Sept 10-16 is National Invisible Chronic Illness Week. This is a meme for people living with invisible illnesses to answer 30 things. So here’s mine!
1. The illness I live with is: both ACM (Arnold Chiari Malformation) type 1 and EDS (Ehlers Danlos Syndrome) hypermobility type.
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: not being able to turn my head after a complete craniovervical fusion (i.e., my head is fused to my neck and all the way down), and the pain that ensues whenever I try (involuntary, through muscle memory – the “what’s that over there?” reaction).
5. Most people assume: I have bad headaches, when in fact, the bad headaches went away after my brain surgery.
6. The hardest part about mornings are: cracking all my joints & putting some back in place.
7. My favorite medical TV show is: I’m a die hard E/R fan. I’ve seen the series in its entirety about four times.
8. A gadget I couldn’t live without is: my iPad.
9. The hardest part about nights are: finding a comfortable position.
10. Each day I take __ pills & vitamins. 15
11. Regarding alternative treatments I: am open-minded, but not many have worked for me. Acupuncture provides relief, but it only lasts a couple of hours.
12. If I had to choose between an invisible illness or visible I would choose: What I have now. It’s just what I know. I’m sort of visible, since I’m bald and have a 13″ scar down the back of my head and neck. And I either use a wheelchair or walk like an old man.
13. Regarding working and career: I went on disability in June 2005 & returned in January 2007. Unfortunately, going back contributed to the decline that is part of EDS, and it was detrimental to my health. I went back on disability in Sep ’10 & it’s permanent this time. I aged and went downhill physically about 10-15 years in those 3 years I returned to work.
14. People would be surprised to know: I actually don’t mind leading a sedentary lifestyle.
15. The hardest thing to accept about my new reality has been: no longer being able to drive.
16. Something I never thought I could do with my illness that I did was: find a physical therapist who wouldn’t harm me (PT has to be approached differently with EDS patients… books have been written about it).
17. The commercials about my illness: don’t exist.
18. Something I really miss doing since I was diagnosed is: riding my scooter. GOD how I loved that.
19. It was really hard to have to give up: most of my co-workers, who stopped coming around after awhile. I put more emotional stock into those relationships than I should have.
20. A new hobby I have taken up since my diagnosis is: selling stuff on eBay and Amazon.
21. If I could have one day of feeling normal again I would: take a day-long ride on a scooter.
22. My illness has taught me: to never take things for granted, especially a young, healthy body.
23. Want to know a secret? One thing people say that gets under my skin is: “You look good” or “you look better”. It’s an act, a face I put on, when I feel like shit but go out anyways. How I look isn’t reflective of how I feel.
24. But I love it when people: ask if they can do specific things. Rather than, “let me know if you need anything”, offer something, like, “can I take you to a doctor’s appointment sometime?”
25. My favorite motto, scripture, quote that gets me through tough times is: “Yes, these events are true, yet sometimes they seemed to have happened to someone else, and often I feel like a curious onlooker or someone trying to remember a dream. […] I view this time with surprising warmth. One can have, it turns out, an affection for the war years.” – Steve Martin
26. When someone is diagnosed I’d like to tell them: It’s going to be a living hell, but you will learn how to get through it.
27. Something that has surprised me about living with an illness is: When you’re in a wheelchair, most people look at and talk to the person pushing you. It’s so offensive!
28. The nicest thing someone did for me when I wasn’t feeling well was: When I used to have headaches that were unbearable, had me in tears, and nothing could touch them, Christian would lay with me and stroke my head, or hold my face in his hands. It was the only comfort I had.
29. I’m involved with Invisible Illness Week because: People don’t think you’re supposed to ask disabled or ill people about their condition. The opposite is true! We want to talk about it… we need to talk about it.
30. The fact that you read this list makes me feel: Surprised, since most people ignore my Facebook notes!
Had a Great Fall 