(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.)
I’ve never been a particularly lazy person. I’m not a fireball either – just somewhere in the middle. But these days, I find myself flopping on the couch way more than anyone should. Settling in on the sofa again is, well, becoming unsettling. I’m bored. A lot. But here’s the problem…when you have Trigeminal Neuralgia it’s hard to make any plans. If someone calls me on a Wednesday and asks me out for dinner at 8pm on Friday, my response is something like, “Um, can I give you an answer to that at about 7:45pm on Friday?” That generally doesn’t go over very well.
With this type of condition, you never know how you’re going to feel the next minute or hour or day. A relatively good day can go downhill really fast and often when you crash there is no magic pill or potion to instantly make you feel better. The result is that there’s always this sense of fear that the pain will spike. When you do go out, you try and prep as best you can by keeping a scarf nearby in case there’s a draft, taking extra meds or taking an “emergency” dose with you. If you can, you always drive separately in case you need to make a hasty exit. And the fear isn’t unfounded – probably everyone I know with TN has found themselves stranded at an event, in pain, and just trying to make it through because the couch – the safety zone – awaits.
Even if you are having a good time, and your pain is relatively stable, there is an anxiety that underlies everything. It’s like watching a balloon being blown up that gets larger and larger and you know it’s going to pop. Subconsciously you’re whole body tenses up, your breathing gets more shallow and you wait for the inevitable “boom”. That party you’re at, or the dinner, or whatever, is the balloon and TN is the boom.
Right now I have tickets to three concerts sitting on my desk. Best case scenario is that I make it to one of them. And even if I do, I won’t fully enjoy it. I’ll be waiting for the boom.