The week of September 12-18th is Invisible Chronic Illness Awareness Week. The following is a list of questions posted by http://invisibleillnessweek.com/ to generate awareness.
1. The illness I live with is: rheumatoid arthritis, fibromyalgia, and migraines.
2. I was diagnosed with it in the year: I was officially diagnosed in February 2003.
3. But I had symptoms since: I had symptoms as early as 1995.
4. The biggest adjustment I’ve had to make is: Slowing down. I can still do most of the things I could do before, but I have to do them more carefully, and it takes me longer to do them and longer to rest and recover afterwards.
5. Most people assume: That it's not that bad, because I don't look sick or disabled most of the time. That RA is comparable to osteoarthritis ("Oh, I know how you feel. I have a little arthritis in my knee.").
6. The hardest part about mornings is: The headaches when I haven't gotten enough sleep.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: My Pampered Chef jar opener.
9. The hardest part about nights is: Lying in bed awake for hours at a time despite being completely exhausted.
10. Each day I take: medication for pain, medication for insomnia, medication for asthma, medication for allergies. I go to my doctor's office every four weeks for an intravenous infusion of my RA medication.
11. Regarding alternative treatments: I have tried various vitamins and supplements and I get a massage as often as I can. I've also seen a chiropractor. Unfortunately, none of these made a dent.
12. If I had to choose between an invisible illness or visible I would choose: The point is that we don't get to choose. One thing I appreciate about having a (mostly) invisible illness is that I don't get pitying looks everywhere I go. On the other hand, it also means that people often don't understand the severity of my illness because I don't look sick or disabled.
13. Regarding working and career: I continued to work full time for six years after my diagnosis. I now work part time. It would be extremely difficult, but probably not impossible, for me to go back to full-time work. I'm very fortunate that I don't have to.
14. People would be surprised to know: How much pain I live with. How many surgeries I've had (in fact, even I've lost count, but it's either 13 or 14 now).
15. The hardest thing to accept about my new reality has been: I never had any trouble accepting it. It is not in my nature to dwell on the bad things in life or engage in self-pity. My attitude has always been more along the lines of, "All right, this is how things are now. How do I best manage it?"
16. Something I never thought I could do with my illness that I did was: As I said above, I can still do pretty much everything I could do before. I just need to figure out new ways of doing some things, and some things take longer to do, or are more painful to do. I've learned to be very resourceful.
17. The commercials about my illness: Are ridiculous. There's one for either Enbrel or Humira that says something like, "I knew rheumatoid arthritis was painful, but I didn't know it could damage my joints!" Um. That's what rheumatoid arthritis is. It's a condition in which your body's immune system attacks and destroys your joints.
18. Something I really miss doing since I was diagnosed is: I had symptoms for years before I was diagnosed, so my diagnosis date does not coincide with me giving up anything. However, something I miss being able to do, that I could do before my symptoms began, is cramming multiple activities into one day. I read my journals from when I was younger and it just amazes me how many different things I could do in one day. I was like the Energizer Bunny. Now I'm good for pretty much one thing. If I work, that's it. I can't go anywhere after work -- not out to dinner, not out for happy hour, not shopping. On my day off, if I do my grocery shopping and other errands, that's it. I can't go out to dinner or a movie or anything else that evening. I mean, I could, but I would be miserable and exhausted and it would sap my energy for a week afterwards.
19. It was really hard to have to give up: I can't think of anything I've had to give up entirely. I've just had to become more rigid in my scheduling. I stick to a set routine and make sure to schedule downtime.
ETA: I thought of something I had to give up -- wearing high heels. Since my foot surgery in 2005, in which the joints in my big toe were fused together, I can no longer physically get my feet into heels higher than 3 inches, and that's pushing it. I miss my high heels.
20. A new hobby I have taken up since my diagnosis is: N/A
21. If I could have one day of feeling normal again I would: Eh. I do feel normal. It's a different kind of normal than I felt before, but it's been my reality for over 15 years now.
22. My illness has taught me: That I am stronger than I ever knew I could be.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look fine!"
24. But I love it when people: Respect my boundaries and my need to take care of myself.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't really have one.
26. When someone is diagnosed I’d like to tell them: It's not the end of the world. It's scary at first, and it's not fun, but you will learn to live with it and you can still live quite well and happily.
27. Something that has surprised me about living with an illness is: The fact that we can become used to living with almost anything.
28. The nicest thing someone did for me when I wasn’t feeling well was: I can't think of one particular kindness that stands out, but people have done very kind things for me, such as giving me rides to and from doctor appointments or surgeries, giving me rides to or from work when I've been unable to drive due to migraines, bringing me soup or sending me flowers or thoughtful gifts when I've been recovering from surgery, and picking up my medication for me.
29. I’m involved with Invisible Illness Week because: Well, frankly, because I learned about it from one of my Twitter friends who retweeted someone else's blog of this list.
30. The fact that you read this list makes me feel: Like writing it wasn't a waste of time.
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