Life with Chronic Pain, Part 1

I am a chronic pain patient. It feels weird to write that down as a starting point in a blog post, but that is part of who I am now. I am a young woman, who is having chronic pain in my, ancles, knees, hips and more generally in my legs. The story behind why I am a chronic pain patient is actually quite long, I am not really sure if I know, remember or have just chosen to forget the full story behind it, but I will tell you how I remember it.

I have had some sort of pain in my knees for as long as I can remember, especially when I was doing sports, and when I was growing up I did a lot of sports, I played soccer for a long time, then I also played handball for around 4 years and I also played some badminton for a season. It was during that time my knees started to hurt, and it started to become quite uncomfortable to play the sports, I continued playing but it was taking a toll on my knees. The cause of the pain I was experiencing was “knock-knees”. I don’t remember when my parents started taking me to the doctor regarding this concern, but I was pretty young when they asked the doctor about it. My dad had the same problem when he was a kid, but he had braces on his legs when he was a child to prevent it from being worse.

My doctor, parents and I decided that it would be a good idea for me to get an operation to help make my legs straight, and thereby ease the pain I was experiencing. I had the first surgery in my knees when I was around 11 or 12. The first surgery was a pretty small one, and for the first 4-5 years it was working, and it was making my legs straight, until they weren’t straight anymore. The season after the surgery, I started playing sports again, but it was still not helping, and the pain slowly started to come back again. The doctors could conclude that the surgery didn’t work, and I had the choice if I wanted to live with the pain the way it was or go through some more surgeries to straighten my legs. Again, my doctor, parents and I chose to do the surgeries, because mainly I was nervous/scared what my future would hold if I didn’t get the surgeries. The questions I had in my mind was questions like; “If I don’t get the surgeries, will I then always be in pain? Will I be able to become a chef? What sort of limitations will it give me?”. At the time I don’t think I realized how big the surgeries actually were and how much it would impact my life, but I chose that I would rather get the surgeries, and not be in pain when I was done with them. It is clear to me now, that I didn’t fully understand the possible side effects at the age of 15. Since I was at an age where I understood what was going on, I had the final say in the matter, of course my doctor and my parents also had something to say, but if I had said no to the surgeries, then I would have had them. I knew that I would have to have two osteotomy surgeries (one in each leg), and then maybe two more surgeries to get the braces out. For me that sounded doable, and I had the first of the operations a few weeks before I turned 16.

I don’t know what happened after that to be honest, the next 2-3 years were kind of a blur to me, especially when I think about all of this. All I remember is being in a shit ton of pain and my bones healing very slowly. I spent the next six months in either a wheelchair or on crutches, until the day the doctor told me that one of the braces in my leg had broken, and they had to do another surgery to fix it. Again, the healing process of the bone was maybe 3 months more. After the first bone was healed, we began planning the next operation of the second leg. I was still in a lot of pain from the first operation, but I also just wanted to get it over with. Going into the operation of the second leg, I didn’t think it was that easy anymore. I was so scared, because now I new how much it would actually hurt. My doctor and parents told me, that once I had had my first leg fixed, it would be best if also got the second one straightened out. They knew that a part of me didn’t want to go through with it (and at the time I really didn’t want to), but they also new that it would be for the best if I did go through with it. As far as I remember, I think I was told that “once you say A, then you have to say B” so there was really no way I was going to get out of the surgery.

So there I was, being 17, about to start my first year of high school while walking with crutches. I refused to have my wheelchair with me to school, because I was a self-conscious teenager who didn’t want to bring anymore attention to myself. The healing process of leg number 2, was pretty much the same as the healing process of leg number one. It was healing very slowly. So, after 6 months I had to get a second operation in that leg as well, but this time they were going to scrape some bone from the hip bone and put into where they had cut the bone in my leg, to help promote the healing process, and it helped. I had to get the first brace out and if I am being honest, I don’t remember why I had to get them out.

This meant that I spent almost two out of my three years of high school, either walking on crutches or sitting in a wheelchair. Not exactly how I had imagined my high school years would have turned out. For girl who desperately wanted to just blend in, it was pretty damn rough. I mean, everyone was super great and understanding, but it had its limitations. I couldn’t really go to any parties, and after I had been to school for an entire day, I was completely drained from energy.

Most of my memories from these years, revolves around, going to the hospital, the operations, the restrictions I had due to my legs, and what fills most of my memories is the pain I was in. Until now I have had maybe eight or nine surgeries, to be completely honest, I don’t actually remember the exact number. The surgeries didn’t really work that well for me, I mean, my legs a straight, but I am in so much pain still, that sometimes I wonder how I am going to function normally. It has been around six or seven years since I had the last surgery, so I have started to get more used to the pain now. Well, I have started to forget what it feels like to not be in pain. Of course, there is ups and downs in the strength of the pain, but the pain is constant.

I tried to make this story behind my chronic pain as short as I possibly could without taking to much out. Originally, I planned to write a lot more in this blog post about how life really is when you are dealing with chronic pain, but what I have written so far is I bit longer than I anticipated. Therefore, I have chosen to split it up into two different blog posts, so one of the next days I will add a part two, where I will talk a bit more about how it is to live with the chronic pain now and how I am dealing with it.

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