Provence By Art In Voyage
Provence By Art In Voyage

The Ability to Travel: How Mindset Shapes Mobility

Carol’s story of choosing travel over being defined by chronic illness

July is Disability Pride Month, and we’re marking the moment by chatting to a much-loved Art In Voyage guest who has chosen to live life to its fullest, despite living with rheumatoid arthritis (RA).

Carol Lee is an inspiration. After being diagnosed with RA when she was a college freshman, she did not let it dampen her love for travel. At 71, she is still visiting countries all over the world. She makes the most of each destination, going to pubs, dancing, swimming in cold water, and hiking up to waterfalls. How does she do it?

In this week’s blog, she shares her tips and a few of her experiences. It’s well worth a read for not just those who have RA, but anyone who wants to travel, but feels like they’re in a rut.

After all, travel might be the panacea you need — especially when you have Art In Voyage by your side!

Tell us a bit about yourself:

I’m Carol Henry Lee, born and raised in Bartow, Florida, and I’ve lived in Orlando since 1984. I’m 71, retired, and in the fall, you’ll find me at the Gator games at UF. I love my family and friends, and I love to travel. When I was 12, my grandmother took me to Europe for six weeks (plus a week on the SS France) — that’s when the travel bug bit me!

In 1973, when I was a freshman in college, I had my first rheumatoid arthritis (RA) flare. I didn’t even know what RA was. The doctor told me I shouldn’t get married or have children, and that I would be crippled in 10 years. He prescribed 16 aspirin and 14 hours of rest a day… and no exercise.

It didn’t take long to decide to keep living as full a life as I could. It was a good choice — I married, had my son, and raised him mostly as a single mom. I worked full-time until age 67 and never took disability. After 52 years of RA, I’ve given up many things (tennis, skiing, wearing heels), and my life is unpredictable, but I’m happy, active, and I love my life. I’ve done well because I have a great care team, good insurance, good meds, and people who take care of me when needed. And I think the main reason I’m doing well is that I have a positive attitude and strong faith — RA doesn’t define me.

What are your tips for advocating for your needs when traveling with RA?

The squeaky wheel gets the grease. If you don’t ask for help, you won’t get it. If you ask nicely, you usually get help (and if you don’t, be nice anyway).

  • TRAVEL COMPANY:

    It’s important to let your travel provider, as well as your trip host, know your medical issues in case something happens or if you just need to ease into your day.
    For instance, when I was in France, I thought I broke a rib. Mikael (host and CEO of Art In Voyage) suggested I go to the emergency room. He was in contact with me the whole time and gave great advice. He knew my medical issues and what kind of insurance I had — he took the worry off my plate.

    Another example is from my most recent trip to Ireland. My hostess, Crystal (Hochman), talked to me about my RA before the trip and knew what to expect. She, along with my travel companions, anticipated when I might need help and stepped up without making a big deal. I’ll always be grateful.

    I love traveling with Art In Voyage because they have removed so much stress from traveling. The days of figuring out how to get to the hotel from the airport, of standing on street corners with a map wondering where I am, of dragging my luggage over cobblestones and up stairs, of not knowing who to call when there is a travel issue, and not knowing which train to get on — all of this is taken care of by Art In Voyage.

    I’m a big fan of having my host drive me to a beautiful hotel and taking me to wonderful restaurants and fun wine tastings — all stress-free. Choosing the best travel operator is critical if you have RA.

  • AIRLINES:

    When flying to the west coast or overseas, I usually ask for wheelchair assistance. This can be done online when filling out personal information for the airline. Even if I’m not in pain, I want to protect my feet and legs at the beginning of the trip so I can keep up with everyone and not miss a thing. It’s simple — you get in the wheelchair when checking in, and the aide takes you all the way to the plane. If you need to stop for coffee or the bathroom, they wait for you. And because you’re in a wheelchair, you board early and have time to get situated without a crowd. It’s a wonderful service — just remember to tip the aide $5 or $10, depending on how far they take you — and sometimes how fast!

    Sometimes I need a special seat on the plane. I always pick the best seat I can get, and then I call the airline and nicely explain my situation. Usually, they are more than willing to help. I’ve had them offer to upgrade me to a better seat for no charge, and more importantly, they help me find a seat with fewer people around me.

  • HOTELS:

    Again, communication is important. If you need a walk-in shower, a room near the elevator, or anything special, hotels are happy to make sure your room is accessible. If you’re in a hotel without an elevator, you can ask ahead of time for help with luggage. If you need extra water for medicine, they will bring it to you.

  • How do you pack for trips?

    I love TravelPro Maxlite® 5 luggage. It is very lightweight, has four wheels, and is easy to pull around airports.

    I use a carry-on bag with wheels — backpacks are too hard for my shoulders, and heavy bags are too hard on my hands. My under-the-seat bag always has a trolley sleeve so I can slide it onto the carry-on. I also wear a small bag across my chest with my passport, money, phone — just the essentials.

    I take a very light, small backpack for during the day on trips — it holds my water bottle, raincoat, and all things needed for that day. I keep it as light as possible.

    I only bring clothes that are light. I wanted to take some sweaters to Scotland, but they were heavy. In these situations, I buy clothing at the destination if needed.

    I also pack a silicone non-slip jar opener so I can open water bottles, etc., in my room.

    How do you manage long travel days?

    I used to have a bad RA flare at the beginning of every trip — it would usually start on the plane once I was relaxed from all the trip prep. My rheumatologist suggested that I pack the weekend before and take the day off before and after the trip to rest. That helped me tremendously.

    Now that I’m 71, I always fly to my destination at least one day early. It removes the stress of missed and canceled flights, and if everything is on schedule, it gives me a day to rest. This is working out very well.

    My rheumatologist suggests stopping every hour if possible, and if not, every two hours on car trips. It’s important to keep your joints loose and moving — even if you don’t have RA. On flights, I get up every hour and move around the plane. I also do foot exercises in my seat.

    Train transfers are the worst! Think seriously about train transfers when traveling.

    How do you deal with flare-ups while away from home?

    I just have to get through the flare — I stay in bed and rest until it’s over. Out of all my trips, I’ve only missed a day in Copenhagen and a day in Munich, but I have limped and had bad hands and wrists in many countries. I just will myself to keep moving. There is no magic way out of a flare.

    What’s one piece of advice you’d give to someone with RA who’s hesitant to travel?

    I say Go For It! Life is too short to miss out on the wonders of the world and the people you meet along the way.

    It didn’t happen overnight, but my financial advisors finally changed my retirement plan so that I can travel NOW before I can’t. When my body wears out, I will find joy in my travel memories, especially the trips with my family. And yes, one of my financial advisors is my son, but I passed the love of travel on to him, so he gets it.

    Is there something you wish you knew earlier about traveling with RA?

    Yes — and I wish I knew it about life in general too — REST! I have learned what a difference it makes, and I have learned to pay attention and know when I need to take a break. In Provence, I missed a Michelin restaurant because I stayed at the villa all day to rest. In Scotland, I spent my first day sleeping late and having a leisurely breakfast before I went sightseeing. In Umbria, I took an afternoon off to sit by the pool and rest because I didn’t feel good.

    Whether you have RA, some other medical condition, or you’re healthy as can be, we all need to pay attention and not feel guilty if we need to rest on a trip.

    Ready to take it on?

    Inspired by Carol to take the leap and travel? Chat to the travel experts at Art In Voyage to learn more about how we can support you while you live your dreams.

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