A woodpecker just when I needed one

I rest a lot in my bedroom. I read there too and also watch garden birds, I have a chair at the window. It is my meditation, my way of being peaceful, my way of 'working out'. It's restorative, I lose myself, nothing else matters. I have had a dreadful few weeks with one thing and another. Last night, I woke up around three with a brutal sinus headache, I am very prone to them and can no longer use steroidal sprays because of ocular hypertension (discovered in 2009 when using steroid drops for uveitis), so I swallowed a handful of Sudafed and Ibuprofen. It's the kind of pain that can make you cry. I had a scan many years ago and have chronic inflammation, possibly from an over-zealous use of mothballs. I declined surgery. Today, I woke early with the pain still on the fringes but bearable. A few hours later, I saw a woodpecker - an adult male great spotted - I've never seen one before. I had on my old glasses and saw a flash of red at feeder, wondered why goldfinches were eating peanuts and when I held up my camera - always in my bedside drawer -  I realised it was a woodpecker. I managed to nab it before it flitted off. It felt auspicious. Today is also the anniversary of my father's death, he died in 1972, and although for many years it was not a date I ever thought about,  since I've  been writing about him, the date has much more resonance. A friend sent me this, the symbolism of a woodpecker. 

Ten years since The State of Me - publishing & illness (&Lionel Shriver)

This August it will  be ten years since the The State of Me was published. I'm still very proud of the novel and it remains my weapon in the fight for truth about my illness. A decade has been enough time for me to get over the roller coaster of the publishing process - and I have happily mostly forgotten the shock of it all. It was like a never-ending game of snakes and ladders. As a result of the liquidation of my indie publisher, the novel did not receive the marketing it should have done - but I remain very grateful my precious work was not lost in the drama and that HarperCollins rescued the book. This review by writer Elizabeth Baines remains one of my favourite reviews.

The path to being published was though unbelievably stressful and possibly contributed to my later developing idiopathic bilateral uveitis, a rare and serious autoimmune eye condition, where your iris attacks itself. It was a truly awful time, pouring steroids into my eyes, with the side effects of increased eye pressure, which also had to be treated (I'm sure ME was implicated and I still get six-monthly checks at eye hospital). I still remember at the time a friend telling me not to read  José Saramago's Blindness, which I, of course, did read.

If I were well, I'd no doubt be on to my third, or even fourth novel, by now, but I live necessarily in the margins of the writing world. It is often said you are only as good as your last book, but I'm happy to say that my novel is still being read quietly in the background, giving people pleasure and educating about ME.

I was delighted recently that Nick Duerden, a journalist and writer who has made a good recovery from his own very disabling postviral illness, messaged me and said he found the book 'very powerful and gripping'. He also said: 'You write fear, confusion and anger very well indeed. It moved me'. Nick is author of the recent memoir Get Well Soon (Green Tree, 2018). In the same week, Scottish film director and screen writer May Miles Thomas sent me a lovely card saying how much she had enjoyed the novel. I'd sent May a copy as a thank you for having the opportunity to watch her brilliant and hypnotic film Voyageuse free online on Vimeo.  Voyageuse made me think a lot about the layers of storytelling and how we (re)construct a life. I highly recommend this film.

I have been asked by Lighthouse Books to speak about writing and disability at a one hour event with other ill/disabled writers (I identify as chronically ill rather than disabled, the social model of disability does not in my view serve people with ME particularly well). I have said yes though I never know how I will be on the day, but am flattered as it's a decade since The State of Me was published. I've been shortlisted for a couple of short fiction awards since then, and had short non/fiction published here and there - details in sidebar - but because I live with ME, every minute of every day, I am the polar opposite of prolific (my novella-in-progress in 2015 is still in progress).

I do, though, know about the writing process - The State of Me took probably eight or nine years to write/publish in all - and I do, of course, know intimately about chronic illness. Writing is harder when you are ill. Everything is harder when you are ill. But writing (even as slowly as I do) sustains me. I would love to publish another book in my lifetime, I may be sixty by the time that happens, and I am not joking when I say that. Approaching my mid-fifties, I find I am thinking more about life and death and what we do in  a lifetime. I'm also more acutely aware of just how much my illness has thieved from me. (Interesting to read this interview with Elizabeth Strout who didn't publish her first novel until she was forty-two (I was forty-four). She went on to win a Pulitzer.)

