Quick Fire Podcast: How do I balance time with friends and CF?

In this episode, CF Strong podcast co-host Sam Lefoe chats with Clinical Nurse Consultant Kate Johnson about how to balance time with friends while living with Cystic Fibrosis.

Kate delves into the challenges of balancing cystic fibrosis (CF) responsibilities, such as medication adherence, with the desire to partake in typical teenage activities. She suggests normalizing CF as part of one’s identity rather than letting it define them. She discusses strategies to integrate treatments into daily life, suggesting morning medication routines and incorporating physical activities like sports or walks as incidental physio. Kate encourages individuals to consider how they perceive others taking medication, normalizing the process and fostering self-acceptance.

Transcript

Voice Over: Welcome to the CF Strong 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.

Sam: Hi everyone. Today we have a quick fire, one answer, one question podcast with Kate, a CF nurse. Today we’ll be asking the questions that are kind of difficult to discuss or might be a little bit embarrassing as well. So a tricky situation that I know myself went through growing up was trying to balance my CF responsibilities such as taking my medications and also hanging out with my mates and doing all the things teenagers want to do. Do you know the best way to balance this out and what risks are right to take?

KJ: I can’t say that I know the best way to balance it out because it’s so individual and it’s where you’re in your life and what you’re up to. But my only answer I really give to people is to normalize your CF. CF is not who you are and it doesn’t define you, but it is that big part of you. And wanting to fit in with your mates and being independent from your family, they’re really natural parts of life. So something that any adolescent experience is not just people with CF but being adherent, so sticking to your treatment regimens as much as you can, enables you to do all that stuff with your mate. If you don’t look after yourself, if you don’t take your meds, such as your orkambis or your triamcinolone or your CREONs or whatever it may be, you know that there’s those side effects.

So we’re talking about the bloating, the stinky farts, the feeling unwell, feeling full, loss of appetite, decreased body mass index, all those sort of things that associate with poor health. So then you actually can’t go out and do those things with your mates and keep up with them. Can you fit in, make sure that you do most of your medications in the morning before you get up and about and go to school or to go out to catch up with your mates, etc. Can you do your physio before catching up with them or that incidental physio, when you’re catching up with a mate instead of just sitting there playing games or going out to eat. Could you do it as a physical catch up? Can you go play some sport?

Can you go for a walk? So you’re doing incidental physio that you don’t actually have to time everything else into the day. So you’ve done 20 minutes of higher level physio. Can that decrease the amount of physio you need to do at home as well? I always say what’s worse taking a couple of capsules, actually something that’s been spoken about a lot lately is a lot of people, because they’re well and feeling well, they hate taking their medication in front of their friends because it reminds them they have CF. And they don’t want to take their CREON. But I always come back to the fact of taking a couple of capsules. It may be three or four that you have to take with your meals. Is that better being able to do that in front of your mates rather than being stuck on the toilet for hours or even having that stinky farts or not the energy to go out.

Something that’s really simple to ask yourself and to get that into your head is how you feel about other people when you see them. So you’ve got a mate that’s got asthma, you see them take their Ventolin puffer or even a friend that takes multivitamins, etc. How do you feel about them taking them? Do you even notice them taking them? And more often than not, most people don’t even notice that they’re taking them or just think, oh, well that’s just normal. That’s what they do. And is that something that you can actually get in your head that, you know what, this is normal, this is what I do. My mates support me, my mates want me to come out and do those things with them. Let’s do this.

Voice Over: Thanks for listening to this episode of the CF Strong Podcast. Make sure you subscribe on your favorite podcast listening platform so you don’t miss the next episode. And if you enjoyed this podcast, we’d really appreciate if you could leave as a review. It helps other people find CF Strong, or share us with your friends. Also, a quick reminder that the views expressed in the CF Strong Podcast may not be reflective of Cystic Fibrosis Community Care’s viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible thanks to support provided by the Australian government. Thanks for listening, and we’ll talk to you next time.