Invisible Illness Meme

Last week was Invisible Illness Week! I had no idea. Better late than never, though, so I’ll post this now:
30 Things About My Invisible Illness You May Not Know

  1. The illness I live with is: Fibromyalgia
  2. I was diagnosed with it in the year: 2005
  3. But I had symptoms since: as long as I can remember, really. They got really noticeable around 2003 or so, I think.
  4. The biggest adjustment I’ve had to make is: Getting enough sleep every night.
  5. Most people assume: That I feel fine, because I maintain so well.
  6. The hardest part about mornings are: I am really friggin’ groggy. And during a flareup, mornings are my worst time. I’m lounging on the couch to write this and even the super-soft cushions hurt like I’m leaning on boards.
  7. My favorite medical TV show is: House! I’m a sucker for asshole geniuses.
  8. A gadget I couldn’t live without is: My laptop, so I can sack out on the couch instead of in a computer chair for interwebs-reading/blogging/writing/etc. Or my pill caddies, which help me make sure I don’t forget my various meds.
  9. The hardest part about nights are: During a flareup, it’s hard to get to sleep because I’m in pain. But fibro pain doesn’t respond to any painkillers. Oh, and not getting enough sleep makes the pain worse, which makes sleeping harder. Fail.
  10. Each day I take 14 pills & vitamins. More if my non-fibro issues act up. (No comments, please)
  11. Regarding alternative treatments I: get chiropractic every week and am considering trying acupuncture.
  12. If I had to choose between an invisible illness or visible I would choose: Invisible, because then I decide who knows. There’s a definite psychological benefit to that. I don’t want people I don’t even know feeling sorry for me or coddling me or whatever.
  13. Regarding working and career: During a flareup it’s hard to focus on work, but I feel better if I’m not sitting at home thinking about how much I hurt.
  14. People would be surprised to know: That I am in pain every single day. I haven’t had a truly painfree day since I was a kid. If I say I’m not really sore on a given day, it means my body is around a 2 on the 0-10 pain scale.
  15. The hardest thing to accept about my new reality has been: That I can’t just power through everything anymore.
  16. Something I never thought I could do with my illness that I did was: I’ve actually never thought about my illness that way. If I want to do something, I do it — the only concession I’ll make to my illness is to figure out a way to do whatever it is without destroying myself. Sometimes that means going slow or taking lots of breaks or whatever.
  17. The commercials about my illness: Don’t really exist. I’ve seen maybe one?
  18. Something I really miss doing since I was diagnosed is: Yoga. I can’t hold poses without excruciating pain, even on a good day, and I haven’t gotten around to finding a yoga class that’s motion-oriented. I’m too busy anyway. :)
  19. It was really hard to have to give up: The idea that I’m indestructible.
  20. A new hobby I have taken up since my diagnosis is: Don’t think there is one, really.
  21. If I could have one day of feeling normal again I would: Not. It would be too hard to go back to feeling like I do every day.
  22. My illness has taught me: That it’s not weak to take care of my body when it needs it.
  23. Want to know a secret? One thing people say that gets under my skin is: I actually don’t have an answer for this. I don’t tell people about my fibro unless I’m pretty sure they’re not going to be jerks about it.
  24. But I love it when people: Ask how I’m feeling and really want to know.
  25. My favorite motto, scripture, quote that gets me through tough times is: “There ain’t no such thing as normal life… there’s just life.”
  26. When someone is diagnosed I’d like to tell them: Sitting around feeling sorry for yourself really will make the pain worse. No, really. Don’t let the pain stop you from doing stuff or it will get a lot worse. Trust me on this.
  27. Something that has surprised me about living with an illness is: I am really good at pretending I’m not in pain.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Support me in making choices to take care of myself.
  29. I’m involved with Invisible Illness Week because: I think it’s an awesome idea to raise awareness!
  30. The fact that you read this list makes me feel: Good! Thanks for listening.

BTW, anybody who wants to learn more about what it’s like to live with a chronic illness needs to read The Spoon Theory (pdf) from But You Don’t Look Sick?

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