Stonebird

Went to a senior - level meeting yesterday, at the local PCT.  After 17 years of living on carer benefit, my clothes feel a bit worn, my hair not neatly trimmed ,  my sandals out of place. Being swished to the top floor, past  PA's, PC's , curved desks, busy open plan partitions,  was to glide through  the world I used to know; now it's all the kitchen, the bedroom , toilet and garden, where we sit in isolation,  for years on end. My voice is an effort.  If asked I would have said I feel tired and angry.  I make my tiny contribution, speaking up, I hope , for the severely affected. Making every word count. Yes; there's an impact. It's no game. There's no ego. This is me ,  fighting for my love and our life. Out of place here in this expensive 21st century HQ. A bit of a shabby carer .

Lying in bed, late last night, Linda sobbing in too much pain, in far too many parts of her body  to cope with, I reflected upon that MEA Survey, with my blood boiling. This is  serious suffering going on here, and there is only me and my arms and my not knowing what to say after 17 years of relentless and deteriorating hell. And now   the MEA have put  out a   document,   entitled   "Managing my ME" - a title that immediately made my toes cringe,  a document  which eases itself down, with a contented sigh, so smoothly, so comfortably into the NICE / Psychiatric paradigm, give or take one or two tweaks, don't you know. You have to wonder, does anyone else inhabit the world of ME that I do ? Inhabitants of ME-land don't mention the "M" word at all, they are far too busy on their lonely quest, turning over rocks in the baking, blinding   heat, trying to unearth some, any kind , of a test or a treatment; anything,  that might ...