Too much lactic acid in her legs

In my novel,  the main character Helen Fleet has a series of sarcastic/humorous exchanges with a stranger. Describing how she feels after trivial exercise (remember this is the eighties), she says she has too much lactic acid in her legs.

This has been validated in research reported in the Times the other day:  Professor Julia Newton's study found that PWME produce up to 20 times more lactic acid than healthy controls: 'The finding shows ME leads to a cascade of physical changes right down to the cellular level.' Consultant neurologist Professor Peter Behan, of course, discovered muscle/mitochondrial abnormalities in 80s and 90s. (I had a muscle biopsy in late 1983 - and EMG and specific Coxsackie tests - to aid his diagnosis. He told me I had a 'full house of abnormalities'.)

It is indeed heartening to see biomedical findings being reported responsibly in mainstream press. We have become so used to pejorative, ill informed articles, and PACE nonsense. I think - I hope! -  we are actually now, in the UK, looking at a horizon of proper research, where my illness will be granted the respect it has been denied for too, too long.

The biopsychosocials' position in denying  reality - conflating ME with 'chronic fatigue' for decades - trying to label a neuroimmune illness as a mental illness - is simply untenable. They will be seen to collaborate with serious scientists, then they will hopefully retreat from the scene altogether. I would prefer the 'biopsychosocialites' were nowhere near this new 'big tent' of research, but at least we can keep an eye on them, hopefully they will stay in a corner and practise their witchcraft quietly. This conflation of physical illness with mental illness has helped no one. I think the truth has finally dawned on them. They will, of course,  never admit they were wrong about ME. How could they?

This  new Science Media Centre collaboration is nicely explored here  by  Invest in ME.

I welcome all research into properly defined ME, and sincerely hope we are turning a new page. I don't want to have to live another thirty years without effective therapies.

* A good summing up of the state of play here by Simon McGrath.

Fiction, memoir and International Consensus Criteria

Charming article from Chimamanda Ngozi Adichie  on fiction and memoir, she says: 'I long for a new form, a cross between fiction and memoir...' and speaks for us all when she says that 'fiction is more honest than memoir'. This is exactly why I wrote The State of Me as a novel and not a memoir, I wanted to get closer to the truth, as I described here. Also, I love that she is so laidback about fiction and memoir overlapping.

I'm re-reading 'On Being Ill', Virginia Woolf's brilliant essay in which she ponders the lack of novels about physical illness: 'The public would say that a novel dedicated to influenza lacked plot ...'.  It made me think of this extract from chapter eleven of my novel:

stranger   What did you do today?

me              I made cheese scones and put a dead bee in the bin. 

*

Last week, I received a few printed and bound copies of The International Consensus Criteria 2012 from Invest in ME, and on re-reading, am struck again by how important such a document is:

Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.
 
Solution
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

*

 

I wish every GP in the land had a copy on their desk, would stop them writing derivative nonsense like this  (annoys me more as Margaret McCartney is a Glasgow GP, perhaps she thinks consultant neurologists at Southern General routinely gave plasma exchanges for somatisation disorders in 80s?).  Her article is from 2008, maybe she has educated herself since then about biomedical abnormalities, one can only hope. 

The ME Association is, in fact,  sending out educational material to GPs this May. Patients have given names of practices they wish the booklet to go to. Education of GPs is, of course, paramount to stopping the  lazy perpetuation of myths and fiction that has done so much harm to people with my illness. Am curious: are there any 'meeja' doctors in UK who write responsibly and accurately about ME?  I honestly don't know of any.

Thirty years ago...

Came across the orange carte de séjour from my year abroad, October 1982, the year that turned out to be the year(s) from hell when I got Coxsackie, then ME. 

It makes me think of this wee snippet from The State of Me:

We had to register at la préfecture and get ID cards. Le préfet was like a Peter Sellers character. He glared at us while he stamped our cartes de séjour with a hundred different stamps. We started to giggle and he glimmered us a smile. 

