17 September, 2009

Obligatory NIIAW Post

So, it's National Invisible Illness Awareness Week.

As with all of my disability-related posts, the following applies: This blog is a SAFE SPACE for people with disabilities. If you're going to leave a comment about how one of my responses makes my entire blog/opinion moot, or how people with disabilities need to accommodate non-disabled people in attitude, openness, or helping ABs process their feelings, or that I'm too angry/emotional or not "objective" enough, or that you, as an able-bodied person, can totally relate and here's a long comment detailing exactly how, or that you are concerned about the tone of my post, or that I should "just try" this miracle supplement that totally cured your brother's guy friend's drinking buddy's co-worker, please remember that such a comment might not be taken in good faith, and that I might be a jackass to you in return.

1. The illness I live with is: Fibromyalgia

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

3. But I have had symptoms since: 2006

4. The biggest adjustment I’ve had to make is: Not being so hard on myself, and also not having too many commitments.

5. Most people assume: That being young means that you cannot have serious health problems, or that I am not "really" disabled. DISABILITY POLICE! WEE OO WEE OO

6. The hardest part about mornings is: Combating joint stiffness

7. My favorite medical TV show is: House

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

9. The hardest part about nights is: Falling asleep without tossing and turning!

10. Each day I take 1 pills & vitamins. [Cymbalta]

11. Regarding alternative treatments I: have tried two that did not work (hypnosis, vitamins) and one that has worked (acupuncture)

12. If I had to choose between an invisible illness or visible I would choose: I don't know

13. Regarding working and career: Thank FSM that I got financial aid for grad school, because having a job at this point is out of the question.

14. People would be surprised to know: That I'm not as mean in real life as I sound on the internet. No, seriously.

15. The hardest thing to accept about my new reality has been: Peoples' stupidity is harder to deal with than the actual physical pain.

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. Since when can someone with fibro write in perfect cursive? Also, the way that the actors in the ads pronounce "fibromyalgia" makes it sound like a vegetable, not an actual medical condition.

18. Something I really miss doing since I was diagnosed is: Playing guitar :(

19. It was really hard to have to give up: Being able to stay up past 11 PM or so

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

21. If I could have one day of feeling normal again I would: Go see a movie, go shopping, and then go out to eat, because I would be thrilled to be able to do all three in one day without getting exhausted.

22. My illness has taught me: That a lot of people are pretty stupid and subscribe to "if I can't see it, it isn't there/doesn't exist" thinking, but also that illness affects people of all gender identities, races, ethnicities, ages, sexualities, and class backgrounds.

23. Want to know a secret? One thing people say that gets under my skin is: "You should try positive thinking!" Thanks, dipshit.

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.

25. My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow might be better."

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 people say similar ridiculous things, and that some people keep suggesting "cures" even if I've rebuffed their suggestions before.

28. The nicest thing someone did for me when I wasn’t feeling well was: It's the little things, mostly--asking if I need a break, need to sit down, if there's anything he/she can do, et cetera.

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 put up with me!

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 www.invisibleillness.com


OuyangDan said...

I think I may have to "borrow" this.

Carol N Wong said...

I put a Google alert on Fibromyalgia and up you popped! I am 63 and have had fibromyalgia since I was 27. You are so right about the next day might be better. In 2007, I had a whole week without pain. I love House,
Steven Cobert and Michael Moore so you are a woman after my own heart. For the morning stiffness, I take Flexeril or Tizandine at night and it works! When I don't take it, I can barely move in the morning. Tossing and Turning, yup, have that too. If you find that you have Restless Leg Syndrome, there is Requip. Without my legs drive me crazy, they feel like they have a mind of their own. I also take Cymbalta and was taking Lyrica but my new insurance company doesn't cover it.
Keep up the good work.

Fellow Fibromite,

www.democratz.org said...

I wish you improvement. Having to live with this appears difficult although from what I saw you write you will continue to do your best.

I have no cures for you. I have dealt with an anxiety disorder for decades. One cannot see that either.

I do liberal activism

I have several boycotts against conservative funders of the conservative Democrats and the Republiklan party at http://DEMOCRATZ.ORG

We need to demand progressive legislation from the funders of conservatives in both parties. I promise you, if tens of thousands of people make phone calls and sign the petitions mentioned we can destroy the power of the conservative Democrats and the RepubliKLAN party.

You can reach me at info@democratz.org