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.