Fibromyalgia Diaries and Support for Newbies

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30 Questions for National Invisible Illness Awareness Week

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30 Questions for National Invisible Illness Awareness Week

National Invisible Illness Awareness Week September 13-19, 2010

The National Invisible Illness Awareness Week organization has asked all bloggers to write and post answers to a standard 30 question poll they’ve created for this week. I have, and you can find my answers below. If you have an invisible illness, please support this week by posting your own answers on your blog or in the notes section of your Facebook page.

Aman’s 30 Answers

1. The illness I live with is: Fibromyalgia and Chronic Fatigue Syndrome

2. I was diagnosed with it in the year: 2010 (Feb)

3. But I had symptoms since: 2009 (March)

4. The biggest adjustment I’ve had to make is: my diet. I’ve became allergic to a lot of food, and changing
my diet along with having to cook fresh meals everyday can get very tiring, especially when you have chronic fatigue. It’s a catch 22 really, because if I don’t eat on time, my body also starts acting strange and I get an array of other symptoms.

5. Most people assume: I have no idea. I get mixed signals.

6. The hardest part about mornings are: sometimes rough, and sometimes tolerable. Imagine a 3-day bender hangover, every morning. Mornings are always when I know I might be paying for deviating from my diet the day before, or when I know if I did something out of the very strict regime that I have to keep to stay at tolerable levels of pain. Everyone that has fibromyalgia has rough mornings.

7. My favorite medical TV show is: The Doctors Show, even though I hardly watch TV. Its the only TV show that I watch which is medically related.

8. A gadget I couldn’t live without is: my IPhone.

9. The hardest part about nights are: sometimes I have a hard time falling asleep. That’s usually if I was eating something that made me stay up, like yeast makes me stay up…beer or pizza would do it, or if something was stressing me out. Most of the time, I am up because I am in pain…

10. Each day I take 15-20 pills & vitamins.

11. Regarding alternative treatments I: believe they are just as legitimate as, and in many cases more helpful than, prescription drugs you get from a pharmacy. They need to be incorporated more into traditional medical care. The last two sentences I typed are the largest understatements I could possibly make.

12. If I had to choose between an invisible illness or visible I would choose: I would choose invisible. Our society is very ignorant when it comes to medical illnesses in my opinion. Its pretty bad when you have an invisible illness, but I know if you had a visible one, you still would be treated differently. I would like the comfort of knowing that I would blend in with the crowd and not having anyone know.

13. Regarding working and career: I create my own schedule to work around my good and bad days. It took me a long time to be able to get to this level of “functioning” since taking care of myself and my symptoms was really more than a full-time job. Now I am working more and more and hoping that I will continue with work and eventually be able to work full-time again without any problems.

14. People would be surprised to know: that having something like this, really breaks it all down for you. It shows you who the important people are in your life. It has also made me treasure each and everyday. Its been a tremendous experience, growing, and being humbled in this way. I really have had many “normal” things taken away from me, and dealing with that on its own was tough to do. It is true with the challenges, you grow in so many ways…and that is really ironic.

15. The hardest thing to accept about my new reality has been: The change. Its been the hardest to accept. Facing this new reality almost feels like a war, because if accepted, that means I would have given up. I have taken aggressive steps to try to renew my health and different systems of my body so I can be pain free one day again.

16. Something I never thought I could do with my illness that I did was: finish my undergraduate program at Utah State. It was very challenging getting flares, then having the discipline to want to study. It was also hard to concentrate since I would get “fibro fog.” I did the best I could, and all of the pressure from school, made my pain worse…but I finished, and when I was done, so much of my pain went away.

17. The commercials about my illness: Are not representative of what it is like to live with fibromyalgia. The commercials are characterized by back pain, when in reality, this is a complex pain syndrome that affects multiple systems of the body.

18. Something I really miss doing since I was diagnosed is: going for a run. my bones hurt. my joints hurt, and its very difficult to even walk up a flight of stairs. I feel like I’m 80. No really, that’s what my bones feel like.

19. It was really hard to have to give up: all the food I’ve since become allergic. Dairy, gluten, breads, beer, pizza, asian food, chocolate, yogurts, smoothies, Starbucks, caffeine, sodas, yeast products

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

21. If I could have one day of feeling normal again I would: rise early, go for a run, hang out in the city all day, eat pizza and chocolate cake and all the other goodies I’m allergic to.

22. My illness has taught me: nothing is promised.

23. Want to know a secret? One thing people say that gets under my skin is: I will openly admit that while most people with an invisible illness hate the line “well, you look great…” I actually enjoy it. This diet really has my skin looking better and even though I’m feeling like I just got beat up, at least I don’t look the equal.

24. But I love it when people: call me, write me, hug me, invite me (even when they’re not sure if I can go)

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass…

26. When someone is diagnosed I’d like to tell them: Change your diet, right away. For me, it was a matter of staying in bed all day, or feeling like 50% of me again.

27. Something that has surprised me about living with an illness is: How ignorant we are as human beings.
I just cannot explain what I’m going through to a lot of people, without them sounding bewildered. Many Americans, sorry to say, are extremely uneducated about science and medicine.

28. The nicest thing someone did for me when I wasn’t feeling well was: to come over to my apartment, do my laundry, put my clothes away, make me food…. it was my mom ❤

29. I’m involved with Invisible Illness Week because: it’s important that people understand there are folks out there that don’t look sick but could really use your help, assistance, prayers or understanding. You should reach out to these people with positive energy and never bring any negative energy around them.

30. The fact that you read this list makes me feel: happy, and yet a little uncomfortable. I’m still getting used to the idea of this online diary I call my blog.

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Written by Mobile Speech Pathologists

September 19, 2010 at 7:37 am

Posted in Rants

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