(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)
Today is October 7th. Do you have the date circled on your calendar? Probably not. Up until recently, I didn’t either. But today is International Trigeminal Neuralgia Awareness Day. Oh there won’t be any parades, or mentions on TV, but that’s the reason why awareness is so important.
I was diagnosed with TN about two years ago, although I’ve had the symptoms for seven years or more. This condition has not only caused me to be in constant pain, it has also robbed me of much more important things than just personal comfort. I left a position with a company I loved after eighteen years because I was no longer able to perform at what I considered to be of the right caliber. Much as I want to be working, my health is not dependable enough to enable me to get a job. With the loss of my work-a-day life, I also lost much of my social life and a daily connection to people. The meds I use to help take the edge off the pain have caused weight gain and drowsiness, which is a really bad combo.
So yeah, I have this extremely painful condition, but you know what? I still consider myself blessed. Here’s the thing…I’ve lived through much harder events in my life than TN. And I know many people have it much worse than I. Living in a large metropolitan area, I was diagnosed fairly quickly by doctors who knew about and already had patients with Trigeminal Neuralgia. Many people don’t have that experience. During particularly bad pain flares, even their emergency room medical personnel have never heard of TN. And my hunch – and I must admit I’m a pretty good huncher – is that there are many more people living with TN than are diagnosed.
I also have a family that “gets it”. They might not be able to empathize with the pain and I’m certainly happy for that. But they believe what I am saying about my condition and I’ve never caught anyone giving each other fish eye of doubt. Yes, I have lost friends because of TN, but I’ve also had people step up in unexpected ways. I’ve also met some great people, albeit virtually, who also live with TN. And at fifty-two, I’ve had a lot of good years where I didn’t have pain. I can’t imagine being a child or the parent of a child diagnosed with this condition and learning that the vast majority of their best years will be lived under a cloud of pain (and meds).
Trigeminal Neuralgia is a curse which has led me to recognize the simple blessings – the love of my family, the support of a handful of good friends and the appreciation that any day, no matter how humdrum, is a good day when my pain level is low. We in TN land call ourselves warriors and it’s an apt title. Every day we must wake to an unknown fate, fight the pain, live with our losses, but we are still here and those good days are glorious. And if someone reads this who learns about TN from this and other blog posts, well that’s just gravy. Happy International Trigeminal Neuralgia Day to all.