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Jason 2010 Illness duration and coping style in chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by shrewsbury, Apr 9, 2010.

  1. BEG

    BEG Senior Member

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    Fixed it. Thanks for the help with "Go Advanced" while editing. Also, thanks to someone for moving my thread.:Retro smile::Retro smile:

    Appreciate it. BE G
  2. Mithriel

    Mithriel Senior Member

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    When Ramsay spoke about ME he said that 50% of people just carry on much the same for years. (25% get better in the first few years 25% get progressively worse to severe disease).

    With the same illness severity and physical impairment, someone ill for a short while will be able to carry on in employment by giving up everything else and taking time off. After ten or twenty years few employers would be still putting up with it and people would be realising that they couldn't keep working and still have any life.

    I haven't read the full paper, just thinking how it could be true.

    Mithriel
  3. Esther12

    Esther12 Senior Member

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  4. Mithriel

    Mithriel Senior Member

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    That's an interesting article.

    About 1983 I saw a big key ring that said "I gave up hope and now I am much happier" I bought it and fixed it to my bag until it fell apart years later.

    No one else understood, but I realised that I was putting off living until the day I was "better". (just as well I never, eh :Retro smile:)

    I accepted that I was ill, we went on holiday rather than waiting till the time I was well, and I stopped feeling like a failure for not working.

    For me , giving up hope meant a rearrangement of my priorities. I concentrated on getting the best out of the here and now instead of always focussing on a future when things would be different. And, of course, ME is an illness where if you fight it, it gets worse and acceptance is the best way to improve.

    Mithriel
  5. BEG

    BEG Senior Member

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    Esther12, great article. Mithriel, thanks for sharing and well said. If I may, I'd like to sum it up in one word: acceptance, the key to peace and happiness amid such devastation.
  6. shrewsbury

    shrewsbury member

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    This used to be my signature:

    The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination.

    Marion Zimmer Bradley
  7. Mithriel

    Mithriel Senior Member

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    I think that "hope" can mean different things. In the quote, it is used as the opposite to despair and that sort of hope is worth keeping hold of, but in my life I was using it as the opposite of acceptance and it kept me fixed on a nebulous future rather than dealing with the present.

    So if you have a pile of debt you can hope that you will win the lottery or you can look at your finances and see what can be done, one sense or you can take a second job and hope you will be clear of debt one day as opposed to sitting down and crying about it all.

    Sometimes words are just confusing especially to ME brains :Retro smile:

    Mithriel

    I love your tag Brown eyed girl
    I have dark glasses that fit on top of my sunglasses! It still wasn't enough so I have a black out mask as well...... life with ME :rolleyes:
  8. Esther12

    Esther12 Senior Member

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    Personally, I'm quite happy at the moment, but only in a present moment, short-termist kind of way. The prospect of never returning to full health is pretty unbearable, and if I accepted that, I can't imagine I'd be able to be happy with the prospect of the rest of my life.

    I think 'happiness' can be used to describe all sorts of different things. There's a kind which can be achieved through adopting certain mentalities and psychological approaches to life, but there's another kind which requires the achievement of goals, contributing to others and society at large in a way which is not possible when you're ill in the way that many of us are.

    I tend not to ruminate upon the difficulties of being ill, and spend little time thinking about my own long-term prospects, so those difficulties don't affect my own present-moment happiness, but when considering my 'overall happiness' (however silly this concept may be) they need to be taken into account.

    I was just reading through me post, thinking 'How can I clarify this', when I saw this comment and decided to accept my current messy phrasing.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I agree, I have learned and am still learning to manage this illness after 7 years!
  10. Dolphin

    Dolphin Senior Member

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    OT: Sunglasses

    I need prescription glasses. I got sunglass covers that clip on but didn't find them so good as bright light could come in the side occasionally so wear the wrap-around ones when needed. I continuously wear a peaked cap to keep out over-head light. I tend to turn off overhead lights a lot of the time and have the blinds down to keep out reflections (but they still let in light).

    Anyway, to get to my main point, I got a wide 19 inch computer screen which is very bright. I was finding it difficult to sleep after using it, a problem I didn't have with older monitors. So anyway I wear sunglasses at night now when I'm on the computer. As if I needed more ways to appear eccentric!
  11. Dolphin

    Dolphin Senior Member

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    Depends what your goals are. I personally count my voluntary work for ME and my activism as fitting this.

    I'm not good at remembering exact quotes but there is one, which I think is well-known, about if you're happy at the moment, you can look forward to another happy day tomorrow. Like you say, that sort of short-term happiness may not be fully fulfilling; but it can help one live with disability (and a lot of other things one never planned for).
  12. Mithriel

    Mithriel Senior Member

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    I go to an MS centre so I know a lot of people with MS. Their attitudes are interesting.

