As most of you know- because most of you are friends on Facebook- I do a 365days self-portrait project. I just finished my first year (never missed a day, natch!) and I'm twenty-two days into my second year. I wasn't sure I was going to keep going after I finished year one, but popular demand (okay, one person) requested that I continue. I was thinking about taking a week off, but I started on Valentine's Day and I figured if I kept going on that date, at least it would mean something to me again. The rules are simple- Take one photo a day, of yourself, every day for a year. And it doesn't matter how you're in it- a reflection, a fingertip, a portrait... and since we're a digital world, we can do what we want in "post production". I've done a few special effects and things called "cloning" and diptychs and triptychs... and I've learned loads about my camera. But I digress...
Today's submission turned into a blog post on its own. I'm in several groups on Flickr (where I do the 365days thing) and one of them is called "Tell Us More..." where your picture tells a story. So, sometimes, I'll get complicated and long in my photo caption. And that's what I did today.
Here is a copy/paste of my photo caption and the photo for today is below. If you've read my blog, you're not going to learn anything new (I don't think, anyway).
I have fibromyalgia. And like most of you, I thought it was a made-up disease that people just used to label something they didn't understand, but guess what, it's real and it bloody well hurts. It took five years, total, to get a diagnosis- two of those years were spent with an awful doctor who didn't care about anything other than maintenance of my other health stuff (like blood pressure and such). I could turn this into a blog post about how he blamed everything on my weight, except for the fact my weight was fine till the pain set in, but I won't. This is about fibro and it hurts. It turns out, many of my family members have the same problem. In the late 80s, my mother and her four siblings had a biopsy done to try and identify the "unnamed nerve disorder" they all had. My cousin (older than I am) also had the biopsy. All of them had the same "unnamed nerve disorder". It was described as "the nerves attacking the body..." All the biopsies showed was that they had the same thing. I've never had a biopsy, but I have a real doctor's diagnosis. As did my cousin, who was six months younger than me. (she passed away almost two years ago- not from fibro, because it doesn't kill you).
On a good day, my pain level is at a 3 or 4 (on that 1 to 10 pain scale). And if the pain alone wasn't enough- because I can deal with pain, I have been for so long- I'm exhausted. And I'm not saying "tired", I'm exhausted. You know how you feel at the end of a hard day's work? That is how I feel most of the time. I feel like I've just walked five miles or chopped wood for two hours. And all I've done is get out of bed and come downstairs.
On bad days, my pain brings tears to my eyes. On those days, my physical exhaustion is so bad I have trouble sitting upright. My skin hurts- you know when you're coming down with the flu and the water from the shower hurts your skin? That's how it hurts. If I'm lucky, that's all I have with my skin because sometimes, my skin will itch. From inside. Scratching does nothing but make it hurt. My bad days are fewer now that I've been getting treated for this very real, very painful disorder.
Most of the time, though, my days are between the good and bad. Like today. I'm up, I'm showered and dressed, but my clothes hurt my skin. It took me almost two hours to get showered, blow-dried, and then dressed. I had to rest between each task. I took this photo between the blow-drying and the getting dressed. (I was looking at the TV, which had an episode of "Law & Order CI" I hadn't seen all the way through).
At the moment (as I type this), I'm resting at my desk (which can be tiring) then I'm going to make something for lunch, take my midday fibro pill and then go run errands. And I'll be down for the count when I get back because that might just push my middle-day to a bad-day.
But for now- I'm up. I'm dressed. I've got my boots on. And I'd rather be under that soft fleece blanket. I gave the disabled guy a bunch of crap about that blanket. He got it for me in October, while he was in NC and then waited till Christmas to give it to me. He gave me two- this one (with a wolf on it) and another with an eagle on it. I told him he could have the eagle one for the living room- because that's what he wanted all along. I also told him he could have just given them to me when he got back from NC. I love this blanket because its soft and it is just the right weight to lay over me without hurting me. And yes, I'm naked under this blanket because that's the best way to be with fibro and a soft blanket.