Podcast: How to navigate fitness, wellness and CF

Transcript

Voiceover: Welcome to the CFStrong Podcast. CF Strong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear first-person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health.

Brad: G’day everyone and welcome to this incredibly exciting new season of the CFStrong Podcast. I’m your host and fellow CF patient Brad Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I’ve taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I’ll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Tayla. In this fourth episode of our series, we’ll hear from each of our six guests as they answer the question, do you have a fitness or wellness routine that works for you? And what benefits have you experienced as a product of that routine?

Adam: Um, it’s changed a lot over the years, I would say before Trikafta and then after, well, currently taking Trikafta, um, it’s changed completely. So before I was on Trikafta, it was wake up, do physiotherapy, pulmozyme oral medications. Like that was like, uh, I had to do that. That was just a part of my routine, and it was something that, I stuck with as much as I could because it kept me healthy. Um, now in Trikafta-world as I like to call it, um, it’s different. Like I just wake up now and I go about my day and the things that I’ve replaced. Um, the, the things that I’ve replaced with that old, that old system have, have now just become like runs or, um, eating well or, um, trying my best to meditate or, or listen to good music and really enjoy the moments as much as I can. Um, so, you know, at the moment I currently go for runs. I really enjoy them because it’s me, my headphones, and it’s me in the world, and it’s me in the air, and it’s me in the cool breeze. And whenever I get home, I feel amazing. Um, I have the best days after I go for it. I definitely get that run as high. It’s so good, um, uh, drumming as well is such a, is such a workout. Um, and it’s so cathartic too, and that’s the big part of my wellness routine. Even if I’m, if I’m not teaching, if I’m not playing in my band or playing professionally, even if I’m just playing by myself, it’s so cathartic and it feels so good, and by the end of it, I’m usually drenched in sweat and, um, feeling incredible too.

Blake: Yeah, no, well, pretty much all of my fitness comes from walking to and from the bar back to my table at whatever weird town I’m in. Um, so yeah, no, fitness is probably not my point of expertise, I guess. Um, I, you know, I’m one of those ones who joined a gym once and then, you know, now I just pay 40 bucks a month for something I don’t use. Um, so that, that is where I need to improve. I’m not, I, I’m not gonna sit here and say that I, you know, do stuff that I maybe don’t do. Um, but yeah, it’s, uh, you know, again, as I said, I work a lot at night, so, you know, I, I don’t have the, um, you know, I, I’m not very accustomed to, you know, getting up early and, you know, I do a lot of sleep in, so that is where nobody should ever listen to me, I don’t think. Um, so yeah, I think I may just leave it at that.

Brad: I will ask you, is there a rebuttal to that? Is there one form of exercise or one sport that catches the fancy a little bit that could be on the agenda for 2024?

Blake: Uh, I did just purchase a set of golf clubs, actually. Um, my mom and dad are massive golfers. We lived right next to a golf club, um, back home. So, I tried to get into it a few times as a kid, but now I think I’m older. I’m a lot more, um, I think I’m keen to get into that because, you know, it’s also a good game for just playing with mates and I can have a cheeky beer here or there on the golf course if need be. So, uh, so yeah, I think golf is on the cards for me.

Caitlin: Well, I used to be a competitive dancer, so my whole life I have been quite fit and very into my fitness and danced a lot, a lot, um, of classes throughout the weekend as well as competitions, et cetera. Unfortunately, it got to a place where, um, excuse me, um, my health couldn’t keep up with it as much. So since then, I’ve found Pilates reformer Pilates in particular, and I really enjoyed that, um, just to keep the body moving, um, and just to try to keep strengthening the lungs and the bones, because obviously, CF has an impact on those. And, um, remind me of the second part of the question.

Brad: Um, just a, like a routine that works for you?

Caitlin: Uh, yeah, so I try to do, um, two to three Pilates classes a week, and then just walking the dog a couple of times a week as well.

