http://invisibleillnessweek.com/submit-article/30-things-meme/
a few weeks ago and I stumbled on a little exercise about 30 things about my invisible illness. It was a fun exercise and it's a simple way to give loved ones an idea of what's going on and how it feels without having the "FAI Curse".
Here's how it went for me:
*Note*: Yes swearing sometimes comes easily to me, especially with the pain. If any soft souls reading this take offense from my words, you can suck it up and keep reading or just read other blogs. I don't care to censure myself here.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: chronic hip pain from a cogenital malformation aka FAI (Femoroacetabular impingement)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is: Abandon my very active life (kung fu instructor, sea-doo driving, playing music, physically demanding job)
5. Most people assume: I'm still able to do all the stuff I was able to do 4 years ago.
6. The hardest part about mornings are: Waking up tired with pain and going to work even when I know I haven't had a wink of restful sleep. It's worse when the next morning is a repeat of pain, no sleep and going to work.
7. My favorite medical TV show is: House (Like me, he has chronic pain and work is a distraction from it).
8. A gadget I couldn’t live without is: Laptop (Including WoW and a very fast internet connection).
9. The hardest part about nights are: Waiting for the pain to "tune out" and hoping that I get a few hours of sleep.
10. Each day I take _X_ pills & vitamins (it depends on the pain).
11. Regarding alternative treatments I: Hate people who believe they can "cure everything" if a person "believes". Then if you don't become pain-free, the "guru" will say it's not the alternative treatment's fault it's your own fault because you don't "believe".
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE!!! People wouldn't accuse me of lying or malingering and my doctors wouldn't have treated me like a junkie or drug seeker, they left me full of pain for years until they had proof of my chronic pain.
13. Regarding working and career: I work a shitty office job, cause all the nice light work jobs go to the fatty happy pregnant women. I can't wait to get back to my regular work outdoors, take courses to advance my career and escape the goddamned monkey house (aka the office).
14. People would be surprised to know: Before "shit hit the fan" I actually wanted to get married and have kids. Now my answers are No and HELL NO on those questions.
15. The hardest thing to accept about my new reality has been: The isolation. I've lost all my friends from my previous activities and I'm too tired to go out sometimes.
16. Something I never thought I could do with my illness that I did was: Help pack stuff and un-pack stuff from boxes when my parents moved in 2012.
17. The commercials about my illness: Are lost in an other universe...inexistant. Nobody (including the past me) really knows what FAI is.
18. Something I really miss doing since I was diagnosed is: Martial arts and any kind of sport (even golf and running).
19. It was really hard to have to give up: Kung Fu and spending a day riding the waves on my Sea-Doo.
20. A new hobby I have taken up since my diagnosis is: Developped a taste for Artisan Beer. I enjoy scotch ales, barley wine and especially stouts...gotta love the stouts.
21. If I could have one day of feeling normal again I would: Spend a day on the lake or the St-Lawrence on my 215 HP water rocket.
22. My illness has taught me: People are full of BS and whine about the little trivial events of their lives when they haven't gone through anything tough at all. Men my age only want one thing and they definitely are incapable of dating a woman with a chronic illness. Doctors are careless assholes.
23. Want to know a secret? Things people say that get under my skin is: Before I was diagnosed, a few people (including doctors, family and "friends") told me "If nothing was found yet, it's probably all in your head". Worse are those who said it to my back at work. Another one I heard was : "At least you don't have cancer". Yeah, well at least I don't have cancer but if I did, I would have died by now from waiting too long for the right diagnosis thanks to the scumbag doctors.
24. But I love it when people: Include me like a "normal" person.
25. My favorite motto, scripture, quote that gets me through tough times is: "People are stupid and I hate them"~ Rat, Pearls before Swine
26. When someone is diagnosed I’d like to tell them: There's not always a place for people like us, healthy people will never understand, even Hell has no place for us so make the most of it anyway. Enjoy the good days and take it easy on the bad ones, pacing is an art that takes patience and sacrifice to master.
27. Something that has surprised me about living with an illness is: How long I have endured the pain and not given up (over 4 years).
28. The nicest thing someone did for me when I wasn’t feeling well was: My brother cancelled a golf tournament to take care of me after a surgery. He's also stayed by me and helped me all these years even though most BF and friends have run away.
29. I’m involved with Invisible Illness Week because: Ermmmm, I'm not. Fuck this question.
30. The fact that you read this list makes me feel: Warm and Panda-ish (happy and fuzzy) inside.
~ Klau
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