Whether traveling far away or merely going on a weekend getaway, those with myositis often face numerous challenges on these trips. The physical limitations and the ups and downs of one’s energy level can make it difficult to plan activities or to even have the courage to leave town. The unpredictability of flares can make someone hesitant to choose to travel. At this meeting, two of our group members recently returned from vacations, while others shared their experiences with traveling in the recent past. We discussed the frustrations involved in planning a trip and being away from home when coping with myositis, as well as the ways traveling may be easier than expected. From these experiences, we learned some great tips that most group members thought would be helpful for them when planning their next trip.
The discussion began with group members expressing their worry about traveling away from home. Members said that in the time leading up to the trip, they began to wonder if they would experience a flare or take a fall in an unfamiliar place. A group member said her biggest worry was that she would hold back others on the trip with her. Another group member shared the worry about the challenge of using a small airplane restroom. To cope with these worries, the group talked about how adequate preparation is important and that sometimes you have to take a leap of faith when traveling.
When in an unfamiliar place, individuals with a chronic illness like myositis may worry that they will face a medical issue when away from home. It can alleviate some anxiety if you research information about the medical services available in the area ahead of time. A group member mentioned that she always finds out about a doctor in the area she is traveling in case she needs to seek treatment for her myositis symptoms. Another group member said that it’s important for her to have information about the hospital nearest her hotel in case she falls or feels ill. A group member said that she brings information about myositis when traveling since it’s a rare disease that many doctors are not familiar with, and she wants to make sure they are informed about her illness before advising her in a time of need. When one group member traveled with her husband, she used to purchase Medevac insurance so that if he was unable to continue the trip, they could be transported home quickly in an air ambulance.
Many individuals with myositis take multiple prescription medications each day, and it may be a good plan to consult with your individual physician before traveling. One group member suggested that you bring your medications in their original packaging. There is a small risk that they may be confiscated at the airport if they are unable to be identified, especially in other countries. Another group member said that she always packs her medications in her carry-on luggage when flying so that if her luggage is lost, she has her medications with her. A group member asked whether or not it was okay to send medications through the luggage x-ray machine, and the members thought that it was fine, but none of them had ever inquired about it with the airline. According to the latest TSA regulations on the date of this article, you may request a personal inspection of your medications to avoid the x-ray machine prior to your screening. It also may be a good idea to bring along extra medication in case your trip is extended, either by choice or unexpectedly.
When traveling, it is important to address dietary needs and to stay hydrated. One group member said that she wished she had taken food in her carry-on bag because the flight was delayed, and when they arrived at their destination, it was late at night and the airport food stores were all closed. Another person mentioned that airplanes are often very dry so she always has a bottle of water with her. Also, once on the ground, you cannot always predict the traffic patterns, and an unexpected traffic jam can impact your timing in regards to finding a restroom or a place to eat. One group member recalled a trip out West, saying that she couldn’t believe they hit a traffic jam in the middle of the desert. Eating at irregular times can affect the timing of when you can take your medications, thus disrupting your management of myositis symptoms. A lack of food can also cause one’s energy level to decrease and result in fatigue.
Before planning a trip, it is helpful to consider your limitations. For example, the group talked about how it is often exhausting to be away from home and that a long trip may be too much. Decide upon a length of trip that is reasonable, and be sure to bring enough medication for the time away. When planning the trip itinerary, it may be necessary to dedicate some time on the trip for resting. Sightseeing or walking around outside more than usual can be exhausting. A group member said that on a trip, some days are set aside for leisurely meals and reading books, or sleeping in late to give muscles a rest. Another group member said that when she planned a trip with her husband, he was trying to be supportive by telling her she could handle the fast paced trip they planned. Despite her doubts, she agreed to the trip and found the pace harder than she expected. When packing, be realistic in what you can push, pull, or carry. One group member said she always buys travel size toiletries because they are lighter and take up less space.
Oftentimes people with myositis travel with a partner or an entire group. The Myositis Support Group members talked about how they often feel like their physical limitations are a burden for their travel partners. One group member planned a wedding anniversary trip with her spouse, and though they both enjoy the outdoors, she is not able to go on long hikes with him. When he hiked by himself, it made her sad because she thought of the times when they used to hike together. The loneliness can lead to feelings of depression, so it may be a good idea to prepare for time spent apart so that everyone has activities that are satisfying. Even if you’re not traveling far but visiting a friend’s home, the group talked about how it’s important to inform friends of your limitations. It isn’t productive to assume that others know what your needs will be, so you may want to talk with them about your expectations for the trip ahead of time.
The group talked about the benefits of purchasing travel insurance. If a flare arose unexpectedly, there is an option to reschedule the plans, which allows those traveling together to make group decisions to make alternate plans without the person with myositis feeling left behind. One group member said she always opts for travel insurance to ease any worry about canceling a trip or changing the reservation. Otherwise, she knows herself well and feels that she may try to travel with a flare or push herself too hard.