Ellie: Um, so currently my fitness routine is Pilates, but I guess fitness is really interesting for me because I don’t know if it’s just out of pure boredom, but I get really like, invested for a short period of time and almost like, oh, I’ve accomplished that now. Like, what, what’s next? So I guess, um, kind of speaking from university onwards, I was very in the gym. Um, a lot of, you know, those Instagram, like Insta master workouts and stuff, and it, it took me a couple of years to, to figure out it’s probably, uh, not the best , not the best advice to follow. So then I got really into weightlifting and I found a lot of really great people on social media and, and PTs that were giving really, you know, really clear good advice around the do’s and don’ts in the gym. Um, and I was doing that consistently for about two years, and I was really, really loving it. Um, I mean, there were definitely ups and downs. I think weightlifting is such a great sport and I would almost use it to kind of just like clear my head as well as the fact that I was also seeing progress around becoming stronger. But it was also a really challenging one because you go through so many different phases with that kind of exercise around trying to gain muscle, but then also I guess cutting back on fat. So it really kind of like triggers a lot of body image stuff as well. So I was doing that really consistently and, and loving it for quite a long time. And then I kind of fell off of it and really started to resent it. So I was going to the gym and doing like a couple exercises and just saying, I have to leave. Like, I’m so overwhelmed and overstimulated and there’s too many people here and, you know, everyone looks amazing and like, I’m gonna head out. So I was doing that and then I, I wanted to improve on my cardio because of CF and I kind of, it kind of almost goes against what I just said about wanting to fit in, but I, I kind of almost used it as an excuse not to do it. Like, well, of course I can’t do cardio, of course I can’t like run because I have CF and like, I’m not, I’m not good at cardio, but I, I just, I was like, well, why not? It’s ’cause you’re not doing it . Like you haven’t even tried, really. So I just started, you know, do a couple songs after your, after your workout and that’s, that’s how it started. So I, I remember when I was really beginning, I could only run through like one song without them having to stop. And then it became two songs and then became three songs. And I was like, okay, well maybe I can try and reflect 15 minutes without stopping. And it became half an hour. And then I was like, okay, well if I can do half an hour in the gym, like, let’s get outside, let’s like run in nature , let’s get some fresh air. Um, and it kind of, yeah, just like progressed so quickly from there. It was one K to three to five. Um, and I remember, ’cause I follow Josh on Instagram, I’m forgetting his last name. I think it’s Jones. Yeah. And then I saw your profile through him as well. And I think at the same time he was doing, I think five miles a day, and it was when you were doing your 10K a day and I was like, okay, that’s kind of what I’m looking at doing. Like, I wanna be able to do that , I, and then I saw the 40, the 42 for CF, and I was like a marathon. Hmm. I don’t think I could do a full marathon, but like maybe I trained to do a half marathon. Like that would be, because I know that there’s like a statistic around not many people around the world can, can say that they’ve done it. And I was like, how amazing would it be to say that I, I could, I’ve done a half marathon, like while having CF. So then I started training to that and kind of did some research and the, the research that I’d done had said, you know, if you can get to 16, normally adrenaline can kind of push you through on the day. And I was like, okay. Like, okay, I feel like I can get to 16. And I remember the first time I did 16, I don’t even think I’d set out to do the full thing. Like it was just a really nice night with, um, daylight savings so it wasn’t getting dark super quick. Um, and I was like, okay, well just, just run for as long as you can, you know, if it’s eight Ks, if it’s 10, like just, you can stop when you want. I kind of didn’t put any pressure on myself and I was getting really, I could do five Ks is the hardest I feel once you get past five. I was like, well, I can do 10, like easy . Like I’ve gotten to that point and I was like, no. Okay, well last time I stopped two Ks before home and it was more painful to have to walk home than it would’ve been if I’d just run home. So I was like, okay, I’ll run home. And I think I got back and I was at 14, so I was like, I think I could do one more. And then kind of went around the block, tried to make up one more, and then I’d almost gone like too far. So I did the same thing. I was like, well, I can’t stop now, I have to get home. And then I’d done the extra 16 and I just, it was like, I just did that in like a couple months and it was really like, the progress was so fast that I couldn’t believe it. Um, and then I worked my way up. I actually booked to do a half marathon and then I went away that weekend and I was like, oh, that’s kind of frustrating. But you know, I, I went away to go and, um, meet up with a friend, um, up in Grafton. So I was like, oh, maybe I’ll just do it the weekend I get back, I’ll just do it on my own time. Like, you know, relax, you know, take my time. And I finished and I was like shaking and like opening my door and I just remember like lying on the floor like crying. I was like, oh my God, I just, I just did it. I just did it. And then, um, yeah, so that was just I think a really big personal goal that I feel like I just like knocked outta the park because I was running and not even really getting tired, like keeping a steady pace. And I was like, I never thought I would be able to do something like that. And so I tried to keep that up and then I ended up running two more and I was like, I’m so happy with that. I’m, I’m kind of only running about like once, twice a week-ish at the moment. So it’s kind of gone back down. I did go through a challenge, like I did do five Ks a day for a month, um, kind of, yeah, inspired by you guys, not gonna lie, um, smashed that out of the park and kind of, I was also really supported at work through that. Um, I was on a second in a different team, um, while I was doing that. And they had an ultra marathon runner, so she was giving me just all the advice and all the tips and kind of in our weekly meetings we would have photo slides. So every week would be like an update on my running. And, and once I did the, the full month and kind of let them know about the, the marathons and stuff, they, they’re a massive support as well and they almost kind of help me keep going. Um, but at the moment I kind of, yeah, I’m doing that less frequently, but still trying to keep it up because I know, and even at clinic they’re really happy that I kind of taken running on kind of as definitely a better exercise for the cf. Um, at the moment, yeah, I still, still kind of don’t wanna set foot in a gym just yet. so I’m sticking to Pilates at the moment, which is just like nice and relaxing, um, kind of, you know, good balance between that and the running I feel. But I don’t necessarily have a proper routine. I really like trying different things. Um, but I also think that that’s good because I think that if I just stuck to the gym, never tried running or you know, never got into it, I wouldn’t, I kind of wouldn’t have accomplished all of those goals or I wouldn’t have even thought to set them for myself because like I didn’t branch out.

