Dealing with Hypersomnia

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SimonP
SimonP Online Community Member Posts: 9 Connected
in Coffee lounge
I am completely out of whack with sleeping. So far today I've spent over 14 hours asleep. I'm motivationally challenged too. Anyone have any ideas? 


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  • laurahc__
    laurahc__ Online Community Member Posts: 34 Contributor
    Hi Simon :)

    I really feel your pain, my sleep goes from one extreme to the other: I either don't sleep or I sleep for 15+ hours in a 24 hour period. 

    As hard as it is, I try to be strict with myself and get out of bed at a certain time. I'm on long term sick leave so enforcing a routine is difficult, but I try and be out of bed by 10ish and then I stay out of my room until the evening to avoid temptation of going back to bed. Whilst I don't bother getting properly dressed if I'm not leaving the house, I make the effort to get out of pyjamas, have a wash etc because it makes me feel more human and less zombie. 

    I also try and make sure that I have at least one task that I need to do everyday. That could be something like writing an article, or meeting a friend for coffee or boring adult admin. I know that I can't do it all in one day, but having something to do makes days more purposeful for me.

    Is there any chance that you're having a flare up at the moment? Despite what I've said, sometimes you've just got to listen to your body.
  • sleepy1
    sleepy1 Online Community Member Posts: 297 Empowering
    Good evening guys, yes I am the same and would say it is the worst symptom of my illness because it is impossible to plan anything or do anything normal.  I have come to terms with the pain and sometimes it is a blessing to blackout (as I call it) Even after 15+ hours sleep I wake up even more tired some days/nights, at first I blamed it on the meds but having ditched them for a while know they are not the problem.

    Most people do not understand the difference between feeling tired and suffering from CFS, we try our best to fight it but in the end you have no choice in the matter what your body decides to do or where it decides to do it!

    I have tried all sorts of supplements, energy drinks etc but nothing seems to work.  Out of the blue I get an odd good day where I end up going mental trying to play catch up only to find Ive overdone things and........You know the rest  :)
  • laurahc__
    laurahc__ Online Community Member Posts: 34 Contributor
    sleepy1 said:

    Most people do not understand the difference between feeling tired and suffering from CFS, we try our best to fight it but in the end you have no choice in the matter what your body decides to do or where it decides to do it!

    Oh my word, THIS! I don't have CFS and I would never pretend that EDS/fibro/arthritis fatigue is the same as CFS but it frustrates me no end when I'm having a flare and am exhausted due to that and someone is like "oh yeah, I'm tired too. Have an early night"  :#
  • SimonP
    SimonP Online Community Member Posts: 9 Connected
    Thank you for your responses. I think it is so difficult for others to understand just how the inability to stay awake mucks up every aspect of life. The next person to say 'I'd love to be able to sleep all day' will get my walking stick per rectum.

    I think it's my Parkinson's playing up and conspiring with all the other malfunctioning bits of my nervous system to make me shut down for a bit. Sleep is returning to a reasonable, if extended, pattern of 12/24 . 

    Once again, thank you


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