Jim'll Fix It

Watching last night's Panorama, What the BBC Knew, in which the BBC investigates itself,  I was  reminded of how deeply we were all anaesthetised - for want of a better word -  in the seventies and eighties about the reality of who Jimmy Savile was: he was avuncular and eccentric, he was a good man; he was up there with Blue Peter and John Craven's Newsround, part of the safe furniture of childhood. My wee aunt with Down's Syndrome, a couple of years older than me, used to love him and I can see her vividly, grinning and giggling, her blue trousers, legs crossed, sitting on the floor watching Jim'll Fix It.

Last night showed a clip of Jim giving out medals to some cub scouts, instead of individual medals they got one big joint one, and he looped the medal strap round all of their necks. At the time, this would have been seen by us as playful and affectionate - watching now it's like he was putting a noose around their necks.

I reference Jimmy in my novel, my very ill character Helen wants Jim to fix it for her to be better. It's 1984. It feels odd  to re-read these words now.

At the weekends, I would sit clamped against the radiator or lie on the couch while Sean and his friends watched videos. Sometimes Ivan was there. The highlight of Saturday was watching Blind Date. I would fantasise about being chosen and worried sick about being sent on a date where you had to walk a lot. Sean said I should write to Jimmy Savile: Dear Jim, Please can you fix it for me to be healthy? I’m twenty-one and live in Scotland. I could see myself sitting in the television studio, with the medal round my neck, grinning idiotically at the audience. Rita and Nab would run on with tears in their eyes, thanking Jim for the miracle.

The  current disturbing BBC calamities aside, like so many, I cannot understand how others 'knew' of Jimmy Savile's crimes, but remained silent over the decades. Different culture back then or not I just don't get it.

Too much lactic acid in your legs

Last night, during athletics,  Colin Jackson, former world champion hurdler, was speaking about aerobic and anaerobic pathways. When you have ME your pathways are fucked. Made me think of The State of Me, chapter 17, extract below:

*

stranger         Can you not build up your strength with gentle exercise?

me                   No! Your muscles aren’t producing energy normally. If you climb the stairs you feel like you’ve run a marathon – your muscles burn, they think they’ve done much more than they actually have. And they don’t recover normally.

stranger         You have too much lactic acid in your legs?

me                   Something like that. We have faulty glycolytic pathways. Did you know there are three pathways – one aerobic and two anaerobic – for producing energy? They’re continuously operating in all our activities, though one is usually dominant. My ex-boyfriend told me – we’re still really good friends.

stranger         Who would have thought producing energy was so complex?

me                   I know, you take your body completely for granted, you don’t care how it works until it stops working properly, and then you want to know all about it . . . I’m thinking of taking up the shot-put, it uses the anaerobic alactic pathway where huge amounts of energy are supplied very quickly and no lactic acid is produced.

stranger         I like your sense of humour.

*

Counting crows, & BBC Alba

I love this video of a crow using  a jar lid as a sledge. 

And this is enlightening too, I didn't know they were so intelligent.

There are also crows in The State of Me:

*

helen         He’ll be so handsome in his graduation
                  robe and I should be with him, wearing my
                  polkadot dress – afterwards, they’re going to
                  the Ubiquitous Chip for dinner and I’ll be
                  stuck here counting rooks and crows.

stranger    What’s the difference between a rook and a
                  crow?

helen         A rook’s a kind of crow – a gregarious
                  Eurasian crow to be precise. They nest up
                  high and are very noisy.

 *

The BBC Alba documentary on ME - as part of 'Trusadh' series - is out next Monday 23 at 9pm, the second part on Monday 30. (If I have a lisp it's because I'd recently had my wisdom tooth out.)

Come September/October of this year I will have been ill for almost thirty years. It's a long time to have been ill, a long time to have dealt with all the bullshit. I remember my first symptoms like yesterday, but I do not remember the last day of feeling completely well. I was not yet nineteen when I got the Coxsackie virus, which triggered  ME. I had just gone to live in France as part of my degree, it should have been wonderful, and it turned out to be nightmarish.  And I know I come across as feisty and fighting, but I have the fragility that all of us with longterm ME have, and I have the 'scars' of not being believed.

Extract from The State of Me, Chapter Nine

'Terrified. Getting worse. No one can help me. Even my hands feel ill.'

Delighted that the book  has two new Amazon reviews already this year.

And I didn't manage to finish The Hare With  Amber Eyes - before New Year - after all. Dearie me. But I will finish it, I will!

