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rest,rest,rest!?

Discussion in 'Lifestyle Management' started by justy, Sep 12, 2010.

  1. justy

    justy Senior Member

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    I am trying out a recovery method of resting until i feel better, as advised by Martha Kilcoyne in her book Defeat Chronic Fatigue Syndrome. I am also trying out Dr.Myhill's approach with testing and supplements. The testing showed mito dysfunction amongst others. She also says to rest until you feel better, only then gently increasing activity and to get 9 hours sleep a night plus a sleep inthe day - much as Martha suggests. I am a bit worried that i will end up feeling great, but unable to DO anything at all.

    I am just wondering if anyone has seen good results with this method. In the past i was going until i felt ill and then stopping for a while and thebn going until i felt ill etc.

    At the moment its on;ly been a couple of weeks and i have noticed that i cant seem to stick to early bedtime -aiming for 9.30.Also i am no longer walking at all or pottering in the garden which i did very small amounts of every day. I actually seem to feel more tired and when i do attempt something it seems harder! Dr.Myhill says this is because i am still puishing beyond my body's limits ( she has assesed me at 30% on David Bells (dis)ability scale, although i graded myself higher (50%)

    Just throwing it open really as i keep doubting if it is the right way to go. On the other hand i dont have much else i can try!
    Any input gratefully accepted!
  2. alice1

    alice1 Senior Member

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    I found that whenever I did nothing I was also more tired.I wasn't getting any circulation,my brain wasn't distracted and I felt more useless.
    I can understand you wanting to give it a try when you've run out of options but listen to yourself and if you want to be in the garden then that's where I personally think you should be.You find happiness there.
    Perhaps this is a good method for those who have been newly diagnosed..I don't know.And maybe you have been.
    Best of luck to you.
  3. justy

    justy Senior Member

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    Thank you for the reply. I only just been diagnosed but have been ill for many years, with a long remission in the middle back to normal(ish) health(for me)
  4. alice1

    alice1 Senior Member

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    Stick with it for awhile if you can.I'm sorry you reactivated again that would make anyone impatient with any suggetions..It would for me.
    I really hope you get back to your remission asap.
  5. sphynx on roundabouts

    sphynx on roundabouts

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    Hi Justy,

    I'm glad for you that you have finally gotten a diagnosis after many years as it's a really helpful step in finding out what can be of benefit to you. Based on the advice of many of the top ME/CFS researchers and doctors along with patient experience it would appear that you are on the right track. There is such a huge vacuum of energy in the body when we keep pushing ourselves up to and beyond our limits and the damage this causes to the mitochondria is a heavy load to turn around. Perhaps you can find a happy compromise where you can maybe sit in the garden for a little while instead of pottering or other things like that. Maybe when you are resting but feeling a little frustrated with being still you can remind yourself that your body is very busy doing its repair work. The times we fight our hardest in this illness are the times when we are still and calm in a restful environment. Also, resting will help to maximize the benefits or the supplements you are taking.

    Each of us has to find our own route through this but resting is something I wish I had understood 20 years ago. Good luck with finding the route that's best for you.
  6. Sasha

    Sasha Fine, thank you

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    Hi Justy - I'm in a similar position to you (ill for years, major remission in the middle, v. disabled now) and sympathise with the dilemma over how exactly to balance rest and exercise.

    When I was confined to bed for seven years during my first bout of illness, I used to sit up in bed and was very reluctant to lie down because, I thought, that would mean that I was "really very ill" (I know! I know!). Nevertheless, I would get exhausted and be forced to lie down for a while. As soon as I could, I'd sit up in bed again. I could also push things so that I could go out for a while but then really pay for it later (we all know the story).

    Finally, having read Bruce Thingummy's "Recovering From ME", I decided to lie down until I wasn't tired and then to go for a walk to the end of the (short) drive and back, and then rest again until I wasn't tired. I figured that I need to walk at least a little bit because the lymph system (I read) has no pump like the blood system has the heart and relies upon muscular movement to get pumped around your body; and the lymp contains "immune messengers" that you want moving around your body (I'm no biologist but that explanation made sense to me).

    The first time I tried this strategy, I had to lie down for three hours before I felt normal. I was really shocked it took so long. Then I went for my short walk and had to lie down for about another hour before I again felt normal. I continued to follow that strategy, resting huge amounts (lying flat, not sitting up in bed) and very, very gradually increasing the amount of my walking. Measured in any conventional way, I was probably doing less and less in terms of overall physical activity (this wasn't GET) but getting a great deal more rest and a small dose of healthy activity.

    Eventually I improved - very slowly - and relapsed a few years ago after not realising I was still ill and pushing too hard. I have found it very hard to remember the lessons I learned then - your post has helped me remember!

