I have a friend who orders my cocktails without ice when we’re out and doesn’t bat an eyelid when the bartender questions it.
6 years ago this summer, my version of ‘normal life’ changed. In September 2015, when I was 23 years old, I was diagnosed with atypical trigeminal neuralgia and one of my triggers is the cold.
You would be correct in assuming that I have bigger things to worry about than being able to order a cocktail at a bar, but you’d be wrong to think that I’m going to give up the little things I enjoy every once in a while.
My condition is sometimes referred to in the media as the ‘suicide disease‘.
Some weeks I struggle to brush my hair. Some weeks I don’t even bother trying. Some days, it is too painful to brush my teeth. Every move I make out of the house is spectacularly coordinated to attempt to minimise the amount of pain I feel, from what I’m wearing – I must remember that scarf, did I pack my codeine and my straw? Hood up in advance of leaving the house, whether it’s raining or not, even in summer! I might want something to eat, but I need to wait for it to be room temperature, so I had better remember to pull it out of the fridge an hour before I want it. I have no energy. I have to waste hours in medical appointments, only to still feel rotten at the end of it all.
On top of everything I have to think about and the pain I go through if I just brush something against my cheek, I absolutely refuse to wave goodbye to me and the things that make me happy.
I think the hardest part of being diagnosed with a chronic illness is the fact that you have to find a new ‘normal’ and accept that things aren’t going to be the same anymore. You have different limitations, different abilities and some things you just have to wave goodbye to. I have to make modifications to my day to day life and I can’t really remember how I did it all before my TN started.
I’m not a massive drinker, but sometimes I want to go out to the pub, or a bar, with my friends like a ‘normal’ twenty something year old. I don’t want to be different all the time.
Some people might find me to be ridiculous. When my pain is at its worst, I would tend to agree. On my most painful days, all I want in the world is to be able to eat and speak like a normal person without feeling electric shocks shooting through my teeth and temple.. But on the days when my pain is slightly more manageable, I do everything I can to stubbornly cling onto feeling like me.
On the rare occasion that I have the energy to go ‘out out’, I have a friend that orders me drinks that won’t hurt my face as much. I have a friend who says no for me, when the bartender asks if I ‘want a glass with ice with that?’ and who orders my cocktails without ice as if that’s the most normal request.. Which is especially annoying for the bartenders as all my favourite cocktails are the ones that usually come served very cold, with crushed ice!
I have a friend who does that, so that for just a minute, I don’t have to explain myself and, for that night, I can just be the normal girl, without the rare disease, that gets a night out.
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