Travel is an important part of my life. It gets me up in the morning, it helps me live life to the fullest and (I like to think), it makes me an interesting person. I couldn’t ever imagine not travelling or letting anything get in the way of that. That said, I’m not sure how I would feel if I was diagnosed with a life changing disease. Yet, this is exactly what happened to this week’s guest writer.
Say Hello to Sarah…
Say hello to Sarah from Travel Breathe Repeat. Diagnosed with a fatal lung disease, did she let this stop her from travelling? No, she did not. Instead, she packed her bags and joined her husband, Justin on various trips and hasn’t stopped travelling since.
Here’s her very humbling and inspiring story…
Never let anything get in the way of your life or travel
“I was staring out over the Vltava River. I had seen Prague Castle before, but never from this perspective, high above the city at Vyšehrad. Though a bit breathless, I had a grin on my face. I was taking it all in with my husband, Justin, by my side, thinking about what it had taken for me to get there. Climbing the 162 steps from the bottom was just the most recent hurdle.
Three days earlier, Justin and I packed up our lives and set off on a trip around the world. Six years earlier, I was diagnosed with a fatal lung disease called lymphangioleiomyomatosis (LAM).
Coping with a devastating diagnosis
I had been struggling with shortness of breath and debilitating fatigue for over a year, so at least we now knew why. I started taking medication that wouldn’t cure me, but would (hopefully) prevent me from getting worse. But if you Googled LAM back then, you’d read that the median life expectancy was eight years. We were devastated.
My doctor encouraged us to keep living life. It was hard, but we quickly discovered that our love of travel helped us cope. Just three months after my diagnosis, we went on vacation to Spain. And even though in Girona we accidentally booked ourselves in a hotel up a gazillion stairs (enemy to anyone with a lung disease), it was just what we needed.
Over the next six years, we travelled to 30 countries together, cherishing every vacation day our jobs allowed.
Our year of travel
For a while, we considered taking a break from our normal lives to travel full-time. With my disease, we knew there could come a time that I wouldn’t be able to fly or travel at the same pace. After years of thinking and talking and planning, we finally did it. We quit our jobs, sublet our apartment, and set out on June 17, 2016 – exactly six years from the date of my diagnosis.
And just three days later, I strapped on my portable oxygen concentrator (which I need to use when I exercise) and climbed to one of the highest points in Prague. I knew we had made the right decision.
Over 13 months, we travelled to 27 countries across the world. We visited new countries we’d only ever dreamed of, like New Zealand and Vietnam, and repeat places we wanted to explore more like Japan and the Netherlands.
Throughout the year, I continued to challenge myself and my body as much as possible. Of course that means something very different to me, someone with a lung disease, than a healthy 37-year-old. A hike meant to take 30 minutes and described as “medium/easy” in Arrowtown, NZ took me an hour and was definitely “hard”! But with the help of supplemental oxygen and the most amazingly, supportive husband (emotionally and physically – he carried my oxygen the last 10 minutes!), I made it to the top.
In addition to the physical challenges, getting myself out in the world – learning and seeing and eating new things – has been extremely helpful in coping with my disease. Having any illness, but especially a rare disease like LAM, can be intensely isolating. I think it’s important for anyone to try and expand their own worldview, but for people with chronic illnesses, it can be therapeutic. That’s one of the reasons we started our blog, Travel Breathe Repeat – to help make travel more accessible to all types of people. We hope it serves both as a resource to anyone looking to travel, and as inspiration to those who may have a chronic illness like me.
This year, we also set out to raise awareness for LAM and strengthen the connections among the international LAM community. In Scotland, Germany, the Netherlands, Australia, and New Zealand, we met women with LAM, leaders of local foundations, and doctors and researchers working on the disease. I even spoke at a conference in Tokyo, Japan! It was amazing to meet all of these people and actually make an impact within the community.
Travel has always brought me so much joy. More recently, it has helped me manage my disease and live my most fulfilled life. I hope my story can serve to help others do the same.”
Sarah Poitras has a rare lung disease called lymphangioleiomyomatosis (LAM) and loves travelling with her husband, Justin. They recently completed a trip around (some of) the world where they ate absurdly well, saw glaciers and fjords and puffins and elephants, and raised LAM awareness. They have been documenting their journey and sharing travel tips for others with chronic illnesses on their blog Travel Breathe Repeat. You can also see more of Sarah’s photography on Instagram.
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Thanks to Sarah for getting involved with my guest posting opportunity. If you have an inspiring story to share, I’d love to hear from you! You can either send your suggestion to me via my Contact page, or by filling out this super quick form.