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I Have Learned What is True.

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 
every moment 
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 damaged 
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,
ignorant people,
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
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 
their attitudes 
and fundamental principles 
To finally see and acknowledge the truth
That they are wrong
And dangerous
And misinformed.
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,

N = infinity.

The noise assaults me:

Either a shocking fast deterioration,
Into instant total or left sided paralysis
Torn from the previous moments ability to move or talk,
Blind sided by an unexpected bang, a clang of cutlery
Or a screeching jet flying over,
Or else the noise, more constant but invading nevertheless,
simply torments me without a break,
Till the paralysis
Slowly and silently creeps into my already numb hand
Then down my arm
As it simultaneously slithers
Into my feet,
Then up my legs,
My back
Into my face,
My mouth,
My eyeballs,
My throat.
Even my tongue prickles,
With one-sided numbness.
It cuts my senses in half, instantly
As it grabs the left side of me
Seemingly marking out its own invisible line
Discerned internally by an increased prickling pain
And a bizarre, opposite, emptying
of feeling, thought and movement
As if a line has been drawn
Inside my brain
By an invisible hand
Slicing off contact and sensation,
Determining where the line will fall
All the way down my body.
To say that it is horrific,
Intolerable, unbearable, exhausting, tiresome, distressing,
Boring, numbing, destructive, fragmenting, tormenting, terrible,
To be continually assaulted on a daily basis
Then stolen away from all ability, thought and feeling
Repeatedly, each time the impact deepening the effect,
Is simply to under-describe
The reality
By the power of n

Where n = infinity

I have never felt in such a minority position.

For us,  the UK Election is a matter of life and death ! Watching the Party Leader's debate recently, I have never felt in such a minority position. 

As the Guardian reports today : "  The Centre for Welfare Reform calculates that, under this coalition, those with severe disabilities have taken a financial hit 19 times greater than the average." Yet NONE of the Party Leaders even mentioned the disabled, those on welfare: apart from a throw away comment from the Green Party right at the end of the debate.

So, desperate to make our vote count, I looked up our local Green Party online. It was a shocking experience. There was a single blog post from the prospective MP and that was about bird life and insects. Their Facebook page is lifeless and  about the only activism on offer was an invitation to join a Singing Group. I wrote an impassioned email.

I got a response, denying there is an issue.

The future under Conservative or Labour,  offers little hope to the 
disabled ! The punitive,  sanctions regime is to  continue. The message is clear, if you are not "in work" , you are not worth even a mention.

I am so fired up ! I wrote this song recently :

In the institutionlised corruption
that makes MPs rich
in the selling of the NHS
to private companies
in the destruction
of society up and down the land

Maggie goes on

In the transfer of our wealth

from the poor to the few
in the punitive unemployment
and draconian welfare state
in the growing crimes of hate
against the sick the poor the ill

Maggie goes on

In the eviction of the blind and lame

and those who will lose their home
in the children and the families who tonight
will go without a meal
in those wrongly deemed fit for work
who will lose their appeal

Maggie goes on

In the fat cats and bankers

the ones for whose sins we pay
in the corporate power and greed
that crushes us beneath its heel
in the social and political vandalism
the party neo-liberal anthem

Maggie goes on

We the oppressed will never rest until we get rid of CFS

( warning :  loud, with a heavy beat.)

Psychiatric lies and deceit
a made-up story to suit the money man
talk about pain
we've got a ringside seat
here I am fighting for you
on the street.

I'm flying blind baby
looking for the truth
but there is none of that
to be found
it was declined 
when they defined CFS
and left ME far behind

They say your suffering
is just a state of mind
that you cannot be
in your right mind
now they've got us all confined here
stitched-up tight
like a roller blind

Some days I just don't know 
how much more
of this I can take
some days it feels like
everything is starting to break
that whatever I do
is a mistake
I don't know how to apply
the parking break

"You are a neurotic
go on" the doctors say
"get out of our way,
ME  is just a somatoform,

We have to live in a new way
we have learned that there is
no quick fix
they are trying to bury
ME under a pile of bricks
but we the oppressed
will never rest
until we get rid of CFS

A society that has lost all moral compass.

There is a fantastic article in the Guardian today exposing a society that has " lost all moral compass". The 2015 budget, for example, includes plans to provide online cognitive behavioural therapy to 40,000 claimants and people on the Fit for Work programme, as well as putting therapists in more than 350 job centres;
Supported by every major party the same despicable, neo-liberal CBT/GET regime that has blighted the lives of people with ME for decades, is to be applied across society to all the poor and vulnerable.

