I'm feeling cranky today and want to kvetch: I have to wear leg braces, and I hate them with a fiery passion. Sure, they help me walk and not kill myself by tripping over my own feet. And they make it possible for me to stay on my feet for long hours at work. But as much as the leg braces help me, they've caused me a lot of grief as well.
The technical term is Ankle-Foot Orthosis (AFO); they provide a support system for weakened legs, preventing foot drop and hips from getting out of whack from limping. They also are hot and sticky in the summer and get freezing cold in the winter. The skin on the bottoms of my feet reacted horribly when I first started wearing them at 17 and didn't clear up until just last year. Throughout college I had to deal with itchy, cracking, bleeding feet pretty much on a daily basis. It's hard to explain what it feels like to peel off blood stained socks at the end of the day. The doctors couldn't figure out what was wrong--I went through allergy testing with no reactions. I tried prescription after prescription and got worse. I endured the agony of a skin biopsy on the bottom of my foot (the skin was so compromised it just kept ripping when the dermatologist tried to sew it shut). My brother Andrew's doctor was the one to suggest something that finally worked.
Another fun fact about wearing AFOs: pretty shoes are out of the question. Heels? Flats? Sandals? Nope, no and don't even think about it. I pretty much live in Saucony sneakers, because they're the only shoe I've found that fits, is comfortable and lasts a long time. Thankfully, they come in crazy bright colors, which makes it a little more fun.
And who wants to wear a cute little dress or shorts with muscular dystrophy legs? What do I have to show off? I feel awkward and uncomfortable. I've seen the pity in people's eyes, and I don't want to be treated differently because they feel sorry for me. There are days I'm happy that I can hide my disability.
And the reason I have to wear AFOs in the first place: a still undiagnosed disease. It's some sort of muscular dystrophy, but they don't know what kind. And believe me, I've been tested up the wazoo for various diseases. I've put my time in as a pin cushion for the medical establishment. I don't care what I have, I just want to know what it is! I already live with the symptoms every day, I want to have a diagnosis, a name to give the pain.
And I do live with chronic pain: a constant, unwelcome, low grade (for the most part) ache. It's there when I wake up in the morning, when I'm happy, when I'm sad, when I'm hungry...always. Sometimes it's more like background noise and doesn't bother me that much. Occasionally, it spikes, and I bite my lip, clench my hands into fists, gasp out a few choice swear words, and force myself to get on with the task at hand.
As someone who wasn't born sick, it can almost be harder to lose capabilities than to never have had them in the first place. I can't run or even walk very fast, stand on tiptoe, fill out skinny jeans (they look baggy on me), wiggle my toes, lift heavy things, walk up too many stairs, or write much without my hands hurting. I'm super sensitive to getting cold (legwarmers are my friends). I have to ration my energy--I need to give myself time to build up strength to do something, and if I'm too tired, I've learned to not push it. Most of my energy goes to my job, so art making and a social life suffer for it at times.
So, yes, it sucks. A lot. You will rarely hear me bemoan what I'm going through though. I prefer to focus on the good things in life. But today, was one of those times when I needed to complain.
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