    They would like a cure, but know that it would not undo the damage they already have so it is to help other people especially their families who are at high risk of getting MS.

    They don't care about becoming less disabled so much. Even though some of them are very physically impaired, what they hope for is to not get worse. As they adapt to a certain life they know they can cope, it is the uncertainties of worse disablement that is a worry.

    The one exception to this is that the ones who suffer from fatigue want it to lift. I think fatigue takes all the pleasure out of life like a chill wind sucks the warmth from you.

    (Tom I have this mental picture of you now, industriously typing away with your cap and glasses :Retro smile: I have noticed over the years that a typical ME person is often sitting a in a wheelchair, well wrapped up with dark glasses on. No wonder we can recognize each other!)

    Mithriel
  13. Esther12

    Esther12 Senior Member

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    My goal has always been global domination of some kind or other.

    I'd quite like to produce a comic book too.

    Generally though, any sort of sustained project has been rather out of reach. It's difficult to know to what extent I should push myself, and make sacrifices in my daily life in order to work towards some distant goal. People can be rather poor at this generally, and with CFS, the amount of time and energy we have available is so greatly reduced that achieving anything significant can often seem (and perhaps be) impossible. I'm gradually coming to accept I may never be crowned Supreme Leader of the Universe.

    re short-term happiness: I also think expectations are important here. That sounds like it might be the case with Mithriel's MS patients too. I've just been through a difficult couple of years (by my standards anyway - neighbor's cat gave us fleas, land-lord trouble, money trouble, roof leaks leading to loads of colds) which has now all been resolved (extra disability money, moved to a quieter and nicer place, no fleas!) and I'm sure I appreciate it all so much more after coming through a difficult period. Maybe I've now accepted that I'm a 'CFS patient' and recognise that, considering this, I'm rather fortunate in many ways? Maybe we're instinctively compare our situation to what we think we deserve?

    All the uncertainty that surrounds CFS makes this sort of mind management much more difficult though. What is it reasonable to expect at this point? With the history of quackery that surrounds CFS we can barely be sure about anything or trust any claim being made - I think this is a real psychological strain (and also one of the reason why so many doctors and patients like to assume that they know more than they can do at the moment).

    Amusingly, one of the reasons for this psychological strain is the prolonged history of trying to treat CFS patients by guiding them into adopting 'healthy' beliefs and thought patterns, without much interest in what is actually reasonable or true. Trying to prioritise what is currently thought of as 'mentally healthy' over an honest pursuit of truth is just not a sensible way to use psychiatry.

    Went a bit OT there.
  14. Mark

    Mark Acting CEO

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    What a great thread this is! Hope, despair, acceptance...such central topics for our mental and emotional lives. And indeed: we have been denied rational support on these issues not just from doctors and psychologists and counsellors, but by friends and family too - all of them poisoned in their understanding of us by a pernicious and unprovable theory. Truly, ideas can be dangerous...

    I find the Buddhist and other spiritual threads to be the best places to get good advice on these matters. An excellent alternative to CBT, I suggest...

    I'd like to share the story of something I did some years ago. It's just part of my own story, not something I'm recommending, but I was reminded of it by Mithriel's key ring - "I gave up hope and now I am much happier". That reminded me of the day I decided to deal with the torment I was feeling at the time by holding a private imaginary funeral for myself...

    For many years, as I approached and then passed through my thirties, I was tormented and surrounded by all my old dreams, the things I had wanted to do with my life at the point when I fell ill, the plans and ambitions I was still clinging to. As time went on, it was of course increasingly obvious that I would not be able to do all those things. I had big plans! I wanted to do so, so much! But a point came when it was obvious that I had to accept that not only was I never going to do hardly any of these things, but I had no reassurances about anything. If my condition deteriorated further, I could end up destitute without any hope of support or understanding. That was a reality I had to face.

    So I decided to give up all my false hopes. I reasoned that, even if there was an explanation for ME announced next week, it could be a decade before effective treatments became available, and the only effect on me would be to increase my chances that my own condition (which I assumed to be only somewhat related via the wastebasket) might at last come to the attention of doctors. At that point they could start investigating whatever I have, and I would probably have another decade or so to wait at that point. So I figured: I have this illness for life, and until the revolution comes, the system is going to do nothing whatsoever to help me. I had to accept those realities, for that seemed almost certainly the case.

    So I decided to start from nothing. For an evening I mourned my old life, and I said goodbye to the old me. I counted through my hopes and dreams, and imagined them all cut absolutely short, by my own death. I literally imagined myself standing over my own grave and lamenting all that I could have been. It was an absolutely draining emotional experience. Remember: I'm just saying this is what I did, not what I recommend!

