Traveling can be challenging for just about anyone, but throw in multiple sclerosis and all its baggage, and you can end up exhausted and stressed out before ever even reaching your destination.
But with a bit of pre-work and preparation, you can set yourself up for a fun and relaxing trip!
Car, bus, train, boat, plane … Depending on your destination, you may have a few alternatives to consider when figuring out how you’re going to get there. For many years, we would travel to Sun Valley, Idaho to visit family once or twice a year. Pre-MS, we always drove there. But following my diagnosis, sitting in a car for 12+ hours was no longer an option. So I had to make changes and fly there instead. Try to keep in mind what will work best for you and your MS as you make your decision.
If you’re flying and need a wheelchair, reach out to representatives and let them know what you need in the weeks leading up to the trip. I have found it best to call just after booking, and then once again a few days before the trip to confirm that they have the information in their system. This helps avoid mess-ups and keeps my panic at bay. I quickly found that even when my walking is better and I’m not using my cane, one mad dash down a long concourse to try and make a flight can leave my legs shot for days. It’s not a good way to start off a trip and really not worth it, so I’ve learned to swallow my pride and get the wheelchair. Plus, we have met some wonderful people pushing my chair. Just like taxi and Uber drivers, many of the folks in these positions are wonderful, compassionate people with amazing stories. They’re always super fun to chat with!
Make sure that you have enough on hand, and if not, order what’s needed. If you’ll be traveling for an extended period of time, it might be necessary to find a way to get refills on the road.
Call your insurance company to find out what your policy says about getting medication while away from home. When I was first on Avonex, which ships with ice packs and is supposed to be kept refrigerated, I packed three weeks’ worth of the drug into a small cooler (with ice) in my carry-on. The second year, I realized that they could simply ship the supply to my parents’ house (our destination). It was there, ready and waiting, when I arrived. Much better than dragging a dripping cooler across the country!
We all hope to not have a medical emergency while traveling, but unfortunately, the random and unpredictable nature of MS makes us a bit more susceptible to this type of situation. Doing a bit of pre-work (and checking in with your doctor, insurance company, and facilities located where you’ll be traveling) can go a long way in reducing the stress of worrying about the “what ifs.” This can prove to be invaluable should the worst-case scenario arise.
In the days leading up to your trip, check a weather site to get the forecast and plan accordingly. The need for “comfortable” shoes took on a completely new meaning for me after being diagnosed with MS. I used to practically live in flip flops, but I can’t wear them anymore. (I can’t feel my feet to know if they’re still on or not, and I often found myself missing a shoe.) So now, you’ll find me traveling in either my infamous boots or a comfy pair of Chucks. Other things that I’ve begun to add to my list as a result of MS: a wide-brimmed hat to stave off the sun and water shoes. (I admit that I truly hate the look of water shoes, but they do help keep my numb feet safe from rocks and sharp shells when at the beach or on the river.) I’ve recently discovered a love of cooling towels, as they help in any situation where I might overheat.
Another thing I have not yet tried, but have heard great things about, is a cooling vest. If and when I get back to hiking, this will be a must!
I personally always err on the side of comfort. Long before it became a fad for celebs to be photographed in their comfy sweats entering airports, I could be found sporting my sweatpants, flip flops, and comfy T-shirt whether traveling by plane, train, boat, or car. These days, I have another must for traveling — a diaper. Well, OK, not a diaper exactly, but Poise pads have become my best friend. They are discreet (no saggy, baggy skinny jeans going on here) and are a life saver for those moments when I realize my brain failed to get the memo and I find myself peeing my pants.
Although my balance and mobility are much improved these days, I certainly don’t need anything countering that. So I look for bags that evenly distribute the weight across my body — backpacks or across-the-body bags. I always have a change of clothes, medication (I make sure I have at least three days’ worth on me at all times), a healthy snack (I am a sucker for almonds), my Bucky (to ward off stiff shoulders and neck from sitting for long periods of time), a large amount of water (which can be risky — again, the Poise pads are a necessity), a backup pair of contacts (in case my eyes begin to have issues with my glasses), and a pack of gum to chew during takeoff and landing to help with ear discomfort.
Make a list of what you need and research where you’ll be staying. Although most information can be found online, I tend to call places. Talking with a representative and hearing their responses to my questions gives me a better feel for who they are and what my experience will be like. This isn’t always a given, but over the years, calling and making friends with someone there has had many benefits and perks. Questions you might consider:
- Is it wheelchair accessible?
- Do they have a gym/pool?
- Is the shower/tub manageable?
- If you have dietary restrictions, will they be able to accommodate
You’ll know what will and won’t work for you.
What do you need to get around and enjoy your trip? If you use a wheelchair or a scooter, you may well want to take it with you. Check with the airline (or other transportation company) to find out about their policies — I learned the hard way that flying with my Segway was not an option. Or, you might want to rent something on your arrival. Companies like Scootaround and Special Needs at Sea provide various options in many locations, and some cruise lines offer access to scooters when you’re onboard.
Everyone’s choice of vacation is different. Whether you like big cities, the outdoors, or going abroad, there are bound to be plenty of activities. Knowing what they are, and figuring out how to fit them into your life (and abilities) can be a challenge. Doing a bit of pre-trip research can set you up for a successful vacation. Outdoor Sport & Leisure has a great list of activities along with resources for many places around the world. Another great resource to tap into is Reddit. A location-specific search for activities for those with disabilities can lead to some great information and awesome recommendations.
Whether you’re traveling for work or taking a vacation, any trip is an opportunity to have fun, take in some adventure, and meet new people. Do a bit of research and see if there are any local MS groups in the area, and perhaps schedule a meetup with other MSers! Or see if there is an MS event already scheduled in the area for the time that you’ll be visiting that you can take part in. After all, it’s not only where you go, but who you meet while you’re there!
Find new ways to do old things and new things to do. Make the most of any trip you take!
Meg Lewellyn is a mom of three. She was diagnosed with MS in 2007. You can read more about her story on her blog, BBHwithMS, or connect with her on Facebook.