*

Lionel Shriver has been off on one of her wee rants again - this time she is bemoaning the fact that Penguin Random House has a diversity drive. She petulantly writes:

“Thus from now until 2025, literary excellence will be secondary to ticking all those ethnicity, gender, disability, sexual preference and crap-education boxes. We can safely infer from that email that if an agent submits a manuscript written by a gay transgender Caribbean who dropped out of school at seven and powers around town on a mobility scooter, it will be published, whether or not said manuscript is an incoherent, tedious, meandering and insensible pile of mixed-paper recycling. Good luck with that business model. Publishers may eschew standards, but readers will still have some."

How can she be so goddam myopic and insecure? Diversity can only ever be a force for good (as long as we are talking about actual meaningful representation and not just tokenism). Do we really want to be reading the same novels about the same characters by the same people over and over again? There is an excellent response to Lionel's nonsense here.

I can honestly though say I have never felt discriminated against in terms of ethnicity (in fact, mixed race writers are all the rage) or disability, though one agent unprofessionally left her job without telling me, I imagine she did not realise just how slowly I wrote. It was a huge shock to me, but somehow I picked myself up and kept writing, slowly, slowly. Self-belief and the importance of bearing witness to the catastrophe of my illness was what drove me. But like many debut writers, I just felt constantly thwarted by the gate-keeping mechanisms of publishing in general. To be constantly told how good your writing was but because of marketing/pigeonholing there was no 'fit' for your book was soul-crushing. I think though pigeonholing is less rigid now, fiction and memoir are more readily blurred. The idea of what constitutes a novel is much more fluid.

When my novel was eventually published ten years ago, it had nothing to do with representation of illness/disability -  the notion of diversity was not being trumpeted back then. My novel was published in spite of my illness rather than because of. It was published on its own merit, as novels should be. Also, I'm mixed race but The State of Me has nothing to do with race - I'm sure Lionel would be very confused: a mixed race author with a white main character whose illness/disability informs the whole novel. Also, my character does not use a mobility scooter, but I had my first try of one a few weeks ago at the Botanics in Edinburgh and it was bloody liberating.

*

Illness brings a walling off, there are simply aspects of being a writer that are impossible for me. I cannot embark upon the circuit of readings and  festivals that is required of writers these days. The performance part is, for many, a significant part of the writing life. I was lucky that (pre-liquidation) my indie publisher had no concerns about my being unable to do the running around and promoting. It does break my heart a little that I am walled off like this, but that is the case with many aspects of my life. Many years ago in late nineties, I was shortlisted for the Robert Louis Stevenson Award on the basis of a short story. The award is a month in France in Grez-sur-Loing where RLS spent much time. It looks blissful and restful and surely promotes one's creativity. I seduced myself into applying  as my undergraduate year in France in 1983 was cut short because of the onset of ME and I felt that RLS, himself ill his whole adult life, would have wanted me to go. But had I won I would have been unable to go as I learned later that you have to cycle through the forest to get your groceries.

Still, a decade ago I had my book launch in Waterstone's on George Street (it still had the comma then, though now closed down) - it was probably the happiest moment of my life.

Like being in a boxing match

I'm very prone to post-cold coughs that go on forever - possibly because I have chronic sinusitis (from over-using mothballs years ago) and I can't use steroidal decongestant sprays  because of my eyes - but this has to have been the worst, almost five weeks of coughing. I had a vile summer cold beginning of July, that came and went, then a few weeks later I developed a cough from nowhere. Three lots of antibiotics and now an inhaler (which I think is helping, though I had to get a spacer, I just couldn't use it properly, all new territory for me). I am coughing much less now, but my poor ribs are still battered after more than four weeks of coughing and it feels like I am boxing myself whenever I cough or breathe deeply - the pain is so sharp and sudden. If I feel I am going to cough I have to clutch a pillow to my chest to try and cushion the blow. And even when not coughing, it can feel like having a clamp round your heart. I'm entirely used to back pain and am necking prescription painkillers (plus Ibuprofen) I use for my back for my ribs. I was hugely relieved that I got through my six-monthly eye check-up on Monday without coughing.

***

The  razamatazz and spin of the PACE trial saga has also felt a bit like a boxing match.  After spending £250 000 to prevent the recovery data from being released - QMUL are finally releasing the data,  a result, of course, of the recent tribunal. There has been, understandably, celebration and much anticipation on social media: the narrative of harmful nonsense has finally been toppled.

