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 consta

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,

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  disab

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 untreatable, unattractive  burden, go on" the doctors say "get out of our way, ME  is just a somatoform, delusional, conversion, anxiety disorder" We have to live in a new way we have learned that there i

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 applie d 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  mis

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 Investigation Suitable Support Appropriate Medical care Knowledgeable practitioners A clinical pathway. Understanding. 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 inves

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 completely Turning everything Utterly 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 Contradicts And fights within me Till In the end There is no desire At all For there is no thought No function No feeling Only pain And the crawling Screaming Invading Tortuous Limb rending Jellifying Emptiness That Has entered All of me And refuses Steadfastly To leave.