Sam: Uh, yeah, it’s, uh, God, it can be hard sometimes keeping up with a routine, but the one I found is I love to be physically fit and the way I can do that is by the first thing every morning get up and do some kind of exercise, whether that be going to a boxing gym, going for a run, going for a swim. Uh, yeah, I try to do it five times a week in the morning before I go to work, before I do start my day. If I get that done for the first hour of the day, then the rest of my day is gonna be fantastic. And that is what gets me outta bed in the morning. So, and also having physical hobbies like surfing, snowboarding, um, hiking, all that kind of stuff as well.

Tayla: My fitness routines, um, used to be really good. Um, so I used to play a lot of sports growing up. Um, go for a lot of walks or runs, um, especially when I was on the track after trial, I was super healthy, I guess, I could, you know, run for a while without leaning over and nearly passing out from coughing so hard. But, um, mm-hmm now after coming off the trial and then starting it when it came on the PBS I have had an irrational fear and I can identify it as a rational, um, where I’m worried I’m gonna cough up blood if I go super hard again. Um, ’cause the last bleed, it was kind of like have the, um, clotting drugs and just hope the best. Hopefully I don’t have to call an ambulance, um, because I think I coughed up like half a cup last time. Um, and it slowed and that’s good. But now, I’m a little bit terrified. Um, ’cause growing up I used to do boxing, um, kind of all that sort of stuff at different gyms with different friends and I cough hot blood during that and I’m like, ugh, okay. So I mean, it hasn’t really made much of a difference, I don’t think. Mental health maybe, um, walking on the treadmill, um, going out in the back and playing with my two doggos, especially the big 47 kilo dog of mine, um, who’s a total couch potato. But, um, yeah, playing with him, but doing Pilates at home and following a couple videos for like, maybe between five and five minutes and half an hour, depending how I’m feeling that day kind of helps a bit, um, using my little two kilo weights, which probably doesn’t sound like I’ll do much, but hey, at least I’m joined. So yeah, that’s kind of my fitness routine at the moment is kind of if I’m feeling energetic enough and I’m not tired, I’ll do it. Sometimes I’ll be tired and I’ll force myself to do it, but I don’t do it consecutively every day like I want to. But then I have to remember, I’m not always normal , even if I feel it with Trikafta, um, I still need my days to kind of not overwork anything. Um, I’m not a fitness person either, really kind of tried to be when I was younger, but I was like, I like being in my pajamas all day sometimes so . But yeah, that’s currently my fitness thing is mainly kind of at home Pilates, um, trying to connect, you know, your mind to muscles and I mean, it helps with anxiety too.

Brad: Thank you so much for listening to this episode of our series. We thank you for taking the time to sit down and hear the value that each of our six guests provide. And we wanna thank them for taking the time to be a part of the series two. We hope that this has not only been informative, um, but refreshing to hear that there are many different perspectives to each of these questions and challenges we face as CF patients. Once again, I’m your host Bradley Dryburgh. Thank you so much for tuning in the CFStrong podcast.

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