This question I'm asked a lot, and honestly I have to think about it. Because I mean sure if you take a quick glance you'd see allot of not so great things. Like all the trips to the hospitals growing up, all the needles and tests that I had to go through. Then there was how I was treated at times, and even now always having to prove that I can handle things.
Do I have any regrets from having MPS? That's a fair question that pops into my head as I continue within this post. I'd say yes however, very few. I just wish that I could have been more athletic, because for some reason I have those aspirations. However, I'm still working hard so who knows how far I'll get I've come farther then anyone said I would already.
There are also quite a few good things from having MPS, one would be getting to attend the MPS conferences, and getting the chance to meet some really incredible people, as well as getting the chance to travel across the states.
How did it affect my schooling? Well it definitely was a struggle at times, but it sorta fuelled me to prove that I could do it, it gave me a reason to try, while others thought I would use it as an excuse I used it as a reason to work as hard as I could while juggling doctors, and hospital appointments.
How does it affect my socialisation? Well sometimes it sorta freaked people out, but it taught me that true friends didn't care about that kind of stuff. It was hard sometimes always having to explain why I was out two days a week growing up lol. For the most part though it wasn't too awful, I'm kinda quiet and shy until I get to know you, so it just made it a little harder for people to approach me.
What about walking? Well during the clinical trial I started losing my ability to walk I was either in a mobile wheelchair or an electric wheelchair. Then one day a doctor said that it would become permanent. That taught me as well did several things from having MPS just because someone says something doesn't always mean they are right. So I forced myself into a walker, and now two years later I'm walking solo, not perfectly but better. It also taught me it pays to push yourself sometimes.
Would I wish I never had MPS? As crazy as it sounds, I don't think I would, I know it's brought pain and trials, but it's through all that how I became the person I am, I've learned not to take people for granted, that things aren't always easy, and life ain't always fair. If I didn't have MPS I don't know who I would be, I'd be someone else. I think going through everything MPS has brought has made me a better person, as well as its a part of me. So I'd have to say no I wouldn't make that wish.
Well hopefully that answers the question how does having MPS affect me.
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