Stonebird

M.E does not mean : "Oh dear, I have been thinking the wrong thoughts to get well" or  "Oh dear,I am so depressed I cannot face life. or  "Oh dear,I must think positive thoughts to ignore my reality or  "Oh dear, I let my body get flabby and lazy from deconditioning" or  "I have to trick my mind and body into working by pretending to be well" ME is NOT CFS !!!

I bumped slightly into  Linda's chair, instantly pushing her into complete and devastating paralysis. I hate to think of the consequences.  Ironically I am busy working on the new book : Notes for Carers; where I keep writing, over and over again, you HAVE to be  ULTRA AWARE and careful ! You cannot afford to make mistakes. ..but it is not easy....... This is the hidden, gutting agony.

Questions are, at last, being asked about the lack of care for people with Severe ME, following the death of Emily Gregg, a young policewoman, who became paralysed,  bed-bound and spent much of her time in the dark, with ear protectors on,  with  no clear care pathway. The only available  "specialist" service was located in a locked unit for people with mental health problems. The West Sussex Coroner conclusion was that awareness and care services for chronic fatigue syndrome were insufficient. She is reported as saying that she will write to the doctor about her “  concern nothing more was done to diagnose  her illness." http://www.chichester.co.uk/ news/local/emsworth-police- officer-s-suicide-prompts- concern-over-care-1-6742298 We have been raising the issue of a lack of an appropriate service for people with Severe ME, for years, specifically that : The most ill and vulnerable who are often too ill to access any service are not ge...

People diagnosed with Severe ME have to be so careful. It is very hard to find someone who comprehends the risks and dangers of engaging with them, especially because the illness is so hidden, invisible, misunderstood not adequately investigated.  Once you reach a certain level of the illness there comes a point beyond which people cannot risk investigations. The danger to your health and life is so immense.  People need help badly, but it needs to be given in the right way.  The harm done through ignorance is indescribable.

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 tot...

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,...

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 t...