Sunday, June 6, 2010

Invisible Illness Questionnaire

Today is Invisible Illness Awareness Day. I am posting my Invisible illness questionnaire.

1. The illness I live with: Lyme disease and Babesia

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

3. But I had symptoms since: 2005 (at least)

4. The biggest adjustment I’ve had to make is: How I work and learning how to recreate viable career options. Also learning to function at a different speed.

5. Most people assume: That I am totally fine and that because I take medicine I am cured

 6. The hardest part about mornings are: Is waking up early or having the needed energy to function at a normal physical level.

7. My favorite medical TV show is: House

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

9. The hardest part about nights are: not having the ability to go out and socialize as often as I used to.

10. Each day I take 18 pills. (this varies)

11. Regarding alternative treatments: I wholeheartedly believe they work and have helped me get to where I am today.

12. If I had to choose between an invisible illness or visible I would choose: Thats a tough call...I like that I don't look sick all the time but it is easier when you have a visible illness for others to understand.

13. Regarding working and career: I am in the process of creating a home based online business and have spent the last 2 years working from home on an obscure antiquarian book project.

14. People would be surprised to know: How hard I have had to work to rebuild my life and that while I appear normal and functioning sometime it is a major effort to get through a day.

15. The hardest thing to accept about my new reality has been: my physical limitations....I hate that I am not strong and energetic!

16. Something I never thought I could do with my illness that I did was: survive

17. The commercials about my illness: non existent.

18. Something I really miss doing since I was diagnosed is: road trips, having a cocktail with friends, doing what I want when I want....I have a long list of things I miss.

19. It was really hard to have to give up:being in crowded public places (like concerts or festivals)

20. A new hobby I have taken up since my diagnosis is: cooking and learning healthy ways to create good food  for myself and family.

21. If I could have one day of feeling normal again I would: marathon shopping trip in NYC.

22. My illness has taught me: to slow down, appreciate the small things, greater empathy for others, appreciation, patience, respect for my body, love, how to be strong, how to stand up for myself

23. Want to know a secret? One thing people say that gets under my skin is: Nice must be nice to not have to get up and go to work every day (I work hard every single day but in a nontraditional environment...just because I don't punch a clock or sit in an office provided by an employer does not mean I am a slouch).

24. But I love it when people: slow down and go my speed without making me feel bad.

25. My favorite motto, scripture, quote that gets me through tough times is: One day at a time....tomorrow may be better so take a deep breathe and get through today.

26. When someone is diagnosed I’d like to tell them: Get a very good LLMD can work woth them to rebuild your life...there is hope.

27. Something that has surprised me about living with an illness is: How many people refuse to acknowledge Chronic Lyme Disease.....thousands and thousands of people are not all "making up" the same fake disease. It's absurd!

28. The nicest thing someone did for me when I wasn’t feeling well was: making sure my son was cared for and entertained when I was unable to do it myself.

29. I’m involved with Invisible Illness Week because: I want others to be aware that they are not alone.

30. The fact that you read this list makes me feel: taking the time to read this you are educating yourself and taking the time to learn about me. Thank you.

Thanks to Ashley and Eric for inspiring me to write this today!!!

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