When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
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‘Managing chronic fatigue is all about pace — do not go for boom or bust’ | Dr Mark Porter

Discussion in 'General ME/CFS News' started by worldbackwards, Jan 27, 2016.

  1. Skippa

    Skippa Anti-BS

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    Doctors really are seeing patients who respond to GET.

    The problem is, they're not ME/CFS patients. They're either misdiagnosed, or merely have "fatigue" mentioned in their notes, which sadly equates to "CFS" in many minds.

    It all comes back to that damned elusive biomarker again...
     
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  2. Tuha

    Tuha Senior Member

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    I ask myself if it´s possible for ME patients to pace or to dont go through their limits. My ME is not that bad. I am able to work 4 hours a day, to have a walk without crashing and to do some social activities. I have also really good conditions to pace - I work at home, I have a good support from my parents (whenever I need something they live next to me),....but I go almost everyday through my limits. Sometimes because I need to work more, sometimes I want to have longer walk, sometimes I stay longer with my friends outside or I just check too much my computer. Sometimes you dont have another possibility and you have to go through your limits or often it´s simply that you are bored and it´s so difficult to just lay dawn for hours and do nothing. I think I dont know any patients who are able to pace and dont go through their limits.
    Do you think that if it would be possible to pace that the possibility to get better or even to recover would be higher?
    But I dont think that there are many patients who are able to pace - I think it´s not in our human naturel just to lay down and to rest. At least I am not able to do it.
     
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  3. worldbackwards

    worldbackwards Senior Member

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    I think this depends on how ill you are. When I was more severely affected, something small like having a bath would set me back 5 or 6 weeks or more. I didn't have many baths.

    But certainly when you get a bit better, it's much more difficult to keep that kind of control all the time. It becomes a question of how much you'll suffer and how quickly you'll recover, usually to the point when you can do it again.
     
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  4. Chrisb

    Chrisb Senior Member

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  5. worldbackwards

    worldbackwards Senior Member

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    That would be assuming I went anywhere for it to matter. :)
     
  6. Tuha

    Tuha Senior Member

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    I also had 2 years periode when I was mostly only at home. But during that time it was even more impossible to pace because even small activities could cause you a crash. It meant that you had to pace for hours and hours without doing anything. And who is able to do it? Except that your cause is already so sever that you are not able to do anything. When I got better the crash arrived less because not only I could do simply more but I was also more satisfied with my live and so I was more motivated to take a rest or just to pace.
    I think it would be interesting to see the % of improvement or possibly recovery if the people woul 100 % follow the level of their sickness and they wouldn´t go at all through their limits. I really dont know a patient who is that disciplinated.
     
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  7. jimmy86

    jimmy86 Senior Member

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    Absolutely. I tried to rest completely but it did not do a thing. The only thing that makes me feel better is stay within my energy limits. But this does not cure me, because the limits are stable.

    Edit: the only period when I can imagine resting is beneficial is at the onset of this flu-like illness.
     
    Last edited: Jan 28, 2016
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  8. Old Bones

    Old Bones Senior Member

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    When first diagnosed in 1990, I was told the status of ME knowledge/awareness was comparable to that of MS 25 years earlier. This resonated with me, because one of my parents' friends had MS, and even as a child I was aware of how poorly he was perceived. People who saw him walking very slowly, stumbling, or slurring his speech thought he had an alcohol problem.

    I established a 25-year marker in my mind, watching and waiting for ME to follow the same path as MS in terms of awareness, respect, and available treatments. Of course, we all know how that turned out. The deadline has passed, and most initiatives (at least those that present accurate information) still seem to be like "preaching to the choir".
     
  9. Tuha

    Tuha Senior Member

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    To stay within the energy limit is I think the best solution for all the ME patients. But is it possible to do it? I think almost all the patients go through their limits daily. I will repeat myself but it would be interesting to know if you stay within your energy limit during a long period (for example 1 year) if the chance for improving/ recovery is much better.
     
