Thirty things you may not know about my illness. Thanks to ChronicBabe.com for the idea.
1. The illness I live with is: fibromyalgia
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: childhood, the flare that really sent me looking for answers came in 2002.
4. The biggest adjustment I’ve had to make is: learning to cope with all of the day to day changes – if I do too much one day I could be hugging the heating pad for days to recover
5. Most people assume: I don’t know what people assume but I have been called hypochondriac
6. The hardest part about mornings are: getting the energy to get out of bed. If I can do that it gets better – but fibromyalgia has taken away my ability to be a morning person.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: ipad I can watch movies, read and keep up with friends anywhere
9. The hardest part about nights are: not trying to force myself to sleep when I am not tired, it only makes it worse and gets my inner clock that much more screwed up
10. Each day I take 21 pills & vitamins.
11. Regarding alternative treatments I: think you have to find what works for you but I am wary of anything that claims to cure or reverse the effects of fibromyalgia. That just seems like people preying on the desperate and sick.
12. If I had to choose between an invisible illness or visible I would choose: invisible. People will never learn about these things if we don’t speak up.
13. Regarding working and career: I’ve not been able to work for about 4 years.
14. People would be surprised to know: that any given moment you see me I am in pain. I have just learned to cope with it – that and since there isn’t much we can do to fix it I don’t like to complain.
15. The hardest thing to accept about my new reality has been: embracing the things I am still able to do without losing myself in the grief over things I can not do.
16. Something I never thought I could do with my illness that I did was: road trip across country. It was painful but well worth it.
17. The commercials about my illness: annoy me because they don’t really show what fibromyalgia is like. Everyone looks so active and happy. The demographic is wrong too … you don’t have to be middle aged to have fibro.
18. Something I really miss doing since I was diagnosed is: hiking and working with horses
19. It was really hard to have to give up: working with animals as much as I would like – it just drains me but I love it and hope one day to find a happy medium
20. A new hobby I have taken up since my diagnosis is: journaling
21. If I could have one day of feeling normal again I would: go on a weekend trail ride / campout
22. My illness has taught me: that not everything needs to be done to perfection, appreciate the help I have and be grateful for my husband
23. Want to know a secret? One thing people say that gets under my skin is: pick one … people say a lot of ignorant things that drive me bonkers
24. But I love it when people: ask me about fibromyalgia out of concern and curiousness we can’t educate without interaction.
25. My favorite motto, scripture, quote that gets me through tough times is: It Is What It Is
26. When someone is diagnosed I’d like to tell them: listen to your body
27. Something that has surprised me about living with an illness is: how mean people can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: took care of everything for me while I couldn’t muster the energy to do anything for myself. My husband – he is my partner, my soul mate, my caretaker, my advocate, my love.
29. I’m involved with Invisible Illness Week because: I am glad there is a week dedicated to invisible illnesses but I think every week should be Invisible Illness Week
30. The fact that you read this list makes me feel: hopeful that there are people out there who really care. Thanks!