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4 Ways I've Made My Trigeminal Neuralgia Less Scary and More Manageable

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Every year, on the date of my “neuralgiaversary,” my friends have thrown me a surprise party!

I just want to start this by saying that I have the best friends and none of these fantastic parties would have happened if it wasn’t for them. They completely spoil me, from barbecue food, to sweets, to trays and trays of pizza and chicken, to liters and liter of room temperature alcohol!

I guess you may be wondering what there is to celebrate about completing one year and starting another year with an incurable brain condition, which causes me a lot of pain on a daily basis. I personally think I have a lot to celebrate.

I still have my health. Despite my pain, I’m otherwise fairly healthy. I can breathe, I can walk, I can get to work, I can look after my cats. Whilst I could be healthier, I could also be a lot worse off. I have friends and family who support me, I have colleagues at work who understand if I need a minute or have to rush off to the doctors one morning. I’ve managed to do lots for myself – build up a little career where I’m happy, buy a house and raise my babies. I have lots to be thankful for. I wouldn’t say I’m a positive person – I love a good whinge, but I credit staying so upbeat despite having a life changing condition to the fact I’ve made my neuralgia a lot less “scary” and made it more manageable for me to tackle on a daily basis.

A picture of the writer in front of a banner that was made for one of her anniversary parties.

1. Name it.

I very rarely refer to my trigeminal neuralgia by its proper name and I never refer to it by its other horrible name, kindly offered up by, I’m assuming, the media – “the suicide disease.” In short, I call it “my TN” or “my neuralgia.” I haven’t given it a pet name, but I know of plenty of people who give their illnesses a human name to make it easier to face. Instead, I just refer to it as my neuralgia, my TN. It’s a little thing I don’t even notice I’m doing, but it belongs to me and I don’t belong to my illness.

2. Talk about it.

I have made my TN a part of my daily life vocally. I never shy around the fact that my face hurts when the wind blows on it, or I have to wait for a glass of water to be room temperature before I drink it. I don’t want it to be the elephant in the room that everyone is wondering about but no one dare ask about. I’ve taken the question mark away from the end of it. Is it really a disease that causes people to commit suicide? No, it’s not, but it is a medical condition I have that means the cold affects me seriously. Why am I quiet today? Am I upset, am I stressed, am I over-worked? Not today, today speaking just hurts my face, because of my nerve pain.

3. Laugh about it.

I don’t care how serious it is…Sometimes it’s really funny. My friend was at my house for my TN party and, without thinking, asked if I had any ice for her drink, only to be met with the reply, “Are you trying to rub it in that you can have a cold drink?” Sometimes it’s absolutely OK to laugh about it. It’s OK if I joke that I feel like I’m rattling because I’m full of tablets. It’s OK to laugh if I fall asleep during the film I’ve been complaining I want to watch for ages. It’s OK to laugh that the cat probably got ahold of my saliva supplements when she was dribbling excessively one day. I’d much rather have a (well-timed) joke than a look of pity.

4. Celebrate it.

I live with a unique illness and I’m doing just fine. Raise your glass to every milestone, no matter how small. Whether you manage something massive like buying a house, or finishing a qualification, getting a new job, or whether it’s something smaller, like making it into work when you feel, for lack of a better phrase, completely shit…Or even just getting to another year of that anniversary. Celebrate it! Enjoy it.

You only get one life and mine happens to come with constant face pain. What are you celebrating today?

This story originally appeared on The Pain Corner.

Originally published: April 6, 2018
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