Posts by Emma Hart
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Peter, I'll also ask you to please not re-enter this thread unless you're prepared to have a discussion, and respond to some of the things people have said directly to you. You were perfectly happy to get very personal with my life, and now you won't even reply to what Sue and I have said? You're being extraordinarily rude.
Also, please do let me assure you that nobody, nobody on this thread thinks you're a superhero.
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The really distressing thing about the 'oh, you need to sleep less and exercise more' magic solution, which every sufferer here will have heard from co-workers, acquaintances, strangers on the street, is that it's pretty much the opposite of what we've had to learn to do, and the hard way.
We have to learn to listen to our bodies. And we have to stop, straight away, as soon as we start getting tired, even if that means leaving a job half-done. It makes walking, my favourite form of exercise, problematic because if I walk ten minutes out and suddenly become fatigued, I still have to walk ten minutes back.
That's not easy to accept, that you're not the boss of your own body any more. And at the peak of a good day, there was still stuff left undone that needed to be done: I had a small baby and a toddler, after all. There's only so much arse-sitting-on that can be done under those circumstances.
Stress is certainly a factor. That's why it was called Yuppie Flu, because in the 80s it was hitting high-energy, high-activity, high-stress people - its traditional association with the Type A personality.
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Emma your description screams 'more exercise needed' to me. I am not doing so because I think you are lazy, but because it will be good for you. Yes, when you exercise you will then need a day or three to rest, that is good, but only if afterwards you exercise again.
Oh gee, Peter, why didn't I or any of my medical professionals think of that?
I was put on a Graduated Exercise Program. I tried it three times: every single time, I relapsed and ended up worse off than I had been before I started. In a British study, GEP had a lower success rate for treating CFS than a placebo. CFS sufferers have a demonstrable abnormal reaction to exercise. Did you seriously not read anything when your wife was diagnosed?
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I begin to wonder if everybody on PAS has CFS, at this rate :-)
I think you'll find that about every second person on PAS is a left-handed tattooed sleep-disordered chronically-ill technical writer with a philosophy degree.
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Don't fret. What you wrote was compelling. I suspect Emma's feeling good about making the decision to share her experience.
Indeedy. And the emails and messages keep coming in from people who just want to talk in private. It's pretty great.
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I think it's completely accepted that CFS is a very real disorder
They did a survey of GPs here in the 90s, I'll try to find it, which found that about 90% believed CFS was real. That's one in ten doctors who think you're making the whole thing up. Then there's still considerable disagreement about whether it's primarily physical or psychological. It's a while back now, but the immunologist I was sent to because my white blood cell count was through the roof and I had antibodies my general medicine specialist couldn't identify was not a believer in CFS. On discovering my father was an alcoholic he diagnosed depression and sent me to a psychiatrist.
Also, my WINZ designated doctor didn't 'believe' in CFS.
I was lucky enough that my GP, horrified to discover I was receiving no treatment at all besides anti-depressants that hadn't worked the first time, sent me to Ted Pearson, a GP and acupuncturist who'd published on 'Tapanui flu' in the 80s. That was when I started to make substantial progress. Being believed could not be taken for granted.
The yoga has been very helpful, primarily as exercise I could do that wasn't aerobic. And I could do it at home, at my own pace, and stop when I got tired.
I could not have managed what I do now back then, and I know what a difference it made to me when people understood, so this is like giving back to my old self.
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Who are, so far here, exclusively female. Is there some science on that?
Officially, CFS is more common in women. There does seem to be a genetic pre-disposition, but also it may be a factor that men either don't report it, don't seek treatment, or don't keep on harassng their health providers for long enough to get a diagnosis.
How about being a human pincushion in those first few years when you are trying to find out what is wrong. Oh that one is a winner
I have track marks on my right arm from the blood tests. I really whined on my fourth anaemia test: the irony of repeatedly taking blood to see if my blood iron was low was getting to me.
Also... massive props to our care-givers. This isn't like looking after someone for a couple of weeks' convalescence, it just goes on and on... Karl had to stop working to care for our two pre-schoolers, I was no fun at all even when I was awake. And his take is that he's really grateful to have had those years with the kids when they were little. He's a fucking hero, actually.
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Do you get that with Chronic Fatigue as it ebbs? Or is it just back to business as usual?
The bursts of energy, like Julie was talking about, are amazing. Euphoric. But after you blow a couple, for me anyway that happiness was always tempered by having to be so goddamn careful that you couldn't really enjoy it.
Showering... I'd forgotten about that, about how hard it was to breathe steamy air, how Karl would have to come and check on me in case I'd had a respiratory attack and I couldn't call out and I couldn't crawl out.
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For me the most frustrating part was having brain fog so bad that I couldn't even follow conversations on the telly.
Yes, you're right, Julie, the brain fog is particularly frustrating. Okay, I can't stand up, so I'll just read this... well, okay, I'll watch this... wait, what just happened? Oh, this is what day-time TV is for...
My trigger was a post-natal infection from retained membranes after the precipitate and kind of petrifying birth of my daughter. (She was nearly born at a red light I wouldn't let my partner run, and again in the hospital corridor.) But it seems fairly accepted now that CFS is an immune-system disorder and pregnancy does have immune effects, so perhaps it does 'reset' the problem for some people. Who knows. Not doctors or researchers, that's who.
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However, I felt gamed. Nobody died, what the fuck, are you being clever or something?
Okay, I'll admit I had a moment of this - three bullets fired, perhaps not sufficient dramatic pay-off.
But. Aurora died. Tama died. We've done death and we've done grief and we've done it on a broad canvas. They've had space to have entirely human reactions. It's not about plot, it's about character.
So, with Pascalle still alive and being her excrutiating self, we know that Cheryl's not trying to expiate any responsibility for the death of her daughter. That what she's doing may not be all about Gerard, but partially about Tama, makes it cloudy and complicated enough without adding in anything else.
So the issue really is, were those trailers that implied Cheryl was dead so strongly that we all came to believe that Pascalle was dead taking too big a gamble - generating buzz at the risk of pissing us off?