Wednesday, 15 June 2011


This week, BBC Alba ordered my book for researching a documentary on ME. And last week, I asked HarperCollins to send Yvette Cooper MP a copy after her interview in The Telegraph. I love that the novel continues to make its mark, slowly but surely. Recently, I quipped on an ME Association forum that it was almost 'easier' having ME in eighties, pre-Wessely, pre-PACE, pre-XMRV, then it was more simple (but still terrifying), us against the rest of the world, people with ME were very sick, lives torn up, no half measures, and the 'yuppie flu' label was our fight. It seems more complicated now, so many subsets of the illness, even more of a battle to be heard, and I'm glad I'm no longer bedridden (occasional dips, as long as I pace) as I don't think I would cope with the controversies. How can we have made so few steps forward in thirty years? (Well, I know how...)

*When I say no longer bedridden, I mean no longer forced to be in bed day in, day out, with the toxic awfulness of symptoms. I still have to rest a lot, bed or sofa, especially after exertion. I think of the enforced bedridden phase as a kind of ME apprenticeship that many of us have served, and sadly, some still serving, an unrelenting, unforgiving apprenticeship that never stops.


Anna said...

My aunt, also a veteran ME-er from the early eighties, is visiting at the moment. Through our conversations, I've discovered she's never heard of pacing, orthostatic intolerance, Canadian diagnostic criteria, NICE guidelines etc. Her response to her illness was to become a Buddhist and use her mantra "its only..." to manage discomfort and fear. When I wax on about how on earth she's coped all these years on her own, she just says "I'm used to suffering" with a little half smile. My blundering search for answers through the maze of ME information suddenly feels absurd. How I envy her gentle faith and her quiet inside wisdoms.

nmj said...

Hey Anna, Your aunt sounds chilled! I wish I could be more Buddhist in my ways. I think though - as I said somewhere else, a while back on here - that it takes at least a decade to get used to this illness, the shock of it all. And it's utterly intuitive to get better, to get back to a normal state of being and when that doesn't happen, in spite of trying everything under the sun, an acceptance comes in without your even knowing. Still, if I were still severely ill I would be traumatised - more than I already am - by the sheer nonsense being peddled about ME, left, right and centre.

Digitalesse said...

Excellent to know that your book is influential and doing so much more for ME awareness than many straightforward campaigns. (Not forgetting that it's an excellent read in its own right.)

ME apprenticeship! That is such a brilliant description of the bedbound years/early phases, and I can really relate to it too.

There's also that optimism of the idealist - that one day we will find ourselves having returned to full health and living a full life with the added spiritual advantage of having survived a life-changing illness. But like all youthful ideals, they are toned down as in the struggle to align ourselves with reality - that we're in it for the long haul and that survival is a daily ritual.

nmj said...

Hey Dig, Thanks for your words, though I'm not sure the book is doing 'so much more than straightforward campaigns' - I prefer to think of it as complimentary. Recently a friend in Italy gave the book to a houseguest and she read it during her stay. She knew nothing of ME and left with a sense of what it is - she may not have picked up a non-fiction book - not on holiday! - so I think in that way the novel has a strength.