September 16, 2009

30 Things About My Invisible Illness You May Not Know

A note: this has nothing to do with librarians, libraries, image, perception, or pop culture. Feel free to skip it if you want.

This week - September 14-20 - is National Invisible Chronic Illness Awareness Week. While I'm not a member of the group that's putting on the conference referred to at the website, I am a member of the group of people it targets. In that spirit, here's my blog entry in support of this week.

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 (formally, at least)

3. But I had symptoms since: the mid-1990s. Several docs diagnosed me with various chronic inflammations. Lots of fun. When it got to the point where I had one doc treating me for seven different chronic inflammatory situations it was conjectured that perhaps, just perhaps, I really did have a systemic issue!

4. The biggest adjustment I’ve had to make is: Mentally accepting there are things I just can't do anymore. I tell you, it makes me so angry sometimes... I'm still working on this step.

5. Most people assume: that it's no big deal, or that I don't really mean it when I say "I'm fine as long as you don't touch me". Really, I do mean it.

6. The hardest part about mornings are: First putting my feet on the floor. Some days I have to really work at making myself to stand up that first time.

7. My favorite medical TV show is: Don't have one, actually.

8. A gadget I couldn’t live without is: my Treo!

9. The hardest part about nights are: Getting to sleep, followed by staying asleep.

10. Each day I take 13 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: absolutely positively believe in and find relief from therapeutic massage & myofascial release. (I wish my insurance company did.)

12. If I had to choose between an invisible illness or visible I would choose: Oh, that's a toughie. Having seen how folks react to visible situations in this "enlightened" age, I'd probably stick with invisible. At least I don't get pigeonholed right off the bat.

13. Regarding working and career: I have a great and very understanding boss and team I work with who are totally not fazed if I IM them rather than walking down the hall (because some days that's just tough to do). I can telecommute if I need to, as well. I love what I do and am glad I haven't had to change my career path because of the fibro.

14. People would be surprised to know: how physical I used to be, and how much I miss it.

15. The hardest thing to accept about my new reality has been: See #4.

16. Something I never thought I could do with my illness that I did was: Put in a new floor. It took a really long time and my husband was really patient!

17. The commercials about my illness: There's a commercial?

18. Something I really miss doing since I was diagnosed is: Dancing! Oh, my god, I miss seriously dancing. I still do it - I can't live without it - but now I have to weigh the fallout against the benefits. Sometimes I can't dance more than five minutes - but damn if I'll give up those five minutes. (In my head, though, I live life dancing...)

19. It was really hard to have to give up: Some forms of physical exercise. I miss rock climbing and hiking - I have a great trainer at a great gym but strength and resistance training just isn't the same. I also really, really, really hated giving up learning and teaching bellydance... can't do much of a routine if you can't dance for more than a few minutes at a time. (Dammit!)

20. A new hobby I have taken up since my diagnosis is: Uh.... damn. No, really, I have hobbies.... let me think....

21. If I could have one day of feeling normal again I would: Dance dance dance dance dance! Oh, and maybe get a few hours of solid uninterrupted sleep. Yeah, that'd be nice too.

22. My illness has taught me: an incredible new level of respect for my mother, who also suffers but has it much worse than I do (between fibro and diabetes she had to take early medically-necessary retirement). It's also teaching me how to get on with life in spite of it!

23. Want to know a secret? One thing people say that gets under my skin is: "It's all in your head." Come live in my skin for a day and try to say that again!

24. But I love it when people: Don't judge me if I walk slowly or have to take the elevator instead of the stairs.

25. My favorite motto, scripture, quote that gets me through tough times is: "Hurts if you lie still and do nothing, hurts if you get up and get on with life; might as well get up!" My motto, from something my mother said to me once.

26. When someone is diagnosed I’d like to tell them: That this is manageable. It ain't fun, but it also isn't the end of your world.

27. Something that has surprised me about living with an illness is: How much it impacts every aspect of life, and I mean *every*.

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband will let me shut myself in our room and just rest, whenever I need to. It hasn't been a "once he did this" thing, either -

29. I’m involved with Invisible Illness Week because: I've met some amazing folks who also deal with invisible illnesses and they're inspiring. I've found a support group through it. I honor my mother because of it. And I wish the doctors out there who still think fibro is imaginary would learn something more from it.

30. The fact that you read this list makes me feel: Nervous! This is the first time I've really put it all out there - my family and friends know, of course, but I feel as if perhaps I'm risking things by sharing this much. But as I said in #29, I've met some amazing folks, and maybe by sharing my own bits and pieces I can be amazing for someone else.


Amanda said...

This is so great to blog! I hadn't even heard about Invisible Illness Awareness Week.

My sister-in-law has fibromyalgia. I truly sympathize with both of you. I can't imagine what it'd be like to know that being touched by a loved one could hurt.

Sr. Heather said...

Congratulations for putting this list out there! I'm so glad you've found support and encouragement this week.

Sometimes, it's important merely to tell our stories, even the little ones. You never know who needs to hear it, and who will find support or encouragement or inspiration in it.

And hey -- you're already amazing for me! :-D

Love and blessings,
Ladybug Heather

Amy said...

Thank you, Ruth, for posting this. You said so many things that I think every day - I especially appreciate what you said about missing physical activity. People look at me and they assume I am and always have been a "couch potato" - it seems hard for others to understand that even though you wish you could hike, or, for me, ride horses, or whatever, you just cannot.