Pill box.

This is my pill box, just been restocked and ready to put back into my bag. I'm forever forgetting to take things so a few years ago I simply gathered a handful of each of the many things I have to take together to carry about with me. I still forget to take them at the right times but this helps!

As you probably know if you follow my journal I have ME. I try not to dwell on it here and I tend not to talk about it too often, very dull for those around me! Also it's really tiring in itself to have to explain to people what it's like and answer the inevitable questions and well meant suggestions. I'm very aware of what a misunderstood illness it is and with ME/CFS Awareness day falling last month and my own health being particularly bad just now I wanted to share something I'd read recently.

It's an autobiographical novel called 'The State Of Me' by Nasim Marie Jafry, a fictional account of the authors experience of having ME. It's incredibly insightful and she very abley articulates whats it's like to suffer long term from this disabling and debilitating illness.

This extract is set during the 80's so not up to date with any advances or terminology today. But to be honest there haven't been a whole lot of advances since then! So it's still very pertinent - I first got ill in 1994 and not a lot has changed since then.

These are her words, not mine...but they could be...
Anyway, please read -

FREQUENTLY ASKED QUESTIONS BY WELL-MEANING STRANGERS IN THE LATE '80'S.

STRANGER - I feel tired all the time, I think I've got what you've got.

ME - It's much worse than feeling tired all the time. You feel like toxic waste and you have to have the symptoms for 6 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 hangover 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 syndrom, allergies and tinnitus thrown in.

*

STRANGER - Don't you feel better after a good nights sleep?

ME - Don't be silly! You can sleep for 12 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 that there's a disturbance in the hypothalamus, which controls the sleep cycle. Very vivid dreams is another symptom.

*

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.

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...

*

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 f*** they are talking about. I'm not a yuppie and I don't have flu.

*

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 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 Dr 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 - Mum called him out one day because I was in so much pain. And thank God for Dr 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 f***ing ridiculous.

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...[/i]