September 15, 2010

30 Things About My Invisible Illness You May Not Know

I've read some great answers to this meme and thought I'd give it a try.

1. The illness[es] I live with [are]: Chronic Daily Headache, Fibromyalgia, Chronic Myofascial Pain Syndrome (MPS).

2. I was diagnosed with it in the year: Headache 1993, Fibro 2005, MPS 2007

3. But I had symptoms since: 1993, 2004ish and 2005

4. The biggest adjustment I’ve had to make is:  Defining myself by who I am rather than what I do.  This is especially difficult in a culture where what we do is who we are.

5. Most people assume: That I'm fine.  They only see me when I'm well enough to go out, don't notice when I disappear for weeks or months on end, and just don't get it.

6. The hardest part about mornings are:  Pain and lack of energy.  Those are recurring themes throughout the day.

7. My favorite medical TV show is:  Don't currently have one.  Closest is Bones.

8. A gadget I couldn’t live without is:  My laptop.  I ♥ my Macbook.

9. The hardest part about nights are:  Getting to sleep and how much I hurt on waking.  I could barely sleep for 9 months when the muscle pain began, until my body learned to sleep through the pain.

10. Each day I take __ pills & vitamins.  I'd rather no count them...enough.

11. Regarding alternative treatments I: would rather not.

12. If I had to choose between an invisible illness or visible I would choose: Duh, neither.  Invisible does have its benefits but health is all it's cracked up to be.

13. Regarding working and career:  Too much to hope for.

14. People would be surprised to know:  How much I suffer.  I try to put on a good face.

15. The hardest thing to accept about my new reality has been:  How many things I'm unable to do and how unreliable I am.

16. Something I never thought I could do with my illness that I did was:  Leave my abusive ex-husband.

17. The commercials about my illness:  Don't watch em or they don't exist.

18. Something I really miss doing since I was diagnosed is:  Making plans and being well enough to follow through.

19. It was really hard to have to give up:  My dream of being a surgeon.  I was 17yo and damn smart.

20. A new hobby I have taken up since my diagnosis is:  Knitting, sewing, quilting, in 1994.  Began garment sewing a few years ago.

21. If I could have one day of feeling normal again I would:  Rather not.  Too hard to go back.

22. My illness has taught me:  Nothing that I couldn't have learned another, easier way.

23. Want to know a secret? One thing people say that gets under my skin is:  "What do you do all day?"  That and "You look so good/pretty."  I wear makeup to cover my pallor and the dark circles under my eyes before I leave the house, just like other women.

24. But I love it when people:  Want to spend time with me, just sitting together, when I'm not able to go out.  Anyone who accepts me as I am is good people in my book.

25. My favorite motto, scripture, quote that gets me through tough times is:  Just get through today.

26. When someone is diagnosed I’d like to tell them:  Get PT or massage therapy immediately (for MPS).

27. Something that has surprised me about living with an illness is:  The amount of suffering I can experience and not die or go crazy.

28. The nicest thing someone did for me when I wasn’t feeling well was:  Recently, held me while I cried.

29. I’m involved with Invisible Illness Week because:  Why not?

30. The fact that you read this list makes me feel:  Glad that someone cares.


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