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In bed by 9 or suffer the consequences

Discussion in 'Sleep' started by Van_girl, Nov 29, 2016.

  1. Van_girl

    Van_girl

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    I have had CFS/ME for at least 10-15 years. I used to hike and bike long distances and now can only manage walks (but at least walks still). Like many I am limited in many ways activity wise, but what I have not seen mentioned much is how badly my body shuts down if I go to bed just a bit later then usual. I have to be in bed by 8:30...latest 9:00. If I get caught out at an event and go to bed just a bit later, I crash. I can literally feel a switch turn off. It starts with me losing my voice, my breathing gets tight, and as it gets later I get shaky. I can feel a pulsing in my muscles. Worse of all is that if I miss my "window" I cannot fall asleep without a sleeping pill. The next day I am a mess, hoarse voice, tired lungs, exhausted, slightly fluish, shaky. I can't go out, travel, etc for fear of this happening. Also happens if my sleep is interrupted. Does this happen to others? Why would this happen?
     
    rosie26 likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    I'm the same but in my case its not a need to be in bed by a set time but I can only last so long awake and up without it causing me issues, so I need a shortened day. As soon as a "I need to sleep" hits. I have to be in bed with everything completely quiet or it crashes me and I wont be able to get to sleep hardly at all if I don't react on this nearly right away.

    The other week I had my brother-in-law visiting when I got one of these "need to go to bed and sleep" events so was trying to get him to immediately leave. Unfortunately it took him 30 mins before he left and by then I couldn't sleep at all. I was then wrecked for several day which was the outcome of not being able to go and sleep when I had to do so.

    and if my sleep is interrupted by being woken up. That's extremely bad and can leave me crashed all the next day even if I get woken up say only an hour before I would of otherwise woken up. Due to all this I don't allow anyone to phone me or text me before 11am in case I'm still asleep.
     
  3. Van_girl

    Van_girl

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    Should also add that no amount of sleeping in helps. I need to sleep between 9pm and 5am. Anything before or after doesn't seem to help.
     
  4. taniaaust1

    taniaaust1 Senior Member

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    nods yeah, set amount of time your body says "sleep", though my body doesn't go by clocks like that its a set amount of time dictated by my own body
     
  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    In the early years of my ME/CFS I absolutely needed to be in bed by 10 p.m. and I needed at least 10 hours of sleep. If I went to bed at 11 p.m. or midnight I was worthless the next day. I used to have late-night phone conversations with a friend and even he noticed the difference in me the following day if we had talked too late the night before.

    Lack of sleep will lower cortisol levels the following day. Whether this is the cause of your feeling worse or not is unknown.
     
  6. lansbergen

    lansbergen Senior Member

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    Overdoing. It can happen at any time if one does not stay within ones limits.
     
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  7. Van_girl

    Van_girl

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    Yes.. but one's limits are getting smaller and smaller. And staying up and extra 10 minutes doesn't seem like a lot. I realize it's part of the whole disease. It's just annoying that it is so rigid and severe. No amount of banking sleep. No amount of taking it easy helps. Like everything with this it makes working hard (has limited what I can do so has cut my salary in half), and it has isolated me. I have to say no to everything. So eventually there is no one left to say no to. Just wish there was some solution I guess. Like we all do.
     
    Marc_NL likes this.

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