This graph (by Simon McGrath) represents published Lancet data (2011) versus original protocol-specified data (2016): 

PACE results don't look nearly so good now they've been released as  protocol-specified https://t.co/7SRXVwSdrj pic.twitter.com/EgRNAoxC8O

— Simon McGrath (@sjmnotes) September 8, 2016

The graph is explained more fully  here by Tom Kindlon, an Irish patient, who has worked hard to debunk PACE. Tom has been ill for over twenty years and is housebound as a result of graded exercise therapy (GET). Aside from the appalling anti-science of PACE, it is the narrative of 'mad, bad patients' that has been so galling, as health journalists unquestioningly and sycophantically jumped on the PACE bandwagon, ('cos The Lancet said it, it must be true). The Science Media Centre is certainly culpable for the way it has perpetuated this narrative of 'militant, dangerous ME sufferers':

“Mr Matthees points to press releases from the Science Media Centre, a body working with PACE researchers, to the effect that they were “engineering the coverage” to “frame the narrative” in such a fashion to discredit those with legitimate criticisms as misguided extremists by sensationalising a small number of indefensible actions to the detriment of the vulnerable wider patient ‘community’. This has been highlighted by respected scientists, and clinicians (see p87­90/B7). Rather, no evidence of a ‘silent majority’ in support of the PACE trial has been put forward.”[1]

All ME patients and advocates have much to thank Alem Matthees for, the ME sufferer in Australia, who is currently bedridden from his efforts of challenging PACE. It is unacceptable that someone with ME would have to go through so much in order to get to the truth. I hope the PACE team are  proud of themselves.

Tom Kindlon had this to say, which made me smile.

***

And thanks to @kafkaboots for telling me about Pierre Bonnard's Le Boxeur, it fits right in with this post:

More of Bonnard here, I love The White Cat too.

Lou Reed, Doris Lessing and Lionel Shriver

I felt sad about Lou Reed, 71 is not old (especially as I am approaching 50). You feel sad not only for the (at times, grumpy) man, but for the person you were when you listened to his music. Transformer was an album I listened to countless times with my first boyfriend in early 80s. We were together for five years. I can still see us taking the album out of the sleeve to put it on the record player. He lived in a 'rough' area and his dad was a communist. He'd shout upstairs, It's time Nasim was going over the road, and  the boyfriend would  dutifully walk me home. All of them are dead now, the druggy boyfriend, the father and Lou Reed. In that order.

I've just started Doris Lessing's The Memoirs of a Survivor, it's been yellowing on my bookshelves, I've no idea when I got it. I'm only 35 pages in but love its strangeness and clarity, and Hugo the yellow cat/dog. Am smiling that her character smokes one cigarette every day, one of the characters I'm writing just now does too - her luxury in one dreadful day after another. These coincidences always happen, and are always going to happen, but just so you know I'm not nicking from Doris. (I met a woman once who smoked one cigarette every New Year's Eve.)

I'm having an eye saga again, no uveitis, thankfully, and touching all the wood in the world, every single tree, but the pressures have risen again, no idea why as there is no inflammation, and I stopped using steroid drops two years ago, but the pressure-lowering drops do not agree with me, they cause eyelid swelling - most eye drops do in my case, and ME can make you especially sensitive to drugs - which is just not on. And my poor eyes are dry as stones. When you have an opthalmology appointment now, they phone you a week before and you press this key and that  key to confirm. I'm always scared I make a mistake, but I love our NHS and would happily press keys every day to confirm.

And speaking of eyes, am very tempted to say to Lionel Shriver, Dry your eyes, Lionel. Also tired of her and Jonathan Franzen badmouthing social media, they don't understand that many writers use it intelligently and creatively. Yes, Lionel, dry your eyes.

Latest research on ME and autoimmunity

Am so happy that bright minds are engaged in biomedical research  (though I, naturally, remain cautious about shouting anything concrete from the rooftops). This is interesting, latest from Kenny de Meirleir and Vincent Lombardi.  I am sure there is autommunity implicated in my own illness, since I developed uveitis a few years ago, which I hate even typing, I try to banish it, was so disruptive and frightening.

I wish the 'ME-CFS' clinic in my last post would include this little snippet in their GP/patient leaflets, instead of indulging their fantasies:

Myalgic encephalomyelitis (ME) is a debilitating disorder

characterized by multi-systemic neuropathology, gastrointestinal

(GI) dysfunction, inflammation, and innate

immune dysregulation (1). Immunological symptoms often

include viral reactivation, cytokine and chemokine

irregularities, and decreased natural killer (NK) cell function

(2-7). Additionally, reports of individuals with MEexpressing

autoantibodies (8, 9), and the successful treatment

of ME with the B-cell-depleting drug rituximab (10, 11),

suggest that a subset of these individuals may suffer from an

uncharacterized antibody-mediated autoimmunity.

