It Was The Worst Of Times… not knowing what was wrong with me.
Health issues suck. No matter how you look at it, they are awful. Whether you are born with something or it develops over time, it is awful. At sixteen years old, I was diagnosed with having muscular dystrophy – but as luck has it, the form I had was an undiagnosed/unknown form. However, I was born with this, and it is something I have dealt with since, well, I could walk. It was the worst of times not knowing what was wrong with me and what I had. Do not get me wrong, it has still a horrible time – in fact, things just keep getting worse from me.
It was the worst of times trying to explain to people what was going on with me when I did not even know. My “excuse” was always that I had a muscle issue – which was true, though I did not have a name for it. Everyone (aside from my Mom and a few other family members) always thought I was making it up that I had an issue because I did not want to do certain things. I have had teachers, gym teachers, principals and a few people who I thought were friends publically embarrass me and say rude and cruel things to me about the muscle problem. I have had gym teachers specifically call me out and make fun of me in front of other students. It was ridiculous and well, it was the worst of times. Of course, those teachers were spoken to, but it still did not help – everyone knew at that point, so I was further made fun of by the students. I loathed going to school because I knew I was going to have to do things every day that showed that I had weak muscles. Going up the stairs in my school was an assache – I was in pain, frustrated, embarrassed – however, I did not want to use the elevators. Everyone in school knew that the elevators were for those that had broken limbs or those that were handicapped in one way or another. In addition, it was a pride thing – by using them, it meant that I gave up and I was not ready to do that yet.
Let me get a couple things straight, to look at me, you would not know that anything was wrong. I struggle with going upstairs, walking long distances (who doesn’t complain about that now a days?!), running (lets just say it does not happen – though I can walk fast), getting into bigger vehicles and taking large steps up onto a sidewalk. There is constant muscle tightness, aches, pains that I deal with daily, and nothing really helps. I have tried all sorts of rubs, creams, patches, gels, pills – anything “pain relieving” I have tried. Nothing works. There is no cure for muscular dystrophy and for me, there is really no remedy. For personal reasons, I do not like taking pain pills, unless they are absolutely needed. The past few weeks have been horrendous for me, I am in more pain that I have ever been my entire life. It would be nice for some relief, but I doubt it will ever happen.
It was the worst of times not knowing what was wrong, having people make fun of me and being in pain… but, it’s still the worst of times having to currently deal with muscular dystrophy. So, why am I telling you this? Well, for many years, I have wanted to hide the fact that I have muscular dystrophy and pretend that it did not exist, but I have come to realize that by doing that, it is not helping me or anyone else. Moral of the post – do not make fun of people for something that they cannot help or “fix”. It is cruel and all you do is make them feel worse than they already did. Eventually, I plan on writing more about muscular dystrophy, but that will not be for a while.
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