Wednesday, November 30, 2005

Chronic Pain Kicks Crip Ass

Not to put too fine a point on it, I've had chronic pain my entire life. I was born with this rare genetic skin disorder (EHK - epidermolytic hyperkeratosis) that makes the body produce too much skin, and then the skin cells don't break down properly.

This results in flaking and callousing, and blistering on the feet if I walk very much. Actually, blistering anywhere that gets too much friction or too much repetitive motion (like riding a stationary bike, which gave me blisters behind my knees), because those of us with EHK also don't sweat properly. We overheat.

Time will Tell

Back in the day, I got a lot more blisters -- partly, I think, because everything the dermatologists told me to do made my skin worse: take daily baths, cut off all the excess skin, and grease yourself up. These instructions made for a nice breeding ground for bacteria -- I also got a lot more skin infections back then.

Not to gross anyone out, but the "extra" skin on my body doesn't dry out properly either, if I take daily baths, so more bacteria and more odor.

I also got more blisters because no one thought to get me a wheelchair, so I was forced to walk, and walking = blisters.

I now pretty much do everything contrary to the docs advice. I get wet as little as possible. I use a wheelchair except in my home (because I need to save up for a ramp). I don't grease myself up every night.

Post 40 Syndrome

You may have heard about post-polio syndrome. It is the evidence that polio is the gift that keeps on giving. People who survived polio in their childhoods find new symptoms and difficulties arising in their 40s and 50s -- fatigue, pain, respiratory issues...

A couple of years ago, when I mentioned to my dermatologist how my skin was changing, and how I thought these changes must be related both to aging and also to hormonal changes associated with aging, he said sagely, "Huh?" Like, "that's interesting." Yes, I said, my skin seems to be getting thinner, and it hurts, like I have tiny fissures, all over. "Huh," he said.

The only suggestions he had harkened back to the advice of yester-year, and how they told my parents to take care of me when I was little.

Thanks, Doc.

Studies Show: Chronic Pain Shrinks Women's Brains

A few months ago, I saw an article at Third Age or Web MD that a study showed that women who had chronic pain also showed evidence of their brains shrinking. Swell. Can I say I'm cranky because I'm in pain, under treated for that pain, and keep getting headaches from my brain rattling around in my skull?

Take Away Message

In addition to a whine fest, I wanted to point out that many, many different types of disability feature that perk, chronic pain. My impression is that chronic pain in general is very unevenly addressed by our doctors, and that many of us just live with it.
Being in pain and just "sucking it up" also takes a lot of energy. Keep this in mind if you are one such and can't figure out why you're always so tired. Or maybe you have a significant other who is a crip who's always tired.

I think it is one of the biggest challenges that we face, us crips, to find a balance between expressing how we honestly feel, and not taking out our bad day on other people. I am trying to tell the people I trust that "I feel like crap", when I do, without being shitty to the people around me when I do.

Because, I work with other people who are in chronic pain, who don't necessarily say when they feel crappy, but act extra nasty, just to throw out a clue. The trick is, though, that if you're going to just act bitchy it helps if your disability is hidden.

The real anchor around your neck, if you're a crip with chronic pain with a visible disability is that if you either act bitchy or tired, or weak -- you're reinforcing the stereotype that you can't do the job, because of your disability. (Nevermind all of the people we work with that call in sick for a hang nail -- you've worked with them, haven't you?)

Except that, if you say, "okay, I give, I'm too disabled to work", the cards are stacked mighty high against you if you want to stop working and get SSDI and/or private disability insurance payments. More on that one next post...


Rebecca said...

My mother was in chronic pain for years. The only way the doctors addressed this was by giving her narcotics.

Turned out she had a severe reaction to narcotics. They made her hallucinate, but since she had a terrible fear of being thought mentally ill (tragic, because she really was...), she didn't tell anyone. I watched her sit on my couch, picking at lint, only to find out when she 'fessed up that she thought they were roaches.

Anyway, yeah, Ter, please don't keep your pain to yourself. We've all got the right to bitch.

Gimpy Mumpy said...

Great post! Can't wait 'till the next installment :)

Anonymous said...

Teri, Thanks for your blog - I'm sharing it with my class on Deviance (a section I do on **resisting** the deviance people have foisted on them) Andrew T., U Maryland College Park.