Little is known regarding the pathophysiology of ME;

therefore, diseases with similar or overlapping symptoms

often serve as useful guides when exploring new

experimental concepts. For instance, autoimmune diseases

such as multiple sclerosis (MS) and systemic lupus

erythematosus (SLE) have many symptoms that overlap with

those of ME. Neurological manifestations often associated

with ME (12), are analogous to the neuroinflammation and

cognitive abnormalities associated with MS and SLE (13,

14). Additionally, GI aberrations, which are common to

individuals with MS and SLE (15-17), are among the most

frequent symptoms reported by those with ME (18, 19).

 

The whole de Meirleir research paper is here.

99 reasons why I should go back to my Kindle

I keep almost forgetting I've got a Kindle but on Monday I will be eagerly downloading Caroline Smailes' innovative ebook 99 Reasons Why. The eleven endings have caused quite a stir, some people getting their knickers in a right old  twist.  You can read one of the endings here.

I am excited and  want to read them all! 

Update* Just saw this Reuters video, where both Caroline and Scott Pack (our publisher) talk about  99 Reasons Why.


(And I should really go back to Tim Winton's Dirt Music which I think I started end of January on Kindle,  was enjoying and stopped for no good reason (I wonder if the paperback at my bedside would have lured me back sooner, the Kindle can seem inert by comparison, it's just not as seductive if you need a bit of  a push). Though I admit chapter two of The Return of Captain John Emmet  - the paperback - didn't really grab me -  I was reading it at the eye clinic, maybe that's why - I loved the first  chapter - so I've lent it to my mother in the meantime. Two chapters is certainly not enough to dismiss entirely. I will go back, I usually do.)

Post-Alba: 'Toxic Tiredness' (Part Two) - updated

(*Having re-watched Part Two, I've now added to this post in bold at the end.  And Part One is blogged here. **Also, both parts are available on you tube  now. One here and Two here.)

I'm not blogging about ME in February, or perhaps ever again(!), I badly need a break, so this is a quick response to Part Two, I need to watch again, my thoughts now, honestly disappointed - there was a real lack of balance this week, too much focus on emotions and depression and 'being kind to yourself', which have absolutely NOTHING to do with neuroimmune illness; also, too much pro-Mickel, there should  have been someone who did NOT recover with MT. It all just seemed a bit pat, and I still don't understand what MT is! I couldn't follow the steps. And I certainly don't agree with David Mickel that ME belongs to a group of 'fatigue disorders'. No siree.

It just seemed a bit cobbled together this week, there was no sense of narrative, last week's felt sharper.

Delighted for Holly, though, who had clearly been severely ill (she made me think of my friend described in below's post), and I felt she was describing the ME I once knew, sitting on the stairs to get down one at a time, cos I could not walk, but also - what role does pregnancy play in improving ME, how does she know that wasn't/isn't a sustaining factor? And how did she get to the stage from being so ill to being able to consider pregnancy? That seemed to be pre-Mickel, but was just skipped over completely. But hers was the narrative I wanted more of. Her experience of MT would have been more meaningful to me.

Also, if you are treating someone who also has had depression - Kim the photographer - that muddies the waters. I think from a pure ME p.o.v, we need to see MT demonstrated to work on patients who are not at the same time depressed (or afraid of becoming depressed), or pregnant (absolutely no disrespect to Kim or Allison).

We also needed more Prof Behan - we had to wait 35 mins! (and I was secretly wishing  my book would have been on his shelves). Quite emotional seeing him, took me back to the days of hell, when I attended Southern General. 

Interesting - he now says that stressors like strokes and some post-surgery states can also trigger ME?

Loved his chat about enteroviruses and mitochondrial damage. He is the man.  

Was also a bit peeved - they said -  I regularly take part in online debates, I stay away from forums as much as poss!  I go to MEA FB - mainly for info - and occasionally Invest in ME, that's  pretty much it. (And I comment on BMJ when necessary.) I neither have inclination nor energy to argue in circles with people you are on the same side as. It sucks the very life out of you.

So, yes, I hate to say it but I feel a wee bit disappointed, but I will need to rewatch, absorb it properly. I think I said 'take psychiatrists away from the research', and I stand by that... 

Still, the role of low cortisol/hypothalamic dysfunction - is that the right term? - is interesting in ME - I improved for a *very* short time with ACTH injections - and £5 million would perhaps have been better spent on Mickel than PACE. There's a thought.

On the plus side, no shots of me looking like a bag lady who found her sunglasses in a skip - (my gorgeous precription sun specs just don't look so glam on film) ...

