Why I Love Traveling Despite IPF Complications
I hope I never take my ability to travel for granted. The world is a beautiful place, and despite my diagnosis of idiopathic pulmonary fibrosis (IPF), I intend to see as much of it as possible while I still can. Recently, I spent time on the east coast of Canada. I am experiencing a serious case of “post-vacation blues,” but I am so thankful for the opportunity to spend time in Nova Scotia.
I don’t know where my passion for traveling came from, as I am the only one in my family who likes to fly. From a financial perspective, I could probably invest more money into savings like the more fiscally responsible members of my family. However, I choose to spend my money on traveling while I still can to make memories with faraway friends.
Traveling rejuvenates me and drives me to endure the difficulties of my lethal lung disease. This is especially true if my travel destination is on the coast because I can dip my feet in the ocean, which is my favorite part of the world. There is something magical about the sea, so spending time on the beautiful east coast of Cape Breton with magnificent ocean and lake views has been a year highlight.
Do you also like to travel, despite your PF diagnosis? Share your favorite travel experience in our MS forums.
There are many other reasons I love traveling as a patient with IPF. Here are just a few:
I get time away from the digital world
So many hours of our day are consumed by technology, whether we’re in front of a television, computer screen, tablet, or smartphone. I think we forget how dependent we’ve become on technology. I am guilty of this. When I travel, I intentionally take time away from screens and relish in the company and scenery of wherever I am. At a retreat earlier this year, someone led a meditation session and referenced the “constant assault of technology” that we endure every day. This really resonated with me. Traveling is the only time I don’t feel guilty for taking time away from my phone or computer.
Seeing the beauty of other places
The world is a beautiful place, and traveling allows you to experience that truth firsthand instead of only seeing pictures or hearing stories about other parts of the world. There is nothing quite like seeing one of the Wonders of the World in person, or a highly sought after tourist attraction such as the Cabot Trail, which I drove through last week.
I re-evaluate the way I live
Each time I return home from traveling, I thoroughly examine and re-evaluate how I live my life and why. This is especially true when I return from coastal destinations and wonder why I don’t live near the ocean since it brings me so much happiness. In some ways, I don’t feel at all tied down, so I could just reroute my life and move by the ocean. On the other hand, my access to local healthcare is exceptional. I’m not guaranteed to get that in a different area. That said, I can still re-evaluate the way I live my life in my current area and strive to make it more like what I love about different cities I travel to. Thanks to my east coast adventure, I aspire to focus more on friends and family connections, a less chaotic life, and more time spent on what matters rather than worrying about trivial things.
I spend time with old friends and meet new ones
As someone who forms quick, deep, and meaningful friendships, I thoroughly enjoy meeting people. Traveling enables me to make friends with people from all over the world. I never want to miss out on the opportunity of spending time with both old and new friends who become like family.
I don’t feel like a ‘sick’ patient
I often allow my chronic illness to consume my world. Traveling helps me to feel like a person first and a patient second. Sure, I need accommodations while traveling to be safe, but the simple fact that I can still travel makes me feel less like a patient living with a fatal lung disease and more like a young adult exploring the world. I don’t get many of these moments.
(Courtesy of Charlene Marshall)
Continue this conversation in our PF forums!
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About the Author
Comments
Noah Greenspan
Great piece! Love it and love to travel for many of the same reasons! Keep doing you!
Charlene Marshall
Thank you so much for reading my column and for reaching out, Noah. It is an honour to hear from you and so glad you enjoyed my column! Hope to keep travelling for many more years, and not let IPF define me :) Warm regards, Charlene.
P.T. Ummer Koya
Lot of positive energy enters into my mind after reading this enterprising article. Incredible !
Charlene Marshall
I am so happy to hear this P.T! Thanks so much for reaching out with your positive comments and as always, for reading my column. It gives me great joy to know that others' find my columns helpful, positive, uplifting, etc. If you have a desire to travel, and want to chat more about how to do so safely despite IPF, please don't ever hesitate to reach out. It sure helps me feel alive despite my illness!
Warm regards,
Charlene.
George Connell
Hello Charlene,
Your perspective on travel, oceans reminds me of my interests. I have IPF, 2 years, as I become aware of growing future limitations, the idea of calming my travel itch is becoming preeminent. My travel will be to Ireland and Europe. Is there a source of information that one could learn of the difficulties involved with this type of travel?
Thank you, George Connell
Charlene Marshall
Hi George,
Thanks so much for reading my column and for reaching out via the comments. I always love hearing from others! After I was diagnosed in 2016, my greatest fear was having to stop travelling and I have so much I still want to see. I'm 30 and have been privileged to do a lot of travelling, but I still want to do a lot more as well. Europe is on that list, including Ireland and Italy so I am very jealous of your upcoming travel plans, but in a good way: enjoy every moment :)
Hmm, in terms of travel specifications, it really depends on your lung function and physical condition. Do you use supplemental oxygen yet? If so, there is some concrete information to consider when flying, but in my experience, both my medical team and the airlines have been incredibly supportive in helping me sort this out in advance of my travels. I also take specific precautions to keep me healthy on the plane (ie. wearing a mask and washing my hands often). When do you plan on travelling, is your trip coming up? I am happy to chat with you more specifically about travelling with IPF based on my experience if you'd like? You're welcome to email me: [email protected] if it would be helpful and I'll help as much as I can! I'm excited for you :)
PATRICIA L HAYDEN
Thank you Charlene for this excellent article. You are such a gift.
Charlene Marshall
Hi Patricia,
Thank you so much for your kind words, for reading my column and being part of our forums community. I so appreciate you and echo your sentiments back as well :) Glad you enjoyed my article, and thank you again for your kind words. They were very uplifting to me during a tough day!
