Wednesday, April 18, 2012

I'm ashamed of this...

I try to be all empowering about things. "Fuck yeah! I got fibrofuckingmyalgia!" because I'm relieved that after five long years of suffering through this bullshit, I got a diagnosis. We're closing in on Year Two of "Official Diagnosis Day" and I'm just going to admit it.

I'm embarrassed to say to people that I have this disease. I always feel like I have to say something to explain it or to justify that this disease, disorder, syndrome, whatever the hell they're calling it now- that it is indeed very real. I started having symptoms in my mid-30s and by my late-30s, the signs were undeniable to warrant that diagnosis.

But in that time, I'd gone through so much testing. I'd been told so many times that it isn't this and it isn't that. And I had that one terrible doctor who told me outright: "It isn't fibro, just forget about that..." So I did.

That day- when my GP said she'd refer me to a rheumatologist- I was so happy. I couldn't believe how easy it was- but wait. It wasn't easy. For two years leading up to that day, I kept track of symptoms. I made notes, I had those notes in literal scraps of paper, some in texts I sent to my email, some in Word files. I'd have a Post-it note with: "pain in right hip- 9" with the date. I arranged them all by date, printed them up. I searched online for symptoms and possible symptoms. I was thorough because I wanted to make sure that this doctor- who was new to me that day- understood that I wasn't making this up. I had a list of those symptoms, with the website urls on the page, and I wrote down the frequency/intensity of which I had that particular symptom.

She looked at my list, my three or four pages of information, and said she'd refer me to the rheumatology clinic. She asked if she could keep the printed pages for my records...  And that was that.

And here we are, two years later. And I still feel shame about stating: "I have a very real, debilitating disease" because I feel that people are still judging me. I blame that doctor I had- the bad one who said I didn't have it or rheumatoid arthritis (in case you didn't read that blog, he said he tested me for it, but he was telling me the results to a three-year-old blood test). I feel that people don't understand how I can feel good one day and then the next day I can barely move. How cold weather hurts AND hot weather hurts (it happens to be the humidity or a drastic weather change that bothers me).  How do I go all day long at the ren faire only to fold in half and not be able to sit comfortably two days later?

Well, at the ren faire, for one- I sit down a lot. A LOT. The clothing I wear- while it seems to be binding, isn't. I'm wearing skirts, which leaves the lower two-thirds of my body completely free of twisting, painful fabric. And the part that is tight, is around my upper torso- which rarely bothers me in the first place. Also, being there with my friends and other like-minded people, it feels good. I'd feel the same way if I were anywhere with a group of good friends. I might feel terrible, physically, but being with people who genuinely like and care about you makes you forget the pain. I also have Vicodin in my belt pouch, so if it gets too intense, I will take pain medicine.

This disease is fickle. This disease is unpredictable.  I don't like to be the one to complain all the time, which is why I try to keep my complaints confined to this blog. I have a few friends who genuinely care and when they ask me how I'm doing, I do tell them. But for the most part, I just say "I'm fine" or "I'm alive" and move on. Because I feel that nobody really wants to know how I really feel.

My favorite Aussie posted a link to an article that had some statistics on how fibro sufferers feel that they are perceived by other people. Even though the results show that: "66% of the people with fibromyalgia believed society views them as complainers, yet only 9% of the GP view them that way", I still feel like people don't believe me. Or worse, that I'm lazy. I know a few people in my family see it as "being lazy". That might explain why I feel that way about the general public.

I have fibrofuckingmyalgia. Having the official diagnosis is great. Having the actual disease is not. I don't wish this hell on anyone. And I hope that I'm handling my pain in an outward sense with the same strength and grace my grandma did. I still don't know how she went on every day for as long as she did.

If you know me, I try to keep things light and I use humor to cope. I prefer to do that, because if I let this get me down, I'd never get up again. So, a piece of rope walks into a bar and orders a drink. The bartender sees the rope at the bar and says: "Hey, we don't serve your kind here! Get out!" The rope goes outside and  starts twisting himself around, just twisting and turning himself over... when he's done, he musses his top a bit and walks back into the bar and orders a drink. The bartender eyes the piece of twisted rope and asks: "Hey, aren't you that same piece of rope that was in here earlier?"

The rope exclaims: "No, I'm a frayed knot!"

One of two things happened just now. You've either got an earworm of that Chumbawamba song ("when I get knocked down, I get back up again!") or you've just unfollowed this blog.


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