Monday, August 31, 2009

Thirty things about my invisible illness you may not know

In the spirit of those "25 things about me" list that are making their way around MyFace and Spacebook, the organizers of "Invisible Illness Awareness Week" have put together the questionnaire "thirty things about my invisible illness you may not know." Here's my contribution:

1. The illness I live with: Chronic Lyme disease

2. I was diagnosed with it in the year: August 2008

3. But I had symptoms since: November 2007

4. The biggest adjustment I’ve had to make is: Accepting that I'm sick.

5. Most people assume: That I'll get well really soon.

6. The hardest part about mornings are: Taking the handful of pills at breakfast.

7. My favorite medical TV show is: House.

8. A gadget I couldn’t live without is: iPod, for it provides audiobooks when I can't read.

9. The hardest part about nights are: Trying to sleep when I hurt all over.

10. Each day I take 42 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: Am so thankful I found Rose DeDan and her shamanic/Reiki healing practice. And am thankful that Nick and I both can now do Reiki as well.

12. If I had to choose between an invisible illness or visible I would choose: I may end up with a visible illness if I get a PICC line in. But if I had to choose, I'd pick a visible illness. Not that those with visible illness suffer any less, but at least I wouldn't hear "you don't look sick."

13. Regarding working and career: I'm very lucky that I don't "have" to work.

14. People would be surprised to know: I harbor no ill will towards ticks.

15. The hardest thing to accept about my new reality has been: Realizing that my old ways of working through a situation were no longer useful or healthy, and that I needed to accept the "new me" in my new situation.

16. Something I never thought I could do with my illness that I did was: Snowshoeing, even if it was just for a couple of hours.

17. The commercials about my illness: Ha ha commercials about chronic Lyme because it "doesn't exist."

18. Something I really miss doing since I was diagnosed is: Volunteering for Vegan Outreach.

19. It was really hard to have to give up: The illusion that I was in control.

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

21. If I could have one day of feeling normal again I would: Spend the day in bed with my husband doing lots of things that are best left private.

22. My illness has taught me: So much I it should probably be a separate blog post.

23. One thing people say that gets under my skin is: "Maybe you're sick because you're vegan."

24. But I love it when people say: "You're looking good, but how do you feel?"

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass; or, Buy the ticket, take the ride.

26. When someone is diagnosed I’d like to tell them: I will listen to you.

27. Something that has surprised me about living with an illness is: There's a lot of humor to be found in illness. Dark humor, perhaps, but humor nevertheless.

28. The nicest thing someone did for me when I wasn’t feeling well was: A bunch of my friends bought me a "spa day" package when I was feeling particularly unattractive. It was total surprise, and I was really touched by their caring.

29. I’m involved with Invisible Illness Week because: Invisible illnesses suck.

30. The fact that you read this list makes me feel: Heard.


  1. Thank you so much for filling this out to share more about yourself and also letting others know about Invisible Illness Awareness Week.

    We invite you to come to our 5-day VIRTUAL conference for those living with illness for National Invisible Chronic Illness Awareness Week. We have 20 speakers with 1 hours slots who will give 30 minute presentations LIVE via BlogTalkRadio (4 per day M-F) and then take caller's questions.

    Visit to see our variety of expert speakers and topics on all aspects of living with illness, from housekeeping to relationships, college and careers and learning to cope more effectively with chronic illness and pain in your life.

  2. like your list very much...really resonates with me. i should do mine...i think i will have some similar items on my list. Sinjun

  3. I have been reading your blog via RSS and it's hard to comment on my G1 phone...

    But I hate having an invisible illness too. I have Candida, and most likely Lyme. I'm being treated for both. Bleh. I am getting better, slowly, and I definitely have bad times still.

    My thoughts are with you.

  4. Really??!? I harbor IMMENSE ill will toward ticks, and I don't even have a Lyme diagnosis (yet?). Most of my ill will is on behalf of you and your darling hub, in fact. My invisible illness is depression/anxiety/ perhaps something else as yet undiagnosed. What was your experience like, participating in invisible illness week? I never have before, but I just heard of it, from reading your blog. If you found it worthwhile, I think I would, as well.