Marissa Humayun shares how she adjusted her favorite hobbies, including walking and gold, after an MG diagnosis, finding new ways to stay active while honoring her limits.
Transcript
Before I was diagnosed with MG, I loved to play golf as well as workout a couple times a week, doing yoga, going on walks.
While I was diagnosed and the most symptomatic, I felt like those hobbies were kind of in limbo because I didn’t really know how much I could do to not exacerbate my symptoms.
Now that my symptoms are in a more stable place, I’m able to kind of look at those hobbies again and modify them for my life with MG now.
So I like to play golf, but I have to make sure that I have a ride to and from the golf course with my ocular symptoms. I have to make sure that I pack my medications and ensure that I get proper rest the night before and after golf as well.
I like to go on walks now and kind of resume that activity from my pre-MG days, but they’re less brisk and maybe not as long, but I still like to do the things that bring me joy. With these hobbies kind of being independent hobbies, or not really, like, involving a team or anything, it’s nice because I can kind of curtail the length of the hobby.
So if I don’t want to play all 18 holes of golf, I can just play nine holes. Or if I’m not feeling well on a day, I won’t walk for an hour, I’ll walk for a half hour or so.
Things like that, that I don’t have to rely on other people or let anybody else down. I’m just kind of like moving through my symptoms and trying to be kind to myself on those days.
This disease is tricky because so much of it relies on rest. And in American society, I feel like we’re that go, go, go generation of always having to do something and be productive. And that’s just not the case for people with MG, and myself included.
I would say it’s important to fill your cup and still do things that you enjoy, but don’t put a hole in your cup. Like, life is now Life 2.0 with you with MG, and I’m sure it’s probably a very human feeling to look back on your life before MG and feel frustrated that you can’t do the same things that you used to do.
But what can bring you joy is doing those things that you used to do, but in a way that is easier for you to maintain your energy and not lose the things that used to bring you joy.
Because that’s something I was really scared of when I first was diagnosed with MG. It was hard to kind of think about the future, and you know, what I was going to be able to do.
And I still feel like that being ocular and not knowing if I’ll become generalized one day, but I think, like being able to do what I’m able to do now and in a way that will still give me the opportunity to rest and not overexert myself, is the win, like, you know, I’m just I’m thankful and happy for being able to do just that.