Posing

One nephew is learning the trumpet, one is learning yoga. I know which one I'll be joining in with. I do enjoy the corpse pose though I wish it wasn't called that. 

My character Helen Fleet enjoys it too:

Today her arms and legs are being eaten by moths. (So much for the yellow capsules.) The Tree and the Salutation of the Sun are out of the question. She likes the eye exercises and the Rabbit (you just kneel). She can do the Fish up to the part where you have to lift your legs. Her favourite is the one where you lie still and pretend you’re dead.  

(Extract from The State of Me)

Goldfish & wisdom

I had a wisdom tooth out on Wednesday so still feeling a bit fragile but keeping it all at bay with illegal amounts of Nurofen and codeine. I got adrenaline-free local as adrenaline is not great for ME, though I wondered - briefly - if the dental surgeon perhaps thought I had false illness beliefs after the media circus last month, though he gave absolutely no indication of this (I console myself that most people can probably see through the bollocks of Wesselymania). He was great and I came away loving our NHS. In my novel, the main character's father is a dentist and I've been thinking of this scene:

My real father Peter had his own dental practice above a butcher’s shop. He had minty breath and slept with his nurses. (A little more suction, please, Denise!) When you went through the close to get to the surgery upstairs, you could smell the meat from the butcher’s delivery entrance. Sometimes there was blood on the ground. There was a fish-tank in the waiting room and the goldfish always had a string of white shit hanging from its tail. Peter left when I was ten but we still went to him for fillings. I didn’t find the divorce traumatic – I’d never really liked him. The only thing I have in common with him is that we both love raw onion.

I did a search for 'goldfish' to find this scene and found three occurrences, that always intrigues me, recurring images that I have forgotten.

A few words...

I saw my book as an ebook for the first time, last night, my friend brought over her new Kindle. I'd seen the 'raw' epub file on Adobe Digital but it's not the same, you don't get a proper sense. I'd already downloaded the first Kindle for PC version, a year ago, but the spacing was wonky in parts so it was withdrawn. The spacing is thankfully fixed, though, because they can't convert asterisks easily, in Chapter 17, FAQs, it looks like one long conversation between the stranger and Helen rather than snippets. Original is here. I also came across 'the Tag', this should be the Tay, in case you are wondering, a river in east of Scotland, we have not gone to Germany.

I imagine in many books where the format is not exactly straightforward there are wee glitches, the technology is still evolving. So, yes, I am happy enough with my ebook, though it still seems odd to me, I cannot imagine reading one. Scrolling through the text, my arm got tired, repeatedly pressing the same key. My friend's a total convert, she downloads stuff to her phone too, and finds it thrilling. I think the key is to see ebooks as well as not instead of. We toasted my first glimpse of the Kindle TSoM with pomegranate juice, I would've preferred champagne but I have antibiotics for wisdom tooth (being taken out next week).

Still, paper books are objects of beauty. They are irreplaceable, to me.

Scrolling to the end of the ebook, I was struck by the epilogue, and probably the most important fragment of my novel, especially resonant now:

If we look through the round window, and really strain our eyes, we can see some of the powerful people who didn’t believe in the illness – GPs, psychiatrists, journalists – standing shamefaced in the corner. They are wearing dunce hats and stuttering apologies.

There has been a leap in ebook sales since 'The Threats' so I can only hope more people are reading and learning (and enjoying the novel as a novel). And for that I am very grateful to Kindle.

*I should add I've started using Kindle for PC just to download book samples and that is very handy. I love the immediacy.

** International Consensus Criteria for ME, July 2011, now on PubMed.

Storytelling (6)

Interesting blog post here from BMJ - discussing the way we use metaphors to understand and describe illness. I left a comment and only later realised the author of the piece is a psychiatrist; my comment has not been published so perhaps he is of the Wessely persuasion, who knows (or perhaps he simply has not had time, I prefer to think that is the reason, but one never knows, these days). Professor Wessely, as we know, takes metaphors and illness a step further and actually declares the illness to *be* the metaphor itself. Quoting him from the Times, the weekend before last: “Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

Yup. All getting a bit Elaine Showalter.

