Monday, May 9, 2011

An oldie but a goodie...

(Note: this was a post I found a very long time ago.  In February 2011, to be precise-which is like total eons, in the internet world-and it was this list that moved me to "come out" to many of the people I am close to about what I was struggling with. I found a blog that encouraged people with invisible illnesses to answer these 30 questions.  I did it, and posted it, before I had time to chicken out. I encourage everyone struggling with an unseen illness to do the same. It can be helpful, cathartic, and eye-opening.)

Feel free to steal this list, and make it your own.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:Fibromyalgia (and Rheumatoid Arthritis, Reynaud's Phenomenon, and maybe a few more they haven't yet diagnosed, I will keep you posted...)
2. I was diagnosed with it in the year:2011
3. But I had symptoms since:2007
4. The biggest adjustment I’ve had to make is:Taking life slower, trying to reduce my stress and obligations, and accepting that I have it to begin with
5. Most people assume:I am happy, healthy, energetic and my usual self
6. The hardest part about mornings are:Trying to get the energy to get up
7. My favorite medical TV show is:House
8. A gadget I couldn’t live without is: my minivan with all the automated doors and seats
9. The hardest part about nights are:Hoping I get a good night's sleep, without waking up from something that then gets my mind racing
10. Each day I take 17 pills & vitamins. Unless I have pain I can't live with.  Then, up to 16 more pills.
11. Regarding alternative treatments I:am finding great success. My acupuncturist helped me find foods that cause problems, and my therapist is helping me to accept my new "normal".
12. If I had to choose between an invisible illness or visible I would choose:Visible, because I think I wouldn't feel as pathetic as I have
13. Regarding working and career:I am SOOOOOOO grateful to have a lot of flexibility, or I would have had to take disability.
14. People would be surprised to know:That I have this. I have only told close friends, because the pity was unbearable. However, I am learning that this is not chicken pox-it will not go away in 7-10 days.  I will have it forever, and I feel like "coming clean" will make me come to terms with it all better.
15. The hardest thing to accept about my new reality has been:Not doing too much-everyone I know knows I am GO GO GO all day long, and I feel some guilt with giving that up.  SOME guilt-working on it!
16. Something I never thought I could do with my illness that I did was:Feel serene with the life I have. I am getting better about this every day, and look forward to not thinking about my illness most of the day.
17. The commercials about my illness:Make me happy, because it is not seen as a "pretend" illness as much anymore
18. Something I really miss doing since I was diagnosed is:Going constantly all day long, taking on tons of obligations, getting it all done, until I pass out from exhaustion. Sick, I know, but I do miss it. Feeling like Superwoman was nice, especially when I was soooo good at it!
19. It was really hard to have to give up:Dairy.  Still coming to terms with that one.
20. A new hobby I have taken up since my diagnosis is: relaxing.  It's amazing how unfamiliar a concept that was to me.
21. If I could have one day of feeling normal again I would: Do incredibly active things with my kids and husband-ziplining- hiking, skiing, everything I took for granted before.
22. My illness has taught me: That i really do have a fantastic support system, and stopping to smell the roses ain't all bad
23. Want to know a secret? One thing people say that gets under my skin is: Are you SURE you're ok?
24. But I love it when people:accept my situation, and remember. It is super sweet when my husband reads a label to make sure I can have it first.  It's a small thing, but means so much.
25. My favorite motto, scripture, quote that gets me through tough times is: This is your "new normal".  not really a favorite quote per se, but my therapist says it CONSTANTLY!
26. When someone is diagnosed I’d like to tell them: Seek out things that help you accept your new situation: blogs, articles, books, others
27. Something that has surprised me about living with an illness is: I am ultimately more at peace. Happier isn't the right word, but peace is what I have gained.  I may not always be feeling my best, but I have found peace with my situation.  If you ask me how I am, I may gripe, complain, and whine a bit.  But, underneath it all, I have found more peace than I ever thought possible.  Strange, but true.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take care of me-I have truly the best husband  in the world, that has never doubted anything-not my pain, not my limitations, nothing. Sometimes, things like illnesses bring out the worst in people, it certainly did in me, for a bit.  However, it has brought out more good in an already amazing man.  Just when I was getting used to how fantastic he was, he upped the ante.
29. I’m involved with Invisible Illness Week because: I used to think that getting involved with causes was too much work-but now, things like this make ME feel better-my new life's work
30. The fact that you read this list makes me feel: Honest

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