Home Health 5 Years of Beating Cystic Fibrosis

5 Years of Beating Cystic Fibrosis

by Paul
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cystic fibrosis cycle across europe

“But if you’re up there who’s going to take care of you?” That was the response from my doctor the last time I left hospital as an inpatient. It was five years ago in Melbourne. I’d just told him I was moving to Broome, a small tropical town in the North West of Australia with no specialist Cystic Fibrosis care. “That’s the point. In Broome I won’t need looking after.” It probably sounded arrogant but it’s what I genuinely believed, and it turned out to be pretty accurate.

It was the middle of winter and I’d just spent 2 weeks receiving IV antibiotics. A pretty routine experience for someone with Cystic Fibrosis, and one that I’d been through maybe 6 or 7 times before. But this time I’d blown my lowest ever FEV1 (the main indicator of lung health), and I was scared. They say that with CF the lung function should decline by about 1-2% per year. Until that point I’d been stable for about a decade, but this time I was down nearly 10%.

Unwilling (as I always will be) to accept that this was just the natural progression of my disease, I decided that something had to change. So I quit my job and I moved to Broome. 5 years, zero hospital stays and a 20% increase in lung function later, I’m confident I made the right call.

Over time I’ve realised that Melbourne itself wasn’t the problem. It was more the other changes that came along as a result of new circumstances. 

So, with the benefit of hindsight, I made a list. These are the 5 things I believe had the greatest positive impact on my health over the past 5 years:

  • Exercise
  • Avoiding winter
  • Getting a lot of fresh/salty air
  • Having passion and ambition (outside of CF)
  • Being Busy

I’ll elaborate a little:

Exercise

Cystic fibrosis cycle across europe

Promoting exercise as a way of dealing with Cystic Fibrosis was the main motivation for my cycle across Europe in 2016. I cycled 4,000km solo through 11 countries in 6 weeks. My health has never been better.

 

Exercise was always the go-to for me, so this isn’t a recent development. I attribute my good health growing up to the fact that I was a very active kid (among other things). But there have been times when I’ve slumped and my motivation levels have flatlined. In Melbourne I was working late nights in bar. The work was fun but my exercise routine and sleep patterns were all over the place, or non-existent. I’ve always enjoyed working out or running in the evenings, but this wasn’t possible with my work hours. And after working late I was hardly motivated to get up and do anything early the next day. 

So I made the simple decision that I wouldn’t work nights anymore. My routine may not be perfect and I’m not always consistent, but I seem to have that base level of muscle memory. Especially when it comes to running. If I feel that I’m coming down with a chest infection, my first instinct isn’t to visit the doctor or down a load of antibiotics. My first instinct is to put on my worn out Nike’s and head out the door. Sometimes it’s incredibly hard and I come up with plenty of excuses to avoid it. But, ultimately, I know it’s what I’m going to do. What I have to do. And I’m never more motivated and pumped than when I’ve just smashed out a run I didn’t want to start in the first place. Not to mention how much better it makes me feel physically.

 

Avoiding Winter

 

Cystic Fibrosis winter in germany

 

Until the start of the year I would have put this one right at the top of the list. I attributed a lot more of my good health to warm weather than I would now (I’ve just endured my coldest winter ever here in Germany without a single issue). Before this European winter my last winter was 2013 – in Melbourne.

Looking back, though, all but one of my previous hospital stays were in winter. It doesn’t take a genius to connect the dots there. Undoubtably I feel more energised in the warmer months, and sunny days are far better at seducing me into outdoor activities. Also, being outdoors more has the additional bonus of reducing your exposure to the bugs that other people carry.

In future I won’t head into winter with the same sense of dread, but I will still avoid it completely if possible. At the very least I plan on settling down somewhere where winter is a bit less wintery.

 

Fresh Salty Air

 

5 years of beating cystic fibrosis

 

I first visited Broome in 2011. I remember it well because before arriving I’d been feeling sick. So sick that I was thinking I’d probably need to fly straight to Perth for a hospital visit. But, no exaggeration, the day I arrived – a full day of beach, sun and fresh salty air – I felt amazing. Maybe it was coincidental, but that effect was permanently etched into my mind. So, naturally, Broome was my first choice when it came to escaping the Melbourne winter. I lived there over the winters (Broome has no real winter) for the following few years, before staying permanently until 2017.

Warm weather aside, there’s a lot to be said for the healing properties of the beach and it’s salty air. Maybe it’s a personal thing – I almost feel some kind of claustrophobia inland or in a big city – but the wide open spaces and the fresh breeze at the beach give me an ability to breathe and think clearly. Then there’s also the medically proven ability of salty air to clear the lungs. In that sense, I was extremely lucky to have a job that required me to be at the beach 6 afternoons per week.

