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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, that’s sort of where I came from on my journey, or ongoing journey. But yeah, that’s, that’s about where I, where I sort of stand with it. 

Deidre: Yeah, so it just sounds like there’s, you’re getting a lot of information about things that you should be doing and what you should be doing and it takes up a lot of time and not necessarily seeing how that translates into anything tangential, or that you’re not seeing that outcome straightaway. 

Alex: Well, that yeah, that exactly. And also, I mean, what you’ve also got to have, like the expectations of what someone without cystic fibrosis might be going through at that time of their life. Like in teenagers and early 20s a lot of things are changing without the added complication of having to manage a chronic health condition. So I think all of those things considered it sort of tends to get overlooked. But that’s, I mean, I guess that’s why we talk about these thing., 

Deidre: So there’s a lot going on in terms of just trying to, trying to maintain a normal life, normal bracketed. I don’t even really know what that means. But you’re trying to keep up with your friends and do all that stuff plus your CF treatment. So what was, was there a turning point that prompted you to go actually, no, I need to have like a routine or a structure or I need to do my treatments like what did that look like for you? 

Alex: I mean, I sort of got to it pretty late, like I was in my 20s when I like really started to get things turning around. But I guess the biggest catalyst for that would be 2017 when I met my fantastic partner and now fiance Dale, and basically she sort of helped. I just remember going back to like when we first started like living or not living together but we were first like dating and staying over at each other’s places and like in my normal life would just be like coughing in bed and having coughing fits until I’d throw up. And she’d just be like, trying to like sleep but still rubbing my back and it was yeah, I probably wasn’t in a great place with just general–like my nose was, that was the start of my sort of nose problems. And I was, you know, I was drinking excessively to sort of help with like the insomnia and the pain and yeah, just not sleeping well, not taking care of myself or not doing my treatments, all of the coughing.  

But I guess her support and care to help to put into perspective that if I’m going to spend my life and share it with someone, I need to stop just thinking about like myself and my attitude of like, oh, well, I’m here for a good time, not a long time, and start thinking more about us as a family, especially like if we’re going to have a child together, or children together. I think that’s like, that sort of really helped me put into perspective that it’s not just about me, and not just about my health, it’s about like, my decisions also impact others. And I think that was sort of, the thing that sort of kicked me into gear to say like, alright, something needs to change about this now. Like I can’t, I can’t continue to, to keep going like this and expect the results to turn out well in my favour. 

 

Short music break 

  

Deidre: So what kind of steps, to go from where you were, and then you’ve got a partner and you’re realising, okay, it’s not just about me anymore. There’s someone else involved. And you’re looking at that bigger picture and long term. So that sounds like that was a shift as well. But what kind of steps did you take to then kind of turn it around for yourself, Alex? 

Alex: I mean, I just broke it into baby steps. That’s really the only way I could sort of see doing it. Like my biggest problem, probably, for me was like physio and airway clearance treatments and doing them every day. I got really slack with them. Yeah, when I was not really taking care of myself that well, and would be doing them maybe like once or twice a week. And then also counteracting that with a lot of alcohol and not yeah, not, maybe missing some medication as well.  

But breaking it down into just little steps, saying alright, this week, I’m going to do my physio every single day, and then starting to just put one foot in front of the other and building up a bit of momentum to sort of help get you into that routine of that like, you’re expecting yourself to do it every day.  

I mean, I noticed immediately how much better I could sleep when the coughing fits  stopped. So that was a huge motivator for me to keep going and say, well, like oh, yeah, you know what, maybe those physio therapists that have been nagging me to do my physio, my entire life, maybe they actually had something on that. And I thought, yeah, well, I guess at the time, like I couldn’t be told, but now I’m sort of ready in myself to listen. 

Deidre:  More receptive, we say more receptive. Yeah. 

Alex: Yeah, that’s, that’s probably a better adjective to describe it. But yeah building myself routine, as well, like, I got a full time job with regular hours. So that was, I mean, for the first time in my life, that’s only been a couple of years ago. I’ve noticed that that helps a lot, just by being able to say like, well, I have to leave at this time. So before then, I’ve got to do this, this and this. And then when I get home, I’ve got this, this and this. During the day, I’ve obviously got the things that I’ve got to do then, but it was more just those big blocks, like those morning routines of like doing a big regiment of either physio or medication, or sinus rinses, or both, or any–all the combinations of those.  