    Coincidentally I've got a bug at the moment and have been really struggling with the basics of daily living (I live alone without a carer now). Thinking about this stuff has made me decide that I'm going to spend more of my income on good-quality, ready-prepared food so that what little energy I have during the day can be invested in my recovery, not on food preparation. We get into habits of how to do things and this thread has been a helpful prod to me that I need to do some rethinking.

    Good luck with your new strategy! I think, based on my experience, that it is worth a go.
  7. curry

    curry Senior Member

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    I had similar experiences.
    And I came to the conclusion that all this resting is not for me.

    I need some light weight training and walking every other day to help my body to recover - the complete resting, as suggested by some CFS Doctors, made me even more ill. (I felt depressed.)

    If you only lie, sit the entire day, probably on your own, then I don't know how not to get feeling miserable. :worried:

    In my opinion it is very important to stay happy and mentally balanced, which will have a beneficial effect on your immune system and the overall recovery.
    So, if your gut feeling is telling you to do some pottering in the garden, then do it...

    Best wishes,
  8. Esther12

    Esther12 Senior Member

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    I don't think that anyone really knows what is best.

    If you enjoyed pottering in your garden and didn't feel like it was making you worse, then I'd keep doing it.

    I think it's good to really relax your body and think in an utterly short-termist and selfish way "What would I like to do now?". I try to to break up periods of activity with periods of rest - but I'm still unsure about that.

    When we all know so little about what causes CFS I think it's a good idea to focus on enjoying yourself - at least then you'll have some fun even if you don't get better from it.
  9. Wayne

    Wayne Senior Member

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    Hi Curry, Hi All,

    This exercise thing can be such a delicate balance. As Sasha mentioned, out bodies need movement to stimulate the lymph in our bodies (BTW, our bodies have more lymph fluid than blood in volume, but no heart to pump it around). But sometimes we just don't have the energy to do even a minimum of movement.

    Curry's points above reminded me of a story I read recently. Apparently, a monastery of monks was "evaluated" to see if things were running as they should. It was noted that the monks chanted up to 8 hours a day, ate a light diet, and slept only 4 hours a day. The "evaluator" thought that those 8 hours of chanting might be better used doing something else.

    But when they stopped their chanting, they soon began to grow lethargic, and began needing much more sleep. The "evaluator" decided this was because they weren't eating enough of the proper foods, and replaced their light diet with a more traditional one. Soon, the monks began to get sick.

    After things didn't improve, another "evaluator" was sent in, and decided it might be best if they went back to their original routines of chanting, eating and sleeping. Not so surprising, it worked, and things went back to a harmonious normal.

    The reason I'm mentioning this story, is I believe it's important we all find at least some "little things" that will help keep us as physically, mentally, emotionally and spiritually balanced as possible. Though it will require some energy to do some things (and should be done judiciously), in the end, they may actually give us more energy back.

    Obviously, this is a very individual process for all of us, and will vary considerably from day to day. Personally, I think all people, whether sick or not, should always be on the lookout for things that that can uplift us us in some manner. This is ever more important when we are ill.

    Justy, one thing I try to do is tune into my own rhythm when choosing what to do or not do. I try to incorporate a lot of factors in my decisions, but these days, I usually just decide to "go with the flow". I've learned not to get too hung up on "do's and don'ts". I think I'm choosing to take a less stressful middle path, and I believe that is what will turn out to be best for my health.

    All the best in finding a rhythm that works well for you.

    Best Regards, Wayne
  10. Mya Symons

    Mya Symons Mya Symons

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    I have said this before and it seems crazy, but I found I do better when I do not sleep more than 7 or 8 hours per night, except on weekends. Seven is better. For some reason when I sleep more than 7 or 8 hours a night, I get the dizziness, nausea and fatigue when I stand up, but I do not notice it when i get less sleep. I catch up on my sleep during the weekend, so this is how I spend my weekends (being tired, dizzy, nauseous, and in pain). Personally, I do not think I would be able to work if I slept more than 8 hours a night on the weekdays. Another reason may be that when I go to work, I have to get up and move around despite the fatigue, dizziness and pain. I think this gets the circulation going more. (Plus I take a lot of sudaphedrine, which I think helps because it thins the blood vessels) A little off topic-I just realized today that when I go to my bosses cubicle to talk to him I always squat down close to the floor and balance on my feet. Today he asked me why I do that and I told him I did not know, it's just a habit. It is really because if I STAND in one place for too long I get dizzy and loose my balance. I had gotten so used to it, I didn't even realize anymore that I was doing it. Weird.
  11. curry

    curry Senior Member

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    Very nice story about the monks, thank you. :Retro smile:


    Hi Mya,
    Probably it is because the sleep phases of CFS people are disturbed, they're either in the wrong order or not intense enough...
    What you may consider is to take sleeping pills. I was against to take any, until very recently when I discovered that not all pills are addictive. Since then my sleep has improved greatly. This as a suggestion, it may help you.