It's worth noting that there are, of course, fine psychiatrists - and psychologists - who fully understand that ME is neuroimmune and don't give us more grief to cope with than we already have - ie coping with the illness itself.

I also want to flag up Hillary Johnson's Osler's Web website. I still remember receiving my copy of Osler's Web in 1997, my brother had posted it to me from USA. It's funny, in my head the book is orange, but in reality it is only the spine that is orange, the cover is black and red with a little white - but my memory is of opening a package with an orange book inside. I went to Hillary's blog last night to follow up a comment I'd left earlier and was delighted that she mentioned she had very much enjoyed The State of Me, she calls it 'classy writing'.

In 1997, the year I opened an orange book that was not really orange, I'd only started thinking of the possibility of writing a novella - never imagining I would cope with a full length novel - about the illness. There is, interestingly, orange - the colour and the fruit - in The State of Me. It features a fair bit, no idea why. (Swans do too.)

This extract describes Helen Fleet's 21st birthday:

She has lots of cards with a dual message: Congratulations on the key of the door! Get well soon! She thanks everyone politely. Her arms and legs are injected with poison. She doesn’t have the strength to peel an orange. Her mother has made beef stroganoff (the cows haven’t gone mad yet) and fresh cream meringues. Helen has her birthday meal on a tray in bed. She has a sip of champagne. Jana sits with her and makes her put on her new lipstick. Helen feels like a clown, a grotesque invalid wearing bright red lipstick and titanium earrings.

* My comment on BMJ blog has been posted, so I am glad, not being censored, after all.

The cheek of magpies

There's a magpie that ignores me when I knock on the window, it flies away and dips right back, its chatter reminds me of an evil toy train, starting up and stopping, over and over and over. I think of chapter seven of my book, Helen Fleet:

*

Can’t sleep for the clenching pain in my spine and legs. The birds have started. They’re like electronic gadgets set on a timer. They start off one by one and you can’t switch them off: a pigeon, a woodpecker then the din of the crows. I hate them all. I can’t stop thinking about Valerie’s blue lips.

I think she will die soon.

*

Daisy Miller & ME Awareness Week

What has Daisy Miller by Henry James got to do with ME Awareness Week? I recently came across the novella on my bookshelves and a sheet of paper dropped out: lecture notes from spring term, 1982 - my last term at uni as a well person. I recognise myself in these notes and it stabs me that when I wrote them I was essentially a different person. The notes brought back a memory of a letter from my English tutor congratulating me on my 'excellent' finals' paper - I think I'd answered on Daniel Defoe's Roxana. Of course, I was never able to finish my joint Honours French-English degree as I became ill that autumn, my year abroad in France totally disrupted. I had to come home - though (unlike my character Helen Fleet) I returned to France twice, desperately ignoring how ill I felt - and spent most of that year having medical tests. Foolishly, I dragged myself back to uni in autumn 1983 - all I knew was that I'd had Coxsackie B4 virus. The symptoms persisted, I remember clearly the overwhelming nausea and pain in my spine. I managed to get an Ordinary Arts degree, a degree all the same, but a lesser degree. I only needed one subject - a couple of classes a week - luckily I'd earned enough credits in my first two years. I was ill at my graduation and I look hellish in the official photo. I wouldn't let my mother display it.

My friends had not yet graduated, they were still studying for their Honours degrees. I was experiencing that first walling off, of not being part of the life I should be leading. That summer I got worse - my symptoms had literally multiplied - and was bedridden. I was diagnosed with ME by a consultant neurologist and in winter I had a plasma exchange, the first of many experimental treatments. The toxic awfulness of severe ME is almost impossible to describe:

We were all guilty of clichés.

Have to get worse before you get better.

Tomorrow’s another day.

Light at the end of the tunnel was the favourite, but my symptoms continued to synchronise themselves in a vicious kaleidoscopic pattern and all I could see was black.

