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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 17 2009, 01:20:11 UTC 7 years ago
I've read studies saying that if you are taking painkillers to truly kill pain, it is extremely difficult to become addicted. But if you keep on taking them when you are in less pain, you are more likely to become addicted. I know this, obviously, but people don't seem to understand that I am a smart little cookie, I really can look after myself! *shakes head*
People are hurtful on the Internet because they know they can be, and one bad comment resonates like ten positive ones. Stupid psyche.
This would make a great quote. May I take it and attribute it to you?
Also, I have a question about Toby. She has obviously been through so much and still is so strong. Did your own struggles with disability influence that?
September 18 2009, 13:40:30 UTC 7 years ago
Yeah, taking meds as prescribed to try to function? Not a junkie. Physical dependence may happen (and hell, it happens with LOTS of meds, even blood pressure pills, dipshits), but addiction, not likely. Those people piss me off. Big time.
September 18 2009, 17:07:55 UTC 7 years ago
My mother-in-law had a masectomy in 2004 and was give morphine for several months. She developed a mild physical dependency, but got past it well enough. I mean, it was for post-cancer surgery pain, for gods' sakes. She didn't need chemotherapy or radiation, just massive painkillers, as she already had a degenerative hip bone disease where her hip bones were crumbling, so for her, ibuprofen and Flexeril were like candy. But I never saw any addiction there, because her body devoured the medication to use for, hey pain-killing.<.i>
My reaction to Soma is similar to the tale of the Lotus Eaters in "Odysseus" -- lie back, stare at the ceiling with a dopey, blissed-out grin, laughing at every little thought, but that's because my frakking pain and tension is gone. I am suddenly free to do thinks that are not overshadowed by pain and hypertonia. People who do not have chronic pain would look at me funny, but this is my life.