When traveling to another country, it may be helpful to learn a few key phrases in the native language. One group member suggested learning how to ask if there are any stairs so that when making reservations at a restaurant, you can make sure it’s accessible. However, it doesn’t always work; everyone seems to have a different idea of what “stairs” means, and the restaurant they might think is accessible has a few steps.
It may be a good idea to research the expected weather at your destination right before traveling so you pack appropriate clothing and essentials. The weather in different locations can vary with the seasons. If it’s going to be hot, arrange ahead of time for a rental car with air conditioning. Also keep in mind that elevation can affect temperature as well. One group member thought that the mountain regions would be cool, but these areas can be quite warm during summer days. She also talked about how the city where they deplaned was much warmer than they could have imagined. The time they spent getting out of the airport, renting a car, and getting to their first night’s stay was extremely uncomfortable. They had planned to tour the city but the heat made it impossible, so one of the only things they could do was eat ice cream.
A group member also talked about the impact of elevation. She said that the altitude affected her heart rate and that breathing was more difficult. It was surprising to her, and she realized that she hadn’t anticipated the impact of altitude as much as she could have.
For those who travel infrequently, they may not be aware of accommodations made for travelers with physical disabilities. One group member was impressed that the hotel put them in a room adapted with raised toilet seats and tub chairs. Another group member said that when she carried medication that needed to be refrigerated, the airline was willing to put it in their mini refrigerator on the airplane during the flight. They even brought it to her upon landing so that she wouldn’t forget it. A group member who was in Europe said that the museums were very accommodating -- they often were moved to the front of the line. One time, they didn’t even have to pay. The bus system in Europe was also friendly to those with wheelchairs, and even some taxis are specially designed for passengers with disabilities.
Airlines offer passengers wheelchair service so they can be greeted at the gate when their flight arrives with a wheelchair. Also, those with physical limitations are often allowed to board before other passengers. The bulkhead seats in an airplane often allow for extra leg room, and these seats are often only available for booking at the gate so that they can be given to those in need of more room.
Although these accommodations are offered, they do not always work as they are supposed to. One group member shared her experience that the bulkhead seats were given to what appeared to be a number of able-bodied young men. Also, when they landed, she said that they had to wait awhile after deplaning for a wheelchair to arrive.
It is always a good idea to arrive at the airport early to make sure you have time to address your travel needs with the airline attendants. One group member provided the group with information about the Air Carrier Access Act, which outlines the rights of passengers with disabilities. The airlines are prohibited from discriminating against people with disabilities and need to provide a number of services, including an advocate who is available at all times. The group member mentioned that she wasn’t aware of this service and could have used it during her last trip when her scooter wheelchair was damaged.
A group member shared details about her travel experience on a cruise, which is her preferred method of travel. She likes the ease of having so many activities to choose from and can decide what to do depending on how she is feeling each day of the trip. On some cruises, the buffets are open all day (often referred to as “freestyle dining”) so she can schedule her meals as she chooses. She said most ships offer wheelchair accessible rooms. One challenge she pointed out was when they dock the boat at a port; it can be a little bumpy getting off the boat. However, in her experience, the crew was very helpful in getting passengers off. She also said that when she had a wheelchair, she was allowed to board the ship first, avoiding the crowd.
It may be helpful to book travel plans through a travel agent, especially one that is experienced in arranging trips for those with disabilities. A travel agent can listen to you and plan a trip based on your mobility challenges and need for special accommodations. One group member who recently went to Europe found a travel agency helpful because they listened to the types of challenges that needed to be addressed and made appropriate flight, hotel, and in-country travel arrangements. For example, the group member was seated in a row on the airplane that allowed for greater legroom. In addition, the hotels they booked had the option of renting a wheelchair for the week, and the rooms and elevators were wheelchair accessible. Using a travel agent also takes the responsibility off you or your travel partner so that when you get to your destination, it is no one’s fault when facing an obstacle.
The group also talked about the amount of time and energy it takes to plan for the vacation and that it’s often left until the last minute. Yet, everyone thought that they would follow this suggestion more seriously when planning their next trip.
This topic of travel raised many important issues for those with myositis. Emerging themes were the importance of planning ahead, knowing your limitations, and ultimately, being flexible once you’ve reached your destination. The group pointed out during the discussion that traveling can be a real challenge for those with myositis. Yet, the group also gave many suggestions that could make traveling more manageable. It takes a certain amount of courage to leave home when experiencing health concerns, but our group members showed that it’s possible for those with physical limitations to take vacations. It is always a good idea to share your particular health concerns with your physician before traveling.
Myositis Support Group at HSS
Learn more about the Myositis Support Group, a free support and education group held monthly at Hospital for Special Surgery.