(Extract from The State of Me)

I remember hell and enforced resting and hoping then pushing myself (again, far too soon) back to study part-time for an MSc - never feeling well, always feeling I was overdoing it. I've no idea how I got that degree, I took the 'easiest' modules, I took only afternoon classes so I could sleep late in the mornings. I sat in lectures feeling like I had a brick weighing my head down. I forced myself to go to classes even when my legs were like spaghetti. My academic self was lost, I couldn't retain anything, I cried in my GP's surgery because I couldn't remember. Some days were better than others. Then - was I fucking crazy? - I moved to London to look for part-time work - most of my friends had moved to London and I thought there would be more choice of interesting jobs with part-time hours. I was thinking maybe eight to ten hours a week. I remember loving listening to GLR. I started volunteering at a centre for people with learning difficulties. One of the young men couldn't pronounce my name and called me semen, I don't think he knew what he was saying.

Four months later my whole body literally went numb in Oxford Street one day - a relapse so catastrophic that my mother had to return from abroad to care for me. There had been signs but I ignored them. Not everyone in my family was as supportive as they should have been and I haven't spoken to that person since (I think all of us have experienced someone close letting us down).

These days, I describe myself as moderate with severe dips (and I know I come across as much more well than I am). I must live my life by strict pacing, I have no choice. It's intuitive, I don't even think about it. I can feel dramatically ill out of the blue, no warning. I'm *never* symptom-free and activity always makes me worse. Any activity. Brushing my teeth still gives me burning in my arms. Writing my novel was exceptionally difficult, I don't know how I did it. Writing keeps me sane, it is my response to what has happened.

And even with pacing, the energy I do have would make a healthy person weep with disbelief and despair. I'm often housebound for at least half the week, just from the daily tasks of living. And yet I am lucky compared to some. But I can't help wonder how I would be now if I hadn't forced myself to 'recover' early on. I suspect considerably better. The problem was I didn't know what I was dealing with, I didn't know the nature of ME until I had lived it. It probably took me a decade to understand. And how could I ever have known that almost thirty years after getting ill, the circus of PACE would be the biggest show in town?

Thankfully, as a powerful antidote to this circus we have Invest in ME 6th International conference taking place on 20 May. I have now put Daisy Miller next to The State of Me. I sense that is where it belongs for now. I would like to re-read it. Less than ninety pages long, that's my kind of book!

Fighting fiction with fiction

I've wasted too much energy this last week being angry at the PACE 'scientists' so I'm fighting their fiction with my (autobiographical) fiction, posting chapter seventeen of my novel, which seems more pertinent than ever. Readers have often fed back that they enjoyed the 'stranger dialogue' sections, I used this device to convey medical information that would have been very dry (and dull) to narrate. And, please, bear in mind this is from the p.o.v of 1980s, don't get upset if the criteria are not up to date (ie only diagnosing after six months), this is from the fictionalised context of being ill with severe ME twenty-five years ago. And, as I said on Twitter, ME is currently being over-diagnosed and under-researched, but if you have the real thing, please do not do aerobic exercise, you will make yourself more ill, perhaps catastrophically so.

Chapter Seventeen, FAQs

Frequently asked questions by well-meaning strangers in the late ’80s

stranger I feel tired all the time. I think I’ve got the mystery illness.

me It’s much worse than feeling tired all the time. You feel like toxic waste and you have to have the symptoms for six months before they’ll diagnose you.

*

stranger Is it like flu?

me It’s like flu (without the mucus) PLUS glandular fever PLUS a vile hang-over every day. You have to stay in bed. Your life stops and you can’t function. There are subsets of symptoms within symptoms. You discover new kinds of pain, new kinds of weakness, neurological sensations you didn’t think possible. And, if you’re lucky, you might have irritable bowel syndrome, allergies and tinnitus throw in.

*

stranger You don’t feel better after a good night’s sleep?

me Don’t be silly! You can sleep for twelve hours and you’re still exhausted when you wake up. And often you can’t sleep.

stranger Why can’t you sleep if you’re so exhausted?

me They think there’s disturbance in the hypothalamus, which controls the sleep cycle. Very vivid dreams is another symptom. Last night, I dreamt that Bruce Forsyth gave me a massage and wrapped me in Sellotape.

*

stranger Have you tried Bach flower remedies? Hornbeam’s recommended for those who are floppy and tired.

me I’ve tried everything.

*

stranger Have you tried magnesium supplements? You can get muscle weakness and numbness and tingling if you’re deficient.

me I’ve tried everything.

