Reflection: knowing the game


So way back in the day, I was a kid. Back in the day of tape cassettes. Before the internet and a computer that did much of anything. Way back in the day I had pain. It is hard to even say when I realized I had pain that wasn't normal. Certainly, it isn't the pain I have now by any degree. 

I know in gym I felt it. In the knees especially. Or an ache in my joints. And sometimes it hurt to a degree that I wondered if it was right or normal to feel that way. The older I got the less I liked gym class, I can tell you that. But it I was active, which, all things considered, was the best thing for me. And as a teen, I rollerbladed a lot, which also hurt in the knees. I was tested for a long time for lupus. Saw my first rheumatologist when I was 16 and diagnosed with hypermobility syndrome (EDS hypermobility type) with chronic soft tissue pain (developing FM he said in his notes). Because I can say as a child it was just something that bothered me. As a teen, it was getting to be noticeable. I ached. I was tired all the time. I never slept well. 

I remember this time when I was in University and I took a gym class for that specific credit, as it was a liberal arts university and you needed a range of credits in a broad range of subjects. In the class, we learned about a great deal of physical arts but also did some activities. We did a soccer game. And I realized then just how much pain I could feel rapidly in a short period of time, despite the fact I could tolerate the knee pain associated with my regular rollerblading. It hit me hard. My legs felt like hot irons had been shoved into them. My back was on fire. My knees were not going to even hold me up much longer. I had to stop moving. Period. It was embarrassing. I knew pain. It had been getting worse through my teens. I knew fatigue, I had it all the time. But I was learning Hard Limits. What my body simply wouldn't let me do anymore. What it would allow others my age to do. I did not like it. One bit.

Being a child and teen with an illness, especially undiagnosed is not a great experience. You feel like an outsider from your peers. And like you can't say anything because you have no diagnosis. Like you are just exaggerating or making this all up because you have no name for it. No idea what is going on. Except it hurts and you're tired. The older you get and the worse it gets. It was frustrating to me. And embarrassing. I had this thing where I healed funny for a while. Had hypertrophic scars on my arms, from minor wounds. Had some on my foot and leg too. Some from rollerblading incidents, one from an accident in the house... just random things. And I would scar horribly from it. Something to do with the immune system not turning off and just healing and healing. I used to hide them all the time because I was shy about them.  Just as I was about to graduate a teacher asked me if I was being abused! I was like no, no I am not. But, if I was, fine time to bring it up, buddy. Anyway, just another part of an undefined illness to be hidden and not talked about. I may be prone to scarring like that now for all I know. It is the sole reason I do not have a tattoo... fear of scaring like that. But I could have a wicked scarification if I were into that. 

I wanted to be Fixed. But they couldn't find what was wrong with me. I just wanted to feel better. At that age, I thought doctors were gods and could cure me. That is all I wanted. 

It comes to no surprise at all to me that when I went to University and the FM side of things bloomed into what it is today I rebelled. I wanted to be 'like everyone else'. I tried to keep up with their partying. I tried to do everything everyone else did. And I couldn't keep the pace. I just would feel the consequences profoundly. And suffer for it so much more. I got pretty depressed about it. Realized I needed to pace myself to just feel better. I couldn't be like them, ever. Simple as that. Shortly after I got that Name I sought. The fibromyalgia diagnosis. Added to the hypermobility syndrome, of course. A name for the pain, fatigue, fibrofog, insomnia, IBS... everything. I am positive when I was a child it was just hypermobility syndrome, but the strain of that and the insomnia it triggered the FM in my teens. 

Sometimes our pain story started in the beginning. Sometimes we have known it all our lives to one degree or the other. That we might never be able to keep the pace with others. That it was going to be a limitation. That we needed to pace. Irony is, it is a lesson I have to keep learning as I try to 'fit in with the other kids' when I know that I can't. You'd think with a lifelong pain story I would know better. I know the game. I know the rules. But I want to rebel. Acceptance is when I understand the rules make me live a better life. Rebelling is what causes me infinitely more suffering. But in this life, don't we all want to play by society's rules? But no, we have our own game and our own rules. No matter if you were in the game from birth or for just a year, we have to change our outlook. Rebelling is just another word for denial. And it never gets us anywhere but a lot of pain.

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