Stonebird

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.

There was a time before the mid-80's , when ME was taken so seriously that an ME Bill was put before Parliament . Way before "CFS" destroyed everything, ME was properly seen as the major public health risk that it is. In Illo Tempore , is the title of one of Shamus Heaney's poems, evoking an older world. Back in the early 80's, in another life, I was training to be a Registered Nurse for people who have a learning difficulty. Part of my training, I have only just remembered, involved "shadowing" someone's life . God help us, it was useful to learn how to sit for hours and hours, with nothing happening. The point is, my training back then, felt radical, on -the -edge. I emerged qualified and burning with anger at the injustices that destroy lives. Now, however, when I deal with health professionals, as a "lowly" full-time carer, it's feels like it's all about spin with no substance. There seems to be such a toleration of end...

"You get all these statements of intent to help, have these meetings, fill in dozens of multi-page forms, and then nothing happens. Except more talk, more forms and endless waiting." (Bernard, a carer, in "The Selfish Pig's Guide to Caring, Hugh Marriott, Time Warner, 2003, p. 119.) ....my heart sinks. Some initial research reveals that the old NHS Complaints procedure was badly in need of reform - and , thank the Lord, it has been. The problem, when contemplating going down the Formal Complaints road, is that ME is completely unlike any other disease in the way it has been misrepresented and manipulated by the medical insurance industry; the issues are complex and require sophisticated understanding. Added to that I have to take into account my wife's ability to deal with any complaints procedure - for it WILL make her health worse. Is it worth the cost ? In my mind, the only way to advance the ME cause and ultimately to get some tests and treatment , i...

“ If it scares you its probably the right path “, says Mark Gerzon. We had no choice but to issue our own notice of non-compliance with the NHS’s suggested compromise yesterday, my wife and I , as independent members of the consultation group. I am not sure what path the rest of the group is going down; it could go either way. But here we are, on our own again and there is much to be said for that in terms of cutting down stress and expenditure of precious energy. So much of our time recently has been spent trying to negotiate with other group members, at enormous cost to my wife and I - for any stress can be absolutely devastating in ME. This is a real issue in ME campaigning. So, here we go. On a journey to explore the NHS’s new complaints procedure; it could be that my wife is far too ill to get far. We will see. As Hugh Marriott puts it : “ Nobody ever tells us (carers) how to keep on knocking at Officialdom’s door without becoming suicidal in the process. ” (The Selfish Pig’s ...

My wife is not a disinterested observer in this process, despite all her suffering she, as Sam Keen (Fire in the Belly, Platkus 1992, p. 165) puts it, roars with the "thunder and lightning" in her. Keen , in his extraordinary book, describes those " spiritual warriors alive with moral outrage" who take "risks..and give vent to prophetic anger at secret wars and hidden government. " Never have I known my wife to be so angry as she was, yesterday when there appeared to be a hint that we might go along with the NHS's "compromise" . Her anger , which I cannot possibly describe, was white hot with outrage. ME sufferers have had enough of being denied, ignored, manipulated through truth and lies out of existence ; this is the time to say "no more !" When you really suffer, says John O'Donohue (Eternal Echoes, Bantam Press, 1998, p.161), then you know where "Nowhere is". Nowhere is huddled up in the corner, out of sig...

I presume, although I still do not know for certain, that this morning's meeting is not going ahead. No one has told me one way or the other. Those "organizing" this meeting are paid to do just that; that is their job. And when they sit around the table with us, "they" are all receiving a lot more money than most of "us". It is "us" though who have to deal every moment of every day and night with the screaming disease that is ME. My life is totally dominated by the person I care for being in constant pain and suffering from an overwhelming , never-ending galaxy of symptoms. This takes up all my time and often makes me very stressed indeed. So much so, that any additional stress, I take on, has to be weighed up very carefully indeed. I have chosen to enter into this struggle for a biomedical service; I accept and will try to deal with the cost as best I can. What I do not accept and find so maddening is the incompetence that I daily have...