Up Front: Something Chronic
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Oh, thank God you did, I was starting to think I had lost my mind. Oh. Wait...
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However, if you have the impression I posted 'Remember you're a Womble', then that's all you. Who'd do such a thing? On PAS, for goodness sake?
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But... but... it was the Wombles! Bring them back!
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I do some voluntary work which involves helping people over the telephone. The first thing we are taught is "never offer advice. offer information" which I find really helpful advice-giving advice. Telling people what they should do can make them defensive and, if the advice is inappropriate or doesn't work, can cause them to mistrust you or even the whole organisation you are part of. Saying "some people find X helpful" or "have you considered Y" or "there's a study which suggests Z" is far less likely to backfire horribly. You are the expert in your own situation, information can be useful but only you can know what is going to work in your own life.
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The word "generalising" was meant to be a clue #sheesh
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The word "generalising" was meant to be a clue #sheesh
Yeah, that's why I was (mostly) mocking.
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For the record, I totally agree with what Isabel just wrote
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For the record, I was just being a bit of a dick. Generalising. Gio's advice was clearly lost on me.
And I agree with Isabel, and Deborah, and BookieMonster too ;-)
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Apparently my sarcasm is on the ritz today. Sorry Sacha, I really was just gently mocking.
I am tempted to go back through months worth of emails to Emma to see of I have ever given her any advice. But I am a little scared to.
Having said that, my advice tends to boil down to this quote from Sylvia Plath:
There must be quite a few things that a hot bath won't cure, but I don't know many of them.
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Although, coming from Sylvia Plath... Ahem.
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I am tempted to go back through months worth of emails to Emma to see of I have ever given her any advice. But I am a little scared to.
I, on the other hand, have given Megan about a metric fucktonne of advice. Though it was mostly 'have a hot bath, a glass of wine and some chocolate'.
And yeah, I think people are much more likely to get this right with friends. You know how they handle this stuff generally, when they're receptive, and when it's better to just shut up. I'm struggling with this right now with my mother, who's just had surgery and who I know, from long experience, is terrible at resting.
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This is why I love it. And why, aside from a handful from Shakespeare and Dorothy Parker, it's practically the only quote I can remember.
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Seriously, would you all just listen to me for a second and NOT TELL ME HOW TO FIX THINGS?
But if you just turn that wheel there half a turn clockwise ....
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I, on the other hand, have given Megan about a metric fucktonne of advice. Though it was mostly 'have a hot bath, a glass of wine and some chocolate'.
Actually, I believe we decided you are the Boss Of Me.
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But if you just turn that wheel there half a turn clockwise ....
"No, that one. Half a turn. No, not like that... fuck it, get out of the way."
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Your other left.
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I'm right handed. Just to be clear.
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I'm right handed. Just don't ask me which hand is right.
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Saying "some people find X helpful" or "have you considered Y" or "there's a study which suggests Z" is far less likely to backfire horribly
Sound enough, but smart people will usually see them as weasel words for "I advise". It's pretty hard not to shit some people off if you are going to give advice, no matter how nicely you dress it.
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Sound enough, but smart people will usually see them as weasel words for "I advise".
The thing is though that I'm really not saying "I advise" I'm genuinely saying "here's some stuff I know, use it how you will". I'd also like to point out that, while earlier in the thread we were talking about unsolicited advice, in this context I'm talking to people who have sought out my expertise and even then I never tell them what to do.
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I like hearing from other sufferers what's helped them, as long as they don't get evangelistic about it. Also it's interesting to hear what didn't work for someone, like Emma said.
And bearing in mind that correlation isn't causation, and also what helps one person may be useless for another.
I've said the things which have helped me manage my condition, does anyone else here with CFS want to share what they've found helpful? This forum is a great opportunity, if you do.
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Hmmm ... been back through the thread, and ... Lilith, I do think you jumped on Dyan a bit hard, and perhaps misunderstood what she was saying, which was addressed to the forum I think.
Your debut post here was brilliant; you write well, and you had a story to tell and information to share and I hope you stick around for discussion beyond this one.
But Dyan was doing that too, and it's one of the things I value about her contributions here. She's not a prescriptive person: she worked with HIV-positive sex workers, and you can't wear your judgeypants in that job. Everyone has to have some space to talk -- even Peter, until he demonstrated that he wasn't willing to listen.
But, yeah, let's get back on to diseases 'n' stuff. I'm a guy: too much talking about feelings and I'll have a panic attack ;-)
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Hi Russell, thanks for that. I certainly didn't intend to jump on/offend anyone. I found it quite hard to figure out what Dyan's main thrust was, as she talked about a lot of different subjects, but it seemed as if she was saying that stress and psychological attitude were pivotal in CFS. If I got that wrong I wholeheartedly apologise. But judging from the comments of others I don't think I was alone in that interpretation.
When people say that CFS is psycholgical, I really see red. I've spent so many years dealing with crippling physical symptoms, and when someone says it's in my mind/brain I feel they're negating my experience.
Perhaps I should have been more general in the way I addressed my remarks. I didn't mean to turn the debate into personal attack, at all. Dyan, if it seemed like that, I didn't mean it.
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What helped me:
1. Good luck, by way of:
- supportive doctor who knew her limits and referred me to an expert
- supportive partner, family and friends
- having financial support independent of the benefit system (I'm sure I would have been sicker and likely would still be sick had I had to deal with the Sickness Benefit hoops and/or not had the family financial support to cover whatever health stuff I needed eg special diet things, supplements, chiropractor)
- getting an early diagnosis
- being able to focus on getting well (no kids, parents and partner well, able to quit work & study etc)
2. Day to day stuff:
- lots of sleep
- avoiding physical exertion and accepting I just couldn't leave the house somedays
- using the Internet to keep in touch with friends and the broader world - this was before FB but that would have been great
- trying to keep my body clock roughly in sync with the ordinary world - the worst times were when I could only be awake in the middle of the night
- chiropractic care
- counselling for dealing with the depression element
- measuring progress by large timeframes (months, years)
- keeping supportive people close, and being quite ruthless about cutting out people who were draining
- the NZ book called iirc Understanding Chronic Fatigue (yellowy cover, came out early 2000s)
- having a warm comfy bed in a room which was dry and a lovely dressing gown -
Hmmm ... been back through the thread, and ... Lilith, I do think you jumped on Dyan a bit hard, and perhaps misunderstood what she was saying, which was addressed to the forum I think.
Thanks, Russell - I am posting stuff more in the vein of "gosh this is fascinating" than "you must try this".
But whatever my - or anyone else's - intentions may be - Lilith's point is valid and I am not offended. I'm grateful to be corrected and directed - humility is a useful learning tool for me. And no one has been rude to me, far from it.
There is a saturation point of information for anyone seeking help, for any condition, they have a right to say "enough". If well meaning information is still being pushed past this point, then it becomes counter productive. Similarly, the point at which I became a hovering, intense presence over small ailing animals, my parents were right to haul me away, no matter how quietly I may have been sitting there. If I want to help, these are good lessons to learn.
But cut and paste before you argue with me! This is like that GE conversation, where people kept attributing hugely inaccurate quotes to me, then arguing with their construct.
So everyone, just think positive thoughts, see your illness as a gift and think of yourself as a survivor, not a victim.
Kidding. Kidding above here.
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