To clarify: approx 47 mins in, the voice-over/ subtitles say that I've 'encountered threatening behaviour' online, which is misleading, I've personally never encountered 'threatening behaviour'. Yes, I've been upset -  there is often heated debate between PWME - attributable in large part to the lack of belief and confusion of criteria - and I've been demoralised/dismayed at how disrespectfully people can speak to one and other (especially those who comment anonymously or under pseudonyms), and I - for the most part - have learned to avoid those situations, where whatever you say will be skewed. However, there is also a great deal of support and warmth online, a generosity of spirit. Undoubtedly, the *ugliest*  comments I've seen are from members of the public - including  doctors - towards people with ME - I've been horrified at times by the prejudice and cruelty. The most upset I've personally been was after going on the Bad Science (Ben Goldacre) forum last year,  only because  a comment of mine from CIF had been cut and pasted there - needless to say I never went back.  As someone said, that is a lion's den - and those people are - I understand - supposed to be scientists. But there is just so much at stake here, after all the heated/recursive/looping threads, after all the laptops and iPhones are switched off, we remain ill, we still have ME.

Pleased with my comments on biomedical research,  48.30 mins in: 'Take psychiatrists out of the equation. Let psychiatrists study psychiatry, let neurologists,  immunologists, virologists, let all those good people study ME.'

Update: I'm less disappointed in Part Two on a second viewing. I think the story of ME  has been represented in as 'simple' a way as possible (and I mean that in a positive way). 'Trusadh' is a human interest/documentary format, it is not investigative journalism. As I've said before, it would take a six-hour Panorama special to portray what has gone on in the world of ME since my diagnosis. Kim (the photographer) has discussed in a new blog post his experience of being dissed ('CFS is not as real as ME'). I commented on his blog, in a respectful way, to highlight why this may have happened (not that anyone should diss anyone else, it is the medics who need dissed.) And I'm truly happy for everyone featured on Alba who has experienced an improvement in health. I did wonder if the young student featured in Part One had had a self-limiting post-viral state, or maybe he had a milder ME and recovered fully because he had rested sufficiently?

To have Prof Behan saying on television that there is an 'essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense' is just priceless. Also, I didn't realise he had examined some of the original Royal Free patients thirty years later, and that his late wife, Professor of Pathology Dr Mina Behan, had identified abnormal mitochondria in *those* patients.

Psychologist Professor Roddy Cowie rightly points out that scientific debate is often heated, not just ME. However, the history of prejudice against people with ME and the re-defining (hijacking) of criteria is what marks it out. After  almost 29 years of illness, I passionately adhere to the theory that ME is neuroimmune and CFS is biopsychosocial, and that it has been hugely harmful, misleading - and divisive - to conflate them. Still, the conflation is part of the narrative, and 'Toxic Tiredness' has shown this. But when anyone starts talking about changing lifestyle, and acceptance and banishing fear, I am pretty sure they don't  experience the same illness I experience.

The last word goes to Prof Behan: 'I have not seen any form of cognitive therapy or talking therapy to be of any value. I'm not saying that if someone who is in authority and who offers you warmth and kindness . . . won't have an effect for the benefit, it will, but the answer that it's the cure, I'm afraid, is wishful thinking.'

You've got the sea in your eyes

Had lovely few Christmas days (and birthday!) with my family. My favourite time, bedtime, bantering with my nephews who I was sharing a room with. I asked  if they would visit me when I was old and in a home, the 10-yr-old said of course he would, the 7-yr-old said he would write on a checklist 'have to visit my auntie', that's how he would remember. I'm still bemused that I now have a Kindle, a gift from my brother. I've downloaded Alan Hollinghurst (The Stranger's Child) and Mischa Hiller (Shake Off), I tried to download The State of Me, but apparently I cannot download the revised e-book (I downloaded the original in 2010 to my laptop when it was first released and it says I have already purchased). Since I now have a Christmas cold, the kind where the sneezes start in your feet and make their way up to your head, shaking you like a spin-dryer when they eventually happen, I will not be reading e-books or p-books (though I would like to finish The Hare with the Amber Eyes before Dec 31 as I started it in Jan this year). When I sneeze I look like I'm crying,  and yesterday the wee 7-yr-old said, You've got the sea in your eyes.  Though when I asked him later how to say in German - my sis-in-law is from Hamburg - I love you very much, Auntie N, he made a funny face and said Scheiße! before collapsing in hysterics with his brother. Not the only swearing going on, we got my (Danish) stepdad to say For helvede! a few times as it sounded like it was right out of The Killing.

