• Daedra

    That describes everything I feel all the time. It’s painful to deal with these problems when I’m still in highschool. I’m 17 right now and I’ve been dealing with these problems since I was 13. It makes me happy that someone else knows exactly how it feels.

  • Abigail Hollis

    I finally feel like someone understands me and “gets” it. I have said a million times, it feels like I have the body of an 80 y/o and I’m only 35. I am glad I found this page, to have others who know how it feels to not want to complain, to muddle through the day, wake up more tired than the day before, and sometimes just feel like it takes every ounce to even breathe.

  • Kari

    Beautifully written. Thanks for sharing, i no longer feel so alone. Hugs❤️

  • westomoon

    Oh, boy, the wee hours are a dark time indeed. Sleep started failing me back when I was still working full-time (well, the lupus version) at a stressful job. I finally came up with something that helped me — when I was awake and feeling functional, I made audio tapes for myself for those times. I figured if I couldn’t sleep, rest would be a good second option, and to make that happen, I had to break the sort of feedback loop of panicky wee-hours despair that makes painsomnia even worse.

    I used the voice I’d use for tenderly talking to a sick child, and I recorded relaxation exercises, poems I like, even just pieces that in the light of day I found beautiful or comforting. It’s surprisingly effective to hear one’s own voice crooning to you in those darkest hours. These days, I also have a couple of audio books that are helpful — Wind in the Willows is a current favorite.

    I don’t know if this would work for everyone, but I’ve found that the “Super Orange” flavor of Emergen-C, those little packets that make a fizzy drink with Vitamin C and electrolytes, works very much like Rescue Remedy (from the health-food store). I’ve found both very steadying, and you can keep them on your bedside table and just add them to your bedside glass of water when needed. (I let the Emergen-C sit a few minutes until the fizz has gone.)

    Not to preach, but for me, a big piece of surviving painsomnia, and lupus in general, has been forgiving myself — and my body, and God, and fate, and genetics — for my lupus. Forgiving myself meant I could make little arrangements to make things easier for me, like I would if the disease had hit someone I love instead of me. There’s no reason why anyone should have to walk to the kitchen when they’re having a bad flare, for example — that’s why God made dorm fridges and air pots and fizzy vitamin drinks, IMO.

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