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  10. Mij

    Mij Senior Member

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    For some of us, feeling improvement and being able to do more over time is a spontaneous occurrence, it didn't necessarily come about because we improved our "sleep hygiene" or paced ourselves until the cows came home. It just happened to evolve that way- for some of us.

    For others, taking abx, av, diets and treating OI allowed them to do more.

    This whole idea that pacing and getting better deeper sleep is going to help us 'get better' in the end is false.

    My sleep is pretty good and I pace myself because I don't want to get worse.
     
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  11. Old Bones

    Old Bones Senior Member

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    Here's my experience. For an estimated three years, I did a better job of staying within my energy envelope, athough I didn't entirely avoid a few "Push/Mini-Crash" cycles. Nevertheless, I felt confident about my ability to add one activity to my extremely socially-isolated lifestyle. I joined a recreational choir made up mainly of late middle-age/early senior women -- no performances, just one two-hour practice each week. For the first three months, although I was usually drained by the end of each session, I didn't seem to be deteriorating.

    Then one evening, our usual choir director was absent. The much-younger pianist who accompanied our singing stepped in, and was very keen to show us his capabilities in choral direction. He significantly changed the format -- standing rather than mostly sitting, stretching exercises to get us limbered up, voice exercises (singing with vowels only, no consonants -- a real cognitive challenge) and no break mid-way through. I should have left. By the end of the session, I was spent. And by the following day I was in my first full-blown crash in several years.

    Needless to say, I didn't return to what I started calling "choral boot camp". I have yet to recover, four years after the fact. Granted, a few other circumstances contributed as described in my earlier post. But, when improvements after three years of usually careful pacing can be totally undone in one two-hour choir practice, pacing is clearly, at least for me, a management strategy only, and not a treatment or cure.
     
    Last edited: Jan 28, 2016
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  12. Tuha

    Tuha Senior Member

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    Actually for me it´s quite the same. The first 8 years I was able to do full time job and except sport I could do almost everything although I was more and more exhausted. Then I crashed and stayed for 2 years mostly at home. Then I started to improve slowly and today 8 years after that crash I can do part-time job, to go for a walk and to have a bit of social life. I dont know why I improved slowly - it was not because of pacing because how I said I am not able to pace too much. Maybe it just helped me that although I often went through my limits I didnt push it that hard and often like during the first years of my illness.
    My wondering is that maybe with pacing the improvement could go faster.
     
  13. Tuha

    Tuha Senior Member

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    that´s bad. It never happend to me that one single push through the limits caused me a really bad crash for a long periode - just for some days. But I have to be carefull to dont push myself regulary during some days because than I can crash badly. But I think this is the same for everyone
     
  14. BurnA

    BurnA Senior Member

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    This is what I think. This is a disease. Pacing and staying within your energy limit will help you on a day to day basis. However long term deterioration or improvement are completely out of our control. Ok unless you push yourself everyday then I'm sure it won't help, but I don't see myself getting better long term just by pacing or even extreme rest. If this were true then my problem would be that I am just tired.
    There is a biological aspect to this disease that needs to be addressed first and foremost.
     
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  15. K22

    K22

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    With the CFS definitions in the UK staying wide open, thereby diminishing the illness to fatigue and another symptom etc, I forsee this chirpy DIY management approach continuing to be the dominant narrative.
     
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  16. BurnA

    BurnA Senior Member

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    Yes. This is the single biggest problem with this disease - too many are still allowed to use the Oxford definition and not be criticized for it. It should be formally retired by all parties.
     
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  17. JaimeS

    JaimeS Senior Member

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    Right now I'd say I have mild M.E. No matter what, I can't exert myself beyond a certain point without suffering horrible consequences.

    The other day I had an article due and I was already feeling more ill than usual. I knew if I didn't do some of it that evening, it would only be worse for me the next day, when I would probably have to do what I hadn't done that night, while feeling worse. So I sat down and did three sections of a ten-section article. I could feel that it was way too much, but unlike before, I was actually capable of persisting (first time I've pushed in a long time). I finished the three sections, thought wow, maybe I really am getting bett -

    CRASH.

