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A "going to bed" question.

Discussion in 'General ME/CFS Discussion' started by Shell, Oct 7, 2013.

  1. Shell

    Shell Senior Member

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    It just so happens that I've met a couple of people who have either gone into what looks like complete remission from ME or are doing a hell of a lot better than me with ME. (If I have ME, which, of course I still don't really know)
    Anyway, talk to them for a few minutes and what I get is the "I went to bed" description or "I go to bed every day" from one friend.
    I didn't go to bed - had baby and other kids to take care of and even though I lost my four jobs I did manage to complete my MA (not sure how!) .
    Anyway each time I meet an "I went to bed" person i wonder if I scuppered my chance of remission by not going to bed.
    I know Nancy Klimas has said in the past that the best chance of remission is with "enforced bed rest".

    I know it's a bit late - but, is going to bed the answer? If so, can we spread the news so that less people end up like me?
    Allyson, aimossy and rosie26 like this.
  2. rosie26

    rosie26 Senior Member

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    I was too severely ill not to go to bed Shell, I wouldn't have been able to look after children. I could hardly sit, let alone stand. Bed rest is crucial in Severe M.E, but you have no choice anyway, the body collapses itself in severe M.E
  3. SickOfSickness

    SickOfSickness Senior Member

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    There are too many factors to know.

    It would be unlikely for bed rest to hurt (make them worse) and it is likely to do some good.

    I don't think it would "cure" most, just some of them. In my opinion it only cures the ones whose immune systems got overwhelmed by too many viruses and was too weak. Then their immune system strengths and gets some of the viruses under control again.

    But I think in many ME cases we have something wrong in our methylation, mitochondria, gut absorption, not getting into the deep restorative sleep or staying there enough, etc so strengthening the immune system alone is not enough. We have to fix that process which is not working. It seems like many have low blood volume after a time of being infected too.
    Shell and aimossy like this.
  4. Esther12

    Esther12 Senior Member

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    Do what you feel like IMO. I don't think it's worth imposing bed rest upon yourself as a treatment in the expectation that this will lead to recovery.
    Firestormm, Shell and aimossy like this.
  5. meandthecat

    meandthecat

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    my experience was of a middle path, just trying to stay afloat. I felt awful if I did anything and just as bad If I didn't so like a small creeping thing following the edge of a leaf I tried not to plunge to either side.

    I speculate as to whether I might have improved more quickly if I had rested more but I have learned to follow my intuition and for me it was right. I guess it was a traditional approach as pre 1940's medicine didn't do much other than support the patient until they either healed themselves or died. So it was like that but without the support.

    Marvellous the way things have moved on.
    Ruthie24, leela, peggy-sue and 2 others like this.
  6. Shell

    Shell Senior Member

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    Thanks folks. I s'pose I am asking because I am finding it harder and harder to function. I wedge myself upright sometimes in the corner of the sofa, I've got a more supportive wheelchair - but am increasingly too ill to use it.
    In some ways I think the wedged approach is better than bed where I can't get the same physical support. (I wonder if that's why so many people get accused of being couch potatoes)
    I just worry I'm heading for bedbound - or even sofa bound and it scares me. rosie thank you for your response; I have to remind myself of that - it's not me being lazy it really is that I can't do it. (No one's calling me lazy other than me).

    meandthecat your description is exactly how it's been for me. It's walking a narrow tight rope. - or crawling along one!
    Allyson, peggy-sue and rosie26 like this.
  7. peggy-sue

    peggy-sue

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    I've heard the odd tale about somebody young, just diagnosed, managing to get 6 months of complete bed rest, waited on hand and foot, at the start, going on to make very good recovery.


    I'm not sure it would do much good if you're older or have been ill for a lot longer already...

    Wedged is good, Shell. I like wedged on the sofa too.:thumbsup:
    Shell likes this.
  8. ukxmrv

    ukxmrv Senior Member

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    Dr Ramsay used to say about his ME patients that the best prognosis was for the ones who could rest up at the start.
    Sadly for me I didn't know that until it was too late and I was "encouraged" to do an exercise program.

    "The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis."
    taniaaust1, MeSci, jeffrez and 6 others like this.
  9. peggy-sue

    peggy-sue

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    I had to look after my Dad - I ended up driving myself slowly, headfirst, into the ground.
  10. Keela Too

    Keela Too

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    I'm about 18 months ill, and not recovering despite reasonable resting.

    Exertion makes me worse, but resting has not made me any better!

    After sudden onset, I spent 2 months flailing around looking for answers, before a doctor suggested "chronic fatigue" - googling that took me to ME definitions and I realised that this was my problem. (A private consultant confirmed it later.)

    So I immediately worked on the premise that I should NOT push myself, and to avoid GET if offered. Luckily the Occupational Health Dr I first saw through work also impressed the rest angle.

