(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’re walking through a minefield. Each step must be calculated to keep you safe, keep you from injury. Explosions flare up around you, but you keep moving, knowing that every foothold could be a trigger. You’ve just got to make it through. The hardest part is when night comes. You’re sore. Fatigue has dulled your senses. Yet you know, on the other side of this field is a refuge. A chance to sleep and restore your energy for another day. And so, carefully, you walk on…
Flares and triggers and explosions. Sounds like a scene from a war story, no? Well, in a way it is. This war may have blissful times of truce, but it will go on forever. This is how people with Trigeminal Neuralgia live their lives each and every day. Only we don’t wear cammo. At least I don’t wear cammo. What other people do is entirely up to them. I don’t judge.
We do our best to maneuver through seemingly innocuous actions that can make our conditions worse. My pain is constant, but it does flare up throughout the day, and if you have TN, you become keenly aware of your triggers. Moving too fast? Trigger. Putting on blush? Trigger. Brushing your hair, breathing, loud noises, getting a dirty look at the grocery store? Triggers, all of ’em. We don’t just “jump in the shower”. We gear up and whittle down. Each step – from how we undress, to how we face the water, to drying ourselves with a towel, is now a practiced set of actions designed to limit our risk. TN Warriors no longer think of activities in the macro sense; everything is in micro status.
For a while now, I’ve heard people referring to talking as a major trigger and I’ve always thought, Those poor people. That must be awful. Then I realized talking is one of MY triggers. Same thing with eating. Well fuck me. I’m Irish and Italian – talking and eating is what I do. I still eat – too much – but I do find that my speech pattern has changed. I try to be succinct. Doesn’t work, but I try. I don’t burst out into spontaneous song like I used to (which might actually be a good thing). And the big magilla of all triggers? One that is virtually the bane of every person with TN? Wind. Even a ceiling fan or the soft swish of air from someone passing by can be disastrous. Did I mention I live in Chicago? The blessed part is that everyone swaddles up their faces on cold winter days around here but people tend to stare when the weather is warm (which in Chicago terms is like forty degrees).
Not paying attention to each and every movement can make the difference between getting up and out the door or curling up into the fetal position. I’ve had to quit my job because even on good days, the pain itself is distracting and the meds affect my concentration. Yet based on anecdotes I’ve heard from other TN warriors, I think I’ve had it pretty good so far. I know from their stories it could always be worse.