Severely Affected does not mean you have Severe ME, this is so important. Severe ME is serious multi-system dysfunction. In our two decades of experience, we have never known anyone recover, or go from Severe to Moderate.
We are greatly concerned about an increasing number of stories claiming "recovery, which, to us, have more to with poor definition and criteria used, rather than the unlikely reality of profound physical dysfunction getting better, for no reason.
This poem, written by Linda, who has Very Severe ME, confronts, head-on, the pernicious, dangerous notion that "if only" they are brave enough, think the right thoughts, have enough will power, are positive enough, a Severe ME patient, with the help of a therapist, will "get well".
I cannot deny my physical reality,
The severe and serious nature of my illness,
Just because others
who do not experience it themselves,
can so easily and wrongly do, for me.
I cannot deny the total constant multi- layered all over pain,
The repeated tormenting crushing paralysis,
The uncontrollable shaking muscle spasms,
The stroke like episodes,
The inability to digest carbohydrate,
The difficulties with swallowing,
The muscle dysfunction
The painful photophobia
The profound noise sensitivity
The hypersensitivity to physical touch
The severe cognitive dysfunction
Because they dominate
of my existence.
Severe ME has so totally impacted my body on every level
Such that it totally incapacitates me
and paralyses me at whim,
not at my bidding,
creating moment by moment
of unpredictable torment.
Totally damaged for over twenty years,
I have learned what is true,
what is possible,
what is variable,
what is impossible,
What is bearable
And what is intolerable
Yet borne anyway
What is violating,
What is true
And no matter how hard I try to think thoughts
That will raise me above my incapacity
That will push through my invisible, multi- level disability,
That will make me feel better
That will enable me to do more
That will vanquish this neurological disease
from my body once and for all
I know within my whole being that this is not possible,
Not because I am too negative
Not because I am too weak willed
Not because I am not trying hard enough
And certainly not because I am afraid to try
Or happy as I am, thank you very much,
Or a lazy shirker
Or a fraudster
Or a liar,
But because there is something fundamentally broken
and not functioning in me
on many levels.
Multi-system dysfunction means just that
It does not mean:
"oh dear, I have been thinking the wrong thoughts to get well"
"oh dear,I am so depressed I cannot face life.
"oh dear,I must think positive thoughts to ignore my reality
"oh dear, I let my body get flabby and lazy from deconditioning"
"I have to trick my mind and body into working by pretending to be well"
When, blow me down, it simply is not true!
No, I know how to be positive, believe me.
I know how to hold on to hope when no hope is there at all,
When you don't know even if you are going to die
because no one can help you
And no one knows.
I know how to grasp for a better moment, believe me.
I know how to be in indescribable agony for decades ,actually, with no drugs to touch it.
I know how to survive the torture of noise, shutting my muscles down repeatedly, day after day after interminable day, screaming round my head for hours on end.
I know what it feels like to be violated by the horrendous sound and vibration of noise, repeatedly for years on end and be unable to escape, but have to endure it's torture.
I know how to live in blank spaces where no thought is possible, no movement possible, no nice distractions with books or the telephone or films or friends or comfort food to sustain the dullest hours and years of life, no conversation possible, no comprehension possible, no function possible at all.
I know how to keep going every day, to try and break the paralysis that straight- jackets me as soon as I wake
I know how to live with the unbearable pain that pressure and physical contact bring
I know how to cope with my body shaking continuously for hours on end again and again with no drugs, no understanding, no support,no respect, no help.
I know how to live in silence from necessity to survive.
I know how to live with no visitors,no social chit chat, no physical interaction with the outside world,
No family gatherings, no celebrations possible, everything completely and utterly out of reach of physical connection.
I know how to keep living, keep hoping in goodness
Even when I have been harmed
by medical professionals,
deliberately ignorant people,
people who have lied to me,
people who have misled me,
people who have betrayed me and let me down,
people who have used me.
I have survived all this and more, for over two decades
And I AM STILL HERE!
How positive is that!
I do not need therapists or courses
To tell me how to think and feel and act,
to tell me what to ignore and what to do
Or to patronise me
Or to misinterpret or mistreat me
Or to encourage me to deny my illness.
What I need is a proper clinical service,
One that supports me
One that investigates me
One that gives physiological explanation,
One that offers treatment pathways,
One the does not deny or neglect or misrepresent me,
One that makes safe recommendations
One that understands that I cannot interact normally
One that recognises my needs
And provides for them respectfully and honestly
With pretence I will get well for no reason
With no abandonment
With no acknowledgment of my symptoms and their underlying causes
And no pretence that there is nothing wrong
And says that I do not need medical or clinical input
And does not abandon me
Or harm me.
How positively thought through that would be,
If Cognitive Behaviour therapy was actually applied
Not to the people with ME
But to the fatigue services
And the negators
And the psychosocial therapists
and forced them,instead, to change
and fundamental principles
To finally see and acknowledge the truth
That they are wrong
What positive thinking that would be!
To get them to admit
that they are the ones
with the wrong thought
In their head
It is simply their wrong understanding
And misperception of us,