Monday, September 14, 2009

30 things for Invisible Illness Week

In honor of Invisible Illness Week, 30 things about my invisible illness you may not know:

1. The illness I live with is: atypical irretractable migraines. Or something along these lines. My doctors have commitment issues.

2. I was diagnosed with it in the year: 09/2007

3. But I had symptoms since: 04/2007

4. The biggest adjustment I’ve had to make is: Being a quiet person, when formerly, I was always the loudest in the room.

5. Most people assume: that if I say I am fine, I mean it. I rarely do.

6. The hardest part about mornings is: waking too early or too harshly. If I wake up wrong, I can suffer for days.

7. My favorite medical TV show is: I would like Nurses Jackie and Hawthorne to join the cast of House please.

8. A gadget I couldn’t live without is: laptop or dvr. both keep me sane and distracted when I'm low, and entertained and educated when I'm better.

9. The hardest part about nights are: I want to go nocturnal and enjoy life without the evil, triggering sun. But my body won't let me. :(

10. Each day I take about 5 pills & vitamins, lately.

11. Regarding alternative treatments I: will try everything once, within reason.

12. If I had to choose between an invisible illness or visible I would choose: This is like a trick question. If it was visible, it would make my bad days easier, maybe people would cut me more slack. But it would make my better days worse, because it would still, theoretically, be visible and I would still get that "special treatment". Or am I reading too much into it?

13. Regarding working and career: I am severely disabled and totally and completely unsure of my future.

14. People would be surprised to know: my internet friends would be surprised to know how shy I am about my illness in real life, and my real-life friends would be shocked by my candor in my blog. Interesting contradiction.

15. The hardest thing to accept about my new reality has been: that I need help. And that I shouldn't be ashamed of it.

16. Something I never thought I could do with my illness that I did was: Coherently blog about it, and have people read what I write, willingly.

17. The commercials about my illness: Are not about me. I am atypical. yay me.

18. Something I really miss doing since I was diagnosed is: being busy. I feel so sedentary.

19. It was really hard to have to give up: laughing with abandon.

20. A new hobby I have taken up since my diagnosis is: gardening.

21. If I could have one day of feeling normal again I would: have a huge party and invite everyone I know. I'd spend all 24 hours talking and dancing and laughing and climbing trees and frolicking wildly.

22. My illness has taught me: humility, accountability, empathy, inner peace.

23. One thing people say that gets under my skin is: when are you going to get over the whole headache thing?

24. But I love it when people: don't judge. and ask intelligent questions. "Have you tried excedrin?" is not one.

25. My favorite motto, scripture, quote that gets me through tough times is: Actually, Michael J. Fox has been a huge inspiration to me, lately. Can't pick a quote, but his whole mentality about disability is amazing.

26. When someone is diagnosed I’d like to tell them: Stay strong for yourself and be easy with yourself. But keep moving, even slowly. And don't lose perspective.

27. Something that has surprised me about living with an illness is: My own strength. I am woman! RAWR!

28. The nicest thing someone did for me when I wasn’t feeling well was: told me to sit down and asked if there was anything I needed. Unsolicited, unconditional, nonjudgmental, unassuming help is sadly rare and heartbreakingly beautiful.

29. I’m involved with Invisible Illness Week because: I need to feel proactive to feel like I am alive.

30. The fact that you read this list makes me feel: visible. Jasmine said it first, and her answer resounded with me deeply.


chrissy said...

nice post....i really understand number 23...:)

WinnyNinny PooPoo said...

Love the "I am woman" comment. Are you sure you're shy??? :)

Martha G Sluder said...

Stephanie, I find your story so touching! I stumbled across it while googling irretractable migraines for a client. I am an herbalist and have a circle of quite knowledgable practitioners. There are many very caring people out there and I believe there is help for you!

Blessings, Martha Sluder