    I have never regretted doing it. It marked a turnaround for me, as I began to feel better and cope better with my situation. Since then, for several years, I continued to remind myself that I am dead. I treated everything good that happened as a bizarre and unexpected bonus that shouldn't really be happening to a dead person. I reminded myself that since I am dead, I shouldn't get my hopes up too much, or expect anything much. At the same time, I gradually realised the vital importance of having at least something to look forward to: some small kind of hope. Even if that's the smallest thing, arranging something positive in the future, even weeks ahead, to look forward to, turned out to be crucial to happiness. So I began to make tiny little plans, to replace all the grand and optimistic plans of the dead guy.

    This was basically my strategy until I learned about XMRV, found this forum, and found out what a difference real hope can make. That was such an explosive impact that I wasn't ready for it at all, and I have had some turbulent times since. But it has transformed my life in an overwhelmingly positive way, even though the impact was so big that it has taken time to get accustomed to this new outlook.

    I have found that this path built in hope is indeed a preferable one to my path of despair, which I saw as a path of acceptance and a path of appropriately minimal expectations. Instead, I prefer a path of hope that sees communities of wonderful, wise people, sharing their common experiences and working together to help each other through this nightmare - and working together to achieve something better.

    No, I won't be emperor of the world either. I accept that I can't expect or guarantee to do anything huge. So I'm learning to concentrate on small discrete tasks, as a contribution to a community effort to transform all our little pushes into one big push. So: I didn't think I could manage to put together something like the Panorama petition and get that campaign going, much as I'd have liked to. But when I saw it happening thanks to the efforts of Sproggle and others, and building on the combined efforts of many people, I did manage to play a small part in it. With lots of people helping each other out, and filling in for each others' limitations, this forum is continuing to produce some wonderful outputs.

    That's what IslandFinn's signature means to me. I think we do have to accept our own limitations, face reality, and consider the negative side of the outlook for the future, and it can take a long time and a lot of emotion to come to terms with all that. But then, as we move on from that, we can start to build small seeds of new hope, find things that we can do, and for me, most importantly, find things we can do together to transform our common situation. That's the hope I feel now, and I got that hope from the WPI, and from the news of XMRV, but I'm going to try to keep that hope going no matter what the replication studies say, because hope turns out to be much better fuel for the spirit than despair, and we can create hope by working together to make our world change for the better.

    So: paving that road with hope now. Don't have time to go back and re-read the Mists of Avalon though, I've got other priorities just now...
  15. gracenote

    gracenote All shall be well . . .

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    What a beautiful post, Mark. I love your vision of community. Thank you for sharing.
  16. Mark

    Mark Acting CEO

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    Regarding the main theme of the thread, I think Gracenote is spot on with this observation (as always), and this highlights how some of the apparent differences between our experiences can be quite artificial. As our learned coping skills - and the restrictions we place on what we do - improve our lives, some of us can lose sight of how ill we are. I know I do: I am often thinking "I am basicaly better now, there's nothing much wrong with me at the moment" and then trying to do something 'normal' that I have cut out of my life - or just sitting on a sofa somewhere that makes me itch like crazy - and realising that nothing has really changed, my 'symptoms' are just the same, it's just that I have learned how to restructure my life to not trigger them any more. I also quickly realise that any significant physical exhertion does take its toll, just as before. Some of us may say "I have got better", others say "I cope better" and sometimes we are probably just expressing this differently when actually our reality is fairly similar.
  17. Dolphin

    Dolphin Senior Member

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    Have to say that I'm a big sceptic when somebody says they're better (in the sense of recovered) (not saying nobody can get 100% or close to it but somebody saying it isn't the same thing). Like you say, we can often re-structure our lives. That's not necessarily a bad thing as you don't necessarily want to think every moment of every day about what you can't do.
  18. Mithriel

    Mithriel Senior Member

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    Mark said

    This is a very profound point. I remember a talk I heard from Nigel Speight, a wonderful British paediatrician, who said that he found his child patients would say things like "I don't have any problems with walking any more" but when you asked why it turned out they had got electric wheelchairs.

    My home and lifestyle have become well suited to me over the years and I my friends are all ill so I thought I was doing quite well. Then one day my family all got flu and I had to cope on my own. I couldn't even make myself a cup of tea, never mind cook anything or get washed or dressed. The "extras" I do that make life worth living, some painting, going to the park, are only possible because someone else is helping me with everything else.

    It actually makes a mockery of the psyches' assertion that we are OVERSTATING how ill we are for attention or gain.

    Mark, your story of how you coped is very powerful.

    Mithriel
  19. Wonko

    Wonko Senior Member

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    what Mithriel said :D

    it does make me wonder what humanity could do as a species if they didnt waste all that energy on what consitutes "normal" life ;)

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