Showing posts from April, 2015

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 …

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.

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 pun…

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 nev…

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. We predicted that this would happen on Stonebird years ago.

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, misr…

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?

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.