Wednesday, September 9, 2009

30 Things About My Invisible Illness You May Not Know

This has been going around. I thought I would benefit from completing the questions as much as others would benefit from reading.

30 Things About My Invisible Illness You May Not Know

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

2. I was diagnosed with it in the year: 2001

3. But I had symptoms since: Most of my life, although they showed up more intense in 1995 and stayed.

4. The biggest adjustment I’ve had to make is: Accepting my limitations.

5. Most people assume: I feel well because I'm on my feet. Also they say I sound well when I talk. I should've been an actress!

6. The hardest part about mornings are: First working out the stiffness by stretching and moving. Then trying to think WHAT to fix for breakfast. I wish I didn't have to worry about it. But I must eat before taking my medication.

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My computer is my connection to family and friends.

9. The hardest part about nights are: When I am awaken and can't get back to sleep. The next day I am more exhausted than usual and my Fibromyalgia pain level is increased

10. Each day I take 11 prescription pills. I also take 15 OTC pills a day. All of which I feel are important to getting through my day. This does not count pain medication I have for use when needed.

11. Regarding alternative treatments I: Am open. I appreciate my chiropractic treatments and have had massage. Would like to try Acupuncture.

12. If I had to choose between an invisible illness or visible I would choose: Visible so others would be more understanding...most people are visual and forget, because they can't see, that I am in constant pain from head to toe, literally.

13. Regarding working and career: I miss work. Never expected I would say that. I felt like I did my job and related to people well. For the most part I felt accomplished.

14. People would be surprised to know: That I am on Social Security Disability (SSD). I'm not proud that I can't work. But appreciate being able to receive SSD to help with expenses.

15. The hardest thing to accept about my new reality has been: That I have a new reality. That my life has changed drastically.

16. Something I never thought I could do with my illness that I did was: Feeling as I do, I never thought I could push myself to accomplish what I do in a day. I would have expected I would lay myself down.

17. The commercials about my illness: I'm glad commercials are being made about FM. I wish there were more options for FM/CF sufferers and more information provided in the commercials.

18. Something I really miss doing since I was diagnosed is: Hiking. To even be able to go up slight inclines. To have stamina for the entire day.

19. It was really hard to have to give up: stamina

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

21. If I could have one day of feeling normal again I would: Take my grandkids to Disneyland and be able to enjoy the whole day without fatigue and pain.

22. My illness has taught me: To enjoy small accomplishments and to appreciate the simple things in life.

23. Want to know a secret? One thing people say that gets under my skin is: "You look great, you must be feeling better." NOPE!

24. But I love it when people: Will sit and visit with me rather than insisting we need to go somewhere.

25. My favorite motto, scripture, quote that gets me through tough times is: Not coming to me right now...fibro fog!

26. When someone is diagnosed I’d like to tell them: It is important to have a good doctor who will direct you to the right medication. To know that communication with other FM and/or CF sufferers is an important support system.

27. Something that has surprised me about living with an illness is: How much time it consumes.

28. The nicest thing someone did for me when I wasn’t feeling well was: Make me a cup of tea. Tell me when I needed to rest when I was trying to push myself. He was taking care of me.

29. I’m involved with Invisible Illness Week because: I would like others to have a better understanding of invisible illnesses and to understand me a little better.

30. The fact that you read this list makes me feel: You are interested in what I have to say about my FM/CF

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

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