A LOOK INTO THE LIFE OF THE SUICIDE DISEASE
Trigeminal Neuralgia, or most commonly what’s known as The Suicide Disease. I first heard of this condition when a family member developed it. I never knew much of the condition as I didn’t like to pry, but I was very aware that they were in pain a lot of the time and could be ‘shocked’ at any moment with excruciating nerve pain running through their face. It doesn’t sound pleasant, does it? but then again, what chronic illness does?
I’m going to take a wild guess and say that you’ve never heard of this condition. I say that because if it wasn’t for my family member then I most definitely never would’ve heard of it myself, before meeting Kirsten that is. I first started following Kirsten on Instagram just under a year ago, and seeing that she was living with the same condition as someone in my family immediately moved me to contact her. I wanted to learn more about her condition, and now I want you too as well.
I live with a chronic pain condition that less than 0.001% of people in the UK live with, something you probably haven’t even heard of. The short version of this story is that my face and teeth hurt almost all of the time. The long version is that I have ‘The Suicide Disease’.
The suicide disease, or it’s medical name “trigeminal neuralgia”, or for short ‘TN’, is when your trigeminal nerve sends signals to your brain telling you that you’re in pain when it shouldn’t. There are two types of TN: type 1, which is sharp ‘shock’ like pain, which comes and goes in bursts, and type 2, which is a dull constant pain.
We experience severe facial pain, either shocking and sharp, or an ache, or throbbing sensation in the teeth, gums or jaw, or a combination of all of these. These ‘attacks’ can last anything from a couple of minutes to a few hours, sometimes with a few minutes in between, sometimes months or years. Sometimes caused by simple things such as kissing, talking, the breeze, a touch to my face, the cold, heat, or simply nothing at all.
I have devised a very specific way of getting through day to day life, and I have realized that some of these ways come across as being quite strange to an outsider looking in. So, I thought I’d talk you through an average day of odd things I do to get by.
KIRSTEN’S DAY TO DAY ROUTINE
6 am is here, so I brush my teeth using a toothbrush for toddlers. It still feels like razor blades in my mouth. I don’t brush my hair, just as I haven’t for probably around five days. My partner is defrosting the car, but I can’t go near it because the breeze will hurt me. 7.30 am hits, and I go to work with a massive scarf up to my eyeballs and I won’t remove it until I’m home from the office this evening. I know I’ll fancy a yoghurt in work for my mid-morning snack, so I pull it out of the fridge three hours early to warm up. 10 am is here and I’ve forgotten what I’m doing whilst I’m in the middle of doing it, again. Work is also always cold, so I put a heater on my desk next to my face. Everyone else complains it’s too hot, and no one can even open a window because the breeze will hurt me.
11 am arrives, and I want a glass of water. So, I pour myself a glass of cool water and then add some boiling water into the glass. I have to do this to make it exactly the right temperature to tolerate. Even though I’ve done this and my drink was perfectly room temperature, my temple still hurts because of it. 11.30 am is here, and fatigue hits hard. I take five minutes to rest my eyes… 12 pm comes around, I put my lunch in the microwave and when it’s cooked I leave it out on the side to cool to room temperature. Again, because if I don’t, ill suffer the result of it. It’s now 12.45 pm, so, I finally eat my cooled lunch.
It’s 1.30 pm in the office, and I’m still eating my lunch because I’m so slow! Which is purely because every bite feels like someone is stabbing me in the mouth. 2 pm is now here , I have to brush my teeth (still with a baby toothbrush) because you have to brush them when you can… As tomorrow might be too painful to brush your teeth at all! 2.30 pm arrives, and I’m speaking to a customer on the phone and I can’t concentrate at all because I feel nauseous, all of the time.
4 pm comes around, which means it’s time for a dentist visit. I’ve been avoiding him for a while because of the pain it causes. He briefly looks at my teeth, tells me I need something doing, but that he’s reluctant to because of the pain it will cause me – an examination is the most I can tolerate.
It’s now 5 pm, we’re picking up tea, and my fiance buys some ice cream, something that I know I will never be able to eat again. I finally get home, and it’s 6 pm, so I know that before bed I will want some orange juice, which means I’ll pour myself a glass from the fridge and leave it out on the side to warm up so it doesn’t hurt to drink! 7 pm is here, I have a bath and don’t wash my hair because the combination of touching my head, rubbing it with shampoo, and getting it wet would be unbearable. I can’t even use dry shampoo, because that involves touching my head too! Finally, 8 pm is here. I can’t brush my teeth, because my fiance opened a window a crack and now I’m in too much pain. I cuddle my fiance before bed, but we can’t even kiss good night. I go to sleep and start again tomorrow.
I thought TN was a death sentence when I first heard about it, but it’s not. In fact, I would call it ‘The Really Awkward Disease’ if I could rename it, because of all the planning that has to go into every day of my life to control my pain.
Being able to look into Kirsten’s daily life enables us to have a small glimpse into what she has to deal with daily. What might be a normal routine to her, is far from it for those of without trigeminal neuralgia. However, we all adapt to our conditions and circumstances, and it’s truly inspiring to see Kirsten fighting through each day and still managing to spread awareness of her chronic illness, all at once.