Staying on Track & Making Time for Hobbies

Uncommon Lungs: Beyond the Episode

The pandemic shook things up for us all. Routines were disrupted, milestones reexamined, goals and plans overhauled. It altered the course of many of our lives and tested our ability to stay on track and maintain healthy habits. For Grace, this all came during a major period of transition—her first year of college.

Follow along with her journey pursuing her degree virtually, keeping in touch with old friends and new, and managing her cystic fibrosis (CF) treatment all the while.

Remember, everyone’s experience with CF is different. Make sure to talk to your care team if you have any questions or concerns about changes in your routine.

What's it been like managing your CF routine and transitioning to college during a pandemic?

At the very beginning of the pandemic, keeping track of my treatments and my meds was pretty easy because…things were very new, so school wasn't really that rough. Everyone was figuring everything out, so I had a lot more time to focus on my health and keeping myself well. And then, of course, during the summer I had all the time in the world, so it was perfectly fine and perfectly easy. During the fall semester, it was a little hard to keep track of everything. One, because it was a new school year, and two, because it was college, so…I was putting more pressure on myself probably to, you know, get the perfect grades and do everything that I possibly could to keep my GPA up and be successful. And so it was hard to keep track of my meds and keep myself accountable for that. And same thing in the spring, but it's definitely easier now because I do have more of a handle on just college life and I guess the college workload.

How has it been trying to stay in touch with your friends virtually?

It's definitely been hard. Like losing touch with my high school friends that I probably wasn't going to stay in touch with anyway. Just, you know, our lives are going in separate directions and sometimes that happens with friends and so trying to stay in touch with them and also trying to make new friends over the past year has been a little rough. I have made a few connections with kids at my school so that's really nice. So I definitely have…people to look out for and hang out with next year, so that'll be nice.

I [also] got really lucky with finding my roommate pretty quickly and finding someone who's really nice and who I get along with really well. I haven't had the chance to live with her yet, but we've become friends over the past year, so I'm sure everything will be great. We met because after I committed to my school, I joined this huge group chat of kids in the same year as me trying to find roommates [and] friends, and there became like a separate group chat that broke off…and we had like a Zoom night with a bunch of us, where we just kind of like talked about ourselves and our routines and our schedules, and our hobbies and interests and stuff like that…And we've been really good friends ever since, and so I'm really lucky to have someone who is really accepting of CF because I told her, like, right away, as soon as we decided that we wanted to be roommates. I wanted to be open and honest with her and let her know that I had CF, and she was really okay with it.

What's it been like to stay physically active during the pandemic?

In the very, very beginning of the pandemic (like March, April, May), I was nervous to leave my house beyond sitting in my backyard. I was so scared to be outside and even be within 20 feet of anyone besides like my parents and my sister. So what I did at the beginning of the pandemic was, I found these YouTube videos that this other woman with CF was posting of her workouts. They were probably like 30 or 40 minutes long and they were rough workouts…but they were really good because they kept me active. They kept me in shape. Sometimes my sister would do them with me. And so that's what I did a lot during the beginning of the pandemic.

Over the summer, I tried to play tennis. I ran a few times. And then, in the fall, like the fall semester, it was kind of hard to find a groove of working out because I was so focused on school work and my treatments and just trying to figure out, like, that schedule and balancing all of that. Exercising kind of did fall by the wayside for me. And then over winter break, I kind of was able to pick it back up again—started going on walks. And then spring semester, unfortunately exercise has kind of fallen by the wayside again! But during spring break, I was able to pick walking back up again and finals are over in a couple weeks, so after that I’ll be able to, hopefully, exercise a lot more than I have been.

“I wanted to be open and honest with her and let her know that I had CF, and she was really okay with it.”

– Grace, student living with CF
What advice would you give to others with CF who are transitioning to college?

I would definitely say balance is really important, and I know that sounds really obvious, but it can get hard when you have so much work to do, and you also have to do your treatments, on top of that.

So easier said than done, but I think keeping a balance and knowing what your limit is of being stressed and overwhelmed with everything and knowing when you need to, like, take a step back and be like, okay, I just need to relax. I need to, you know, get my mind off school, and whether that means exercising, or relaxing, or taking a nap, or doing your treatment, I think knowing when to step back and take a breath and really check in with yourself and see how you're feeling is really important.

Image of Julia Rae
Make sure to listen to the full conversation between Grace and Uncommon Lungs podcast host, Julia Rae

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