exactly that

Obligatory NIIAW Post*…

Shamelessly stolen from Annaham

I agree, also, w/ her sentiment…Awareness isn’t enough.  Take that w/ as much salt as you need to digest.
1. The illness I live with is: Fibromyalgia (as far as anyone will admit thus far, testing is still pending)

2. I was diagnosed with it in the year: 2007 (also, see above)

3. But I have had symptoms since: 2005

4. The biggest adjustment I’ve had to make is: Admitting that I need rest/help, and not being too hard on myself.

5. Most people assume: If they can’t see it then it isn’t real.  Also, it must all be in my head.  Oh, and that pills = bad.

6. The hardest part about mornings is: moving…and sometimes the fog.

7. My favorite medical TV show is: House, cuz, ya know, it’s never Lupus.

8. A gadget I couldn’t live without is: My lappy.

9. The hardest part about nights is: Falling asleep.  Full Stop.
10. Each day I take: 2-3 pills, and vitamins.  (this is what I should be on…and hopefully now that I have a referral it will resume)

11. Regarding alternative treatments I: have tried some that haven’t worked (hypnotherapy, physical therapy, electric shock therapy…not the debunked kind from old mental hospitals), and some that have (chiropractic care by someone used to dealing w/ chronic pain patients).  I also want to try acupuncture…but am afraid.

12. If I had to choose between an invisible illness or visible I would choose: is this a trick question?

13. Regarding working and career: Once I figure what I want to be when I grow up I hope I can find a way to do it while being sensitive to my body’s needs.

14. People would be surprised to know: That is affects me way more than they will ever realize.

15. The hardest thing to accept about my new reality has been: Peoples’ stupidity is harder to deal with than the actual physical pain.  *good one Anna.  Also, my friend’s almost intentional dismissal of my reality.

16. Something I never thought I could do with my illness that I did was: Stand up for myself.

17. The commercials about my illness: Bug the SHIT out of me.  They feed into the stereotype that I am not living w/ a serious condition, or that there is some magical cure.  Or diagnosis.

18. Something I really miss doing since I was diagnosed is: Swimming…and, yes, running.

19. It was really hard to have to give up: doing everything for myself.

20. A new hobby I have taken up since my diagnosis is: Blogging.  Seriously…it gave me an outlet that I didn’t realize I needed.

21. If I could have one day of feeling normal again I would: Go see parts of Korea we want to and be able to make it home without crying on the subway.

22. My illness has taught me: to be a little less hard on myself…to accept me for who I am…and to love my body just the way it is (I am still working on that last part).

23. Want to know a secret? One thing people say that gets under my skin is: You should try positive thinking (O RLY?  I never thought of that).  Also, that diet and exercise is somehow going to magically fix me.  Thanks, moron.

24. But I love it when people: Are not afraid to admit that there are things about disability that they don’t know, without also expecting that I’ll play the role of Magical Disabled Person Who Teaches Them a Lesson About Life. *word, Annaham.

25. My favorite motto, scripture, quote that gets me through tough times is: I am not sure that I have one.  Maybe, “Always Look on the Bright Side of Life“?

26. When someone is diagnosed I’d like to tell them: It’s not the end of the world.

27. Something that has surprised me about living with an illness is: that suddenly everyone is a doctor.  But even actual Med School grads can be intentionally obtuse morons.

28. The nicest thing someone did for me when I wasn’t feeling well was: It really is the little things.

29. I’m involved with Invisible Illness Week because: Awareness just isn’t enough; in some cases, it breeds complacency.

30. The fact that you read this list makes me feel: Thankful that I have so many friends who will care enough to learn more.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at http://www.invisibleillness.com


Comments on: "Obligatory NIIAW Post*…" (3)

  1. This is a test comment b/c I changed my Gravatar.

  2. “The hardest thing to accept about my new reality has been: Also, my friend’s almost intentional dismissal of my reality.” This. I think I may be dealing with this too and it’s really hard to accept.

  3. […] Obligatory NIIAW Post*… […]

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