Travelling allows me to be more than just ‘the girl who’s always in hospital’

Can you tell us a bit about your journey with CF?

I was diagnosed with CF at birth. I have two older siblings, and my eldest sister also has CF. I suffered from meconium ileus at birth and ended up being rushed in for abdominal surgery at 12 hours old. I had my bowels reconstructed, parts removed, a temporary stoma bag and I was placed in intensive care.

I was relatively healthy until I reached around 11; that’s when my lung health started to decline and I ended up being in a routine of three weeks in hospital and three weeks out, up until I was 15. I stopped going to school and started to get home schooled. In all honesty, I just thought this was going to be my normality forever. 

In 2017, at 15, I had an episode of DIOS – which was routine for me. However, this time it didn’t resolve like it usually does and I ended up in excruciating pain and in surgery. My bowels perforated, again. The surgery that was supposed to be two hours turned into 12 hours – my surgeon admitted that he had no idea what else to do and eventually after 12 hours just sewed me up and told my family to say their goodbyes. 

I was placed in a coma and then everyone did what he asked; they came to be by my side in case the worst was to happen – my lifelong doctors and nurses all rallied round to support my family, friends and each other. 

I eventually woke from my coma none the wiser of how distraught everyone was or what had happened. The first thing I asked for was a Wagon Wheel and why my dad was crying – looking back now, how iconic! I honestly believe my humor is what kept me sane. 
 
My life changed after this, I ended up being fitted with a feeding tube. I would be in rehab for basically my whole life, due to how much effort it’s going to take to keep my bowels working and prevent DIOS as best as I can. 

It’s now been eight years, and I take daily intense laxatives just to make my bowels work. I will be on a 6+ hour laxative pump overnight, every night for the rest of my life but at least I’m alive! 

When did you first start travelling and what inspired you to explore the world? 

I’d been on holiday throughout my life with family, but it was always really the same two places. Once I reached 18, I started going on trips to different places with friends and partners. I started with beach holidays and soon realised I’m not a "sit and do nothing" type of girl. I found my love for city breaks and more interesting trips to places like Poland (a favourite of mine), Amsterdam, Italy, Paris and Iceland. But I knew I wanted more.  

"Where is my next trip going to be?" was all I thought about. I decided to bite the bullet and do a big trip – South East Asia. I travelled around Thailand for just over four weeks and visited seven different places. It was hectic but it lit a fire under me. I just knew this was going to be the beginning of a lifelong dream to see the world. 

How do you prepare for a trip with your CF in mind? 

Depending on the length of the trip, it comes with a lot of liaising with my CF team, particularly around medication. I make sure I know exactly how long I plan on being away and then I calculate exactly how much medication I need. 

I ensure that I request a supporting fit-to-fly letter from my medical team which states all my medication and explains about my CF. I also translate the letter into the language of the country I am travelling. I’ve never had to show this to anybody, but it just makes me feel more prepared.  

What are some of the biggest challenges you face when travelling with CF? 

For me – and this doesn’t apply to everyone with CF – I have a lot of visible scarring and a feeding tube so I do get some funny glances or horrible reactions when I am going about my day. But the amount of kind or genuinely inquisitive interactions I’ve had makes up for the not-so-nice ones. I also struggle with making sure to stay hydrated, especially in hot countries but electrolytes are my go-to! 

How do you manage your treatments and medication? 

I rely heavily on a dosette box for my tablets and it’s part of my Sunday ritual to sit and make sure it’s filled for the week. I also make sure that I have enough water to mix my powder medication with as soon as I check into my accommodation. I carry carabiner clips so that I can use them as a hook for my medicine pump and can clip it to anything elevated above my head. 

Do you have any memorable travel stories that you think captures your experience?

I was once in the middle of the jungle in Chiang Mai, staying in an open bamboo hut, completely off grid with my medicine pump hanging from the top of our hut on a clothes hanger. I was sat watching a group of elephants have a bath in the river below. It was true magic. 

What has been your favourite travel destination so far and why? 

It’s got to be Thailand. I think I loved that I felt so entirely free and myself. It was refreshing to not know anybody and to be able to be completely authentic. 

The people are so friendly and the food was incredible. I didn’t know peace and chaos could align so perfectly together like I did when I was travelling Thailand.  

What do you love most about travelling? 

The freedom. The fact I get to be more than just "the girl who’s always in hospital". Travelling is an extreme luxury and I am super grateful I can go and see as much of the world as I can. 

What advice would you give to another young person with CF who wants to travel? 

Cliché but just do it! Plan your trip and write out where you want to go and how long for. Research the nearest hospitals, so if you need medical attention, you know exactly where to go and you don’t need to try and figure it out if you’re unwell.  

Be safe, be smart, hydrate, and just fall in love with being unapologetically yourself!

How has travelling impacted your outlook on living with CF? 

I had a big moment where I felt like although I had been dealt the ‘CF’ card and I’d had a series of unfortunate events throughout my 22 years, I was one of the luckiest people in the world because I was getting to fulfil a dream of mine. 

I should be dead but instead I am here on the other side of the world witnessing some of the most beautiful things I’ve ever seen and at such a young age. 

I have never let CF stop me from doing anything, but travelling has only made me want to prove that goal 10 times more. I want to show others with any form of disability, not just CF, that anything is possible if you really want it. 

If you are thinking of going travelling, please speak to your CF team for advice.

You can find more information on travelling with CF here.