Awareness / Blog Meme / Chronic Pain / Fibromyalgia / Invisible Illness Awareness / Invisible Illness Awareness Week / Meme / MPS / Myofascial Pain Syndrome

Invisible Illness Week: 30 things…

The person behind the post
(and the pain!)

Next week is Invisible Illness Awareness Week. I first learned about this meme through Stacey over at Savour Your Spoons and wanted to write a post of my own for it but at the time I lacked internet. Now that I have it again, well, here I am. Some of these questions will be difficult for me to answer, seeing as I’m still in the in-between stage of having one diagnosis and needing another. That doesn’t mean I won’t try.

I typically try not to go on too much about chronic pain and the things I deal with, because to be quite frank, it could be a lot worse. But if I don’t talk about it, then nobody else will! So here goes: for awareness, for a little peek at what it’s like, for the hell of it.
30 things you may not know about my invisible illness
1. The illness I live with is: myofascial pain syndrome (diagnosed); fibromyalgia (undiagnosed).
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2006-2007, when I was a teenager.
4. The biggest adjustment I’ve had to make is: learning when to slow down and say no, instead of pushing myself too hard and causing more problems for myself.
5. Most people assume: I’m lazy, making excuses, or unmotivated. Or that I’m fine.
6. The hardest part about mornings is: Getting out of bed, getting moving. Getting up when the alarm goes off instead of hitting snooze repeatedly. Not being late because I just couldn’t find the effort to get out of bed.
7. My favourite medical TV show is: I don’t watch much TV, only what I watch on my computer. None of it is medical television. If I’m watching TV, it’s an escape, not a reminder.
8. A gadget I couldn’t live without is: My phone or my iPod. I need links to the people around me, to people who will be sympathetic even if they don’t quite understand, to people I can vent to without being judged. And I need music. It’s rare for me not to be playing music.
9. The hardest part about nights is: Going to bed when I should. I’m a night owl by nature, and although I know the role sleep plays in worsening or improving my condition, it’s hard to go to bed at a decent time and be up in the morning.
10. Each day I take a varied number of pills & vitamins depending on how I am that day. (Anywhere from zero to 10.)
11. Regarding alternative treatments I: would love to try them and see if they help. Unfortunately, I can’t afford to.
12. If I had to choose between an invisible illness or visible I would choose: This is a tough one. I would like a visible one because people would see immediately that I have a reason for being the way I am; however, I like having an invisible illness because I can’t be judged or pitied or stigmatized. Nobody is going deliberately easy on me because they know about an illness I have. That part I like. And yet sometimes, I do wish they knew more so that they would understand why some things are difficult for me.
13. Regarding working and career: Some tasks take longer to complete than others. I work in a fast-paced food environment, in drive-thru. I like the pace of it because it suits my nature and my unwillingness to sit still; but sometimes, I can’t do it. And I know I take more days off than my counterparts my age. But it can’t be helped.
14. People would be surprised to know: That a chronic pain condition affects so much more than just physical pain. It affects anything from my memory to my speech to my motivation, to my personal hygiene, the level of exercise my dog and I get, my emotions (oh, you’ve no idea how much it affects the emotions)… And I don’t count my pain free days, either. It only gets my hopes up for more to come and shatters them when the pain inevitably comes back.
15. The hardest thing to accept about my new reality has been: Having to slow down. Accepting that this is something I’m stuck with for the rest of my life and that it’s going to affect others in my life, milestones I’ve envisioned from childhood, and it’s going to make me see things differently.
16. Something I never thought I could do with my illness that I did was: Bike 20km in a day—for three days in a row. But I did!
17. The commercials about my illness: Commercials? What commercials? C’mon, do you even know what MPS is? I didn’t when I was diagnosed.
18. Something I really miss doing since I was diagnosed is: Going through a day without getting a concerned look from someone who knows I have an illness, or a confused/pitying look from someone I’ve just explained the illness to. Oh, and the days with no pain… I’d kind of like more of those too, yeah?
19. It was really hard to have to give up: Late nights. As I said, I’m a night owl and like staying up late.
20. A new hobby I have taken up since my diagnosis is: Blogging about it. I’m normally very private about these things, but here I am blabbing away to the internet.
21. If I could have one day of feeling normal again I would: Actually… I think I wouldn’t take it. It’s cruel, I think, to give me that and then yank it away again. At least I can have consistent crappy days.
22. My illness has taught me: To slow down, to say no, and to accept the fact that sometimes I’m not going to be okay.
23. Want to know a secret? One thing people say that gets under my skin is: “Oh. Well hopefully you get better.” There is no better. “Better” is a relative and subjective term. Better on some days might mean getting out of bed, and on others it might mean going for a bike ride and a walk all in one day. There’s no cure for MPS or fibro. Better is what I make of it. The idea of clinging to a cure and hoping one day I’ll be “better” seems unhealthy to me and unrealistic to boot. I’ll take what I have and play the cards I’ve been dealt rather than pin my hopes on that.
24. But I love it when people: Ask about my condition and my experiences. What worsens pain, what helps. Any questions at all. (Unless they’re particularly stupid, annoying, or tactless. I can forgive a lot of stupidity, annoyance, and tactlessness for curiosity, so if you hit that point, a line has been crossed for sure.)

