Stonebird

A mystic once remarked that  "True love is no game for the fainthearted and the weak; it is born of strength and understanding"  ( Meher Baba); experience has taught me how true his words are. Caring, especially over decades,  takes unheard-of strength and  resolve;  all your courage is required, daily, not to give in to despair. I am deeply struck by what  Willo and Maureen wrote here about people with ME and "the beating" the heart takes", through all the horrendous issues that surround this dreadful, mainly ignored and still untreated disease. For example my wife describes her isolation as being buried down a pit, behind a glass wall, surrounded by five foot of barbed wire, unable to breath, eat anything, without it causing agony, paralysed by the slightest sound or movement. That is the context in which you, as a carer, tread so carefully. Not carefully enough though,  yesterday morning I got it very wrong, my unaware greeting,"Good mor...

"The noise, sudden, assaulting, painful, like a dagger in her ears and a kick in her guts and a blow to her back and her legs, all at the same time, instantly demolished her.  Anger rose in her, unwanted, yet nevertheless real.  And who would not be annoyed to be suddenly unexpectedly, violently assaulted? The shift from ability to inability virtually instant, the transition and sensations literally intolerable, who would not shout out, cry in distress, react in anger, at the violence done to them, again and again and again, without any warning or control?  The ability, the hope, the possibility of thought or action ripped away in an instant, intense, increased pain pouring in, for she was always in pain everywhere in her body, like a hot, burning constant rash, covering every millimetre of her skin, but when noise hit her, the pain intensified further and was too much to bear now, almost twenty five years on, experiencing daily, moment by moment agon...

When the builder, next door, told me he " didn't give a shit ", about my wife's noise sensitivity, it shouldn't have come as a shock when he also told me that I am a" fucking waste of space ". But he is not the only one to have told me that, either explicitly or implicitly. Not that he knows a thing about me. It doesn't take much figuring out to understand how he and the others are simply voicing the message of the times; that this is the neoliberal climate we live in, that this is the by rote condemnation of the sick, the disabled and by implication, those of us who care for them.  That this is exactly how death-making governments operate. There is little or no status in being a carer, if you are sick, disabled, you are classified in the public's mind as an unworthy scrounger, as opposed to, say, the hard-working, tax-paying builder; those who have proper jobs, who get up in the morning and get on with their lives. How dare us burden...

There is a trail of dead ones, the loved, the honoured, the valued, the precious, All now lost to this illness, in death, Negated away by the denial and untruth Of the severe physical illness they did battle with Every day. My heart cries endlessly as I remember their names The warriors who are with us no more Gone to rest now. But why? I cry. I have to ask why? I have to demand honesty. Even though I do not get it Yet still I must demand and demand again. Their death demands we ask for integrity and truth. But there is so little of it out there All lost in compromise or outright denial and ignorance. The dead grow, Shockingly. Loved ones depart out of the blue, without prior expectation. The shock leaves tremors in the community of the sick still left behind, Not knowing who will be next. Fearing the worst Yet hoping for the best. There is so little truth. There is such little accurate representation. There is such little ...

Stonebird for a LONG TIME has been a "CFS"-free zone; its  focus is Severe and Very Severe Myalgic Encephalomyelitis.  Stonebird has always fought against,  never ever promoted ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’. Everything we write about is sound,  based upon our lived experience as a carer and as someone who has been living through the full horror of the disease for almost 25 years. Each published word,  is poured over to make sure it as as accurate as possible, every video scutinised and put out at enormous effort and risk. Even so, it is hard to think of anyone we have not upset or who has taken offence.

When I trained as nurse, back in the 1980's, opioids like morphine were rarely prescribed, outside pallative care; the administration of "controlled medicines" was strictly regulated. I know, from my wife's experience, how the pain of Severe ME is off the scale, it has greatly concerned me, however, to notice how nowadays so many sufferer's are routinely being prescribed opioids, once the preserve of terminal care. This week's Economist is running a feature story on how the "opioid scourge" has come about. http://www.economist.com/…/21699363-americans-are-increasin… Inspired by the article, I have begun doing some initial digging and sure enough, it's a disturbing tale of shakey evidence and huge profits, spanning the same period, from the mid 80's onwards, that the physical truth of ME has been so systematically covered-up. My heart goes out to everyone, the pain can be so bad in ME, it is beyond description...