Blue

Yesterday was the first day I wore my winter coat. At the eye hospital,  I sat next to a window, the sky more blue than it was in summer, and a perfect autumn tree full of tiny birds flitting  from branch to branch. It was hard to tell them apart from the falling leaves. Enchanting.

The evils of psychiatry aka the PACE trial

The architects of the PACE trial appear to be very confused - they cannot tell the difference between neuroimmune illness and psychiatric illness. Or maybe they are just evil. I am not even going to link to the published research, it would be like linking to medical porn, I am so angry and disgusted, but really why should we be surprised at their orgiastic cries of CBT and GET? I am equally disgusted at the Guardian for publishing these results as if they had even a grain of credibility. Okay, we can't educate the psychiatrists - denial of neuroimmune ME is their goal and nothing will shift them. And make no mistake, this is about patient neglect, clinical apartheid, deliberate obfuscation. These psychiatrists have made it their career to deny that ME is neurological, they think they can force us into recovery because CBT and GET are cheap to deliver. I wish we could ignore them, treat them as the mad cartoon professors they are - with their treacherous fingers on the CBT/GET button - but incomprehensibly and shockingly the 'expertise' of these vandals still ladders its way down to NICE, the NHS and the DWP. We have to keep fighting them, we have to. However, I am quite honestly, all out of fight at this time and I can't afford to be this stressed, it was undoubtedly the stress of my book being published that led to my developing uveitis and I try to avoid stress as much as possible now. I dread a recurrence of uveitis and I simply can't allow these PACE bastards to get to me. And we can't stand in our city squares for eighteen days - at least, not without CBT and GET miracle cures!!! - but we can try and educate health editors, make them see the truth behind the PACE trial. So, please tweet @TheLancet, @sarahboseley (The Guardian: Study finds therapy and exercise best for ME) and @martinbeckford (The Telegraph: Exercise and therapy can help ME sufferers, study claims), @bbc, and any other editor who published this nonsense. Try and make them see sense and maybe they will think twice about publishing such harmful research on our illness in future. (I don't see a Twitter account for the Indy health editor Jeremy Laurance (Got ME? Just get out and exercise, say scientists) - if anyone knows, please tell me.) Maybe I'm shooting the messenger here, but all thanks to such irresponsible, sensationalist media, the concept of ME as a psycho-social illness is now lodged in the public consciousness again. So tweet these editors the link to the letters Professor Hooper wrote to the MRC. Or tweet them one of the many articles on the flaws of this farcical, dangerous PACE research that didn't actually fucking use patients with neurological ME (brilliant statement from Invest in ME linked above). Education, education, education!

Guardian books podcast & Egypt

The Guardian podcast on books on illness is here, I was delighted to get a mention (approx 14 mins in), I really did not expect to, thanks again so much to those of you who tweeted the editor. Just shows that being a low profile tweeter - as I most certainly am - still gets results! As is often stated, writing about illness - or any catastrophic situation - is a way of making sense of the chaos, and is undoubtedly therapeutic as well as creative. My decision to write The State of Me as a novel and not a memoir has, in my mind, been reinforced to have been the right decision; illness is still mostly dealt with through non-fiction and I simply opted for a different way. The podcast made me think back to the rocky, rocky road to getting published. I wasn't just writing about being ill, I was writing about an illness that was (is) not believed by many to be physical: it was crucial to have my voice heard.

Also, written as a novel, it had to have more than time moving it along, there had to be plot too. Of course, when your character is very ill for months and years on end, there is no plot, there is only time. We mark our days and hours in terms of feeling like hell, or slightly less than hell. But if you have a love affair at the centre of the book - abracadabra! - there is plot. Being well-versed in chronic illness and stormy longterm love affairs, that was the natural way for me to go.

This podcast is very listenable - I will go back - and features well-known, older books on illness. I've read them all except Robert McCrum's memoir My Year Off (1998) and the Barnes' translation of Alphonse Daudet's In the Land of Pain (that very much appeals, I'd find it too hard in French). Also, good to learn of a new book, The Two Kinds of Decay (2011) by poet, Sarah Manguso. I very much related to her preference of writing in sparse, fragmented prose. Sarah also describes having plasmapheresis as a treatment for her rare autoimmune condition CIPD (diagnosed after half an hour by a neurologist!), which I also had - briefly - as an experimental treatment for ME in 1984 - an autoimmune treatment for a neuroimmune illness. I thought I would die afterwards. 
 