25. My favourite motto, scripture, quote that gets me through tough times is: Music. Particularly the album All That You Can’t Leave Behind by U2, and this song especially, because some days daylight does feel a long way off, and walking on is all I can do. I’m getting the title lyrics tattooed on my shoulder one day. Not that my boyfriend knows yet. . .

26. When someone is diagnosed I’d like to tell them: Keep your chin up. It’s not the end of the world. Find a support system. Ditch the people who don’t have anything to offer you. Be selfish sometimes and work on feeling better when you need to. Tell people about the illness. Don’t let it take over and make you bitter so that it costs you friends.
27. Something that has surprised me about living with an illness is: how pervasive it is. I’ve had symptoms I didn’t even think could be tied back to this until I looked it up.
28. The nicest thing someone did for me when I wasn’t feeling well was: Understand. Not pity, not even sympathy. Just understanding. Not getting frustrated when I can’t do something, and seeing that I genuinely mean it when I say I’m not well.
29. I’m involved with Invisible Illness Week because: I didn’t know anything about my illness when I was diagnosed. It seems unfair that others face the blank uncertainty I had when I left the doctor’s office after a very brusque diagnosis and little to no assistance or explanation.
30. The fact that you read this list makes me feel: Understood.
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4 thoughts on “Invisible Illness Week: 30 things…

  1. I love this post. I am “with you” on so much of what you talked about. Would you take a day of feeling “normal” or not? That’s really interesting. I’d always thought I would, for the chance to not be in constant pain, but you’ve made me think. And “better.” “I hope you feel better, I’m glad you feel better, Are you feeling better? Just do x, y, and z and you’ll feel better.” All things that frustrate the hell out of me. If acceptance really is one of our most important tasks, we have to realize a miraculous “better” is highly unlikely. Doesn’t mean we have to be live filled with misery about it, just that we recognize it as it is. And the U2 song? I’d never heard it before. Thanks for exposing me!

    • I’m so glad you enjoyed the post, and I’m ecstatic that I made you think! It’s so hard to choose. Understanding from those who know is good, but judgement from people who see a healthy 20-something is difficult. So many sides to the invisible illness coin!

      As for U2, not a problem at all! I’ve been a fan virtually since birth, courtesy my father. Happy to welcome more into the fold. 😀

      Cheers!

      • Judgement is a bitch, huh? I’m 40 and of course, get judged like we all do. It’s difficult when people see us as healthy and want to assume that. I’ve always liked U2, but not enough to know more than the “big hits.” 🙂

      • It really is. Misinformation and stigma are judgement’s nasty little lackeys. Too bad people aren’t willing to ask or learn.

        Well, the big hits are good, but they’ve got so many other gems. :)That song in particular is one I can honestly call a favourite (and I always hesitate to pick those).

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