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Fall 2003 

Travel with CFIDS: Plan first, and the sky's the limit
By heather Duncan-Whiteman

I took my first trip to a foreign country when I was 16, and knew immediately that I had been bitten by the travel bug. I loved the thrill of seeing someplace I had never been before. I took another trip after high school and spent my junior year of college living in southern France, spending every vacation and long weekend traveling to wherever I could afford. I knew that life after college would be full of trips to all parts of the world, as many and as often as my budget would allow.

But when I was 23 I became ill with what was eventually diagnosed as CFIDS and fibromyalgia. The first couple of years were so debilitating I couldn’t imagine traveling around the block, much less a foreign country. My plans for seeing the world, like most of the plans for my life, would have to wait.

After a few years, my symptoms had improved a bit, and had stabilized. More importantly, my husband Paul and I had learned how to adapt and manage things from one day to the next.

I don’t remember exactly how the idea of traveling to France got started, but once it did, it was hard to stop. We thought about waiting, but wait for what? A cure? Were we supposed to make a list of Things to Do Once CFIDS Is Gone? It didn’t seem right to keep putting our lives on hold. I was doing better than I had been in the past. Airfare was cheap, and the dollar was strong. We were fortunate to have the financial resources to travel. We talked about it in depth, made lists of the pros and cons, and finally crossed our fingers and bought two tickets to Paris.

The planning that followed probably seemed, to most people without CFIDS, excessive bordering on obsessive. We decided to go to the town where I had lived in college — it was familiar, and it was number one on Paul’s list of places to see. As I checked over my old maps and worked on a manageable itinerary, Paul took a crash course in French. I had been fluent when I lived there, but all of my cognitive abilities had been seriously impacted by CFIDS. In case my language skills failed me, Paul needed to know the basics, including how to get me to a doctor, in case of a serious problem.

Needless to say, traveling with CFIDS is not quite like traveling was before I got sick. The days of taking off on a moment’s notice are certainly gone for good. But traveling with CFIDS is possible, and enjoyable. Following are some of the things that have made our travels abroad easier:

Be realistic. You almost certainly won’t be able to do as much in a day as you have in the past. Traditional travel itineraries or pre-packaged tours are going to be out of the question. Try to assess what you can handle, and plan accordingly. Be your own advocate: request wheelchair service for the airports and special meals on the plane if you need them. Trying to forget about CFIDS while you’re on vacation will only make things worse.

Prepare and plan. Books, videos, the Internet, all can give you a good idea of what is available to see and do at your destination. You can familiarize yourself with the layout of the town, landmarks, methods of transportation, currency and basic language skills all before you leave home. I like to photocopy and enlarge sections of maps and use colored highlighters to mark out how to get from one place to another. Whatever makes sense to you and eases your confusion and stress, do it.

Meet with your doctor. Discuss emergency contact information and get instructions on how to handle symptom changes. Also discuss any medications you may be on, including how to handle dosing while changing time zones. Check customs regulations for carrying drugs in and out of the country, and remember to take extra doses of everything, in case you get delayed returning home. It is best not to rely on purchasing medications while abroad, since many prescriptions and over-the-counter drugs are classified differently in other countries. Also check with your health insurance provider so you know what to do in case you require medical attention during your trip.

Be good to your body. Much has been written about how to beat jet lag, but usually the best thing to do is to get as much rest as possible on the flight and immediately set your daily schedule to local time. Even if you normally take a nap during the day, do not give in to the temptation on your first day in your new time zone. Jet lag can also be made worse by dehydration, so drink plenty of water before, during and after the flight. Keep your arrival day’s activities simple, have a good dinner and make it an early night.

Speaking of food, if you are sensitive to dietary changes you may want to make a note of American chain restaurants or "American-style" eateries in your destination city. In most places you can find simple, relatively bland meals somewhere on the menu, and local grocery stores are a great source of simple foods you are probably accustomed to.

After checking into my hotel, my first stop in a city is the local market to pick up ginger ale for any stomach upsets and yogurt to keep my system in balance. And don’t forget the trip back home. For your body, coming home is a second round of jet lag, dietary changes and new daily routines. Give yourself time to re-adjust.

Expect the unexpected. Flights get delayed or cancelled, luggage gets lost, ankles sprain, flu can run rampant. The stress of having something unforeseen happen on your vacation is unpleasant for most, but is especially difficult for someone with a chronic illness. The more you plan and prepare, and the more you can keep your sense of humor, the more easily you can handle any surprises that may occur. Hopefully you will never need the number for the U.S. embassy or the address of the English-speaking hospital, but having them at your disposal will be hugely comforting.

Happily, our trip went pretty smoothly, and we had a wonderful time. I did experience some worsening of my symptoms, during the trip and particularly after we had returned home. For me though, it was worth it. I had found a way to reconnect with a part of myself that I thought I had lost forever. The world was still out there, and I could still go out and see it.

For our next trip Paul and I are going to Scandinavia with my mom. She and I have talked about going for as long as I can remember, to see where my grandma lived before she came to America. We always talked about it in terms of "someday". Last year for Christmas Paul and I bought a travel book for her and language tapes for ourselves. If all goes well, we’ll travel sometime in the next two years. After all, what are we waiting for?

Heather Duncan-Whiteman lives in New York state.