In future, I want to live as close to a beach as possible. But it doesn’t have to be a beach. Even here in Heidelberg, I find that just going outside to walk around for an hour, or even riding my bike to work both have a huge positive impact.

 

Passion and Ambition (Outside of Cystic Fibrosis)

 

5 years of beating cystic fibrosis tenerife

Over the past few years I’ve found passion in photography and combining that with travel.

 

These last two are the big ones, because I firmly believe that good physical health starts in the mind. This is why, even when I was getting the first three right, it sometimes didn’t all come together.

Until the previous few years I’d been very unsure of what I wanted to do with my life. It’s not that I didn’t have any ambition at all, I just didn’t know where to direct it. I spread it around aimlessly and changed my mind on a daily basis.

While working in Sydney I developed a passion for the work I was doing as a Barista. I wanted to learn everything I could, and I wanted to be good at it. Eventually I found that I actually cared about my job and, get this, some days I actually looked forward to it! I’d genuinely not experienced that before.

Then, when I returned to Broome I got lucky with a job photographing camels on Cable Beach. I rediscovered my love for photography and I started to devote a lot of my spare time to it as well. Photography is now a massive motivator and distraction for me. And not just while I’m out there doing it; mind space that used to be set aside for worrying and stressing is now used up dreaming about the places I want to go and the things I want to photograph.

When I had nothing to aim for it was a lot easier to get caught up in thoughts about my health, and I have no doubt that those thoughts physically affected me.

Now on any given day I spend very little time, if any, thinking about Cystic Fibrosis.

 

Being Busy

 

5 years of beating cystic fibrosis cable beach

Working a lot seems to have contributed to my good health. I guess it helps to have a job you love.

 

During the peak seasons in Broome I was working 60-70 hours per week over two jobs. In my spare time I’d be out taking photos, at home editing photos, or out running. I never felt sick. Before I left New Zealand I was working maybe 20 hours per week and I felt sick all the time. It sounds counterintuitive, and a balance needs to be found, but in my experience being constantly on the move seems to help my body stay on top of any potential infections. Being busy also I means I don’t have time to sit around and feel sorry for myself. An obvious mental advantage.

When I moved to Australia I made a point of never telling my employers (and I had many…) that I had Cystic Fibrosis, because I didn’t want the option of using that as an excuse. Also, in Australia I always had casual jobs. This meant that I didn’t get paid for sick days and I could be fired without notice. So being sick wasn’t an option.

It’s not that I have to be working all the time. But having anything else to focus on and distract me just seems to help a lot, and it’s in the down time that I often don’t feel my best.

 

Find Out What Works For You

I often find that there’s a sense of inevitability within the Cystic Fibrosis bubble. I know I’m in a relatively privileged position, though I won’t say lucky. Lucky is being born without CF, or any illness at all. I still have my stuff to deal with. I just realise that for many people Cystic Fibrosis was a dominant force in their lives from a very young age. But I still think we have the ability to dictate terms to Cystic Fibrosis more than we are led to believe.

During my first ever hospital stay (as a 12 year old) a nurse said to me “Oh, this is your first stay? I guess we’ll be seeing you more regularly from now on. You’ll also need a Portacath soon.” I had no idea what a Portacath was and I haven’t needed one to this day.

This is what I mean by inevitability. There was no malice in what that nurse said, just failure to consider that I could go on to have a normal life. Comments like that can instil such unnecessary negativity, and for what possible benefit? It was based on previous experience and education I’m sure, but there’s no hope, or faith, or imagination – whatever you want to call it. Not to mention encouragement. It’s the same as a doctor once explaining to me that my lung function could never improve, while showing me a graph of my lung function improving. And why, when I explained that in Broome I wouldn’t need taking care of, the doctor in Melbourne thought I was a fool.

This is by no means an anti-doctor post. I have full respect for the medical community and I’ve had a great relationship with most of my doctors. I still pop handfuls of pills on a daily basis and I can’t deny the positive effects of Hypertonic Saline. But I don’t think there’s a ‘one size fits all’ solution to CF. You’ve gotta take what you can from doctors and medicine, but work out your own way of dealing with it too.

26 comments

Nancy August 31, 2018 - 8:51 pm

Such a powerful, eloquent narrative! Your transparency and hope are inspirational.

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Paul September 3, 2018 - 11:17 am

Thanks a lot Nancy!

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Wendy August 31, 2018 - 9:25 pm

YAY!

