Traveling with Fibromyalgia: Tips to Make Your Vacation a Pleasure Instead of a Painby Karen Lee Richards Patient Advocate
Traveling is supposed to be a pleasurable activity. We all dream of relaxing on warm sandy beaches, curling up by a cozy fire in a mountain-top chalet, or touring historic locations. Unfortunately, the harsh reality of traveling with fibromyalgia (FM) is that often, just getting to our destination is so stressful and exhausting, we spend most of our vacation in bed, trying to recover enough strength to make the trip home.
Take heart! It does not have to be that way. With a little pre-planning, you can actually enjoy traveling again. Planning ahead reduces the stress caused by last minute rushing, essential items left behind, inadequate facilities and long lines. Because stress frequently triggers a flare of fibromyalgia symptoms, planning ahead can be the key to making your trip an enjoyable experience.
Evaluate where you are going and what you will be doing. Do not set unrealistic expectations for yourself. Choose a destination that you will be physically comfortable with. If you are highly sensitive to cold weather, do not plan a trip to Alaska in the middle of winter. If you have difficulty climbing stairs, do not plan a walking tour of historic homes that feature high porches and multiple floors.
Be realistic about how much activity you can handle each day. It is natural to want to see and do all you can with the few vacation days you have available, but if you try to do too much, you will not enjoy any of it. Schedule rest periods into your itinerary that allow you to take a nap. If it is not possible to return to your hotel at regular intervals, at least allow yourself time to sit down in a quaint cafe and leisurely sip your favorite beverage while your body rests and revives. Make your first day a short one. Avoid scheduling any sightseeing the day you arrive. Traveling is tiring at best, so just plan to settle in, rest and maybe go out for a nice dinner.
If possible, plan at least one day of rest after you return home before going back to work or resuming other activities. Although vacations are enjoyable, they can also be tiring.
While most large hotel/motel chains have 800 numbers, it is worth the extra few cents to call the hotel directly to make your reservation. This gives you the opportunity to ask specific questions about the actual facility in which you'll be staying. Ask for a room that is on the main floor or near the elevator to minimize the distance you have to drag yourself and your luggage. Be sure to specify the accommodations you need (for example, wheelchair accessible, shower grab bars, smoking/non-smoking).
If you find hotel beds uncomfortable, after you check in do not hesitate to ask for additional pillows. Or go to a nearby discount store and buy a foam "egg crate" mattress pad. The added comfort is worth the few dollars it costs, and because it is so inexpensive, you can leave it behind when you go home.
If you are traveling by air, call the airline and tell them you are disabled. Request a bulkhead aisle seat (first seat in coach). This is the easiest seat to get in and out of and has the most leg room. Allow yourself extra layover time when changing planes so that, even if the flight is running a little late, you will be able to make your connecting flight without rushing. Ask the airline what arrangements you need to make to minimize walking in the airports. Even if you do not normally use a wheelchair, request that one be waiting for you at curbside and at the gate of each stop on your trip. Save your energy for sightseeing and other fun activities. Get your ticket and boarding pass ahead of time to minimize the number of times you have to wait in line.
Use luggage with wheels, check most of your bags and only carry on what you absolutely have to have during your flight. Lugging heavy bags through airports will leave you exhausted before you ever arrive at your destination. However, be sure to keep all of your medications in their original prescription bottles with you. In the event your luggage is lost, you will still have the medicine you need.
If you are traveling by car, plan to stop for a few minutes every hour or two. Get out of the car, stretch and walk around a little. Staying in any one position too long will cause you to become stiff, increasing your pain. Plan your seating strategy. If there is room in the car, make a bed in the backseat so you can lie down when necessary. Try out a variety of sitting positions and note how many pillows you will need to take to keep you as comfortable as possible.
Theme Parks/Tourist Attractions
Most theme parks and large tourist attractions are well designed to accommodate handicapped needs. Do not let your pride get in the way of your comfort and fun. Even if you never use a wheelchair in your daily life, consider renting a wheelchair or scooter at theme parks... unless you can handle walking for miles and standing for hours without pain. At most attractions if you are in a wheelchair, you and those accompanying you can go right in without waiting in line. A wheelchair or scooter will allow you to do a lot more and suffer a lot less.
When you are planning your trip, sit down with your family or travel companion and make sure they understand ahead of time that you may not be able to do everything they want to do. The most stressful part of a trip can be trying to meet someone else's expectations. Before you leave home, come to an agreement on how to handle the times you need to rest. Do you mind if they go somewhere without you one day? Are they willing to let you rest without making you feel guilty? Discuss possible scenarios and how you will handle them. Knowing you are free to say, "I'm really tired. I think I'll skip Water World this afternoon" enables you to relax and enjoy yourself.
With a little planning, your vacation will be the pleasurable experience it is meant to be.
Reprinted with permission, National Fibromyalgia Association, "Fibromyalgia AWARE", June-September 2003