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talkstowolves has posted about her experiences living with temporomandibular joint dysfunction (TMJD), as well as a variety of other conditions. It's very eye-opening. Meanwhile, jimhines has posted about the frightening financial realities of diabetes.I don't have an invisible chronic illness. What I have is an invisible chronic disability. At some point during my early to mid-teens, I managed to severely herniate three disks in my lower lumbar spine (L3-L5, for the morbidly curious). Because I was extremely overweight at the time, every doctor I saw for more than ten years said "lose weight and the pain will go away," and didn't look any deeper to see why a twenty-three year old woman was staggering into their offices screaming whenever she put her foot down and unable to straighten without vomiting.
Because the body learns to cope with things, I eventually recovered enough mobility to decide to do what the doctors were telling me, went on Weight Watchers, and lost over a hundred pounds. This wasn't as hard as it might have been, because I am a) a naturally picky eater and b) naturally really, really, "was walking a mile every morning to the convention center at the San Diego International Comic Convention, because that calmed me down enough to move calmly through the crowds" hyperactive. So "here, eat lettuce and do aerobics," not exactly the most difficult thing I'd ever heard.
Sadly, it turned out that the doctors were wrong. Being severely overweight may have made things worse, but it didn't cause the injury, and a year and a half of hard aerobics definitely made things worse. In the fall of 2007, I began experiencing numbness of my right side, culminating in losing all feeling in my right leg and nearly falling into traffic when I suddenly couldn't walk. That's when a doctor finally slapped me into an MRI machine, went "oh, crap," and started dealing with my actual injuries.
I look totally healthy. I walk quickly. I move sharply. I am 5'7", reasonably young, and apparently able-bodied. But sometimes I sit in the "people with disabilities" seats, because I literally can't stand on the train for the duration of my commute. Sometimes I glaze over while I'm talking to people, because my sciatic nerve has started screaming like my leg is full of fire ants, and I'm trying to figure out a polite way to excuse myself to go take painkillers. Sometimes I keep walking at a crazy death-march pace because I can feel the numbness creeping back, and if I don't get to my destination before I lose the temporary use of my leg, I'm going to be stuck. That's just how life is.
We may eventually pursue surgical solutions—right now, I'm doing physical therapy, restricted forms of exercise, and trying to work out a detente with my own limitations. They aren't bad enough to qualify me for full-time disability, just bad enough to be inconvenient, invisible, and keep me off roller coasters. Sometimes I meet people who blow off my limits as "whining" or "being lazy." They don't stay part of my life for long.
So please, this week, and every week, remember that appearances are deceiving; like books and their covers, you can't judge a person's health by how fast they're moving. They may just be outrunning the collapse.
September 18 2009, 09:35:39 UTC 7 years ago
Thanks to the miracle of muscle relaxants, I live on the very fine line between being able to function physically or function mentally. On my present drug & dosage I can usually do what I absolutely have to physically, though the next day or 3 may suck. Mentally, it seems to cost me IQ points, concentration, & short-term memory. If I ask you something you already told me earlier in our conversation, that's why -- I really was paying attention, honest!
My rheumatologist has forbidden me to use exercise equipment, so joining a gym is out. I walk when I can, but after a few incidents of abruptly running out of spoons & finding myself unable to get home without 1st sitting on the sidewalk for an hour, I'm rather paranoid about when & how far. Water exercise feels great, but doesn't burn enough calories to affect my weight. Which on anything remotely approaching a normal calorie intake is not going to decrease much from what exercise I get.
As a result, fate occasionally calls on me to enlighten the ignorant: "Why no, I don't need the cane because I'm fat -- I'm fat because I NEED THE CANE!" My other karmic duty seems to be to ream out the morons who leave their shopping carts in handicapped parking spaces. Contrary to what you might expect, it's never the people who use the spaces who do that.
September 18 2009, 14:04:54 UTC 7 years ago
I have trouble getting to water exercise. And yeah, between the meds, the conditions, and the difficulties in trying to exercise, the weight adds up.
I may leave a cart NEAR the Consolation Prize Parking, because some stores don't have a car corral anywhere nearby, but yeah, it's the lazy people who leave them IN our spaces. Grr.