I’m sore from my cheekbones to my toes. Staying awake is difficult. Perfect time to write.
You know, I almost didn’t start a journal entry today, but then my friend Gary said,
“Every time I want to feel frustration about my tiny health issues, I read your blog and your posts and stop feeling sorry for myself immediately. You provide a wonderful and powerful example for the rest of us…please keep posting, and thanks.”
So I figured, why stop at Facebook? Why not talk about the truth of the game that I go through in moments of severe pain like this…
The Why-The-Fuck-Am-I-Hurting Paranoia Dance
Everything is suspect. For some reason knowing the cause of the pain should somehow allow me to accept it. And “MS” is not good enough.
First: Question hormones. Is it that time of the month (or season as it may be)?
If it is, then there is fuckall you can do about it but deep breathing, meditation, smoking weed, or sleeping. It sucks to be you.
Second: Question diet. Did I break paleo? What did I reintroduce? Can I replicate this pain later by eating the same thing? (Otherwise this is not caused by diet)
Third: Question health. Am I fighting off an infection? Do I have a fever?
Fourth: Question sanity. 🙂 Remember you have a disease that does this at will, and not your will. Start taking deep breaths and welcome the pain to the table.
About then is when you’ll cry, if you’re gonna.
There’s no shame in tears. They happen whether you want them to or not, just like the muscle spasms.
I think sometimes, my biggest accomplishment is sitting through what my body is telling me it’s going through and just staying online and acting like nothing’s wrong… blogging and chatting just like always. It freaks me out, the way my body reacts incorrectly to things sometimes. And knowing that it’s degenerative just makes it scarier.
I’ve had people ask me how I deal with it. And the truth of the matter is that I honestly don’t think about the worst of it. I act like once I’m not hurting badly or having a seizure, I’m never going to have one again, until I do. And then I deal with it. Because no one knows what tomorrow might bring — what scientific achievement, what opportunity, or whether you’ll live even. So you can’t spend all your time fretting and waiting for it to happen, even if it’s exactly what we all sort of do, at least for the first year of having seizures.
I haven’t had any in a while. Not since we moved me up to the higher dose of Topamax. We still have a few more doses to go up til we get where the doc wants me. Either way, at least I’m not waking up in the car, wondering where I am. That’s always a welcome change.
Tomorrow, I go see Dr. J to hear the results of the MRI and to discuss treatment options. Let me tell you how enthused I am about that trip.
Fortunately, tomorrow’s got a prize in its Happy Meal! My mom’s flying to town for a meeting, so I get to spend an evening and a morning with her! 🙂 Should be a really nice time.