And I think another big thing is just to let–allow yourself to make mistakes. There are some times where I forget to do something, but it’s about just picking yourself up and getting back to it instead of letting it spiral out of control until it becomes unmanageable. And I think that’s a big thing as well, especially if you have something heavy, or something big dropped on you, like I remember, probably I was probably 17 or 18 when I got cystic fibrosis related diabetes and had to be insulin dependent. And that whole thing is like another whole chronic condition to manage like finger pricks and insulin and eating and getting the–and also trying to balance that with a high carb diet versus something that you need, like you need to have low GI carbs and trying to do all that was really hard to manage as far as that on top of the thing that I was already doing. And I wasn’t in a good headspace to be doing that.  

So I think allowing myself to be like you know what, I’m going to forget some things and that’s fine. Like the important thing is just like each day is working to be better than the last one and making sure that you just–you keep on and you just keep going with it. And it’s not something that just gets overwhelming or when it does. You can talk to someone, to help it get back on track. 

Deidre: Yeah, perfect. And you’ve got the support from say, people in your clinic team as well. So if you do have any questions, they’re always there and available. But it sounds just in terms of CFRD and adding that to the mix. But you had that structure and the routine happening and you had a motivation. And you were almost like, you’re forward moving now in terms of your planning rather than that, early on that that shift of live day to day. 

Alex: Yeah. I mean, I, especially with the diabetes thing, there was a big chunk of my life, like one of my best mates, Alex would say, would just joke just like, you’re the worst diabetic ever, like, you don’t, you’re not testing, like when was the last time you tested your sugars? I couldn’t tell you. It got, it got to the point where I was just like, out of sight out of mind. But I think with, that was sort of pre 2017, pre meeting my partner and everything, but it’s, now it’s definitely at a point where I mean, I just sort of thought like alright, now I’ve, that this is something that I’ve got to deal with, I can’t keep putting this off anymore, it’s time to start to tackle this.  

I mean, it’s also made a lot easier with the, like librelink sensors that you put in your arm, and then you just scan it with your phone. Like that’s made my life 100 times easier and talking to you, I mean, CF New South Wales and CF Australia’s been super helpful with being able to point me in the direction of finding resources that might be able to make my healthcare treatments more manageable and easier, and you guys have been fantastic with doing that. So thank you again for that.  

Deidre: Oh, thanks, Alex.  

Alex: Yeah, it’s, yeah, it’s just about keeping on top of it and maintaining, like, just breaking it down and allowing things to if it doesn’t work out that well, it’s gonna be alright. 

Deidre: Yeah, absolutely. And there’s, I like to believe that there’s a workaround solution for most things and it’s just expanding the resources that you have available to. So it can seem all consuming if you’re trying to get through something in isolation and on your own. But just to know that there is support and resources available.  

Alex: Yeah. 

Deidre: Yeah. So it’s always helpful to chat to the clinic team, and then they might be able to link you in with things that you didn’t necessarily know were available. 

  

Short music break 

  

Deidre: So looking back on all of that, are you glad that you switched gears that you changed, and became more invested in your day to day routine, and your treatments? 

Alex: I mean, definitely, like, I think a big part of it comes down to maturing as a person as well. And to see what the bigger picture of what really is important. Like, if we look back to some of the decisions, or some of the things that we thought were big deals, maybe when we were younger, they don’t seem so big anymore. And that, I mean that’s through all, all areas of life, it’s not as if you have to reach a certain age to do that. Like a problem when you ar 10 might not be a problem anymore when you’re 15. A problem when you’re 20 might not be a problem when you’re 15 anymore.  

So I think with maturing and with doing all that it sort of helps it, for that to sort of come a bit more naturally. But I think putting the effort in is definitely a big part of it. I mean, I continue to live life doing the things that I love. And still taking that attitude, but just adding a more proactive rather than reactive approach to managing my CF. That’s just made a lot easier.  

Not, I mean, not to say that I don’t have my struggles, like, especially with like pain management, but just with the whole sinus side of CF treatments that I sort of never really knew existed up until probably two or three years ago. And the new challenges that they bring with managing pain and managing that sort of thing. But I mean, that’s a whole, whole other topic.  

Deidre: Yeah, it will be.  

Alex: I mean, it’s just, I know it’s sort of can get, it can get overwhelming just adding layers and layers of new things that you’ve just then got to take on board and managing the expectation from sort of people around you is it like, well, this is what you need to do now and well, this isn’t really what I want to do. But coming to terms and sort of yeah as I said like earlier, breaking it down into smaller bits that you can easily start to chip away at so it doesn’t seem like this huge task. 

Deidre: Yeah, it’s not all consuming if you can break it down into just okay, what can I do today, and this is, this is the time I’ve got and where I’m able to invest my energy because if we look at all the potential things that we have to do, it can get a little bit overwhelming. 

Alex: Yeah, I mean, like, it’s not bad as well to have those days or those, those periods of time where you don’t make, like you’re overwhelmed or you don’t know what you’re doing is completely normal. I’ve found like this, I mean– 

Deidre: It’s human. 

