Trying to wear that upside down frown

I can hardly move today. Crashed horizontal till evening by something that feels like burning, sickening poison seeping through my arteries, making my muscles jerk, my blood slam in my temples, my throat and chest exhausted at every breath or murmur.


Three things today focus in the back of my addled brain:


1) Summer's over. September 22nd means its autumn. My favourite season is here.

2) R.E.M. have split, or rather retired, and I feel too fragile today to listen to any of their luminously complex back catalogue. Their music has got me through some difficult M.E. days of drought. Not today. Just touches too many deep places today.

3) News is breaking that XMRV has just been shown to be unrelated to M.E. Probably. I can't process all the facts and figures today. But that little light in the dark tunnel of M.E. research seems to be being snuffed out as I type.

Good or bad? Hope it's not a chance for the media to take us backwards away from awareness. Or is this a stirring up of already muddy waters, freeing the field for more quality bio-medical research that will help sufferers everywhere to get well again?

Tomorrow, three certainties:

It will be autumn.

I want to listen to treasures from R.E.M.'s back catalogue if I can bear any sound at all.

I will still be hoping for some relief amid this horrendous disease which is about to prevent me typing or staying upright a moment longer today. As of now.

XMRV video on YouTube

You ban us from giving blood in the UK.
Yet you still mutter it's all in our heads?

*facepalms (very) gently*

Worth a watch if you want to understand why.

What's in a Name?

Some days my brain is mush.
Sometimes that's thanks to being crashed from M.E.
Other days, my brain is just mush.
No excuses!

Like today.
I discovered that the plastic surface of the buttons on the door of my 5 year old microwave was getting very blistered and bubbly. When I investigated more closely, the penny finally dropped. After only five years! It's just one of those transparent plastic protectors manufacturers put over screens, meant to be peeled off immediately! Here I was, 5 years later, with the thing still in place.

Now although I bought the micro at around the same time as I was floored by my latest major bout of M.E. five years ago, I can't blame that "Duhhh!" moment on M.E. brain fog.

I can't blame comical moments like that on anything else but my slightly scatty, away with the fairies personality. I've never been that quick to grasp the plot, even with various letters after my name!


But I'm struggling now with a new "development" in the science behind M.E.  Or rather the language used to provide more baffling acronyms. It's enough to induce "brain fog" in the fittest!

Circa 2008, a study claimed a link between M.E., prostate cancer and related illness, and XMRV (Xenotrophic Murine virus-Related Virus). Yes - virus-related virus. There's a good start towards clarity, eh?


Now, in March 2011, I see on various blogs, M.E. chat groups and elsewhere on the web, XMRV is going to have a name change, to HGRV (Human Gamma Retrovirus). For resultant conditions like M.E. with possible viral links, the snappy new acronym will be HGRAD (Human Gamma Retrovirus Associated Disease). One reason seems to be "Murine" refers to mice, so the new name focusses back on the humans affected, not visions of Mickey Mouse and Ratatouille!


Should we break out the champagne? (I might, if only M.E. had not also made me allergic to alcohol!).  Wait! I've only recently got one friend's eyes to light up with understanding that my Type 1 diabetes and my M.E. may well both be understood one day to be autoimmune diseases, quite distinct from Type 2 diabetes and a spot of vague "T.A.T.T." (Tired All The Time).

Now we have yet more letters to juggle with! While for the general public and for many G.P.s,  understanding and acceptance of the crippling, frustrating disease and the umbrella of illnesses that may or may not be related, is still a lottery dependent on personal encounters with genuine sufferers or the cynical lies propagated by the media and talking heads.


While the war of words goes on between the labels M.E. (Myalgic Encephalomyelitis, or as some insist, Myalgic Encephalopathy), C.F.S. (the much vaguer Chronic Fatigue Syndrome, which IMHO fails completely to describe 3/4 of the disabling symptoms and coddles folk into the notion that a bit of backbone would cure those contemptible malingerers!) and P.V.F.S (Post Viral Fatigue Syndrome, which unlike M.E. seems to harbour hope of a quick return to full functioning), we now find more riddling initials to addle our foggy brains!


I have so many friends at the moment struggling with a wide variety of illnesses which, like me, they simply refuse to be defined by or beaten by.


The labels, the letters may come and go. But we're here, guys, and we're not going to be filed away under T.B.A.

Keep smiling and trusting that you are certainly not alone.

ME patients blood donor ban

"A pint, that's very nearly an armful!" as Tony Hancock lugubriously put it in his classic "The Blood Donor" sketch.

I'm off this morning to give blood. Just in connection with the usual round of tests for my Type 1 diabetes. Not as a donor, ever again, it seems by today's BBC headline. Today my blood was officially declared unfit to grace the veins of anyone but myself!

Click to read "M.E. PATIENTS FACE UK BAN ON DONATING BLOOD" 

M.E. doesn't make the news every day. When it does, the invisible community of M.E. patients often breathes a collective sigh of dread, if they are up to it. We wonder, what will the media manage to mock in the latest headline?

-Will there be a new way of getting a laugh out of "Yuppy Flu"? 
-Will there be a new raft of arguments about the research required to get to the root of M.E.'s neurological causes?
-Will XMRV (xenotropic murine leukemia virus-related virus) be thumbs up or thumbs down as the culprit this time?
-Or will we shudder with impotent grief at another wave of generalised attack aimed at real benefit bludgers, who, of course, some misinformed angry people will see as including all those hardworking, taxpaying members of society who from this devastating illness and others find themselves forced to claim invalidity benefit reluctantly, completely against their nature or aspirations?

Blogging for a few minutes on a good day or preaching for an hour a month does not, believe it or not, constitute the abilty to work full or often even part time. If only! I know, because year after year before diagnosis I drove myself back to working  again and again before another complete collapse.

It got to the point when I was so obviously ill to all my colleagues and parishoners around me, they used to beg me to leave late meetings early. I so hate letting people down that I was thrown into despair at how to do all I was obliged and delighted normally to do while my body and mind were unable to stay upright, too sick with disorientating exhaustion to sleep, caught in crippling pain, uncoordinated, feverish, spaced out, dizzy and nauseous and increasingly unable to perform all the work I so love, or indeed, any work consistently.

Today the headline leaves no doubt. M.E. is real. So real that the health authorities are banning all M.E. patients, in a crash or in remission (i.e."cured" enough to function for a period, hopefully indefinitely or permanently, in "boom" after "bust"), from giving blood. One day soon, we will know exactly what virus or gene is triggering this hellish disease and be in a position to conquer it. (Though cancer and the common cold give us less optimism to hold our breath for that in our lifetimes!). I'm an optimist, though, and I have to believe these headlines are little beacons on the way.

Meanwhile I will go on doing what I can to pace myself into another period of remission. My prayer is that when it comes, it will be forever. My determination is that on that day, I will not be sucked into the arrogance of the "cured" which harangues those still gripped by the illness to "do what I did, and look, I'm fine". 

If I had done that every time in my life when I too appeared "cured" when in remission, I would have hurt and possibly destroyed the hope and joy in many with whom I can now empathise.

Together, one day, we will dance in the sunshine and have our full lives restored to us and be more than overjoyed to graft gleefully in the valleys where we are needed.

Maybe one day, too, we will be able to give "very nearly an armful" again to save our neighbour.