Before reading this post, I would highly recommend that you go read the previous blog post I posted, you can follow this link: https://20somethingish.blog/2019/02/12/life-with-chronic-pain-part-1/
How is it living a life as a chronic pain patient? I have one word to answer that question, and that is ‘frustrating’. I don’t know how else to describe it, because it is just so fucking frustrating to not able to do whatever the fuck you want to do, when you want to do it.
For me the most frustrating part have been that the doctors can’t see what is wrong. All of the scans I have gotten, and the doctors I have seen have told me the same thing. They can’t see anything, and it looks like nothing is wrong, and I just need time. It has now been six or seven years since the last surgery, and I am still in a lot of pain, so how many years am I supposed to be in pain? Most likely for the rest of my life. And the is frustrating.
Since I have been a chronic pain patient for so many years now, I can see the patterns of when I am going have days where I will be in more pain. For example, during the winter season or just when it is cold, I am going to be in a lot more pain than I am in during the summer. And if I due certain activities, I know I will be in pain after.
However, the weather one is the worst. From approximately November to April, I now I am going to be in a lot of pain. At least when I am in Denmark, I usually am in a lot of pain during these months, and I am more or less going to be miserable during this time. I have become a lot better in not letting the pain control my life, but it is difficult. Especially when there is so much stuff I want to do, but I can’t.
Another thing I deal with on a regular basis is thoughts about my future. I am really scared how this will affect me when I am done being a student and I have to start working a full-time job. Right now, I don’t know how I am going to be able to work a full-time job, because I can barely manage to go to work for two hours a day right now. And then it my feelings go back to being frustrated again, because now the chronic pains are going to dictate my life again. I can’t choose a job as whatever I want to work as, because it needs to accommodate my needs, which sucks for a person that doesn’t like being controlled. When I was a teenager, I had one dream job, and that was to become a chef. I absolutely loved cooking (I still love it), and the idea of being able to be cooking for a living was amazing to me. After going to work full-time for a week at a restaurant when I was 15, I realized that the dream of becoming a chef, would not be more than a dream. Physically, it was just too demanding, and after day two I was in so much pain that I knew that it would not happen. A part of me still wonders ‘what if I would have become a chef, how would everything look then?’
‘What if?’. Those two small words which I have unintentionally been focusing on. I have spent so much time thinking about the what if’s, that it sometimes takes over my entire life, and I forget to live in what is happening now. The biggest what if’s for me have been/are: “what if I chose not to have the surgeries? What if I wasn’t in so much pain? What if my life wasn’t dictated by my chronic pain, depression or anxiety? What if I wasn’t me?”. I know all of these what if’s are not good for me, because I can’t change any of it, and using so much energy on the what if’s is actually making me feel more depressed.
Chronic pain is one of the biggest contributors for my anxiety. I often get anxiety and panic attacks because of the chronic pain and the ‘what if’s’. My mind often goes spiraling out of control when I think to much about my chronic pains. And I think that because the future is so uncertain, it makes me feel very anxious, because I can’t really make that many plans for the future (both the near future and the far away future) right now and that scares me. I like to have a plan, but I can’t. Or maybe I can make plans for the future, but I will most likely have to cancel half of them, because I don’t know how much pain I will be in. And one thing you should know about me, I don’t like when plans change last minute. So, you can see how that is not a good combination right?
One question I have been asked many times is “Do you regret saying yes to the operations?” I really hate getting asked that question. How am I supposed to answer that? No matter what I answer, people question my answer. If I answer yes, then they either look at me sympathetically and feel sorry for me, or they tell me that I should be grateful and just accept it. And if I answer no, they look at me like I am crazy, because who would choose to live a life in chronic pain? But the real answer to this question is a bit more complicated. Do I regret it? No, but I wouldn’t want to go through it again or have anyone else to go through it.
Going through the operations and having chronic pains, together with my battles with depression and anxiety has molded me into the person I am today. Without going through these things, I don’t think I would be even close to being the kind of person I am today. The biggest thing I have learned from going through these things is to have an open mind and not judge people based on what you see and what other people tell you. Because I hated (and I still do) when other people were giving me weird looks when I was in the wheelchair, or judging and talking about me behind my back, because of things they had no idea was going on. Because I know how it feels to be the one people are looking strangely at, and drawing opinions and conclusions about me, without knowing me, I know how much it hurts, and I don’t want to be the reason another person feels like that. If I hadn’t gone through what I went through, I don’t think I would be able to do that, before I was very judgy towards other people and did exactly what I later found out I hated when other people did to me. For me I think I had to go through these things to be able to grow as a human in this world, and I am so grateful for that.
When I first started writing this blog, I didn’t want to include anything about my chronic pain. The reason why I didn’t want to include it here is that I have always been the girl who is always in pain. And in the last couple of years I have been refusing to make that a big part of my identity, because that is what everyone in high school thought. But the more I think about it, the more stupid I realize that sounds. Chronic pain is a part of my identity, it shouldn’t be all of my identity (as it was in the beginning), but it is important that I start to accept that it is going to be a part of my life.
And one thing I am beginning to realize is, that in stead of focusing on the what if’s in my life, I need to start focusing on the what is’ in my life, and be better at living in the moment and focus on what is currently in my life.