Alex: You can carry the weight as long as you can, but sometimes you just need a rest. And I mean, it’s not exactly like we get one. So I mean if it comes in the form of you might get down or depressed or you might cry or you know, you might like you might just want to lay in bed all day, but I mean, like to carry around that level of like, that– 

Deidre: Expectations is what I’m hearing. Yeah. 

Alex: And that idea, that expectation is, is overwhelming. And it’s, it’s not, it’s not uncommon for, I think for people to sort of break, not break down, but sort of need a, need a minute, need a minute to sort of regroup and then sort of say, All right, get back up. Let’s keep going. But it’s I mean, just to, to fall down is completely normal and it’s not something that you should think like, oh, this happened and now I’ve got, I’m going to give up or I’m going to be like– 

Deidre: You can’t have those moments where it’s, you’re not allowed to just say, You know what, this is a bit much, because you just, you’re, the expectation from yourself in terms of your body, the expectation from others, from family, from friends, from clinic, you know, to always be doing your best.  

Alex: Yeah.  

Deidre: That’s that’s what I’m hearing like that that can I imagine–It’s okay to press pause. And it’s okay to say, you know what, I’m not coping and I need help, or just give me a minute to just regroup. And it’s a lot. It’s a lot.  

Alex: Yeah.  

Deidre: So if you were to say sit young Alex down next to what would you say? Do you have any advice in terms of looking back with what you’ve been through over the years? Is there anything that you would like to tell young Alex. 

Alex: I mean, probably do your physio, that would be the first one. But no I mean, I’m, I’m a strong believer that you sort of have to be ready to do something within yourself for something, for something as intrinsic as managing CF. Having someone you can trust and confide in who can pick you up when you’re down, lend a shoulder to cry on every now and then has really helped me.  

Deidre: Yeah.  

Alex: And Dale has been fantastic for being supportive and being very caring in that aspect, in that regard. But I mean, I would, 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 sort of, it’s about sort of manage, it’s about I think more balancing those things like, yeah, go and go and do those things that you want to do with your friends, it may not be the best thing for your health. But at the same time, it’s sort of more I think, in my development, it’s sort of learnt, well, maybe just have more of a balance of that, instead of being like, off the rails like I’m doing whatever I want to, you can still do what you want. But just make sure that like, you can still find time to focus on your treatments.  

But I think yeah, I’ve have, yeah, haven’t made, I’ve made some good decisions, and some bad, but I wouldn’t change many of, any of them really, because I’m, I’m pretty happy with where it’s sort of gotten me to help me learn what’s important and how I need to treat my cystic fibrosis and other conditions going forward. Yeah so don’t lose sight of what’s important. Just I mean, learn to balance your healthcare with living the life that you want, I think, 

Deidre: Yeah. And as you said, you wouldn’t be where you are, if you hadn’t had that, those experiences. They’ve got you to where you are. And you’re at a point of reflection and awareness. And yeah, I think that’s very good advice. 

  

Short music break 

  

Deidre: Any other words of wisdom or anything that you’d like to share with us today while we’ve got your time on our little podcast? 

Alex: Nothing pre-planned, I guess. But I guess just have, try and make the most of, make the most of the situation you’ve got. I mean, we’ve all been, haven’t been dealt the best hand in life. But it’s not really about how, what the cards you get, it’s how you play them. So I guess just try and make the most of the situation. It might not look the best or it might not be the best right now. Or it might not, you might not have someone that you can sort of help share it with. But I mean, just keep going and try and make the best of the situations is pretty much all we’ve got that we can go off.  

Deidre: We’re really grateful for your advice and sharing your time around that, Alex. So I just want to, on behalf of all our listeners, say thank you.  

Alex: No worries. 

Deidre: Hopefully we’ll have you on for another podcast. Alex.  

Alex: Sounds good.  

Deidre: Fantastic. Well, thank you so much for your time today, Alex and if anyone listening to this would like to share their experiences and stories, please contact your local CF organisation or contact us directly and we will be back with another podcast soon. Thanks, Alex. 

Alex: Thanks. Bye  

Deidre: Bye. 

  

Voiceover 

Thanks for listening to this episode of the CF strong podcast. Make sure you subscribe on your favourite 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 us a review. It helps other people find CFStrong, or share us with your friends.  

Also, a quick reminder that the views expressed in the CFStrong podcast may not be reflective of Cystic Fibrosis Community Cares 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 and was produced by CF Community Care and CF Western Australia. Our theme music is Spark of Inspiration by Shane Iver’s from Silverman Sound. Thanks for listening, and we’ll talk to you next time. 

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