Detailed planning makes travel with chronic illness possible

As a child, I always used to check out travel and cooking books from my local library. I’d daydream about foreign places and exotic foods and couldn’t wait to see the world. Some might say I had my head in the clouds.

Soon after graduating from college, I married and started a family, and my travel plans were put on hold. But as my children grew older, the travel bug resurfaced. I decided well in advance to attend the 2008 Summer Olympics in Beijing with my family. While I had an annoying cough and a recent onset of asthma, I was determined to not let it affect my travel plans.

But then, in 2007, the unthinkable happened: I began struggling for every breath, my legs were covered with a rash, and I had constant sinus infections.

On April 1 of that year, my doctor diagnosed me with eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis. My travel plans were put on hold for the next decade while I struggled to control my overwhelming fatigue and frequent infections. For a long time, I believed my yearning to see foreign lands would never be fulfilled.

But one day, while sitting at home feeling sorry for myself, I realized that I could, and would, learn to travel safely. I made it my mission to revisit my childhood daydreams despite my constant fatigue and other health issues.

It’s taken me a long time to figure out how to travel safely as an ANCA vasculitis patient. What I’ve learned is that careful planning makes the difference between a successful vacation and a stressful one.

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Following are some of the things I’ve learned:

Considering medication and doctor appointments

To travel, I work with my doctors beforehand to adjust my medical appointments to fit my schedule. I let them know about my plans and listen to their advice. Because I have a history of frequent infections, doctors might give me emergency antibiotics if I’m traveling internationally.

I also pack an extra week’s worth of medication to cover unexpected refill delays. I request a vacation refill from my pharmacy to avoid running out of certain medicines.

Scheduling rest days

I include rest days in my vacation schedule so I’m not too exhausted to enjoy the sights and events. I try to take a rest day after every two days of activities. As I relax, I do quiet things and limit my social activities, both to minimize fatigue. It’s essential that I don’t schedule too many activities, as well.

Also important, I always have a Plan B in case I need additional rest.

Readying for the airport

I give myself extra time to reach connecting flights, usually around two hours. Avoiding the airport sprint and the stress of trying to find my connecting gate is essential. If I need help, I don’t hesitate to ask for it. These requests might include priority boarding or a wheelchair or motorized cart to my gate. I’m not shy about asking for help when I want to make my travel days successful.

I also call the airline, airport, or Transportation Security Administration (TSA) ahead of time to plan for assistance with security, especially if I need to carry more than the acceptable amount of liquids.

During one trip to Boston, I had 10 days of IV antibiotics in my carry-on bag. I called the TSA at my home airport, and they had an escort waiting for me, which made getting through security hassle-free.

Choosing travel destinations

My body has difficulty adjusting to high heat and humidity, so climate matters to me. I go to rainy Ireland or the off-season Mediterranean instead of the sunny beaches of the Bahamas or Mexico, for example.

I also minimize my exposure to large crowds. I’m always on the lookout for off-the-beaten-path locations, such as Alaska or less-visited national parks in the U.S. All-inclusive resorts, cruises, and driving vacations can also be relaxing and stress-free.

Traveling takes more planning because of EGPA, so I must take the time to prepare for a successful trip. I may have missed the 2008 Olympics, but I’m happy to say that I’m now fulfilling my childhood travel dreams. Bon voyage!

Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.