30 things you may not know about my illness: fibromyalgia

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In honor of Invisible Illness Awareness Week, here’s my contribution to the “30 things” meme. Want to write your own? Head over to the forum and post!

1. The illness I live with is: fibromyalgia (i’ll just focus on the one since i have a few)

2. I was diagnosed with it in the year: 1997

3. But I had symptoms since: childhood, then was fine for years, then they came back in 1996

4. The biggest adjustment I’ve had to make is: managing my time every day. no more late-night clubbing and dancing. i have to keep an eye on my energy levels all day, every day, which is a huge shift.

5. Most people assume: i am fine because i look fine.

6. The hardest part about mornings are: feeling exhausted, stiff and in pain…so i go through an hour-long heating pad and yoga routine to start my day.

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: cell phone (is a rubber jar top opener)

9. The hardest part about nights are: needing to tweak my environment so much so i can sleep: ear plugs, air filter (for white noise), temperature, lightweight-but-still-warm covers, comfy PJs, meds, time for relaxation exercise, darkness, memory foam pillow…so many things to manage!

10. Each day I take 17 pills & vitamins, plus a couple inhalers.

11. Regarding alternative treatments I: think they can be great, if thoroughly researched and coordinated with your health care provider’s plan of action

12. If I had to choose between an invisible illness or visible I would choose: invisible. i admit it, i’m a bit vain.

13. Regarding working and career: it’s a challenge to manage work but that’s why i’m a freelancer (in part): so i can manage my workday by my rules, taking time off when i need it and wearing comfy clothes and shoes.

14. People would be surprised to know: that i’m in pain nearly every moment. i try not to make a big deal out of it, unless i’m in severe pain or need accommodations to lessen my pain.

15. The hardest thing to accept about my new reality has been: physical limitations. i used to be a competitive swimmer and go out dancing and run – and i can’t do those things very much any more.

16. Something I never thought I could do with my illness that I did was: attend a trade show where i stood and walked for hours every day for 5 days – and still have a blast. mindset made a big difference.

17. The commercials about my illness: are good to see (finally!) but somewhat annoying in that they only show older people, when in fact fibromyalgia affects many women of child-bearing age (like, 20s and 30s).

18. Something I really miss doing since I was diagnosed is: dancing all night at a club (can you tell? is this my third mention?)

19. It was really hard to have to give up: smoking. but come on, i was way overdue. almost 13 years later and still miss it sometimes, but glad i quit.

20. A new hobby I have taken up since my diagnosis is: jewelry-making

21. If I could have one day of feeling normal again I would: sleep in, then cook a big meal for friends, then take them all out dancing and do a few shots to celebrate, hoping i wouldn’t be hungover the next day

22. My illness has taught me: to ask for help, to stand up for myself, to be in touch with my body, to appreciate all the things i DO have

23. Want to know a secret? One thing people say that gets under my skin is: “but you’re too young to be sick!” ignorant. frustrating. dismissive. if i say i am, then i am – don’t rub it in.

24. But I love it when people: say “wow, you seem like you’re doing well in spite of it – you must work hard to do that. good for you!”

25. My favorite motto, scripture, quote that gets me through tough times is: peace is every step. -thich nhat hanh

26. When someone is diagnosed I’d like to tell them: to find others who’ve been through it so you have a support system that understands you on a deep level from the start, and add to that a network of friends, family, whoever to be your support team. and have patience – it will get easier.

27. Something that has surprised me about living with an illness is: how much i can still do if my attitude is right.

28. The nicest thing someone did for me when I wasn’t feeling well was: i have to pick one? i have to list a few: stayed with me in the ER, told me everything would be OK, brought me pudding, helped me dress myself, advocated on my behalf when i was too exhausted to so, said “i don’t understand but i love you and support you anyway,” helped me find humor in a crappy situation, took out the trash, played me a song…the list is endless, really. i am so blessed.

29. I’m involved with Invisible Illness Week because: i know the impact it has – and i know many people can live better lives in spite of illness if they get good information and advice, which II Week is all about!

30. The fact that you read this list makes me feel: honored, humbled, thankful, lucky, thrilled. thank you for taking the time!

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