Some toughs about my BMD
When I was 11, I was diagnosed with BMD. I think my CK levels were somewhere around 2,000. I’m not exactly sure what that number means, but I was told I was on the milder end of BMD.
The reason I got diagnosed was because my 12-year-old brother passed away during a family hike. He had an enlarged heart. After that, my whole family got tested to see if we had the same condition. Everyone else’s results came back normal, but that’s when I found out I had BMD.
Looking back, a lot of things started to make sense. I was always a little worse than other people at sports, even though I’ve always loved being active and playing sports. It’s heartbreaking knowing that I’ll probably never be able to do sports the same way as someone without BMD.
I know I’m probably one of the people in this subreddit who is less affected by the condition, but it’s still really frustrating. I try to live a normal life, but it feels like almost every aspect of life is harder for me than it is for other people.
I also have a question about sleep. I’ve read online that people with muscular dystrophy may need more sleep, but is sleeping 10–11 hours a night too much?
Finally, has anyone here figured out how to not let BMD control their life and live as normally as possible?