Stonebird

Linda lies, covered in dirt,  where she has fallen and hit her head, hard,  on a brick. She grows increasingly dizzy and unsteady on her feet. By the time this picture was taken,  I  had held her, as best I could, I had  tried to comfort her , while fighting down my howls of despair; but she could not move for ages. I quickly took this picture, why ?? I wanted proof, evidence, something, anything I could find.... With rare exceptions, no one has a clue what people with Severe ME go  through. It is not getting any better. So I have this picture, tell me, what is a carer to do with his  anger ??

To those who have made Nov 1 Happen Thinking about the protest  on Nov 1; like a drowning man. To those who have made it happen, I salute you. To those who will be there you carry the hidden, the neglected, the suffering , those getting worse by the day;  you  move  boundaries,  you open up  a new front, you  make the invisible visible, you tear down walls , we cannot thank you enough. You save lives. To those who have designed the  posters , yours is  the gift of hope, you give us  a reason to carry on struggling here in the ocean of pain, for you speak  direct to the human spirit. To those  who cannot be there, your grief , your tears, your endless loss will flood , will rain down upon   the Department of Health ,  sparkling, dazzling  as a tsunami for yours is the most powerful ministry. To those, like me, who  don't even know what to do anymore to help , our silence is roaring. Everyone, ...

Ten Rules for an ME Activist Greg Crowhurst 9th October 2010 (permission to repost) "I have repeatedly said we should never compromise with falsehood and wickedness." Ghandi   " If you don't give up and you don't give in, you just might be okay. " Mike & the Mechanics 1. Do not  Compromise  .  Do not accept any service based upon the CDC or NICE Criteria - they have nothing to do with Myalgic Encephalomyelitis. 2. Do not Compromise . Strive always to see beneath the rhetoric,   whether it be the glossy words of an ME Organization that has sold out to the psychiatric lobby or any  attempt to bamboozle patients into accepting a therapy-led  Fatigue rather than a biomedical  ME service. 3. Do not Compromise . Never be afraid to speak your truth , no matter how awkward that may be to others or how angry it might make people feel. 4. Do not Compromise  .  Never use any term to describe the  illness ap...

"Am I young enough to believe in revolution; am I strong enough to get down on my knees and pray ?" Kris Kristofferson The day went nowhere much;  drowned  in tears. Tears of pain, of frustration , accepting that this is the most it is going to be, on a sunlit, beautiful day, where if Linda was well we would be walking our dog on the beach; ah, but she is never, never well and getting worse.   Us hugging in the middle of the afternoon ,  in that desperate place   , knowing there's no one to help, to advise , to offer any hope of a way out of this gruesome suffering. Come just before  9.00 pm and Linda lights a candle; would I pray the prayer ? I couldn't; I can't pray, I am so stressed-out.  But I could press the button and play the video. Linda on both sides of me and I heard these words : " By the power of your Holy Spirit uplift our carers and lighten their heavy load in dealing with this unrelenting illness and their own despair ."...

Khaly has posted a terrific  new blog : http://cfsuntied.com/blog2/2010/09/25/neverwhere-an-homage-to-advocacy-in-the-trenches/ ..which introduces the concept of "Neverwhere" : "Neil Gaiman is one of my favorite authors. In his book “ Neverwhere ”, there is another whole world brewing beneath the city streets, in London Underground. People fall through the cracks and end up there, becoming forever invisible to those who walk and work and live their normal lives Aboveground. Life in Neverwhere ceases to follow the rules of normalcy, and getting through each day’s fresh serving of Hell is a cause for celebration. So it is with this disease, which we call an invisible illness."    I've posted a response on Khaly's blog.  Here though  I'd like to chart ten facts I've discovered , for myself,  about Neverwhere , this place where we struggle : 1. Everyone eventually walks away : Friends, Family, Church, Consultants. 2. No one really wants to k...

It's a Crying Shame My wife, bursting into tears, because she's had to turn down an invitation to attend her God daughter's wedding. How she would have loved to have been there, sipping champagne, being first, as she always was, on the dancefloor. My wife's ongoing pain because she couldn't be at her Dad's funeral. The fact that she is completely unable to journey to see her Mum. The weekend spent in total agony and not knowing what to do about it, the hours and hours spent doing nothing and even that is painful. Yet only last Thursday I attended a top level, Director level meeting. The Chap there does not " believe " in ME. Much prefers the term CFS. Don't you know. And yesterday CoCure is full of waste-of-money  CFS papers by the psychiatrists, the same made-up CFS that bears no relationship whatsoever to how my wife has spent her weekend. Me, I rage at this  injustice and wonder how I am going to get through today.

Stonebird : the lived Experience of Severe ME A  response to  The UK Budget :  where's the ME Charities ?? Greg & Linda Crowhurst 22 June 2010 (permission to repost) Where 's  ME ??? Learning Difficulties , Autism, Mental Health, seemingly every  big charity have issued a Budget response already , strongly condemning the plans for Welfare Cuts and DLA .  But where's the outraged voice of  ME ?? Come 2013 and if you are a Severe ME sufferer claiming DLA, you will have to undergo a (disdainful ) encounter with a medic who has not the faintest notion of the complex neurological disease that is Severe ME ;  it's going to be called  a  readiness to work assessment. How can continuing to deny the reality of the physical illness that is ME  and  how can the ongoing   refusal  to biomedically treat ME,   be expected to get anyone back to work ? Continually hounding people with ME  to ju...