Tayla: Balancing life and Cystic Fibrosis as a young person

By Tayla Purves

I have always never thought about having CF – I kind of told my body to shut up, we’re doing things… which had a success rate of 6/10. Netball and Soccer Tayla were slightly less unsuccessful, but that’s totally beside my point.

Balancing CF has always been, and probably always will be a balancing act. Now at 21, studying at university full-time and working in motorsport permanent part-time, I’m learning even more about my abilities.

For the most part, I do okay. I give myself time to recover and take rest days, even if it eats me alive – you could say I like being productive. I’ll take naps if I’m tired (which, is totally almost a daily thing if I’m honest). I guess it’s easier to give yourself excuses with CF, as a lot of others in my life do, but I’ll encourage you to use it as a strength instead, it’s your difference compared to others. CF has given me strength, determination, a sick sense of humour, and an incredible ability for time management. 

My philosophy for balancing your CF with study or a job is to dive in and find out. We’re all so different, so what works for me might not work for you. I found my limits by saying, “Ok, the worst that can happen is I sleep for a week.” And, you know, all I did was sleep it off. My first time in South Australia was so worth the exhaustion, and I found my limits from an experiment with 5am starts and 6pm finishes, adding travel to that too.   

For me, since I started on Trikafta, balancing my health and uni has become a breeze so far. Whether this is because I’m an online student or not continues to be in the unknown basket, but again with Uni, I tried full-time and managed more than okay – even when I was concerned.   

“The worst that can happen is I drop a class,” became my mantra, but turns out I could handle full-time study.   

Now with this new sense of body and health, I have the flexibility to be more adventurous with my time and energy. Want to try Pilates? Ok. Want to try getting up early and heading to the beach? Ok, but a nap is going to be needed later. Want to work more? Ok, just give your body time to recharge. I believe that balancing your profession, study, and hobbies is a balancing act, but it can create so many learning opportunities, and I guarantee you’ll surprise yourself with what you can actually do. I know I did.   

Keeping an open mind, with a bit of determination, I have been able to set and achieve new goals; things I never believed I could do. Running and walking on a treadmill for 30 minutes? I honestly thought I would pass out but I didn’t. I felt great after. Travelling for work and working big hours over 2-3 days? I was worried I’d get sick, but I didn’t and survived racetrack madness, creating memories, and a hunger to do more.   

It’s daunting knowing that CF and life are a balancing act; there are a bunch of what-ifs. I think the older I get, the more my tolerance and balance will evolve. Whether my condition continues to be stable or improves, (or does the opposite), I know finding my balance will always be the same act: try before I put a mental block up in fear. I continuously surprise myself when I step outside my limited mindset and comfort zone, which always leads me to a realisation of, “Huh… That was Ok.”  

Anyone who tells me CF will get in my way, or I can’t do something because I have CF… I know that is just limited mindsets believing a stigma of illness and disability, and not everyone believes in that narrative. I certainly don’t.  

Chatting to a psychologist and my support network about stressors surrounding CF and my career, I was able to help myself understand my body and my limits – with the added event of trying to see what would happen, how I felt, and what my new limits were.   

*It’s important to note that everyone’s reaction and response to medication is different. While some people may experience positive outcomes on certain treatments, others may have different experiences, or they may not be eligible to receive the same medication. To understand what medication(s) may be appropriate for you, or if you have any concerns about your current treatment, please speak to your clinical team.