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Tuesday, November 27, 2012

Getting To the Nitty Gritty

The hardest part of doing epilepsy education AND trying not to depersonalize is when you get to those "icky" details.Gotta get past that. I still need to, for my sake, get past saying "The brain operates like a faulty CPU" and perhaps say, "MY brain can occasionally function like a faulty CPU". That I see it in terms of broken lines and machinery  may be the gift of Dr. Frost, who I need to shake off, influence wise. Somewhere though, a neurologist weeps into their pillow, asking where this difficult and always questioning patient came from, and why them.

Lately, I've heard "Migralepsy" tossed around. What causes what, and which triggers which? It's a nice sticky little question, and any theories, which I can base on somewhat solid (And with apologies to the head that once struck a sidewalk due to careless drunk now-ex-boyfriend,) concrete, but still rather cloudy hypothesis. And any theory is only as good as the answers that support it. At 8, I began having severe headaches. I was taking adult pain pills while weighing in at 60 lbs to kill the pain. They thought glasses might help, then a period in sunglasses part of the day (which actually did,) and evidence suggests that migraines and epilepsy do walk together in a demonic duo, to the point where a google search on the new compound word, "Migralepsy"  is longer than I am.

What am I doing? Trying to live. To find relief, to celebrate the good... when I've had no tonic clonics, when I haven't been messed up too badly. Going for a month, and so forth, without any symptoms, even localized.

Also, getting real here:
1)Please know, an epileptic may bite their tongue horribly (I think I have perma teeth marks in mine), but it is absolutely impossible to swallow your tongue. I've demonstrated, but it's a bit disgusting. Placing anything in the mouth, Popsicle sticks, wallets, fingers (You do that at your own risk, and please, don't!) will simply hurt the person more, fingers get bitten, and some things can lead to dental breakage or other injury.
2)During tonic-clonics, have dry clothes and patience and kindness handy. Accidents happen. Everything tightens and then loosens, and I can't tell you what it's like to wake up freezing in an ER and have THAT told to you. It may not always happen, but it can be rough on anyone. And some nurses really don't know how to give an answer to "Where are my clothes, and why am I wearing only a blanket?" delicately.
3)Patient may be thirsty. I usually am. Give fluids as soon as it's safe.
4)In my case, I always like to have a blanket after, but not a pillow. I will be tired, stuttery, and if I have to walk, it will look like you should be singing, "What should we do with a drunken Bethy?" I may be cranky, and
5)yes... it hurts. I think the part I hate about localized seizures I'm awake for, is that I know exactly what's going on, and it hurts like hell...plus, not being able to control a limb sort of hurts when it's stiff and yet flappy.

So there's MY basics at least. I am trying to learn to say "MY brain" and not to refer to myself as a broken machine. I'm not broken, and while I could say "The wires slip", it's not right... because that depersonalizes. Here and there I need to depersonalize, but sometimes, it can actually hurt me. And I need to learn to say "It doesn't have me... but I am dealing with this." I wanted to separate... This doesn't have me, I am better than this... this is not me, which is true. But disconnecting from my own brain is what I'm trying not to do.

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