Today is my last post for the disability diaries this week and it is going to the most difficult. I’ve been blogging for nearly 6 years and I’ve kept my health pretty hidden. It’s not on purpose, but I’ve never been vocal about my health conditions. And now I think it’s a perfect time to talk about it.
Since the age of 3 I’ve been in and out of the hospital with multiple medical conditions. When I was 3 I was taken into emergency with a high fever, it was then discovered that I had something called Neurofibromatosis Type 1 or NF.
NF hasn’t affected me like some people, and I’ve been very lucky on that part. I’ve had little hiccups here and there, but mostly it’s been good. From over 10 years I was going to the hospital every couple of months for test after test. And sometimes it was hard. Especially when I would go in for one thing and then come out with something new. I’m not going to go into detail about all this, but it was a struggle, however, I pulled through.
Then when I was in year 8 around the age of 13/14 something changed and it was hard. I started feeling the most horrific pain that I could ever imagine. I previously had my appendix out and this pain was 10 times as worse.
The pain was located in my lower right jaw and now only was it horrific pain it caused me to have migraines, and not be able to eat. I was going to dentist appointments on after the other and after doing some scans – they couldn’t see anything. So I tried to ride it out. But, it was working.
I couldn’t eat, I slept all day because it made me forget the pain and I missed a lot of school. I cannot even begin to explain the pain. It was like stabbing and twisting and turning and pulling all wrapped into one. It was like I was in a room of fire and I couldn’t get out. I would cry from the pain.
After a while, my parents decided that it was enough and took me to the emergency room. I was in so much pain and I was missing too much school. When we went to the emergency department, they didn’t know what to do with me. They gave me some painkillers and let me stay for a couple of hours. After a while, they sent me home. Without me knowing at the time, they talked to my mum and they said it was all in my head. That I could be doing it for attention. And as you can imagine my mum was horrified. She knew that I wasn’t ‘making’ this up. She could tell that I was in pain.
So I went home for the weekend and the pain just got worse. I was in tears and curled up in bed. That Monday, my mum had enough and took me in again. This time she wanted answers and so did I. And we found out. I ended up having to do an MRI – which I hate a lot. I had already had MRI, PET Scans and CT before, but I am claustrophobic. No matter how many I have done over my years, it never gets better and I nearly have a panic attack every time.
They decided that I should stay the night, so they could keep an eye on me and give a final diagnosis. In the meantime, they had given me some medication that would help me the pain and it did, but it also made me very hypo and had my mum and aunty laughing their asses off.
The day they told me. I had something called Trigeminal Neuralgia. It was nice to have a name to what I had, but there was still a long way ahead for me. Trigeminal Neuralgia by definition is ‘a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the most widely distributed nerves in the head’ – National Institute of Neurological Disorders and Stroke. With the pain described as ‘the intensity of pain can be physically and mentally incapacitating’—which I can totally and fully agree on.
They started putting me on medication and after a while, they pain was so much better. Not gone, never gone. But, I didn’t feel like I was going to pass out from the pain. I could eat, go to school and not sleep all day. It was finally better.
Then a year later, the pain got worse, much worse. Again I was not eating, sleeping all day and at home, so I ended up being on 4 tablets a day. Which was hard. The high dosage made be very drowsy, however, I wasn’t in pain anymore. It’s hard to deal with having medication that does affect you like mine does. It’s weighing up the options. Do I continue having the medication and fall asleep in some classes or be in pain all the time. There wasn’t much of a decision there.
Over the past couple of years, I’ve been able to go off my medication, however, a couple of months later I was back on as I was in so much pain. It’s one of the things with Trigeminal Neuralgia. It doesn’t ever really go away. I could have years without pain and then all of a sudden its back like nothing has changed.
And even when I am in remission, I can feel it. Like it’s hanging onto me, tell me it’s still there and no matter what, it won’t go away. It is a constant reminder.
Chronic pain is very hard to deal with and be able to do everyday things. Some days I cannot even get out of bed. I’ve missed school, I’ve missed university, and I have missed family events. And when people asked to describe the pain, I can’t do it in words because there is nothing I can compare it to. Nothing that can sum it up. It’s everything mashed into one.
Thank you so much for reading, if anyone did read to the end I appreciate it. Talking about my experience with chronic pain isn’t something that I have done before, but I am glad that I did. Disabilities in young adult books is very important. And it’s needed. Maybe when I was first diagnosed with Trigeminal Neuralgia and there were books with teens in a similar situation to me, I might have been able to understand better.
Don’t forget to check out my other posts that I have published this week and all the other posts by the other hosts, Ely @ Tea and Titles, Cee Arr @ Diary of a Reading Addict, Dina @ Dinasoaur, Jolien @ The Fictional Reader, and Lara @ Another Teen Reader.