It’s been nearly 15 years or maybe even more since I’ve started trying to find help for all my symptoms. Mostly I ended up feeling crazy… (“Am I gaslighting myself? I must be.”) So much happens internally that you can’t see, can’t share. You sound like you have the flu 49x a year. People don’t understand just how tired you are. What the aches and pains are like… so constant, drumming, sharp, dull, here today and over there tomorrow! Everything is worse because nothing makes sense and no one understands, even the ones that really, really try.

I don’t know how to feel about the diagnosis yet. I have a lot of reading to do, to start. Any favorite resources, books, educational materials (for myself or my partner?). I’d love to hear how others cope, too, if anyone feels like sharing. Feels like I’m the Queen of Random Self-Care Interventions and always doing something or another for my physical and mental health. Just hearing from others would be awesome; it’s so strange to find a word exists for all of these symptoms, all this time.

  • Zerlyna@lemmy.world
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    9 months ago

    It sucks so bad some days. Today is one of those for me. I barely slept all night and my arms feel like I just had a triathlon. 11:30 and I’m still in bed. Shooting for noon now. Hot showers always seem to help, it’s getting the energy to walk 30 feet that’s the hold up. ;(

    • CatWinner@lemmy.worldOP
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      9 months ago

      And it’s so unpredictable! Sometimes I wish we got forewarning instead of waking up and realizing nothing you wanted to do today is going to happen after all!

      • Zerlyna@lemmy.world
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        9 months ago

        Yes!! Sitting on the couch all day wasn’t the plan. I felt great last night. Today it’s like a truck hit me.