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National Invisible Chronic Illness Awareness Week

Shared by Teri Robert (thank you) - and completed by me:


30 Things About My Invisible Illness, Migraine, You May Not Know



Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. Invisible illnesses are easy for "healthy" people to ignore. This adds to the burden of disease and makes lives even more difficult.



Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here's my meme...



1. The illness I live with is: Migraine disease & Fibromyalgia

2. I was diagnosed with it in the year: 1997

3. But I had symptoms since: 1980

4. The biggest adjustment I’ve had to make is: trying to find a job I can hold.

5. Most people assume: that Migraines are "just headaches" and that FMS is just 'muscle pain'

6. The hardest part about mornings is: getting out of bed and thinking clearly

7. My favorite medical TV show is: House... wish he could figure me out.

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

9. The hardest part about nights is: Trying to fall asleep and get comfortable.

10. Each day I take: a fistful of meds and vitamins and pray I get through the day

11. Regarding alternative treatments I: Done that got the t-shirt, forgot I tried it and tried it again.

12. If I had to choose between an invisible illness or visible I would choose: visble... less need to explain.

13. Regarding working and career:  It is diffiuclt to have a career, or career goals when it is hard enough just to work consistently.
14. People would be surprised to know: I am in a lot more pain than it seems.

15. The hardest thing to accept about my reality has been: is that my life has become very small as I am unable to do many of the things I could or go to events.

16. Something I never thought I could do with my illness that I did was: Went on a trip to Scotland, which was far less painful than I expected, which just shows you Lyrica does do something for FMS

17. The commercials about my illness: annoy me.

18. Something I really miss doing since I was diagnosed is: too many to count.
19. It was really hard to have to give up: Going for my Phd, having children.

20. A new hobby I have taken up since my diagnosis is: same hobbies... writing.

21. If I could have one day of feeling normal again I would: Do a happy jigg and then go out and party like there is no tomorrow.
22. My illness has taught me: that there is no need to be guilty and slow down, as long as you are happy, with less pain, life does not have to be high speed and large goals.

23. Want to know a secret? One thing people say that gets under my skin is:  people who are whiners when what they are whining about (headache) when I have a (migraine) and not whining.
24. But I love it when people: want to comprehend what I go through

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: Sucks to be you.  Seriously.  Then I say learn to pace yourself, learn to limit yourself, learn to compramise and you will save yourself some pain.
27. Something that has surprised me about living with an illness is: how much time I seem to lose.

28. The nicest thing someone did for me when I wasn’t feeling well was: when my brother and bf said I should not feel guilty, that I did not need to work until I could and it would all be well.

29. I’m involved with Invisible Illness Week because: because it promotes awareness, that it tells people they are not alone and because it is important for people to understand even without any obvious disibility an invisible disability can be crippling and life altering.

30. The fact that you read this list makes me feel: like maybe we can bridge the gap between pain and language.



Please participate if you haven't already by answering these questions on your blog to keep this going. You can 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.
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