching, body burning, itching and irritated
Feeling as if it is expanding and contracting
Disappearing and assaulting me.
Yet this is my life.
This is me
Having to live in it and through it and deal with it relentlessly
No rest
No clear explanations
No adequate investigations
No safe medical pathway to follow
No security of reliable specialists supporting, investigating, monitoring, reassuring, treating, explaining, understanding me.
Except a GP
And a loving husband
Who do not know

What to do.

Thirty Questions you can ask the Government

Dear Norman Lamb,

1. Please can you explain to us why Myalgic Encephalomyelitis is still not treated in the UK as a neurological disease?

2. Why there is no biomedical treatment pathway on the NHS for people with Myalgic Encephalomyelitis?

3. Why there is no accurate training programme within the NHS to make sure that all professionals from paramedics, through to nurses, orderlies and to doctors and consultants have an accurate medical picture of the disease and know how to provide safe treatment and procedures to people with ME?

4. Why is there no hospital or GP provision for the safe passage of people with ME who suffer from noise, light, chemical sensitivity and need separate waiting areas and room to lie down and require longer amounts of time for procedures and investigations and appointments due to the nature of their illness and disability ?

5. Why there is no system of reaching the house and bed bound and treating the most severely affected at home?

6. Why are there no biomedical protocols to ensure that every hospital or GP setting knows what to do and how to treat a person with ME?

7. Why are the most serious and severe symptoms simply ignored by the NHS?

8. Why is it that the information on the NHS website says that ME can be caused by psychological factors ?This is a neurological disease.

9. Why are patients not being adequately tested on the NHS to ensure that they actually have ME not chronic Lyme disease or other testable but neglected illnesses?

10. Why is it acceptable to continue to use the inappropriate umbrella term “CFS” which provides no one with ME a suitable medical service , understanding or adequate investigation of their symptoms and continues to allow inappropriate biopsychosocial pathways to prevail instead of proper medical respect and treatment?

11. Why is there no acute hospital ward for the most severely affected?

12. Why are there no emergency advice lines specifically for ME?

13. Why are GP's and hospitals and consultants allowed to choose whether they treat ME as psychiatric rather than medical illness?

14. Why are the most severely affected so shut off from accessing NHS hospital outpatient or inpatient services, they are effectively left at home without adequate medical support reliant on the understanding of GP's without adequate health care monitoring or in depth understanding of the physiology of their illness?

15. Why is psychiatry allowed to interfere, control, influence the care and ( lack of ) treatment of people with ME at all?

16. Why will the government not make a stand to protect people who currently have the inadequate diagnosis of CFS, ensuring that they are properly investigated, treated and separated from mental health treatment protocols which deny or downplay their physical illness?

17. Why are vested interests allowed to dominate ME today, leaving patients without adequate medical respect, proper recognition or understanding of their illness?

18. Why are the most severely affected left at risk of misinterpretation and psychiatric abuse still, despite the death from ME of Sophia Mirza ?

19. Why is there not a specialist team of highly medically trained specialists available to investigate and treat safely at home, the most ill, understanding the dangers of moving them from a safe environment, without risk of harm?

20. Why are all the biomedical research papers which point to numerous physiological dysfunction simply ignored by the NHS and not included in treatment protocols or testing?

21. Why is it acceptable and accepted by the government to place on indefinite hold the inappropriate and dangerous NICE guidelines, which were not deemed for for purpose since they were first published by the majority of charities and patient groups.

22. Why is there no standard of care training for carers involved with people needing help at home which have ME?

23. How is the government going to ensure with its new care standards that the correct medical information is given to carers concerning Myalgic Encephalomyelitis as opposed to chronic fatigue, to ensure appropriate needs are met? ME is not like any other illness in that anything can have a potentially deteriorative impact. The level of carer training needs to be extremely high to safe guard the most severely affected.

24. While the NHS wrongly continues to push a psychosocial agenda onto patients with ME, what hope is there that there will be any safe consistency of carer training that actually recognises ME as a neurological disease with acute hypersensitivity to environment and post- exertional responses,needing highly sensitive and understanding staff to avoid risk of more deterioration?

25. Why is there is no current consistency of information ? The NHS pathway is unsafe and the description of ME, incorporated into CFS factually inaccurate.

26. Why will the NHS and the government not adopt safe criteria ? Currently the ICC is best, because it proactively recommends safe separation of ME from CFS and more accurately identifies the most severely affected.

27. Why is there a false pretence that people with ME will get better with no medical input.

28. Why will the government not stand behind patients to stop the negation and neglect of ME,by creating a new , medically separated pathway with no inappropriate collusion or involvement with psychiatry?

29. Will the government make a commitment to stop the abuse and neglect, the misinterpretation and misrepresentation of ME as psychological, and the mistreatment , particularly of the most seriously ill patients?

30. Can you explain Norman Lamb why,under your watch, the NHS is treating ME as Bodily Distress Syndrome and offering a flagrantly dangerous pathway to people denying their physical illness in the name of “love”, in Barnet?

Yours sincerely,

(Your Name)

Now post to Norman Lamb :

ME Awareness Week 2014

Good luck, prayers and love to us all this week !

I cannot begin to convey

I cannot even articulate my distress
About the neglect
The denial
The mistreatment and the abandonment
That I feel
About my illness.
I cannot even explain
The seriousness of this disease
The severity
The torment
The agony in every moment
I experience
I cannot even express 
What it is like to not know what to do to heal myself
The uncertainty
The lack of investigation
The lack of understanding 
The danger that puts
my health in
Every moment of every day
I cannot begin to convey
The horrendous physical experience
Of being continually pushed into deep 
Total paralysis
By the slightest wrong noise 
Not just once or twice
But continually every day
I cannot describe
The feeling that overwhelms me
When my muscles lose solidity
Stop working
Stop holding me 
Stop moving me
Stop feeling
Intensify their pain
Become flaccid and cold
Numbing my body and my thoughts with them
I cannot seem to get anyone to truly comprehend
What that might be like
Like crashing on a roller coaster
Like falling endlessly off a cliff
Like diving in to empty nothing
Like being dragged through concrete
Like nothing anyone could have ever experienced normally
I cannot seem to convey
How very seriously ill I actually am
So ill that a knife on a plate 
Or even a single question wrongly timed,
spoken too loud
Can impale me to my seat
That my head will be full of burning hot knives
That my eyes will not open or will stare in paralysis
That my mind will lose comprehension
That my nervous system will jangle in utter confusion
That I will be paralysed and helpless for hours on end
And not even be able to speak or ask for help or bear to be touched anyway
I just cannot seem to get anyone to really understand
How broken my body is 
from the inside out
And how unacceptable it is
That no one
Can tell me
What is wrong
And not enough
Has been done
To find out
And now
I am too ill
To go anywhere
To see anyone who might help
Or remember the detail of things
Or cope with two way conversation
Or physical examination
Or testing and scans
Because I have been
So damaged
By trying to get answers
And help
That harmed me
And so deteriorated by environmental noise
That every ordinary thing can now literally be a torture to me
And that
Is probably
the most tragic thing
Of all.