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Helen Franklin August 31, 2018 - 9:42 pm

Thank you Paul for giving us a look into your life, truly inspirational, telling it like it is. I remember being in St A’s Te Puke Ladies group with Liz, your Mum, and meeting you, Liz explaining your condition, first time I’d ever heard of it, & the faith she had in Jesus’ Healing. You stand here today, testimony to that ! All praise to Him, and to your beautiful Mum 🌟💜✨

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Paul September 3, 2018 - 11:18 am

You’re welcome, Helen! Mum never gave up hope and I think that had a huge positive impact on my health and attitude too!

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Beth August 31, 2018 - 10:27 pm

amazing Paul! Inspiring. I didn’t even know you were fighting CF. Thanks for sharing your story. It’s encouraging xx

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Kristie September 1, 2018 - 12:03 am

You are a reue fighter, as most of us are with cf.makes you stronger in a way.i have followed and read lots about you,as heard from tour dad .
But reading this is so so true and tou wrote it amazingly and have made the best decision ever .i did something similar but not escape the winter thing which i think is a hige thing.any way completly loved reading about you and what changes and decisions you made .good on you ,legend x

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Paul September 3, 2018 - 11:20 am

I think thats very true Kristie, you have to develop a certain kind of strength! And thanks for reading! Means a lot to get feedback like that from someone who understands what it’s all about!

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Andy September 1, 2018 - 1:08 am

And for years we didn’t even know. Amazing how you challenge yourself Paul and for that alone (well maybe a few other things) we are glad we had you here in Broome with us. All those days in the gym in Broome I thought you just enjoyed my company …😋

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Jureen September 1, 2018 - 3:39 am

Wow! So awesome to see you excelling at life Paul! Keep up the great stuff you are doing.

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Jocelyn Rubin September 1, 2018 - 4:28 am

I’m glad you didn’t let physical limits keep you caged up and that your mentality set you free to do things many people so quickly assumed you couldn’t without even letting you try. Now here you are with beautiful photographs! Thank you for sharing your story. You’re an inspiration.

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Amanda September 1, 2018 - 5:46 am

Hiya Paul, it was great meeting you in Broome. Funny how we had so many mutual friends before we had finally actually met and hearing so much about each other before hand. The commonality, Cystic Fibrosis. Broome is a great place to be with CF as for the reasons you mentioned. After living in the Kimberley region for 15+ years now I finally have my CF team convinced of this.
Well done you for going and following your dream. That’s what life is all about. 🌹

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Cindy September 1, 2018 - 5:57 am

True that Paul. I was in Broome for 12 years -mostly healthy with CF. The wet seasons and breakins got o me but I’ll never regret my time there.
Also, the beach is inportant! Salt air, a certain peace.
Thanks for the reminder to do hypertonic and exercise.
Carry on. Good job.

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Karen De Lore September 1, 2018 - 3:29 pm

Wonderful writing Paul – I have so much respect for your steady drive to challenge yourself !!!

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Paul September 7, 2018 - 9:25 pm

Thanks Karen, couldn’t do it without all the support from people like yourself!

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Ainslie jones September 2, 2018 - 2:09 pm

That is humbling ,words just can’t express .some people live life – some people exist .Go on living mate ,bloody brilliant ,and thankyou .

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Paul September 7, 2018 - 9:24 pm

Thank you Ainslie! So glad you liked the blog, and you’re welcome 🙂

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Anne Wright September 3, 2018 - 2:40 am

Awesome reading Paul. Anne Wright (Liam’s Mum)

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Paul September 7, 2018 - 9:23 pm

Hi Anne, thanks so much! Appreciate all the positive feedback 🙂

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Leigh September 5, 2018 - 12:58 am

Amazing read Paulie!! And very inspiring!! Full respect cousin xx

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Leigh Taiaroa September 5, 2018 - 1:17 am

Amazing read Paulie!! and very inspiring!! I have mad respect for you cousin!!

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Paul September 7, 2018 - 9:20 pm

Hey, Leigh! Thanks a lot 🙂 Hope I get to see you guys soon!

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Amanda September 9, 2018 - 9:32 am

As the mum to a beautiful two year old with CF, this article was one of the first I have read that actually left me smiling, and not welling up. Your positivity is infectious and gives me hope that my daughter will also be able to write her own destiny and not be limited by her diagnosis. May your passion continue to drive you and inspire others! X

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Paul September 9, 2018 - 12:11 pm

Thank you so much for your comment, Amanda! Honestly, it’s comments like this that mean more to me than anything else. I think a positive attitude is one of the biggest assets you can possess when fighting something like CF! All the best to you and your daughter 🙂

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Wendy Featherstone September 9, 2018 - 10:22 am

Such a positive read. Keep on keeping on. Thank you for sharing.

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Paul September 9, 2018 - 12:09 pm

Thank you Wendy, Im so glad you liked the story – and you’re welcome!

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