Sunday, September 25, 2011

Thirty things...

Over on the website But You Don't Look Sick, I stumbled on a blog post and it turns out, I'm a week late. But I'm doing it anyway. After all, the article stated "prominent bloggers were asked..."  I'm in no way "prominent", but I liked the article and I'm going to do it now.


30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Fibromyalgia. But that's not all. I also have some arthritis issues, tendinitis, bone spurs (both in my feet),  I've had my knee replaced, I have hypothyroidism, I'm in the throes of a hellish peri-menopause, and part of the fibro is Raynaud's Disease (or "syndrome" or "disorder").

2. I was diagnosed with it in the year: 2010. June 27th, to be exact.

3. But I had symptoms since: At least 2005. But the more I learn about the disease, the earlier I can recall symptoms. The first scary ones I recall were at the end of 2004. But if I look back, I can see other things that could be attributed to fibro.

4. The biggest adjustment I’ve had to make is: coming to terms with the fact that this is forever. I will have this disease for the rest of my life and I have to learn how to live with it.

5. Most people assume:  that I exaggerate my pain/other issues. I don't. But I spent more than five years playing them down because I didn't want to whine. When I got the official diagnosis, well, I stopped. Now I talk about it. To anyone who wants to listen (or read).

6. The hardest part about mornings are: getting upright. I used to just jump out of bed, hit the floor and out the door for a four-mile walk. Now I'm just glad I can get downstairs.

7. My favorite medical TV show is: I don't have one. I used to like "House", but not in a while.

8. A gadget I couldn’t live without is:  Can we call this computer a gadget? I get more support and concern from my friends who live on the Internet than I do from the people I live with.

9. The hardest part about nights are: Staying asleep. I can fall asleep, but I don't always stay that way.

10. Each day I take:  A lot of pain meds at bedtime. Just so I can get up the next morning. Some days are good and I don't think I need the Vicodin at night. But, the next morning, I'm like a lump of concrete. The Vicodin helps, but it doesn't kill the pain.

11. Regarding alternative treatments I: I graciously accept advice, but I will probably not try the alternative treatments. In the five years leading up to the diagnosis, I tried everything. And when I say "everything", I mean "everything in my realm of reality" because obviously, I can't afford some of the alternatives.

12. If I had to choose between an invisible illness or visible I would choose: I honestly do not know how to answer this one. I've lived my entire life with an invisible problem (hearing impairment- I was born deaf in one ear). I wouldn't know what to do if I had something visible.

13. Regarding working and career: I've been a stay-home mother and wife most of my adulthood. But I recently started to do photography again and that is a lovely distraction from the pain. If you can find something that you enjoy doing, then nothing will stop you from doing it. Just ask my friends who were bombarded with my photos from this summer.

14. People would be surprised to know:  That when I reach the point where I actually speak to you about the pain I'm in- it has reached a level that makes me want to cry. If I joke about the pain, that's because I don't want to start crying about it.

15. The hardest thing to accept about my new reality has been:  That its real. Its right here and there's nothing I can do about it but cope with it.

16. Something I never thought I could do with my illness that I did was: feel good again. When I started to have so many good days in a row that I forgot when I'd last taken daytime pain meds, I was shocked. So shocked I did cry. Tears of joy, which are way better than tears of pain and frustration.

17. The commercials about my illness:  Are asinine. They make it look easy to get diagnosed, to get treatment, and the ridiculous script: "I learned that there are nerves connected to our muscles..." Really? You just learned that? Wow, your basic science class didn't teach you a thing.

18. Something I really miss doing since I was diagnosed is:  Well, I stopped doing it about four years before I was diagnosed- walking and yoga. I used to walk four miles a day and do a lovely little yoga routine.

19. It was really hard to have to give up: Doing things with my kids. We spent several summers doing things like going to museums and festivals and such. It was a lot of fun. I even got a bike and we'd go biking on the trails around town. The slow downhill progression started that winter of 2004/05. I haven't ridden my bike since.

20. A new hobby I have taken up since my diagnosis is: The hobby itself isn't new, but I've expanded it greatly. Photography and going to the renaissance faire. Now I do hundreds of photos a week and this summer I had a season pass to the Bristol Ren Faire. Both things are fantastic, they sometimes hurt like hell, but they're also worth it.

21. If I could have one day of feeling normal again I would: Need a time machine and I'd go to New York City with my youngest daughter. She went to NYC in March of 2011 with the high school orchestra. I would have loved to have gone along as a chaperon.

22. My illness has taught me: Who really cares about me.

23. Want to know a secret? One thing people say that gets under my skin is: Being dismissed as melodramatic or when someone says: "My [insert someone here] has that, she takes [insert random drug or alternative therapy here] and she's FINE!" Good for her. I'm sure she is fine. How often do you see her? Oh, once a year, huh? Well, how is she the rest of the year then?

24. But I love it when people: Understand or accept without judgement. There are still a lot of people who think fibro is a "fake" disease.

25. My favorite motto, scripture, quote that gets me through tough times is: I honestly don't think I have one.

26. When someone is diagnosed I’d like to tell them: Good! Now you can get some help!

27. Something that has surprised me about living with an illness is: Having taken care of the disabled guy, nothing has surprised me about my illness.

28. The nicest thing someone did for me when I wasn't  feeling well was: Little things. My kids were all teens/adult-aged when I got the proper diagnosis. And even though they acted like it was a big deal (what isn't to a teen?), they still helped me with things like putting away groceries or carrying heavy things, taking the dogs out (we have a lot of dogs and no fenced yard, so they don't go out without a human). My friends have done little things for me as well- even something as seemingly small as a compliment makes me feel better. I was moved to tears by friends this summer.

29. I’m involved with Invisible Illness Week because: Well, I wasn't really. Had I known about it then, I would have done this a week ago. But, it would have been for the same reason I started this blog. To let other people know that they're not alone. And even if it feels like you're alone right now, there are others out there, like you. And knowing that you've got someone, somewhere who understands how you feel- well, that helps. A lot.

30. The fact that you read this list makes me feel:  Grateful.

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