(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet. These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)
You know what I hate most about TN? Okay, that’s not a good question because I hate everything about it. But one thing in particular drives me crazy – the randomness of it all – and I’m someone who loves random. A philosophical conversation while in the checkout line at the grocery store? You just made my day. Seeing someone in short shorts and flip-flips on a cold Chicago winter day? Where’s my camera. You get the drift.
But TN, as insidious as it is, is just way too unpredictable. You just can’t count on its behavior. Days that should be relatively good are terrible. Days when you gear up for the worst-of-the-worst aren’t too bad. It’s sneaky that way, which make having it even more difficult. There’s no way to prepare.
I keep a pain diary (I have a lot of free time on my hands). I write how I feel morning, noon and night, what the weather is like, what and when I took my meds, what I did during the day, stuff like that. I already know that wind and stress cause my pain to increase, but beyond that, there are no trends, no glaring neon sign that reads, “This is what makes you worse.”
Sometimes when I have a particularly good day, I use that as a model by which all future days are structured. I now eat oatmeal every morning because that’s what I ate on a good day about three months ago. I started taking my meds at eight-thirty instead of eight o’clock because that seemed to help one month ago. I stopped drinking pop, and take a shower at night instead of morning because at some point it’s what I did on a low-pain day.
It’s an exercise in futility, but I still keep doing it. I just wish that at some point I have a good day when I clean my house or do laundry. At least that would be helpful.
I agree with you. The unpredictability of TN is very frustrating.