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For a long time, Alex pushed his CF treatments to the backseat. Here, he discusses how he used to approach his health care, what helped him get to a point where he wanted to change and how he approached switching gears and taking a proactive approach to managing his CF. 

Image is a man standing in a lake with his back to the camera. He holds a fishing rod and wears a cream coloured short and hat. In the background, a row of trees line the bank.

My name is Alex. I’m 27 years old and living in Sydney with cystic fibrosis. 

I’m not the greatest, well haven’t been the greatest in my past, with managing 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.  

My general attitude towards the healthcare and treatment side of CF was sort of that I wasn’t going to let it stop me doing anything. But at the same time, I sort of wouldn’t give it the time or respect that it probably deserved.  

With everyone sort of telling you, like physios and doctors and specialists telling you every time like this is what you need to be doing, you sort of, as a teenager and especially in my early 20s, I sort of thought well, this is what you say. And I sort of understand that but at the same time, 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.  

 

On putting CF treatments on the backseat 

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 get prescribed another thing that you’ve got to take. And it just adds to that list. But you’re not really feeling the positive effects of it. So you tend to sort of lose motivation to maybe keep on top of it. That’s sort of where I came from on my journey, or ongoing journey.  

And also, you’ve also got to have the expectations of what someone without cystic fibrosis might be going through at that time of their life. Like in your teenager years 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 why we talk about these things. 

  

The turning point 

I sort of got to it pretty late. I was in my 20s when I really started to get things turning around. But I guess the biggest catalyst for that would be in 2017, when I met my fantastic partner and now fiancé Dale, and basically she sort of helped.  

I just remember going back to when we first started living or not living together but we were first dating and staying over at each other’s places and in my normal life I would just be coughing in bed and having coughing fits until I’d throw up. And she’d just be like, trying to sleep but still rubbing my back. I probably wasn’t in a great place. 

That was the start of my sort of nose problems. And I was drinking excessively to sort of help with the insomnia and the pain and just not sleeping well. Not taking care of myself or not doing my treatments, all of the coughing.  

Her support and care to help put into perspective that if I’m going to spend my life and share it with someone, I need to stop just thinking about 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 if we’re going to have a child together, or children together.  

I think 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 my decisions also impact others. And I think that was sort of the thing that kicked me into gear to say alright, something needs to change about this now. I can’t continue to keep going like this and expect the results to turn out well in my favour. 

"I've made some good decisions, and some bad, but I wouldn't change any of them really. Because I'm pretty happy with where it's gotten me to help me learn what's important and how I need to treat my cystic fibrosis and other conditions going forward. So don't lose sight of what's important. Just learn to balance your healthcare with living the life that you want."

Alex

On taking the steps to turn things around 

I just broke it into baby steps. That’s really the only way I could sort of see doing it. My biggest problem was physio and airway clearance treatments and doing them every day. I got really slack with them when I was not really taking care of myself that well and would be doing them maybe once or twice a week. And then also counteracting that with a lot of alcohol and 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, you’re expecting yourself to do it every day.  

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, you know what, maybe those physiotherapists that have been nagging me to do my physio my entire life, maybe they actually had something on that’. I guess at the time, I couldn’t be told. But now I’m sort of ready in myself to listen. 

Building myself a routine, as well. I got a full-time job with regular hours. 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.  

  

On making room for mistakes 

Another big thing is just to allow yourself to make mistakes. There are sometimes 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.  

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 each day working to be better than the last one and making sure that 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. 

  

On what a difference investing in a daily routine and regular CF treatments has had 

I think a big part of it comes down to maturing as a person as well. And to see the bigger picture of what really is important. 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.  

Not to say that I don’t have my struggles, especially with pain management. 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 other topic.  

I know it sort of 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 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 breaking it down into smaller bits that you can easily start to chip away at so it doesn’t seem like this huge task. 

On letting yourself take the rest you need 

It’s not bad as well to have those days or those periods of time where you’re overwhelmed, or you don’t know what you’re doing. [It’s] completely normal.  

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 might just want to lay in bed all day. To carry around that level of and that idea, that expectation is overwhelming.  

It’s not uncommon for, I think, for people to sort of break, not break down, but sort of need a minute to sort of regroup and then sort of say: ‘All right, get back up. Let’s keep going’.  

  

Advice for young Alex 

Probably do your physio. That would be the first one. But I’m a strong believer that you sort of have to be ready to do something within yourself 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. And Dale has been fantastic for being supportive and being very caring in that aspect, in that regard.  

You can wrap yourself in cotton wool and just do all the treatments and live 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 like, yeah, 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 learning, 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 you can still find time to focus on your treatments.  

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

This story was published in March 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our readers.