    Sorry for off-topic.
  12. SOC

    SOC Moderator and Senior Member

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    The rest issue was problematic for me, too. It is for all of us, I suppose. The best, by far, pacing or lifestyle management technique for me started with the anaerobic threshold testing by Dr Black at Hunter-Hopkins did. I'm fairly certain this was based on some early work out of Pacific Labs -- before they were doing the two-days-in-a-row tests.

    As is true of most ME/CFS patients tested, my anaerobic threshold was quite low. Dr Black recommended I wear a continuously reading heart monitor set to alarm when my heart rate was just below my anaerobic threshold. She recommended that every time I reached my anaerobic threshold, I immediately stop and rest -- sit or rest supine, as needed.

    Let me tell you, it was a slap upside the head. Even though I thought I was taking it very easy, I was operating above my anaerobic threshold about 80% of the time. Climbing a short flight of stairs required a sit and rest halfway up. Walking from the livingroom to the kitchen put me over my anaerobic threshold unless I walked v-e-r-y s-l-o-w-l-y. Virtually anything I tried to do put me over my anaerobic threshold. I thought I was taking it easy because I wasn't excessively tired after these activities, but it turned out that I was pushing my body much harder than it could handle.

    I had a very difficult battle with myself moderating everything I did to stay below my AT. Although I seemed much more disabled because I could do no housework, or cooking, or stairs, or anything resembling normal walking, I finally started having fewer and fewer flares, much less muscle and joint pain. Over a period of a couple of years I started getting a little, tiny bit better.

    So the result was that I had minimal physical symptoms as long as I worked within my body's very, very tight limits.

    I think learning the reality of my body's poor function, rather than depending on some combination of guesswork and wishful thinking, helped me to avoid doing more damage to my body. And I didn't feel like death warmed over all the time.

    So, even though I became very much less active, I think the AT testing and the heart monitor was the second best thing I've done to deal with ME/CFS. (The best thing is Valcyte, which is helping me a lot.)

    The trick, of course, is to get AT testing from someone who knows something about ME/CFS. :rolleyes:

    And yes, even with Valcyte, I rest A LOT.

    So, I'm in the lots of rest camp. I have never had the kind of success with it Martha Kilcoyne did, though.

    The degree of rest necessary may depend on where we are in the illness progression. Or maybe it's strictly an individual thing. I think AT testing and HR monitoring are the best way we have now of finding our own body's limits.

    I doubt there's any single answer to the rest question. :(
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wing it! i say. If u feeling like doing something then do it, if u dont then rest, eventually most people find their boundaries. Obviously dont go overboard and try run marathons. Dip your toe in the water and see how u react and recover and then go abit deeper etc we all have days where its time to vegetate which can turn into a few days etc. After awhile with this illness we become very good ar reading our bodies.

    cheers!!
  14. Unfortunately we have different exercise ability and some of us are very prone to relapse after exercise and those who can exercise without too much effect cannot understand those of us who really can't do much. We have to stop way before we feel tired as sickofcfs says. If I do too much I never know until 24 -48 hours later and then can have awful rel[pases and be very sick for months after. I found that I need to know what I'm doing every day and not do any more, then slightly do a very littel bit more if I feel ok for a few weeks and see how it goes. They say there are at least 10 different forms of CFS and some of us have this very debilitating form of relapse after exercise really badly - advice to go out and do your thing when you feel like it has lead many of us to years of lying on the bed wishing we hadn't listened to that advice.
  15. ~ SummerRaine~

    ~ SummerRaine~

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    I'm not so sure about dr myhill, she seems to be unrealistic in her approach in that she says that if everyone follows her treatment plan to a T, they will recover. I think this is somewhat simplistic, incorrect and cruel, especially since no actual cause of cfs has officially been identified, she can not say that her way is a sure fire cure. I don't agree with her advocating eating red meat either, it has known inflammatory agents in it and is widely not recommended for anyone with a chronic illness. Most other cfs specialists have a more realistic approach to the road to recovery, and know that even model behaviour doesn't always evoke recovery, simply because it's not yet our time.