*

stranger Have you tried an anti-candida diet – cutting out foods with yeast and sugar? An overgrowth of yeast can make you tired all the time.

me I’ve tried everything.

*

stranger Can you not build up your strength with gentle exercise?

me No! Your muscles aren’t producing energy normally. If you climb the stairs you feel like you’ve run a marathon – your muscles burn, they think they’ve done much more than they actually have. And they don’t recover normally.

stranger You have too much lactic acid in your legs?

me Something like that. We have faulty glycolytic pathways. Did you know there are three pathways – one aerobic and two anaerobic – for producing energy? They’re continuously operating in all our activities, though one is usually dominant. My ex-boyfriend told me – we’re still really good friends.

stranger Who would have thought producing energy was so complex?

me I know, you take your body completely for granted, you don’t care how it works until it stops working properly, and then you want to know all about it . . . I’m thinking of taking up the shot-put, it uses the anaerobic alactic pathway where huge amounts of energy are supplied very quickly and no lactic acid is produced.

stranger I like your sense of humour.

*

stranger What does ME actually stand for?

me Myalgic encephalomyelitis. Myalgia is muscle pain. Encephalomyelitis is inflammation of the brain and spinal cord, though some medics say there is no inflammation present. But my brain certainly feels inflamed.

stranger That’s a bit of a mouthful – certainly sounds serious.

me It’s always getting new names. It’s also been known as ‘Icelandic Disease’ and ‘Royal Free Disease’ – there were outbreaks in Iceland in 1949 and at the Royal Free Hospital in 1955. There have been outbreaks all over since then. It’s being referred to as ‘Raggedy Ann Syndrome’ in the USA because you feel like a rag doll.

stranger What about the term ‘yuppie flu’?

me What about it? It’s referred to as ‘yuppie flu’ by those who don’t know what the fuck they’re talking about. I’m not a yuppie and I don’t have flu, though I have asked for a Filofax for Christmas – a fake one.

stranger What do you need a Filofax for?

me Nothing. I just want to be fashionable.

*

stranger Is it always triggered by a virus?

me It often happens after a virus – we may be having an abnormal reaction to the virus, or the virus is persisting, but no one really knows. It can also happen after vaccinations and exposure to organophosphates – farmers have had a similar illness after using sheep-dip, but the government doesn’t believe them either.

*

stranger Why do some doctors not believe you?

me I honestly have no idea. Maybe because there’s no single diagnostic test and because they’re arrogant. They don’t understand it, so it’s easier to blame the patient, label them as depressed, neurotic, lazy etc. They say people are jumping on the ME bandwagon, but how can you jump on a fucking bandwagon that you didn’t know existed?!

stranger I don’t know, how can you?

me I’d never heard of ME or Post-Viral Fatigue Syndrome or any other mystery illness until Bob diagnosed me . . . my GP dragged her heels for months, telling me I was imagining it. Thank God for the locum who believed I was ill – Rita called him out one day because I was in so much pain. And thank God for Bob.

stranger No wonder people with ME get depressed, putting up with such disbelief.

me Yes, no wonder.

stranger No wonder they’re prescribed antidepressants.

me Yes, no wonder.

stranger [hesitantly] But antidepressants can’t cure ME, can they?

me NO! NO! NO! Antidepressants are not curing the physical symptoms, they are just relieving secondary depression. But some doctors seem to think they can prescribe brisk walks and a handful of tricyclics, and send us on our way. It’s fucking ridiculous: I would never take them.

stranger I’m sorry. I didn’t mean to upset you. It’s just something I read.

me I think there should be a mass crucifixion of all the GPs, psychiatrists and journalists who don’t believe it is a physical illness. These people are so powerful and are causing so much damage by not believing us. They should be made to pay. They’re making people more ill, forcing them to keep going.

stranger Do you really feel that strongly?

me Well, I’m against the death penalty but I’d be happy if they all got ME themselves. That would be enough. They would soon believe in it, within twenty-four hours of having it. I’ll tell you that for nothing.

*

stranger Is there a lot of research going on?

me The scientists who believe in it are researching it, but the government isn’t funding anything. The ME charities – the ME Association and Action for ME – are trying to raise money and awareness, and are lobbying the government. Clare Francis, the round-the-world yachtswoman has it, she was on Wogan.

