not quite out in the open

UPDATE: I’ve decided to make this public, despite how vulnerable it makes me feel. We’ll see if I keep it that way.

In honor of Invisible Illness Week, I’ve decided to take this meme, though I don’t think I’m quite ready yet to have it out in the open. We’ll see; maybe in a few days or weeks or months I’ll change my mind.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: psoriatic athritis.
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: not being able to do everything I used to on very little sleep. I’ve fought against adjustments for a long time, but have finally decided that making them doesn’t make me weak.
5. Most people assume: that I’m not sick because I don’t look it.
6. The hardest part about mornings are: getting out of bed. Though it’s gotten better since I’ve been put on Enbrel, my morning stiffness used to be so bad it would take me an hour to physically get up. Now, I fight mostly against fatigue.
7. My favorite medical TV show is: a tossup between House and Scrubs.
8. A gadget I couldn’t live without is: my iPod for the long drives to medical appointments and lonely waiting rooms.
9. The hardest part about nights are: the pain in my joints and muscles.
10. Each day I take __ pills & vitamins. (No comments, please): Six, at the moment, plus a weekly injection.
11. Regarding alternative treatments I: am on the fence. I’m willing to try pretty much anything that might help, though.
12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. There are drawbacks to each. I think people would be more compassionate with a visible illness, but I like having control over who knows about this and who doesn’t.
13. Regarding working and career: It does make things difficult. I told one of my bosses recently, and it’s made things a bit weird. I haven’t told those at my other job, however.
14. People would be surprised to know: how thankful I am for the compassion of my friends and family, how much it acts as a buffer between me and those who do not understand.
15. The hardest thing to accept about my new reality has been: that I have a new reality, that I am sick and that there are things I cannot do anymore.
16. Something I never thought I could do with my illness that I did was: work retail again. I never thought I’d physically be able to stand on my feet for up to 9 hours per day, but I can, with the help of medications and judicious breaks.
17. The commercials about my illness: are pretty much non-existent.
18. Something I really miss doing since I was diagnosed is: going out dancing.
19. It was really hard to have to give up: hanging out with friends as much. I miss that terribly.
20. A new hobby I have taken up since my diagnosis is: photography.
21. If I could have one day of feeling normal again I would: dance all day long and wear the fiercest, highest pair of heels I could manage..
22. My illness has taught me: patience, compassion and the value of walking a mile in someone else’s shoes.
23. Want to know a secret? One thing people say that gets under my skin is: you don’t look/act/seem sick. I know I don’t. I’ve taken pains so that I don’t. But I am.
24. But I love it when people: treat me the same way they did before they found out I was sick.
25. My favorite motto, scripture, quote that gets me through tough times is: “The pain it won’t even cross my mind, there’s wonder in everything. The rope gets loose and the chains unbind, and I can do anything. Hope, it’s the light that strikes, that burns inside of me. It’s a blinding light, but somehow I can see, again.”
26. When someone is diagnosed I’d like to tell them: it’s going to be hard, but get a great doctor that you trust and that listens to you, instead of just prescribing whatever he feels like and hurrying you out the door.
27. Something that has surprised me about living with an illness is: how many other people are doing the same.
28. The nicest thing someone did for me when I wasn’t feeling well was: come visit me to take my mind off of it for a few hours — and everything my husband does for me, everyday.
29. I’m involved with Invisible Illness Week because: I think it’s an important cause.
30. The fact that you read this list makes me feel: vulnerable.

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5 thoughts on “not quite out in the open

  1. Hey,

    Hope you don’t mind, stumbled across this. Glad to hear that you finally got a diagnosis, hope that you and Tim are doing all right. Hang in there.

    • Hey,

      Not at all! It’s nice to know what “it” is, but would be nicer still, I think, to be flare-free for a bit, as you know. I heard you’ve had some health problems lately too. I hope you’re doing better!

  2. Yeah, stupid docs decided to throw another diagnosis on the pile (fibromyalgia, YAY). But I’m doing all right, now that they know what it is and are trying out new meds.

    If you’re interested, I’m attempting my own blog (sepiatone-lovin.blogspot.com). Not much to look at yet but I’m going to try to update fairly regularly.

    • It’s cool so far! I love the Gir hat. I wish I would’ve kept up with the knitting, but I’ve started making my own jewelry. I think I’m better at that than knitting and it’s easier on my hands.

  3. Pingback: getting crafty « lipstick, perfume and too many pills

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