Alex on switching gears and managing CF
In this episode of the CFStrong podcast we hear from Alex who for a long time let his treatment take a backseat. He discusses how he used to approach his health care, what helped him get to a point where he could take his treatment seriously and how he approached switching gears and managing CF.
"I also wouldn't change a lot of the decisions, even the bad ones, that I've made, because they've helped me learn, and they've helped sort of teach me what is important. So it's not just about managing, like you can, you can wrap yourself in cotton wool and just do all the treatments and live like a life where you sort of don't get out and experience or get out and live... it's about I think more balancing those things."
—Alex
Transcript
Deidre Gorrie: Hi everyone and welcome to the CFStrong podcast. My name is Deidre Gorrie and I'm the Programs and Support Services Manager for Cystic Fibrosis Community Care in New South Wales. I am in the incredibly fortunate position of being able to chat with some of the most amazing adults living with cystic fibrosis from around Australia for the CFStrong podcast series.
The CFStrong podcast series covers a broad range of topics including the challenges and successes of those living with cystic fibrosis, where you will hear real firsthand experiences and stories. Today, we are very fortunate to have Alex joining us and we are going to attempt to unpack the idea of switching gears when it comes to living with cystic fibrosis. Welcome to CFStrong Alex, would you like to say a few words to introduce yourself to our lovely listeners?
Alex: Hi, my name is Alex, I'm 27 years old living in Sydney with cystic fibrosis.
Deidre: We thought we would unpack the idea of switching gears. I know that we chatted about it before Alex and it was something that was particularly relevant, and we thought we could help unpack it a little bit to help some of our younger listeners and even some of our older late diagnosis listeners. So what was going on for you at--to get to a point, I guess, where you felt that things really did need to change in your life.
Alex: I mean, I guess I should preface this with the, I guess, thought that I'm not the greatest, well haven't been the greatest in my past, with managing sort of my healthcare and my treatments, I've sort of lived my life to the fullest and sometimes my own care would maybe take a backseat, or an afterthought to that.
So I mean, my general attitude towards the healthcare and treatment side of CF was sort of that I, like I wasn't going to let it stop me do anything. But at the same time, I sort of wouldn't give it the time or respect that it probably deserved. And I mean, with everyone sort of telling you, like physios and doctors and specialists telling you like every time like this is what you need to be doing. And you sort of, as a teenager, especially in my early 20s, I sort of thought like, you know, well, yeah, like this is what you say, and this is, I sort of understand that but at the same time, like I'm still going to live my life and I don't want to be impacted by having to sacrifice all this time and energy into doing those treatments.
And I think at the time, you may not notice all the negative side effects because you don't know otherwise. And feeling ordinary pretty much all the time sort of doesn't give you a lot of motivation to sort of keep on top of those treatments. Especially if you're not, like, you're taking, you get prescribed another thing that you've got to take, another thing, and it just adds to that list, but you're not really feeling the positive effects of it, you tend to sort of lose motivation to maybe keep on top of it. So yeah,