    The best cfs specialists recommend staying within your limits, not under them and not over them. Your body appears to be telling you that you are currently going "under" it's limits, which is why you are feeling worse. It is generally accepted that daytime sleep is not at all good for cfs because it makes sufferers even more tired, a 30 minute power nap is what is recommended. I have found this myself, if I have a sleep during the day I feel awful. Resting can be as simple as sitting outside in the sun just soaking up the sun, going for a nice ride in the car (not driving yourself), laying on the couch with your eyes closed, doing some light stretches and even watching your favourite movies. It's important to keep some level of activity up otherwise it will lead to deconditioning which will make you feel worse when you do start to get more active again. Sorry that sounded like a lecture! :D . Good luck on your road to getting back to better health. I also found this cfs self help website really good to :) http://www.cfidsselfhelp.org/
  16. Esther12

    Esther12 Senior Member

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    It doesn't sound crazy at all. That's very standard sleep advice - that 7-8 is opitmal for most people. I find that I feel better when I get more - seven leaves me feeling pretty shattered, but I don't think we should assume that everyone will feel less tired when they get more and more sleep.
  17. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    For me, 7 hours sleep would be like 2 hours sleep (or less) for a "normal"- and maybe following 2 days of sleep deprivation! Seven-eight hours of sleep and my muscles are tight, and I am practically in a half coma all day long. 10-11 hours sleep, and muscles not as tight and I am usually atleast able to keep my eyes open most of the day, even though I still feel dead exhausted.

    If I ever find and start a treatment and my sleep starts to improve, and I think I will know I am on the right track. I really feel that inflammatory cytokines need to be addressed. But how?
  18. SOC

    SOC Moderator and Senior Member

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    I tried the not sleeping during the day plan for years. And "power napping" is laughable for me. If I fall asleep and then have to wake up in 30 minutes, I am completely wasted. It's much worse than just staying awake. However, shorter naps do work for my daughter, who is less ill. Both of us would be slowly slipping backwards if we didn't nap during the day.

    During the years when I bought into "It is generally accepted that daytime sleep is not at all good for cfs because it makes sufferers even more tired," I was like dead woman walking. I spent most of my life in a fog. My memory was shot, my cognitive abilities were terrible -- it was like being in a constant flare. It probably WAS being in a constant flare. My PCP prescribed Provigil, which did sort of keep me awake, but I was just as nonfunctional and miserable.

    I read Martha Kilcoyne's book. My husband and I decided to take 6mo-1yr and try getting me as much sleep and rest as my body seemed to want, regardless of worries about deconditioning and "daytime sleep is not good for cfs". The other program wasn't working, so what the heck.

    I slept at night until I wake. No alarms or prescribed sleep hours -- just sleep until my body thinks it's time to wake. I went back to bed when I was having trouble staying awake, about 1:00pm. If I fell asleep (which I always did in the early days), I slept until I woke -- about 5 hours in the early days.

    As the months went by, I could stay up longer by a couple of hours, and the length of my "nap" varied between 3-5 hours. It wasn't much of a life, I admit, but when I was awake I felt like a human, not a zombie. I was able to tutor again, if only for a couple of hours in the morning.

    My husband and I decided the rest plan was working, and I've stayed on it since. I sleep until I wake up in the morning -- my body wants 7 hours at night, no matter what. Then I "rest supine" in the afternoon. If I don't fall asleep in an hour, I get up. If I fall asleep, I sleep until I wake, anywhere from 1hr to 5 hrs. The length of time I sleep seems to correlate to my general state of health -- if I'm going well, I don't fall asleep, if I've been overdoing a bit or have a cold or something, I sleep for 5 hours.

    I won't say this works for everyone. I think the amount of rest/sleep needed may be a very individual thing. What I can say is that I bought into the fighting my body rest plan for years and just kept getting worse. When I started listening to my body, I started feeling better.

    I suggest that people who are struggling with the rest issue make a commitment to one method or the other for 6 months or so and see how they feel. Not much else we can do with so little real scientific evidence on either side. **sigh**
  19. L'engle

    L'engle moderate ME

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    I've been resting about 14 hours a day lately, starting right when it gets dark out in the evening. I've been able to do a bit more exercise with less consequences and felt less ill with the extra rest. But everyone is different. I feel much worse on less rest than that. I get about 10 hours of sleep plus a few hours of lying down. A lot of this is to do with OI in my case. The time lying down recharges it, and shorter activity times mean that it doesn't run so empty by the time I rest again. Interesting about the aerobic threshold... I bet we are all pushing much more than we even know, since we're used to feeling resistance when we do simple things.
  20. SOC

    SOC Moderator and Senior Member

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    Have you thought about Dr Pall's protocol? I had a fair amount of luck with it.
    http://aboutmecfs.org/Trt/TrtPall06.aspx

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