    So I had good advice from the start, and feel I have rested as much as I could all the way. Also, I was lucky to have few stressors (mortgage paid, hubby in good job) and so it would seem I had put everything in place to recover.....

    But it ain't happening...... Gradual decline is still a concern and very frustrating.
    Valentijn likes this.
  11. peggy-sue

    peggy-sue

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    Keep on resting. :thumbsup:

    The "critical cut-off point"seems to be around 3 years - you're only @18 months.

    If you are declining - you are still trying to do too much.:love:
    Little Bluestem, PennyIA and justy like this.
  12. Keela Too

    Keela Too

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    It seems to be all I ever do... pull back. Ho hum.
  13. peggy-sue

    peggy-sue

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    I prefer to call my resting "positive inaction".

    It helps me not to resent it, or feel bad or guilty about it.

    It makes me feel I am doing something, not doing nothing

    I know that if I do enough - I can do something nice later. :)

    (I even automatically referred to it as doing it in that last sentence. :D )
    taniaaust1 and leela like this.
  14. Shell

    Shell Senior Member

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    That's what happened to me. I was losing muscle in my dead leg so the docs pushed me to walk as much as possible. I would crash out from walking around the block and feel guilty - that I wasn't trying hard enough - when I just couldn't do the walk every day. I went from walking (with crutches) around the block to needing a wheelchair from the moment I leave the house and finding it difficult to walk around the house.

    I was buying into the "nothing wrong really" message so much I had two more children after I got ill; out of 5 pregnancies. I don't regret having the girls - I love them to bits, but I often wonder if my 8 year old in particular has paid the price as she spent so much of the first three years in and out of the Children's. I think I said before how I nearly lost her just after her first birthday.
    She's doing fine now - though I doubt she'd ever manage in a school setting as she still needs rest and more fluids than the average kid.
    I just expected to be a "normal" mum - and I'm not. But they are fine about it, bless'em.

    peggy-sue I think caring for a sick adult is much more physically and emotionally knackering than taking care of a baby or two even a sick one like my dd.
    I love "positive inaction" LOL

    Keela Too Learn from our mistakes and do as much "positive inaction" as possible. That includes being careful about how much reading you do. I went through a long phase of only being able to read the kid's books.
    And good luck - :thumbsup:
    peggy-sue likes this.
  15. Keela Too

    Keela Too

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    This is the sad thing... I've not worked since onset. My children are grown - and the one left living at home is really helpful.
    So honestly I am not doing much at all.

    Right now I barely do any housework, and I sit most of the day on a comfy recliner chair reading or dozing or cuddling the dogs.

    I sometimes cook dinner, I sometimes drive to meet a friend, and I sometimes "walk" the dogs from my mobility scooter.

    I enjoy it when family all call round for dinner, but I let most of the conversation float over me.
    I don't walk more than about 100 steps in any 15 minute period and only about 800 steps a day. (Thanks Fitbit)

    I probably spend too much time on the internet. :(

    To do LESS would mean never leaving the house.

    And truth is the reason that I'm resting is not because "I can't do things".
    I CAN do them and look & feel just fine at the time!

    I never have pushed to the point of "can't". I have sometimes gone and done things (agility with my dog) despite very minor warning signs - which if I'm honest I would never even have noticed in my previous life. (I've abandoned agility now for the winter ;) )

    So resting more that I am already, is such a faff.
    And I think getting outside on my scooter with the dogs, or meeting my friends is good for me too.

    Sorry - I've found each step downwards hard. BUT this one is a stinker!
    Shell likes this.
  16. Keela Too

    Keela Too

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    Positive Inaction... Like that phrase! :)
  17. peggy-sue

    peggy-sue

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    Keela Too - there is a lot of variation in this disease - especially at the beginning.
    It does sound as if you are managing to do a fair bit of inactivity already - well done.:thumbsup:

    It was a bit of a stinker of a summer - (I'm noting you're in NI) - all horribly hot and humid - that can be incredibly wearing - being over in Eire at the hottest did me in for the whole season.

    I know I was loosing minerals - depite taking my magnesium, I ended up with RSL and cramps.
    I couldn't sleep for the heat - often waking up soaking with sweat.

    There could be all sorts of reasons you're on a downer right now - but I'm sure it will improve, especially if you can keep your inactivity up.:hug:
  18. Keela Too

    Keela Too

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    I'm a cold biddy - I enjoyed this summer.
    Also we live in a very old stone built house, so there is ALWAYS a cold room to retreat to ;)

    Keeping my inactivity up..... :sleep:


    :p
    rosie26 and peggy-sue like this.
  19. Snow Leopard

    Snow Leopard Senior Member

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    It's just the luck of the draw, too many "what ifs" to be meaningful. At least that is what I tell myself. ;)
    Barrie, rosie26 and WillowJ like this.
  20. peggy-sue

    peggy-sue

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