My Invisible Illness: 30 Things You May Not Know

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The Invisible Illness: Fibromyalgia

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: 2011
  3. But I had symptoms since: 2006 and earlier
  4. The biggest adjustment I’ve had to make is: learning to pace myself
  5. Most people assume: that I do nothing all day but play games online
  6. The hardest part about mornings are: taking my blood sugar and hoping it’s gone down
  7. My favorite medical TV show is: Rizzoli and Isles. Does that count?
  8. A gadget I couldn’t live without is: my tablet
  9. The hardest part about nights with an invisible illness are: #painsomnia
  10. Each day I take 29 pills & vitamins. (No comments, please) Not including breakthrough pain pills or muscle relaxer
  11. Regarding alternative treatments I: wish I could afford any. chiropractor, acupuncture, reiki, massage therapy, warm water therapy
  12. If I had to choose between an invisible illness or visible I would choose: invisible – don’t give a rat’s ass what other people think. Those that know me well know the truth, and so do I.
  13. Regarding working and career: I had to give it all up. I miss my time at SEP the most. You know who you are.
  14. People would be surprised to know: That I was once a very active person who played many sports, including: slo-pitch, softball, downhill skiing, curling and bowled in a bowling league.
  15. The hardest thing to accept about my new reality has been: that I cannot do the things I want to anymore. I can’t even go for a walk.
  16. Something I never thought I could do with my illness that I did was: Connect with so many people online, especially my new #spoonie friends on Twitter.
  17. The commercials about my invisible illness: I’ve never seen one in Canada
  18. Something I really miss doing since I was diagnosed is: playing slo-pitch and downhill skiing.
  19. It was really hard to have to give up: our car. we just couldn’t afford it anymore.
  20. A new hobby I have taken up since my diagnosis is: nothing new that I didn’t do before.
  21. If I could have one day of feeling normal again I would: Jump and run and enjoy the outdoors. I appreciate so many things I used to take for granted now.
  22. My illness has taught me: Not to judge others, you don’t know their story or what burdens they carry.
  23. Want to know a secret? One thing people say that gets under my skin is: Telling me that all I need is some fresh air and exercise. There is no cure for Fibromyalgia and you can’t possibly fathom the amount of pain I endure in a single hour, let alone all day 24/7.
  24. But I love it when people: Not that it ever happens but if someone asked me if I needed help, if I needed anything, run an errand, pick up groceries. That’d be nice. Especially if the hubby didn’t have to do everything himself. He has chronic pain too.
  25. My favorite motto, scripture, quote that gets me through tough times is: Learn the system. Work the system. (ie find the easier or fastest route to getting things done!)
  26. When someone is diagnosed I’d like to tell them: That they are not alone. We are a Legion of Fibro Warriors. That their pain IS real and that they DO deserve pain relief.
  27. Something that has surprised me about living with an invisible illness is: I have been surprised how medical professionals automatically treat chronic pain patients like liars or addicts. It’s disgusting and so unprofessional.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Give me a hug. Hold me for a few minutes and tell me it was going to get better. (ok that hasn’t happened yet either, how sad is that?)
  29. I’m involved with Invisible Illness Week because: Education and Knowledge is Power! Fibro Warriors must learn to be their own best advocate. No one else will. Stand up and DEMAND the right to be treated fairly and not like an addict or faker.
  30. The fact that you read this list makes me feel: Empowered. If someone actually reads this to the end and posts a comment afterwards AND offers me a hug. It’d be pleasantly surprised indeed.
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