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Hello everyone, I hope that you are all well. When I was 12 years old I was diagnosed with Scoliosis (a curvature of the spine). This diagnosis came after I spent a week or two gardening at school, carrying around heavy bags of soil and other such things, which caused me a lot of back pain and stiffness. In fact, I was in so much pain, and found it so hard to move, that my mum had to start helping me bath again. Additionally, it was when I was in the bath and my mum was washing my hair for me that she noticed that one half of my back was sticking out more than the other. After noticing this she took me to the doctor who said it was probably Scoliosis but I needed an x-ray to be sure. So he referred me to a back specialist, I got an x-ray and was officially diagnosed.
At the time I was diagnosed the curve was at 40 degrees, which is quite bad but not bad enough for the operation. The curvature was in an ‘S’ shape, also, and took up the majority of my spine. By that time they had stopped using the back brace to treat it due to the issues they caused, not that I would have wanted to use one to be completely honest. So it was just a waiting game, to be honest. And I waited whilst my curve got worse, the pain got worse, and breathing became harder as my spine started to twist inwards and crush my lungs.
It only took a few months for the curvature to worsen to 60 degrees. It was then that they put me on the waiting list for the correction operation, which is when they straighten the spine and use Harrington Rods and screws to hold your spine in place. As you could imagine, since this is a major spine surgery there are many complications that could occur. For example, if they straighten your spine too much then it will paralyse you as it will damage your nerves. To make sure they don’t go too far they are constantly monitoring your nerves throughout the operation. As a result, they can’t completely straighten your spine, so there is still a slight curve.
Anyway, I had the operation on January 12th, 2012, at the tender age of 13. I stayed in the Hospital for six days, including the day before the operation (I also got three months off school). The nurses were lovely, although they did get me out of bed at the wrong time. You see, when you have this operation, for three days afterward you have two epidural needles in your spine, one at the top and one at the bottom. On the third day after the operation, whilst you still have your epidural in, you are meant to get out of bed for the first time since the operation, that way you won’t feel as much pain. However, they took my epidural out on the third day without getting me out of bed. I got out of bed for the first time the day after they took the epidural out, meaning it hurt a lot, no matter how much morphine I pumped into my system. But I was okay. I think. I was used to pain.
As I was healing, everything seemed fine. I was in pain, but not in as much pain as I was before. I could move on with my life. However, things changed when my ribs started swelling, causing my breathing to get bad again, and I started feeling a lot of pain again. This happened 6-12 months after my operation. I can’t quite remember, it was a while ago. And I have been in near constant, sometimes terrible, pain ever since. It wasn’t just back pain either, the pain was all over my body. My thigh muscles were weak because I didn’t receive proper physiotherapy after my operation. So they hurt all the time, especially when climbing stairs or hills. My back hurt. Everything hurt. I also started getting issues with my time of the month, including but not limited to incredibly bad cramps.
I didn’t know what was happening. I felt so alone because I had no one to talk to that could understand what I was feeling. What I was going through. I was depressed. I was in pain. I didn’t know what to do about it because painkillers weren’t working.
I was alone.
I mean, I had my family and my friends, sure. They were all supportive. They helped me as much as they could. But they didn’t understand. They didn’t understand my pain. They didn’t understand what was going through my mind. They didn’t understand. And as much as I loved them, as much as I was, and still am, grateful for everything that they have ever done for me, they couldn’t understand. That meant that they couldn’t truly help me.
Earlier this year I was diagnosed with Fibromyalgia and Polycystic Ovary Syndrome. The Scoliosis still affects me also. I’ve found the answers to what’s causing me so much pain, and other problems also. But all of the treatments the doctors prescribed didn’t do anything. I have tried three different types of the contraceptive pill, they all gave me chest pains and didn’t really do anything for the symptoms I was experiencing. Painkillers don’t work for Fibromyalgia, and everything else I have tried either doesn’t work, or it works whilst I am doing the thing (such as distraction and meditation), but once I stop doing those things the pain comes rushing back.
However, I am proud to say that after a lot of research I now understand my conditions a lot better. I now understand ways of helping myself. I now know some things that might truly be able to make me feel better. But time will only tell if they will or not. In fact, I am already starting to feel slightly better.
I still feel alone sometimes. Like I am the only one who understands what I am going through. Which, in essence, is true. I am the only one that knows what is going on in my body and my mind. However, I also know that I am not alone, that there are people experiencing the same symptoms. And I am reaching out to them. I am opening up more to people, whether people I already know or people who I meet.
I am slowly becoming my true self. The person I want to be. And no matter how much pain I am in, I am going to try and maintain that. I just hope that I can. And I hope that all of you are able to be your true selves and that you all have wonderful lives.
This is what my spine looks like now that I have had the operation. As you can see it is still slightly curved as you can't get it completely straight without the risk of paralysis. They can only get your spine as far as your nerves will allow them to. I just wanted to add a quick note that I am forever grateful for the surgeons that did this operation for me, and for the nurses that looked after me when I was in the hospital. I am also forever grateful for my friends, family, and teachers that helped me during this time. Thank you, all of you.