Friday, September 14, 2012


1. The illness I live with is: Neuroborreliosis.

2. I was diagnosed with it in the year: 2012.

3. But I had symptoms since: 1993-94.

4. The biggest adjustment I’ve had to make is: Letting people see my weaknesses. I had to learn that it does not make me weak to show people my symptoms. It makes me stronger.

5. Most people assume: I am faking it or I am not really as bad as I say, because I look ok. Or that I am crazy because of the Lyme stigma that it's not real.

6. The hardest part about mornings are: There is an instant each morning. The first of fluid conscious thought is rehearsal or work or showering and then the searing pain sets in behind my right eye stabbing all the way through to the right lower back of my brain. Then I have to get up. It can easily take me an hour to get the bathroom. Then I have to rest again. Then I can try to make my way to the kitchen to get some breakfast. Then I have to rest. Then I can try eating. This all usually takes about 3 hours.

7. My favorite medical TV show is: House MD. He never gave up figuring it out. There are moments I would have given a limb for a doctor to do everything in his power to actually figure it out and not slap me with a dx which is really just a set of symptoms. There was an underlying cause which is a disease which is now being treated.

8. A gadget I couldn’t live without is: Internet and whatever gets me there.

9. The hardest part about nights are: the anxiety. I have anxiety leading up to bed time. I know it is hard work to go to sleep. I often panic about everything that “could” happen to me in the near future. Then I start to panic about not being able to control it. I know once I do fall asleep, I will have awful nightmares as my brain tries to rationalize the pain my body is in. I wont be able to get comfortable. I will wake myself up screaming in pain. And in the morning when it is actually time to wake up, I will hurt more and be more exhausted. It seems rather pointless really.

10. Each day I take 25+ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: mix herbals and Western Medicine.

12. If I had to choose between an invisible illness or visible I would choose: I don’t know. There are some days I wish I looked as bad as I feel, but at the same time, it is nice to hide in a crowd and appear “normal”. Although, people might believe me more if I looked like I feel.

13. Regarding working and career: I miss it like mad and can’t wait to be well enough to work again.

14. People would be surprised to know: that most Lymies can hide our symptoms to appear as normal. This in no way means that we feel well or are faking or lying about being sick. It means that at the end of the event/activity when we finally let go, our symptoms and pain will actually be insanely worse than if we just let it out. Picture people, even the Lymie, as  2 liter coke bottles. Throughout the social activity you and your bottle get to sit still, while ours is being rattled around enough to let the pressure build and build. At some point the bottle will pop open whether or not we want it to. Sometimes it is while we are still around others. But sometimes we can hold it off until we get home and then spend hours in bed with seizure-like tremors and severe neurological oddities and pain like you could never imagine.

15. The hardest thing to accept about my new reality has been: that I have very little control.

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

17. The commercials about my illness: don’t exist.

18. Something I really miss doing since I was diagnosed is: I honestly don’t remember being well for more than a few hours at a time. (sometimes it doesn’t happen for weeks or months) I know I was when I was a kid, but I don't really remember what it is like. Also, I spent a great deal of time covering up my true problems (see #14).

19. It was really hard to have to give up: sports, working.

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

21. If I could have one day of feeling normal again I would: go for a run, take a shower (a very challenging task normally), and create something maybe a painting or such.

22. My illness has taught me: Lyme brings out the best in some people and the worst in others. There seems to be no middle ground.

23. Want to know a secret? One thing people say that gets under my skin is: “But you look so great!” “You seem to be fine/better” yeah, I am faking it. I don’t always want to be the sick miserable one. Or “I knew someone who had that and she got better with….” “ If you just were more active, you'd be fine”. I know what is happening with my body. I am fighting a huge infection, I am not tired because I am depressed. I cannot just be more active. I have researched treatment options and thank you for trying, but I picked my path for a reason. I know I have done more research than you.

24. But I love it when people: ask me to hang out at my house or offer to come get me and take me for coffee/tea, or to a movie or park. Something that I can still do.

25. My favorite motto, scripture, quote that gets me through tough times is: “I say, we kill the beast!” You know the line leading up to the number in Disney's "Beauty and the Beast".

26. When someone is diagnosed I’d like to tell them: “It will be hard. You need to keep going. You may lose some people in your life, but there are amazing communities full of loving people who truly understand and won’t dismiss you.”

27. Something that has surprised me about living with an illness is: how many people distrust in general. And on the other hand, there are amazing individuals with more grace than imaginable, who are willing to help.

28. The nicest thing someone did for me when I wasn’t feeling well was: literally keep me alive (Thanks, Samn!)

29. I’m involved with Invisible Illness Week because: I have made it my new life mission to spread awareness and hopefully help with prevention so fewer people have to suffer through Chronic Lyme

30. The fact that you read this list makes me feel: important. I often feel like I have become "part of the surplus population" (Dickens)

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