The new plasma was from a Polish donor. The technician told me I had great veins and that I might feel faint during the proceedings. It took three hours. He told me what Highers his son was doing and what colour of carpets him and his wife were getting for their new house. When it was over he said, That’s you, you’re half Polish now. He handed me a see-through bag of my old plasma. It was the colour of dirty goldfish water. A porter wheeled me back to the ward and delivered me to Bob. I had the bag of old plasma on my lap. (Chapter Six)
 

There are, of course, time constraints but the podcast could also have included Candia McWilliams' magnificent memoir on writing and blindness What to Look for in Winter (2010). I also recall enjoying Spalding Gray's slim memoir in the nineties, Gray's Anatomy (1993), his account of searching for a treatment for an eye condition, 'macular pucker'. When I read about others' illness, there must be humour, if the tone is too earnest I will pass. And I've been thinking about what books make me feel 'better'. When I was very ill, I read Midnight's Children, it became my project. I loved it. I cannot pick up my (yellowed) copy now without being taken back to that bleak time. Parvati the Witch is the character I remember.

Interestingly, one of the readers interviewed in the podcast - twenty minutes in - who benefits from attending 'therapeutic reading groups' - actually has ME. It struck me that to have our illness mentioned, like this, is a small step forwards. It is just another illness, one of many illnesses. No drama, no controversy. A woman with ME attends a library project, just as a woman with MS or lupus might.

Just after I realised TSoM was in the podcast on Friday I learned of something truly wonderful, Mubarak had resigned. I cried a little. How fabulous that by standing peacefully in a square for eighteen days you can bring down an entire dictatorship. There are lessons here for all of us. I am overjoyed for the Egyptians, I hope the Palestinians are next, hopelessly naive as that may sound.

A view from Spain...

At the weekend I had an email from Clara Valverde who had also just finished reading The State of Me. She observed how important it is to have the reality of the illness reflected in literature/art etc. Spain is a member of the European ME Alliance and Clara, a Canadian-Spanish former nursing professor, described their website (linked above) as somewhat hell-raising, a 'rebel M.E' site. Am sure if my Spanish was any good - all I remember is 'gato' for cat - I would love it! And for Spanish speakers, Clara has her own book here (rough translation, But You Look So Good! ME/CFS, a politically incorrect illness). She said she likes it most when I talk about books and I wish I could do that more often, but some ME issue inevitably whisks away my head, and you all know how slowly and haphazardly I read anyway. What I loved recently was a short essay by Geoff Dyer, 'Reader's Block', in which he describes his increasing inability to stay with a book unless it grabs him immediately. I laughed out loud when he said: 'Some books, obviously, are a waste of one's eyes'. And how, years ago, he laboured through The Idiot, hating it the whole time. Me too.

I've said before I'm staying cautious about XMRV and its possible link to M.E. Still, I have complete faith that the scientists at WPI will get to the bottom of it. XMRV will be guilty or not guilty. If not guilty, WPI will move down another intelligent biomedical road. (I'm interested in the exploration of XMRV coming from ticks. I was bitten by a tick when I was a child after visiting a safari park. Could XMRV have infected me and then hidden away until the Coxsackie virus reactivated it? After all, a lot of people in the west of Scotland were exposed to the Coxsackie B4 outbreak in 80s but didn't develop M.E.)

So, who knows, maybe we are finally on our way to a biomarker and cure for this illness that has fucked up so many of our lives. I can't emphasise enough to those who are not in the know: the tragic lack of biomarker has allowed M.E to be diagnosed in those who don't have it, and it has become dangerously symbiotic: pretend-M.E cases then feed into the 'trivialisation' of the illness, there is no longer only one illness under the microscope, proper research is impossible, look at the scandalous PACE trials, funded by our ever helpful MRC.

A broken leg (not that kind)

I fell asleep on my glasses the other night. I thank my lucky stars not my everyday lovely glasses, but my spares which I use for reading in bed and which have - since summer when I sat on them - a leg sellotaped on. I feel like Mr M, an R.E teacher at school who was alcoholic and lived on a boat. His glasses were always taped up. I have had to re-attach the leg for the hundredth time - is there anything more tricky than mending a broken leg on your glasses? They cannot be properly repaired - or I would have done so, obviously. I am putting off getting new ones - they cost a small fortune when you are this myopic - getting the thinnest lenses - in the hope I will be able to wear my contacts again next year. I just have to avoid breaking a mirror on New Year's Eve as I did last year, sat on it, it was on my bed - I didn't have my glasses on - but was relieved it was not my glasses I had broken even although I had cursed myself for seven years. Later, my friend told me to spin round three times to undo the spell.