The Great Myth

Another day - and Linda, in atrocious suffering,  somehow has to cope, find meaning, get through each tortuous moment. 

If only, she says, she could understand her body, what is happening; is that too much to hope for ? 

The hell, she exists in, cannot be described.

There is a  GREAT MYTH in ME world : : everyone says, oh there is no research, we can't do anything until we have done the research. 

NO !!!

People need clinical support, biomedical  input RIGHT NOW. In what other disease would you be left with absolutely  nothing, no input, no service provision, because there is not enough research ?

The medical knowledge IS there, right, here, right now  ! After all this time,  we have figured out a great deal by ourselves; we  have a pretty sophisticated idea what to look for - but the great big CFS machine always gets in the way, the one that writes  people with Severe ME off as not worth bothering with, in the eyes of the medical profession !

Because  of  endemic  misinterpretation, misrepresentation and misdirection people with Severe ME  literally are being left to "rot"without proper medical support, without the respect given to other neurological diseases.

Plus there is an  almost complete lack of understanding how to engage with and provide a service to people with Severe ME who require an ultra aware,  flexible, sensitive, specialist approach.

It is time for a change !!!

With Severe ME

With Severe ME
We are abandoned
We are ignored
We are neglected
We are abused
We are mistreated
We are harmed
We are misinterpreted
We are misrepresented
We are misdiagnosed
We are overlooked
We are denied
We are covered up
We are misportrayed
We are maligned
We are betrayed
If we were dogs
we would get better health care
Be better investigated
Be better protected by the law
And have better recognition and concern.
How bizarre is that?
If we had any other neurological disease
We would have a respected diagnosis
Suitable Support
Appropriate Medical care
Knowledgeable practitioners
A clinical pathway.
Instead we have no biomedical clinics
No biomedical pathway
No centre of excellence
No choice of well known, well informed clinicians
who understand our illness
No real understanding
Nor clear and congruent physiological explanations
of our disease
No adequate or appropriate investigations
No safety and security
No clear treatment pathway
We are left at the whim of individual practitioners
As to whether they believe we are even physically ill
With no protection from any practitioner who chooses
To misinterpret and mistreat us.
How outrageous is that?
If we had any other incurable disease
We would not be fobbed off and left with nothing except
the unrealistic lame expectation to get better for no reason
With no means to gain that end.
How on earth can this continue
to be acceptable?
Why are the most ill, open to the worst interpretations
And allowed to be the most vulnerable of all?
Surely anyone who knows about Severe ME
and does nothing to change things
Must weep from shame?

Just let go and dance

In the latest edition of "Breakthrough", ME Research UK are scathing about the "fear avoidance" model that underpins mainstream service provision i.e the Fatigue Clinics .Similarly Cheering From The Sidelines have just published a breathtakingly brilliant, terrifying account of the system which  do not have a clue what to do - except hand out advice like : "just let go and dance" 

How hurtful is that ?

Read it and weep - with rage.

The Medical Neglect of ME"  :

Thank you Design Cuts !!!

There was a knock on the door just now and this bunch of absolutely beautiful flowers - a total
surprise, to celebrate my BJN Nurse Award , arrived !!! Wow.....
They were sent by Design Cuts : an incredible, wonderful, friendly, supportive company, with an extraordinary commitment to dialogue and building community !!!
No one has ever sent me flowers !!!
All the Stonebird and Holy Way Posters draw upon my awesome collection of Design Cuts font and texture packs. I posted a video a little while ago, to show my appreciation :
..and recently I was invited to become a Design Cuts Ambassador !
Thank you so much Tom, Matt, Darren, Tina , Carol and Edita !!!!

The Nothing

I feel like screaming
And raging
At the nothing
Which consumes me
Enters every pore
and every cell
and empties my mind
and my body
Turning everything
To nothing.
Each noise
loud or small
is magnified
even louder
The thudding
Harms me
Through the walls,
The smoke in the garden
chokes me innerly and outerly
The need for silence
Yet the longing for interaction
And fights
within me
In the end
There is no desire
At all
For there is no thought
No function
No feeling
Only pain
And the crawling
Limb rending
Has entered
All of me
And refuses
To leave.