Hang with me peope, it’s Invisible Illness Week starting September 14th and I am GEARING UP! Finally! Find out more about Invisible Illness Week at www.invisibleillness.com
But read this first, okay?
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: fibromyalgia
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: my reality needed a complete makeover.
5. Most people assume: that I couldn’t hack working or am really, really lazy
6. The hardest part about mornings are: the first breath in as you wake up, you just know it’s going to be a bad day when you wake up and every single pain alarm in your body is going off. Days like that, throwing in the towel now, thanks!
7. My favorite medical TV show is: well, if you count Bones as a medical show. Just started watching it about five days ago. I only watch TV when I flare and it seems like TNT was having a Bones marathon…
8. A gadget I couldn’t live without is: oh, I probably could live without it but I really like it; my iPhone. It’s nice that it has a GPS system that can actually help me find my way out of a paper bag. I know that “total loss of direction” is NOT a listed fibromyalgia symptom but in my book it should be!
9. The hardest part about nights are: it’s a toss up between really trying hard to relax enough to go to sleep (who knew it’d be so hard to relax!) and waking up at 1am and knowing you are done sleeping for the night.
10. Each day I take 12 pills & vitamins.
11. Regarding alternative treatments I: have tried a whole lot of them…but am willing to try some more if they look promising. Whatever works!
12. If I had to choose between an invisible illness or visible I would choose: neither. Yes, my reality is taking it’s own sweet time adjusting…
13. Regarding working and career: an accountant with short-term memory loss working thirty cases in rotation…nope don’t see that happening. Blogging seems to be more my style at this moment. I can usually remember what I’m thinking in one sentence or paragraph. Any more than that…it can get interesting.
14. People would be surprised to know: I can smile. Few have seen it. I even show teeth occasionally.
15. The hardest thing to accept about my new reality has been: accepting my new reality! I notice that the longer this goes on, the fewer “good days” I have. That is chilling.
16. Something I never thought I could do with my illness that I did was: I found that I can travel with my husband. He travels lots! I pay for it, but it is so worth it because we have a lot of fun together.
17. The commercials about my illness: are incredibly stupid. How many people are actually helped by Lyrica? And how many are lugging around an extra 40 pounds because of it? The actresses are incredibly helped and incredibly thin. Oh please.
18. Something I really miss doing since I was diagnosed is: I miss not worrying about if I am going to be able to keep scheduled appointments. It really sucks when I have to be a flake and bail because I can’t get the brain in gear.
19. It was really hard to have to give up: working; at the end I really hated the job, but it was something that I’d worked hard for and it really hurt to give it up.
20. A new hobby I have taken up since my diagnosis is: blogging. kind of a silly answer because if you’re reading this, you already know. When I find a new hobby I’ll tell you about it.
21. If I could have one day of feeling normal again I would: well…okay, how do I say this? How about…That would be between my husband and me and yes, it would take the entire day.
22. My illness has taught me: to know that the world isn’t going to end today just because my body is overwhelmed with pain and my brain refuses to work. Eventually I’ll get some kind of equilibrium…just give it some time.
23. Want to know a secret? One thing people say that gets under my skin is: Oh my sister said this and it made me want to stick a bunch of clothespins on her (with super glue) and say it right back to her “Can’t you just shake it off?” My sister, of all people! Sorry, haven’t found peace on that one.
24. But I love it when people: I love the way my MommaJan (my husband’s mom; she’s my favorite mom-in-law ever! Let me rephrase that…I love and admire her. We’ll leave it at that.) just finds a way to say something positive…and I’m pretty sure she’s never wanted to stick clothes pins on her sister.
25. My favorite motto, scripture, quote that gets me through tough times is: “When all you can do is all you can do, then all you can do is enough.” I heard that phrase while I was in college (working full-time, going to school full-time and lots of kids at home) and it has stuck with me. It really works for me now!
26. When someone is diagnosed I’d like to tell them: DON’T BUY SNAKE OIL! And just because a doctor prescribes it doesn’t mean it isn’t snake oil. Investigate everything…the Internet is a beautiful thing; a very useful research tool–use it! And get on the chronic pain and fibromyalgia forums…talk to people. You aren’t alone.
27. Something that has surprised me about living with an illness is: I have to walk with a hitch in my giddy-up when I use my blue handicapped placard even if I’m not feeling a hitch in my giddy-up because I’m tired of mean ol’ in-you-business people telling me off about I’m using that placard illegally.
Of course those “saints” don’t stick around for me to pull my “got a right to it” card or my explanation. Using a limp is a chicken’s way out. Yep, that’s me. Don’t have the energy to waste on that stuff. Get a life people!
28. The nicest thing someone did for me when I wasn’t feeling well was: the last five days I have felt like absolute pond scum…no, worse than pond scum. Algae? And my husband happily sat down and watched TV with me while I was pretty much confined to the couch. He loves to get out and about, but he’s lots like his Mom…he’s just so beautifully positive. Wish it would rub off!
29. I’m involved with Invisible Illness Week because: Wouldn’t it be a wonderful thing if I didn’t have to fake a limp when I use my handicap placard? Not all handicaps are visible…right up to the point I collapse and then it gets real visible.
30. The fact that you read this list makes me feel: Well, if you’re my sister, I’m scared. Anybody else, thank you so much, I appreciate your interest.
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
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