    It doesn't matter where you are in the illness. PEM is a central feature, at least for me, and no matter how much I pace, it seems to always be there.

    Like everyone, I normally avoid pushing as much as possible...terrified of moving backwards.

    -J
     
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  18. Richard7

    Richard7 Senior Member

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    This discussion of pacing is facinating to me.

    I have tried dilligent pacing, and tried to get the sleep right, etc etc but really ... well the people who write about this sort of stuff (Myhill) usually seem to assume something like a steady state in which you have enough energy to cook and shop and do the laundry etc. (or perhaps have someone to do it for you. I don't live like that. I cannot live like that. My energy envelope is such a small thing that it cannot contain all I need to do to get by everyday.

    You know that thing, back when you were healthy, where you would trip but manage to take a couple of odd unbalanced steps before righting yourself and going on your way. Well I feel like I'm usually tripping, and taking odd steps, occasionally falling heavily before struggling to my feet but never really getting into a balanced stride.

    For the last few days I have been trying to work up the energy to do some cooking. Yesterday I had enough energy to sit at the computer for a couple of hours (less than an hour at a time. I was reasonably alert but could not manage much time on my feet (minutes only). I'm not sure why, my POTS is about as bad as it usually is, the muscles in my feel and legs and hips hurt and twitch about as much as usual, I have not made any changes in supplements or anything I can control, but so it goes.

    And Its 5pm and I am drinking coffee and hoping that I will get that boost of energy to cook the meat I defrosted 3 days ago, and that I don't have to throw it out, again. I am doing this even though I know coffee does not really have this effect on me, and its just the best tasting variety of hope on hand.

    For me diet has been a major thing, and when I cannot eat the foods that seem to be right things seem to fall out of control in a bad way. (Though N=1, its just my interpretation of what is going on, the story that seems to explain whats going on and it may be wrong). So if I can push myself to cook three days worth of good food today I might be able able to rest till I have to cook in three days time etc.

    If I try to pace mysef, I don't see how I can get by. In december I inexplicably had more energy and the concept may have made morse sense. But january has been exhausting with feverish sensations and lots of days in bed. And I've had a couple of sleepless nights and my almost pattern of push rest rest push rest rest, has become cannot push, cannot push, cannot push, cannot push and I really need to.

    But if pacing is merely management and not something that makes us better, I can at least feel better about this failling.
     
  19. Richard7

    Richard7 Senior Member

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    yeah when I think about all the mad scrambling I do trying to just get by, or get some knowledge of CFS/ME that might help me get by, I sometimes think of cartoons I saw as a kid where people would run on logs floating on rivers. Some people reading this may well know this as a reality, to me its looney tunes. Still all that effort and all that energy spent in just trying to stay upright is familiar.

    But the metaphore I usually use is of treading water because the unstated but very real fear is of drowing.
     
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  20. Skippa

    Skippa Anti-BS

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    Totally agree with what's been said.

    I always think of it as "life finds a way".

    Life will always find a way to canker any best laid pacing plans.

    This is not a life.

    It is windy here at the moment. Say I'm pacing, and the gutter pipe falls down. I can go outside now and fix it, knowing that it will expend my energy envelope for the day, and lead to mild PEM for a couple of days.

    Pacing advocates will tell you to "leave it until you have more energy". What they don't consider is the fact that i t the meantime, the damage will get worse and the job I will increase tenfold. What started as "screw the drainpipe back against the wall" becomes "refit the entire gutter and replace any rooftiles that came down". Not to mention the collateral penetrating damp of unmitigated water flow when it rains.

    Bah. If you can pace and make yourself lunch, walk to the living room and sit down to eat, then realise you forgot your drink (brain fog lol) then you have to get up again to go fetch it, you just blew your pacing.

    Life always finds a way to throw a curve ball, and there is quite frankly nothing you can do about it.
     
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