Monthly Archives: April 2015

(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.

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(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.

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.

Did you know there are an estimated 100 million people in the US who live with chronic pain?  That’s about 30% of the population.  Look around…is there someone in the room with you?  Maybe a couple of people?  Chances are someone is living with a condition that is invisible yet painful.

People often ask me what it feels like to have Trigeminal Neuralgia.  Well, the best description that I can give is to imagine having a badly infected or abscessed tooth on your left side.  Now imagine that every tooth on that side is infected.  And someone is using a screwdriver on your cheekbone.  And someone else is bonking on your cheek with one of those little brown rubber mallets doctors use to check reflexes.  Oh, and did I mention the scraping?  The feeling that your skin is being pulled down and off your face?

“It’s kinda like that,” I say.

And often I receive the same response:  “But you look good…”

Now don’t get me wrong, I wouldn’t like it if someone said to me, “yeah and you look like crap”, but in a way the lack of outward physical identifiers kind of makes living with chronic pain worse.  It’s like you feel the need to convince people that there’s something really wrong with you.  Okay, I have an extensive wardrobe and I’m usually in heels of some sort.  And then there’s my coat addiction (I said “coat”).  But that is part of the facade that I create for myself when I’m out in public.  What people don’t see is the “me” in mismatched PJs with crazy bedhead and an ashen pallor that I normally encounter when I look in the mirror.

For me, at least, making an effort to look fairly nice when I’m out in public is one of the few vestiges of the pre-pain me and part of how I try to get one over on the “suicide disease”.  People with TN often refer to themselves as “warriors” and it’s an apt name.  We hide in plain site all the while engaging in a war that no one can see – the battle to just get through the day, or the hour, or the minute and the hope that you can conquer the pain at least for a little while.  Would a trade my cute sweaters, heels and coats to be pain free for just one day?  Absolutely.  Okay maybe not all of my coats, but most of them.  The ones that no longer fit, for sure. And maybe the black faux fut Ellen Tracy number that looked a little more hooker than haute couture.  I’d trade them in a heartbeat.