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MEA website survey for February on daytime napping

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Feb 3, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    DAYTIME NAPPING - TAKE PART IN OUR LATEST MEA QUICK SURVEY

    If you nap in the daytime, then our quick survey for February is for you.

    Visit our website at www.meassociation.org.uk and scroll down a bIt.
     
  2. charles shepherd

    charles shepherd Senior Member

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  3. Cheshire

    Cheshire Senior Member

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    How on earth could Vincent Deary and his "persistant physical symptoms" lousy theory bring something positive to an ME/CFS study?

    And above all, V Deary's attitude towards patients is the embodiement of paternalism.
     
    Last edited: Feb 3, 2015
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Sasha and Sherlock like this.
  5. A.B.

    A.B. Senior Member

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    Daytime napping is a strategy to deal with energy reserves that are too low to last for a whole day. It is the most normal thing for a sick person to do. Everyone who has had a nasty flu will be able to relate to this.

    Of course the behaviorist interpretation is that daytime napping induces fatigue.
     
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  6. lansbergen

    lansbergen Senior Member

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    Do they not know farmers used to nap after lunch and that was a healthy strategy?
     
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  7. Valentijn

    Valentijn Senior Member

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    Does napping include laying down to rest but not falling asleep? It's a pretty obvious tactic for coping with OI.
     
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  8. Mij

    Mij Senior Member

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    I generally can't nap if I go way over my energy envelope. I'm stuck in a wired state and feel terrible. The less I do the better I nap.
     
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  9. peggy-sue

    peggy-sue

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    I never nap. I have never been able to.
    I have hyposomnia, not hypersomnia.
     
  10. Debbie23

    Debbie23 Senior Member

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    Me neither. As a general rule the more ill I am, the worse I sleep.

    I used to sleep round the clock when I was first ill, 24hrs or more at a time just totally unable to wake up. My mum says she used to come in and listen to me breathing to check I was still alive. Now, so many years later on while I very occasionally get that now, as in sleeping for 24hrs totally unable to wake up, it's usually the complete opposite. Despite the constant exhaustion I often struggle to sleep at all. I'll sometimes shut my eyes to rest but I usually find it very, very hard to drift off to sleep in the day time, night time too, but as a nap mid waking cycle especially.

    And it also seems to be the case for me too that the worse I feel the harder I find it to sleep or the worse quality sleep I seem to have. On the odd occasions I do manage a nap, typically because I just utterly exhausted and literally cannot keep my eyes open and they feel like they have lead weights attached to them, I invariably wake up feeling worse both cognitively and physically, at least for an hour or two after, just like I do when I've been asleep properly. It always takes me several hours to feel better after sleeping as a rule. It's very, very rare that I wake up and feel better for having been asleep.
     
  11. Mij

    Mij Senior Member

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    @Debbie23 it changes over the years for me too. It seems (in the 23yrs of being ill) that my immune system has become deregulated(?) (according to various testing) in the last 12yrs which causes my sleep to be more interrupted.
    I try not to overdo so that I can at least lie down and feel rested. It's a difficult balance isn't it? do too much=sleep/nap less=feel wired . . . do less=sleep/rest more=feel better.

    Another thing for me, is that if I can nap or lie down in the morning hours I can feel more productive for the rest of the day, but if I nap in the afternoon I feel sore/ugh when I get up again. I think it may have to do with low cortisol levels in the morning when I wake up.
     
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  12. Debbie23

    Debbie23 Senior Member

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    It is so hard to get the balance right, it agree! I already have sleep reversal most of the time so it's another reason I try not to sleep in the day as I'm always hopeful it will mean it won't stop me from sleeping at night. Not that, that line of thought ever works out! :)

    I tend to feel more 'human' in the evening, especially the early hours. It's strange, I can feel like a zombie all day then I have a spell in the evening/ very early morning where suddenly I feel a lot cognitively better. This happens irrespective of if I've had a sleep/ nap in the day or not. It's annoying because I'd love to get into a 'normal' sleep pattern but I'd resent loosing the few hours of any day when I tend to feel a bit better with cognitive symptoms.
     
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  13. duncan

    duncan Senior Member

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    With all due respect, I fear this to be another dangerous survey. No matter the results, napping and all its bad connotations (and few of its good) may be associated with sufferers of ME/CFS, along with a growing list of qualifiers like lazy and delusional. It may not be looked at in terms of how napping deviates from norms in ME/CFSers, and what that might signify, but, rather, just that ME/CFSers nap a lot - or complain about napping, too. Craft the abstract as well as you might, I suspect the take away for many will be two words: "Nap" & "ME/CFS."

    It's like taking a survey of obese individuals and asking how many times a day they snack. Not eat, snack. The goal may be to see what underlying mechanisms are at play, but that won't matter.

    Not that using the word sleep instead of nap would make all that much difference, but it might mitigate the damage a smidgeon.

    Exhaustion, sleepiness, weakness etc are all telltale signs of infection or immune dysfunction. But what is being emphasized here, imo, will simply serve to re-enforce dangerous stereotypes. Regardless of the findings, I worry that healthy people will read "Lazy freeloaders complain about nap time."
     
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  14. Sasha

    Sasha Fine, thank you

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    It's rare that I nap in the daytime but when I'm absolutely forced to by overwhelming sleepiness (maybe a dozen times a year), I feel like death immediately afterwards and for some hours after that. Very ill.

    @charles shepherd, is there any indication as to why a PWME might feel like that?
     

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