*

stranger Will you ever get better?

me They keep saying it burns itself out in five years, but that isn’t true – I’ve been ill for five years and one month. I’m really hoping to get back to uni next year. I only need one subject to graduate with an Ordinary degree, but there’s no way I could commute, and no way I could live in a flat. My Honours degree is out the window.

stranger That’s a shame.

me I’ve been volunteering at the adult literacy class at the library, two hours a week. My head feels pumped up with chemicals by the time I’ve finished, and my glands are swollen, as if the actual effort of thinking is toxic, but it gives me a routine and I feel I’m doing something useful.

stranger Do you ever feel sorry for yourself?

me Not really sorry for myself, more powerless. I think you’re more likely to feel sorry for yourself with short-term suffering. If you’re healthy and you’ve got flu you feel sorry for yourself and need pampered. But if you’re chronically ill you just survive it. You start to appreciate small things. It’s what gets you through.

stranger You seem very stoic.

me Believe me, I have many days where I wish this wasn’t happening, or that I was dead, but then I see those poor wee Romanian orphans – shitting themselves in their cots, babies who don’t have a chance from the day they’re born. I want to adopt them all.

stranger [uncomfortable with expressing emotion] Well, good luck anyway. I’ll be interested to hear how you’re doing.

me I’ll keep you posted.

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.

Extract from The State of Me (Ch 3)

Part One, early 80s, Helen Fleet is an undergraduate, not yet ill.

******

In my first year at uni, I commuted, thought nothing of the mile walk to the train station - why would I?

I met Hadi at the beginning of the second term. He was Libyan and had his own flat and a fat black cat called Blue because she liked the blues. When Hadi had the munchies he would overfeed her, tipping Whiskas onto a saucer, tapping the spoon against the rim to get her attention: Come on, fat lady, come to eat! Hadi hardly ever went to his engineering lectures and got his friends to photocopy their notes for him.

His erection was bent like banana and he rolled his eyes when he came. I thought this was normal. The third time we had sex he complained about using Durex ('stupid skins') and said I should go on the pill. I told him I wouldn't have sex without a condom because I didn't know his history. He pouted and accused me of being clinical about love. When I finished with him at the end of term, he kicked over the rubber plant I'd got him and called me a prick-tease. I told him I was tired of his moods and tired of him shovelling cat food into Blue. I told him I was tired of listening to J. J. Cale. When I tried to leave the flat, he said he'd kill himself. A couple of weeks later, I saw him with his arm round a girl in the Grosvenor Cafe. I half smiled, but he blanked me.

Extract from The State of Me (Ch 6)

1984

My grandad was eating marshmallows and watching the racing. I was jealous of him with no worries, focused on his horse. How are you keeping, dear? he asked. He swivelled round and offered me a sweet. I sank my teeth into the vile pinkness. He cleared his throat and I could hear the hem hem travelling up through his gullet. (When you make that hem hem noise, do you ever think it's not you, but another voice in your head? These are the things you think about when you've got a lot of time.)

I asked my grandad what his horse was called.

He didn't answer.

He's deaf, said Brian. It's called Swizzle Stick.

They should name horses after illnesses, I said. It'd give ill people a chance to be sporty.

No one was really listening.

You could put your money on Viral Meningitis or Parkinson's Disease.

That's a terrible thing to say, said my mother from behind her crossword, but she was laughing.

Extract from The State of Me (Ch 6)

We were all guilty of clichés. Have to get worse before you get better. Tomorrow’s another day. Light at the end of the tunnel was the favourite, but my symptoms continued to synchronise themselves in a vicious kaleidoscopic pattern and all I could see was black.

© 2006 NMJ

Extract from The State of Me (Ch 3)

I HAVEN’T ALWAYS been ill. Once upon a time I got lots of ‘A’s and played right-inner for the school hockey team. I wasn’t very good but that’s not the point. I loved the clatter of the game and the gorgeous bruises and the orange segments at half-time. I loved the adrenaline at the start, the jamming and locking of sticks when the centre-forwards fought for possession of the ball.

© 2006 NMJ