1. The illness I live with is: Chiari I Malformation, Postural Orthostatic Tachycardia Syndrome (Autonomic Dysfunction), Ehlers Danlos Syndrome, Cranio-cervical instability/Functional cranial settling
2. I was diagnosed with it in the year: Chiari in 2002, the rest in 2003
3. But I had symptoms since: 1998-ish
4. The biggest adjustment I’ve had to make is: giving up on the idea of having a career; getting used to a drastic reduction in ALL activity
5. Most people assume: that if I look like everyone else, I must feel like everyone else. That if I put a smile on my face, then I’m doing just fine.
6. The hardest part about mornings is: Facing another day. Knowing it will feel like 10,000 days. Feeling like I weigh 10,000 pounds. Feeling worse than I did the night before. Feeling more tired than I did the night before. Feeling like my life currently holds such little meaning—why should I force my body out of bed just to watch TV all day?
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My laptop…connection to civilization
9. The hardest part about nights are: Being all alone with my pain and my thoughts, and unable to sleep, over and over and over again.
10. Each day I take __34__ pills & vitamins (Plus fish oil and any as needed meds, like pain meds). (No comments, please)
11. Regarding alternative treatments I: generally stick to what a doctor recommends, with a couple recent exceptions. I believe in empirically-supported medicine. I love massage therapy!!!
12. If I had to choose between an invisible illness or visible I would choose: I think I’d prefer a visible illness, because then people would understand immediately that my smile does not come easily. It is a gift for them.
13. Regarding working and career: When I thought I was getting better, around 2007, I had a piano studio of 24 students. But it was really a ruse. I was living off of stimulants and narcotics. I couldn’t keep it up. My body started protesting with narcoleptic episodes. As soon as I slowed down on the meds, my ability to work slowed down, too. I’m now down to about 3 half-hour lessons/week. And even that is a challenge. I don’t even know if this is the career I want to stay with. It’s just the only career I thought I could pull off as I was going through college. I have no idea if or when I’ll be able to work more. And I have no idea what job I would have chosen without limitations, or if I'll ever find a different one.
14. People would be surprised to know: that I never have a moment that is symptom free or pain free. I cannot remember what it feels like to live without pain. Also, the severity of everyday fatigue.
15. The hardest thing to accept about my new reality has been: My lack of independence and loss of social life. They do go together.
16. Something I never thought I could do with my illness that I did was: Graduate from a 4-year college. At one point, I also got into really good physical shape. I hope to do that again when my body allows.
17. The commercials about my illness: n/a
18. Something I really miss doing since I was diagnosed is: Gymnastics, Exercising, Singing, Performing on stage in some way.
19. It was really hard to have to give up: Driving…I need to drive again for my sanity. I feel so confined.
20. A new hobby I have taken up since my diagnosis is: I started a support group, but then became physically incapable of running it. I read a lot of books, but that’s not new. I watch endless hours of tv, but I’m not proud of it. I guess I’ve learned to relax. I always used to be so busy and stressed in high school and younger.
21. If I could have one day of feeling normal again I would: spend it doing all of the things my fiancé has always wanted to do with his partner, but can’t with me. He deserves that day of normalcy even more than I do. So it would be his choice. I think it would involve skipping and jumping and running (for me).
22. My illness has taught me: how to relax. How to listen to my body. How to revise my expectations for myself in life. How to accept myself as I am now.
23. Want to know a secret? One thing people say that gets under my skin is: if you just stay positive 24/7, you’ll be better off. That’s not necessarily true! Okay? We need to live in the real world, and we need to accept our circumstances as they are in order to cope with them. Not just pretend that everything is fine and put on a happy face. No one should have to pretend to be optimistic 100% of the time!
24. But I love it when people: Care, Listen, Learn about my messed up brain. Especially doctors.
25. My favorite motto, scripture, quote that gets me through tough times is: “A journey of a thousand miles begins with a single step.” –Lao Tzu. Because what can we really do, other than persevere.
26. When someone is diagnosed I’d like to tell them: Allow yourself to grieve, time and time again, over everything you lose to this illness. It’s the only way you will learn to accept your new self.
27. Something that has surprised me about living with an illness is: How ignorant the entire medical community is about all of these illnesses. The number of times and ways they have let me down.
28. The nicest thing someone did for me when I wasn’t feeling well was: Lay next to me, without touching me, when my skin was too sensitive to be touched. Just because my skin hurts, doesn’t mean I don’t want to be held, just that I can’t be.
29. I’m involved with Invisible Illness Week because: n/a
30. The fact that you read this list makes me feel: Heard.
