Because of IPF, I relate more to older generations than to my peers
Living with a chronic illness means avoiding certain activities
Traveling is complicated with a chronic illness. When you require supplemental oxygen to breathe or struggle with hypoxia on airplanes, things become even more challenging. This has been my experience with idiopathic pulmonary fibrosis (IPF).
IPF is a life-threatening and progressive lung disease that often leads to oxygen dependency or even lung transplantation. When I was diagnosed in my 20s almost eight years ago, my biggest fear was that the condition would prevent me from traveling. In some respects, it has, but I’ve also been able to take some amazing trips with accommodations in place to ensure my health and safety.
The topic of accommodations recently came up again when I was planning a trip to Greece. I’m going with a group of middle-aged women who are concerned about my ability to fly there safely and enjoy the trip to the fullest. I deeply appreciate their care and concern, as well as their dedication to an itinerary that is focused on rest and relaxation.
I’m grateful for people who understand
As the plans take shape, I’ve been doing a lot of reflecting. Firstly, I’ve always wanted to go to Greece, but I never imagined I’d have to lug around supplemental oxygen. That said, I am so grateful to be able to go and that my health is now stable enough to travel overseas. I’m also grateful that the focus of this trip is to connect with friends and prioritize mental and physical rest.
While I’m significantly younger than the rest of my group, I don’t anticipate it being a problem, as I relate strongly to these women. I’m very excited about the trip, as I feel like I’ll really need rest, relaxation, and connection by the time our departure date rolls around. Living with IPF is exhausting both mentally and physically.
Reflecting further, I realize that what I value most these days is different from what my peers value. This is likely due to the reality of living with a life-threatening illness and the pure exhaustion that comes with it. Many of my peers still enjoy going out to clubs while on vacation, consuming alcohol in excess, and staying up until the early morning hours. None of these activities excite me anymore; more importantly, they make the next day really challenging for me.
As a result of IPF, I have a very strict medication regimen. Regardless of what time I go to bed, I have to wake up at the same time each morning to take my meds. Due to the nausea and other side effects my anti-fibrotic medication causes, I also have to eat at certain times so it doesn’t make my stomach too upset. This doesn’t always align with other people’s meal or sleep schedules, especially after a late night of partying.
Further, some of my medications weaken my immune system, and I’m at high risk of contracting an infection if I’m around a lot of people. This drastically reduces my interest in going to clubs or crowded events.
Because of all these things and more, I simply relate more to people of an older generation. Life with a chronic illness is challenging, and it takes sacrifices to maintain my health and manage my disease. Sometimes that means being unable to do the activities my peers are doing, which can be hard. It can feel isolating and lonely to no longer be able to keep up with friends. But over time, I’ve crossed paths with people who have helped to reduce those feelings of loneliness.
I am so excited for this trip to Greece, not just because it’s a top destination on my bucket list, but mostly because of the company. I relate to these women, even though they’re older than me, and I know that I’ll be able to partake fully in the itinerary because we all value and appreciate the same things. Age won’t matter, and for once, my chronic illness won’t be a barrier.
Only five months to go, but who’s counting?
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
Comments
Steve Dragoo
Glad to hear from you, Charlene. Have a safe and blessed trip...
Steve
Randall Thornton
Charlene, hi. haven't seen your writing in a while, I was afraid something had happened. I enjoy your articles. I have couple of questions: How many liters of oxygen od you require and what kind of instrument do you use on trips to get your oxygen? Do you use an Inogen or cylinder oxygen? I would really like to take a trip, but I require 8 liters and the Inogen just won't do that, so I am back on the cylinders. I live in western Colorado and want to go to South Dakota, my home state. Then there isthe rocky Mountains.
So, I would appreciate if you could give me some info. Thanks and have a great day
Randall Thornton
Richard Vinson
Id love to hear about your trip to Greece.
Richard
Charlene
Hi Richard,
I haven't gone yet :)
I will definitely write a post about it when I do though. Thanks for your comment.
Charlene.
Charlene
Hi Randall,
Nice to hear from you! Thanks for your comment and I'm glad you enjoy reading my articles - its such a gift to be able to write them :)
My 02 litres range between 2-4, depending on my activity. As a result, I can still use a concentrator with great effectiveness and that is what I take on a plane, my Respironics SimplyGO. It works great, the only hassle is having to ensure you have double the battery life in the event of an emergency because the device can't be plugged into the plane (unless its a last resort emergency, I was told). You can get a doctor's prescription to take a cylinder on a plane too I've heard, but in order to do this you must have a "fit-to-fly" test conducted by your doctor and subsequent paper filled out. Not sure if this helps? I'd speak with your doctor and inform him/her about your travel plans and see what they recommend. I know it would be long, but could you make a road trip out of it? Again I'm lucky I can do road trips because my concentrator can be plugged into the car.
Take care,
Char
Charles J. Elbourne
I was just diagnosed with IPF, and it came as a shock. I have been reading Charlene's articles and they have instilled hope in me.
Is there some way I can connect with her?