What do you all day when you can't sleep?

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Jan 18, 2006.

  1. HppeandMe

    HppeandMe New Member

    To those of you on disability and perhaps to some who are not. I was at home all day today do to lack of energy but I can not sleep. How do you spend your time? I was so anxious. I wanted to get the heck out of the house. I am applying for disability and can hardly manage one day in the house although this is what I need. It wouldn't be so bad if I could at least sleep, but my body does not even do that anymore. I have to wait until late at night to sleep when I take my massive sleep medication.

    I ended up taking a dexedrine for energy just to get myself out of the bed even though I think they are making me sicker and have horrible side effects. Please tell me how to get through the lonely, boring, anxious days?
  2. Cromwell

    Cromwell New Member

    Nice to hear from you. I was just thinking about how you were doing with the house and all. Yeh, that feeling so tired yet unable to sleep. Books on tape send me to sleep is all I can suggest. Give me a post and let me know how you are doing, been worried.
    Love Anne (Crom)

    LISALOO New Member

    I can totally understand. before I got sick I was so on the go that I couldn't even sit down and just watch tv. Which I do part of the day now. I spend a lot of time on the computer. I read alot, fiction and health books. I spend some time meditating. I hate being bored. I just can't sit and watch tv.
  4. Shananegans

    Shananegans New Member

    I picked up some new hobbies like sewing... Making new clothes out of old clothes I didn't wear any more. I also write alot for myself... nothing anyone else will ever see but it occupied my time. I also spent alot of time online looking for new info, rereading old info, chatting on line. My house is as clean as it can get when I'm home all the time, for as much as I could do on the bad days. TV is the devil so I avoid it as much as possible and not having cable helps with that... lol. So there are some ideas. It's tough going from doing everything to not being able to do anything. You're so tired yet you want to do everything when you can't. But eventually you start to adjust... almost. Best wishes

  5. day2day

    day2day Member

    I am on disability, I am unable to work now even a parttime job, not knowing which are my good/bad days. What I can do is volunteer, I use to do it in the head start program, and now do it at my sons school. They all know about my illness and if I am unable to go they understand. I have it set up for an hour a week at my sons school, and sometimes more if I am up to it.

    If you call your local United Way chapter they may beable to furnish agencies that could use some help, either out side the home or possibly doing some volenteering from home.

    If nothing else it has made me feel like I am contributing something to others, which makes me feel good.
  6. JLH

    JLH New Member

    You stated that you take a "massive" amount of sleep medication. Then you end up taking a dexedrine for energy just to get yourself out of bed.

    This combination might be your problem. Cut out all of the energy pills in the morning. Suffer through a few days to get all of that out of your system.

    You may be taking too much sleep med if you can't get yourself out of bed in the morning. Try less sleep meds.

    Maybe in time you can get your days and nights back in order.
  7. HppeandMe

    HppeandMe New Member

    Thanks for the advice. I am just wondering if disability would have a problem with volunteering since they have no idea about our illness. I would love to do that on my good days I would just be afraid they would say if I can volunteer than I can work. What do you think?
  8. HppeandMe

    HppeandMe New Member

    I have actually tried that to see if it would make a difference in my sleep but it has not. I still don't sleep well unless I take all of the sleep meds and I still wake up exhausted. I am actually trying it again as I have not taken any dexedrine today. I have taken the naural Mitochondrial Ignite which has worked in the past but wore off after a few months.

  9. day2day

    day2day Member

    I wish you luck with your disability, after my second denial I did retain a lawyer who also had done about 15 cases of people who had cfs and actually won them all.

    As far as your disability goes, document everything, and also keep every single piece of paper you recieve from SS, and copy everything you or your lawyer sends to them. I lost one letter that cost me a year of disabilty back pay.

    My lawyer at my review with the judge did have me tell the judge about my limited volunteering, and how forfilling it was for me even though it was very erratic and limited time. Now this judge was someone my lawyer had dealt with in the past. I think every circumstance is different.

    IM sry for your sleeping problems, I my self am plagued with them as well, I just kind of roll with the punches so to speak.

    hope this helps a bit
  10. hdbubblehead

    hdbubblehead New Member

    don't volunteer yet! They could be watching. Some go as far as asking neighbors if they see you doing things outside, etc. (it's almost like a lawsuit)so be very careful.
    I suggest you just pamper yourself all you can. Take the time to find out what you like.
    I face the fact that any day I could be paralyzed by my spinal cord compression. It took me over a year to come to grips with the fact that I can't take too many risks with my body. I want to keep walking.
    As far as lonely, boring, anxious days.....it's the pits.
    but you're here for a reason. maybe start writing a book about something.
    take your time and smell the roses.
    All the best to you about your disability case.
    (do your best,leave the rest and remember, GOD is in Control.)

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