I filled this out last year as part of Awareness Week running from Sept 14-18. Thought I might fill it out again this year to see what's changed.
Please keep in mind as you go about your days, many people who don't look sick are.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
Type III Ehlers Danlos Syndrome (Hypermobility Type) (often shortened to HEDS pronounced "heads". come on, that's funny.)
Lumbar Spinal Stenosis with congenital lumbar spinal fusion
A Mystery Autoimmune disease (Scleroderma? Lupus? I dunno and the docs dunno either.)
2. I was diagnosed with it in the year:
Autoimmune: Uh... working on it.
3. But I had symptoms since:
HEDS: 10 years old
Autoimmune: 1 year ago
4. The biggest adjustment I’ve had to make is:
HEDS: Learning to walk without dislocating--Still haven't figured it out. And when that doesn't work, learning to deal with the condesending smiles I get from strangers when I'm in my wheelchair.
Stenosis: I can't lift anything over 20lbs. You know how little 20lbs is?
Autoimmune: Learning to write, type, bathe, eat, dress, hold a cane, and wheel my chair without the use of my fingers.
5. Most people assume: I'm a trainwreck and there's just always something wrong with Kris.
6. The hardest part about mornings is: waking up and taking stock of what joints have come out while I slept and putting them back in place while I'm still really groggy and sore but without bending any of my fingers.
7. My favorite medical TV show is: I'm not a big TV person even though I could use a House in my life right about now.
8. A gadget I couldn’t live without is: my cane.
9. The hardest part about nights is: finding any sort of comfortable position. The one or two positions that don't hurt my back are guaranteed to dislocate my shoulders. I never sleep more than an hour or two straight (unless I take something to knock me out) because I've got to be resetting my arms.
10. Each day I take __ pills & vitamins. (No comments, please): As little as 9 and as many as 12.
11. Regarding alternative treatments I: find that meditation is still the best way to control my pain when my meds can't touch it (and at other times in general).
12. If I had to choose between an invisible illness or visible I would choose: It's all pro's and con's and I can't get behind choosing any illness.
13. Regarding working and career: I want to work so bad. It kills me that I can't. I just keep hoping that one day we'll figure out some treatment plan that works.
14. People would be surprised to know: that I'm okay talking about what's going on with me. I used to not be. I used to be sort of embarrassed about it. But now, this is my world. Knowing me is about knowing this--just a little bit.
15. The hardest thing to accept about my new reality has been: when I wake up, I never know just how bad or how good I am going to feel that day. All plans are up in the air, always.
16. Something I never thought I could do with my illness that I did was: graduate college, garden again, and crochet/knit again.
17. The commercials about my illness: PFFT. There are no comercials. Most DOCTORS don't know what HEDS is.
18. Something I really miss doing since I was diagnosed is: picking people up when I hug them. That is really hard not to do and I miss it a ton. (This one is still REALLY true.)
19. It was really hard to have to give up: applying to jobs, hiking, running was cool, going for long walks, not having to remember what pills I have to take when.
20. A new hobby I have taken up since my diagnosis is: bonsai. They sit there; sometimes I water them. Sometimes I prune them. Oddly satisfying. Plus I blog now.
21. If I could have one day of feeling normal again I would: I'd spend the morning at the beach then take an afternoon hike in the woods.
22. My illness has taught me: that there is nothing in this world that has an ass I can't kick.
23. Want to know a secret? One thing people say that gets under my skin is: when they say nothing. When I walk/hobble/wheel into a room and I'm worse than normal/before and people ignore it, that's hard. I feel like a dick bringing it up at those times because they mean well, but you know what? That is what is new with me. It sucks but this is what I do. When people ask, it shows that you care. I won't think that you pity me because if I thought you would, we wouldn't be friends. OR when people do ask and when I answer they say, "Really?" or roll their eyes like this is an inconvenience to them.
24. But I love it when people: Laugh when I make jokes about my condition, give me good, long hugs, and ask me for updates.
25. My favorite motto, scripture, quote that gets me through tough times is: "Beyond logic, beyond reason, beyond hope."
26. When someone is diagnosed I’d like to tell them: Educate yourself. If you've been graced with an "orphan disease," sometimes in a medical situation you will be the only one in the room who knows anything beyond a quick definition about your condition. You need to know the ins and outs of it. Be your own advocate and if you can't, find someone you trust who will.
27. Something that has surprised me about living with an illness is: that all people have the same reaction to seeing me with my cane. Double take at me, look at the cane, look down at my feet, then up at my face- usually with a disapproving look. Yup, I get it. My leg isn't in a cast so you think I use this thing to look cool. Thanks. It's just amazing the amount of people who follow this exact same order of motions. Also how many people will walk into, jostle, kick, or block in a person in a wheelchair. Dude. WTH?
28. The nicest thing someone did for me when I wasn’t feeling well was: give me a long hug and remind me that I am loved and not alone.
29. I’m involved with Invisible Illness Week because: it affects me, my family, and many of my friends and so few people unaffected understand.
30. The fact that you read this list makes me feel: thankful that you care enough to have gotten this far. If you have, please comment. No one commmented on the last one, so I'm not even sure if anyone bothered to read it. I know sometimes in the face of shit like this that people don't know what to say, but fuck that and just say anything. Say, "Hi." That'd work to. Just let me know that this personal shit that I'm putting out there for the sake of "awareness" is not just going out in a vacuum.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com