The opposite of the moon

I'm not the first to have observed that the fascinating and moving rescue of the Chilean miners has been reminiscent of watching a moon landing. A grainy capsule, images being broadcast from an eerie, alien world, except this is down (almost half a mile) instead of up (250 000 miles). I can't help but worry for the last man to be rescued, waiting on his own for Phoenix to come sliding back for him. I've been thinking of Zola's Germinal, which we read in our second year at uni. I recall re-reading it for an exam, my cousin and I had gone to a caravan in the Trossachs for Easter and would go jogging first thing, study all day and get tipsy at night in front of the cosy stove. Those were the days. Good luck, brave miners, I hope by morning you are all 33 safely out, back with your loved ones. It must be sweet agony for those still waiting, 13 I think. I read this piece in Indy with interest. The book deal is already being sewn up. And Oakley - who donated the sunglasses to the emerging miners - are getting major free advertising. I am curious to know how long they have to wear dark glasses for, how long does it take to readjust? And not to dampen the joy of it all, but ... I hope these miners make a fortune from selling their stories to the media. They deserve it.

Books & truth & blood

I was truly sad to read about Candia McWilliam's struggle with a rare eye condition. I met her in the mid-nineties, she was funny and beautiful and kind. I can't recall now what writing I showed her. I've ordered her memoir from the library, though I see the memoir/fiction debate has been sparked again. It seems to me that AS Byatt wants to have her cake and eat it (though she admits she is 'tarnished' in this). Memoir is about truth or there is no point, but I suppose it can never be entirely straight as it is based on memory. Fictionalised memoir is a different matter.

Am so happy to see that blood donation from people with ME has been permanently banned from November 1. For me, this is not about the possibility of XMRV involvement, this is about the illness being accorded its rightful neuroimmune status by the blood bank. My energy is horrible just now, I'm like a calculator, ruthlessly measuring out tasks (I'm aways like a calculator, but at the moment I'm counting out in fractions of fractions). I'm definitely experiencing a sliding back this past couple of months.

Words

Someone somewhere said that in the novel I did not make enough of the brain fog you get with ME. Maybe Helen Fleet was not so affected, or maybe she wanted to underline the physical (you would need to ask her), but I certainly have real problems with concentration, especially if I am preoccupied by something. Whatever that something is - and especially if it is bad, but also if it is good - my head is expanded with that one thought and my concentration is zapped: I forget things, I drop things, I become ditzy as hell, I can't find words, I'm sure I appear dim. This has been such a week, exhausted by Easter family stuff (which has been lovely), and stressed with eye appointments and some other stuff, city dwelling, I have found myself, at least three times, in important conversations, searching frantically for the right word, and it is simply not there, not even a whisper: the word I want has been quietly erased from my bank of words. And today I remembered a Bowie song, 'Words' I thought it was called and John Lennon had written it, but some googling showed me it is 'Across the Universe'. I get so moved by 80s' (or 70s') music, this is what I was listening to before I got ill, and after I got ill. A lump in my throat. Always.

A week

What a week, physio on Tue and eye hosp yesterday. And more snow. I really hate the snow by now. I want to shoot it or injure it in some way. I hope this weekend to finish reading The Elegance of the Hedgehog. It is pretentious as hell, but I am loving it. I am reading it in English, a bit too tricky for me in French. (I can read Amélie Nothomb in French, that makes me happy.) I learned that, for weeks, I have been doing a piriformis stretch which is too aggressive, I hope I have not made my back worse. My ankle has been numb for ten days, like it's been to the dentist and the injection is wearing off - I have never had anything like this before. And I am sick of NSAIDs and codeine. But my eyes are calm, well, kind of calm, not entirely calm, but calm enough and I continue to taper the drops.

Broken

I would prefer not to have broken my beautiful Danish plate - once upon a time hanging in the hall - but that's what you get when you walk round the flat with eyes closed after eyedrops... I used to love my eyes, now I see them as tiny machines with many things that can go wrong.

Eye talk

Well, my (anterior) chambers may be deep and quiet, but the pressures are still fucked and I forgot to defrost the mince. I hate using the microwave for defrosting cos you see all the blood. And it doesn't seem like proper defrosting. Unnatural, if you like.

Whiteness

The eyedrops I have switched to are white, it's like putting Tipex in your eyes and makes me think of the characters in Jose Saramago's novel Blindness, who suffer a contagious loss of sight where everything suddenly turns white. My friend told me of the book, recently, saying, Don't you dare even glimpse this just now, so I ordered it from the library. The writing is fabulous though it's more about an imbalance of power and society breaking down than anything else. I am a third of the way through. I have still not finished any of the last three books I have been reading.