Charlene.
John Hyle
You CAN be by the ocean! I live in San Diego and am happy with UCSD care.
Great IPF care exists in San Diego, LA and SF.
Charlene Marshall
Hi John,
Thank you for reading my column and for connecting via the comments. I've heard lots of really positive experiences with IPF-related care in California. So glad to hear you're happy with your treatment at UCSD. I would love to live in California and be oceanside on your beautiful western coast, however, I'd have to change my nationality as I am Canadian. Thanks for your reply though, and if I get a chance to visit, I certainly will! :)
Charlene.
Bruner Kathy
I was diagnosed with IPF 21/2 years ago. I am on Esbriet, & am stable. Will be re-testing in Oct.
As it us our 50th anniversaary, we are going to Ireland on Sat.
I am not on oxygen as in my 6 min. Walk I only go to 91.
Medicare said you have to be 88, before they will pay for it. W
I did rent a machine to go to Colo. and couldn’t have made it without it. My only concern is flying from New Jersey to Ireland. Last year, I had shortness of breath, coughing,
And an oxygen level of 81.
On a flight from Cancun. The PA in the doctors office said the airlines will provide oxygen if you have problems, during the flight. Have you ever heard of this? I called the doctors office and asked if it was okay to fly to Ireland and they said it would.
Charlene Marshall
Hi Kathy,
Thank you so much for getting in touch with me via the comments, and for reading my columns. I'm really glad to hear that your disease is stable, and I will keep my fingers crossed for good results at your upcoming appointments in October.
By now I'd imagine you are already over to Ireland. How was the flight for you? I hope it was manageable for you without supplemental oxygen. I've heard of airlines administering oxygen to patients who need it during flights even if documentation is provided. There is usually a fee associated with this but it is worth it if needed, and I'd imagine all airlines do it but can't confirm. Hope the flight went alright for you and that your travels are going well. I am eager to hear about your wonderful time in Ireland. Happy anniversary!
Charlene.
Sue
As Mark Twain said, "Travel is fatal to prejudice, bigotry, and narrow-mindedness." Since DX in 2012, I have spent 8 months living and traveling overseas. It has been somewhat challenging, but I still want to do more.
The requirement for O2 users who wish to travel long haul is staggeringly expensive and for some prohibitive. We are required to have 150% of the total air travel time in battery life for our O2 concentrator. A concentrator can be rented, but when one stays overseas for 4 months stretches, that is out of the question. So I bought one, plus the needed batteries for long haul flights. Ouch!
Medicare guidelines deny a portable concentrator, unless a patient also has a stand alone concentrator in the home. Go figure. I don't need one, so having a portable is totally up to me.
I fly Delta, and in the last 5 years they have become much less restrictive in the process of people using a concentrator on board. Prior to the flight, I no longer needed a doctors signature on the required paperwork, just a declaration of the kind of concentrator (one acceptable to FFC) and number of batteries and sizes. When boarding, no one verified that I indeed had what I was supposed to have, nor did they want to see the paperwork.
My stay in the EU was at a higher elevation than my 250 foot elevation in the US. Makes a difference in O2 use, so very grateful to have had my concentrator there.
Charlene Marshall
Hi Sue,
Thanks so much for reading my column and for getting in touch via the comments. I always love hearing from other travellers who are committed to continuing their travels despite IPF - glad we share that passion! I use my concentrator every where I go, although I haven't done a long haul flight where I've been required to have that much excess battery life. Wow! What is considered 'long haul' where you're required to do that? The concentrators are expensive, I completely agree but like you said, I couldn't travel as often or as long with a rented one. I protect it like my first-born when I go somewhere, as I'd never want to have to pay for another one. I'm glad Delta has become less restrictive for you travelling with your concentrator, that is positive news (and, as they should be)! Air Canada is still very complicated when it comes to travelling with oxygen, so I avoid flying them and prefer airlines with similar rules to Delta, such as West Jet. If it is FAA approved then I'm not sure why some airlines still put up all the fuss of paperwork, etc.
Glad you're still able to do these trips Sue, and I sure hope you continue to be able to for along time! Thanks again for writing :)
Charlene.
Eileen Lewis
Hi Charlene,
Thanks for this article. I have never been to Nova Scotia so I'm checking it out on the internet. Very interested in the Celtic Festival at Cape Breton next fall. have you ever been? If so, any advice? Also will need a concentrator (other than my portable) when I get there.
Would love to rent a place overlooking the ocean or lake.
Eileen
Charlene Marshall
Hi Eileen,
Thanks so much for writing, it is wonderful to hear from you! How are you doing? I remember you're a passionate traveller just like I am. Nova Scotia is incredible, and be prepared to not want to return home after spending time out there during the summer. The scenery is incredible, and the people are all so wonderful and kind. I find it very different from Quebec and Ontario and if I had access to the healthcare out there, I'd move in a heartbeat. This was my very first time on the Cape Breton Island, but I've already booked a flight back. It's amazing! I've never been to the festival but I have friends who live in Sydney, NS (in Cape Breton) and I can ask them what they think of the festival if they've ever been. I just feel like my heart belongs out there. In terms of renting a place overlooking the lake or ocean, there are TONS! That is a much bigger thing there than here, they are little cabins or cottages they call them. In Cape Breton, there is an incredible lake called Lake O'Laws (check it out on Google) or over looking the ocean, I'd look at renting a place in Inverness or Cheticamp, both are just a short drive "below" the cabot trail (which is also incredible). Start there and let me know your thoughts, I'd love to help you plan as I am returning next fall as well. Imagine we connected out there? :)
Feel free to email anytime: [email protected]
Take care,
Charlene