Friday, September 17, 2010

Invisible Illness Week, 2010

In recognition of Invisible Illness week, I give you the meme:

1. The illness I live with is: chronic migraines

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: 2007, it was a pretty sudden onset. Though I have had occasional symptoms since childhood, like the subtlest of foreshadowing.

4. The biggest adjustment I’ve had to make is: being quiet. I miss being at the heart of a good raucous clamor.

5. Most people assume: that I'm weird, crazy, fragile, lazy, antisocial, entitled, snobby or rude.

6. The hardest part about mornings is: immediate pain. It's easier if I get an hour to wake up before it sets in.

7. My favorite medical TV show is: I like House, but I really hate the way they've dealt with his pain and drug use. That show could have done something great, something validating, for so many people who live with pain daily and medicate responsibly. But, no.

8. A gadget I couldn’t live without is: my laptop. The internet is entertainment, education, community, and convenience. It is necessary.

9. The hardest part about nights is: nothing is open. I could operate totally at night, if society would only let me.

10. Each day I take __ pills & vitamins. Less than 5.

11. Regarding alternative treatments I: am gung ho, as long as I can afford it.

12. If I had to choose between an invisible illness or visible I would choose: I don't know. It's choosing between illness and illness. The visibility wouldn't be the most important factor in the choice.

13. Regarding working and career: I don't work.

14. People would be surprised to know: that my medication is not for their recreational use. It's a prescription. For pain. Not a party favor. EVER.

15. The hardest thing to accept about my new reality has been: the constant struggle. I almost wish I couldn't remember when it was all so easy.

16. Something I never thought I could do with my illness that I did was: You know, I can't think of a single thing that I "never thought I could do". I've always been fairly certain that I could accomplish anything, with enough time and resources. And it's the same now, even with daily pain, it'll just take even more time and even more resources. But going uphill is still moving forward.

17. The commercials about my illness: are not for me. An excedrin migraine ain't gonna to cut it, Peggy.

18. Something I really miss doing since I was diagnosed is: just going. Being spontaneous and driving myself to exhaustion without a care in world because I could just go to sleep and be brand new the next morning.

19. It was really hard to have to give up: my freedom.

20. A new hobby I have taken up since my diagnosis is: sewing! crocheting! blogging!

21. If I could have one day of feeling normal again, I would: just go. Frolic on the beach under the sun. Run with my dog. Make plans with everyone I know, and talk and laugh and dance for hours, with all of my favorite music playing in the background.

22. My illness has taught me: compassion.

23. One thing people say that gets under my skin is: "must be nice", or similar sentiments in reference to me not working, or to me sleeping half the day, or how much time I spend on leisure activities, etc. That assumption, that not participating in productive life is my preference, enrages me.

24. But I love it when people: act normal around me.

25. My favorite motto, scripture, quote that gets me through tough times is: "It's my life, I do what I do."

26. When someone is diagnosed I’d like to tell them: You can learn to live with this.

27. Something that has surprised me about living with an illness is: my adaptability.

28. The nicest thing someone did for me when I wasn’t feeling well was: I can't name just one. Every time someone turns down the lights or the music without making a fuss, or when my boyfriend rubs my feet, or when the doctor's office gives me a quiet place to wait, it feels like the nicest thing anyone's ever done for me, every time.

29. I’m involved with Invisible Illness Week because: I have an invisible illness and I'm not alone.

30. The fact that you read this list makes me feel: visible. This is the only answer I remember from last year's questionnaire, and it's still true.


WinnyNinny PooPoo said...

Hopes and wishes that someday #21 will be true!!

Boo on those who try to snipe your smokable meds.

steph said...

lol, boo indeed.

Bibliotekaren said...

Oh, you hit so many points to which I can relate. While it may or may not induce a migraine, I pretty much have little buffer against noise and light. I miss being spontaneous, fast-paced and not fragile. But here's to adaptability and carving out a new normal.

Thanks for your sharing. I get it.


steph said...

And thank YOU for commenting because other people getting it = awesome.