Disclaimer of the day: on this site, I do my best to hold space for the entire disability community. Today’s post is about my challenges while travelling. When it comes to travel, my specific limitations are primarily food and fatigue related. I am not physically disabled, nor do I require the use of mobility aids. Travelling with physical disabilities presents an entirely different set of challenges than travelling with autoimmune disease. However, this is not my area of expertise so I cannot speak for this portion of the community. I believe that it’s important to recognize the entire disability community, and it’s everyone’s responsibility to be aware of disability issues and speak up with members of the disability community. So before we begin today, I would like to share a few perspectives and resources on travel and disability which are not my own – these perspectives come from others with first hand experience. As you will hear often in the disability community, “nothing for us without us.”

Travel-for-All, Easy Access Travel, and Wheel the World – a selection of travel agencies that specialize in travel and disability

Curb Free with Cory Lee – a travel blog that shares the experiences of wheelchair user Cory Lee

Mobility International USA – an organization dedicated to empowering people with disabilities and advancing disability rights

Wheelchair Travel – an organization dedicated to education and advocacy for inclusive travel

Travel in the “Before Times“

In my own autoimmune journey, travel was easy pre-Celiac. It was actually my favorite thing to do. Pre-Celiac, my health was easily managed. Post-Celiac, my thyroid is less stable, my fatigue is through the roof, and, of course, I’m much more careful now about what and where I eat. Spontaneity has gone out the door, and sometimes it feels like my love of travel has gone along with it.

However, I’m not willing to give up something I once loved so much. Although I’m not currently at my pre-Celiac level of travel, I’m ready to get back there someday soon. Even in the best or healthiest of situations, travel can be stressful, tiring, and hard on the body. I’ve learned a few things as I’ve re-entered the world of travel and hopefully a few of these tricks might help others as well.

Solutions and tips for the “Now Times“

• Be selective about your destination, especially early on
  • Try out destinations that are “easy” before going for those that are complicated. For me, that means selecting destinations that have knowledge of Celiac disease (awareness varies between countries and regions) and that are located in places where I’m fluent in the language.
• Plan plan plan
  • Although it can be exhilarating to hop on a plane or train with no concrete plans, that’s harder to do when you need special accommodations. From selecting a destination that fits your needs, to scheduling periods of rest, to finding lodging that works for you: the more you know the better. Although I don’t plan every single minute, I create some type of structure before I leave town. I ensure that I have an idea of what I want to see, I locate a few places where I can find safe food, and I build in rest.
• Do not over schedule
  • This is one I still struggle with! Pre-Celiac, I would plan intense trips. A different hotel or train every night, days crammed with activities, you name it – I vacationed like I wanted to see every. single thing. because I may never leave home again. Those days are over. Now, I select the top things I want to do and ensure I have plenty of time for each of them. Anything beyond that is icing on the cake, and it’s worth it to not burn out by the end of the trip.
• Build in time for rest
  • This has already been mentioned a few times above, but rest is SO necessary for me now. I create a schedule that accommodates the way I rest at home – I’m not an early bird and I often take naps. That doesn’t change just because I’m away from home, and I’ve stopped trying to fight it. Vacation is supposed to be rejuvenating. Not draining.
• Build in time to prepare and time to recover
  • I used to leave work and go directly to the airport (and vice versa) in order to maximize every minute of my vacations. That isn’t how I travel anymore. If at all possible, I take off the day before I leave and after I return. This gives me time to pack, unpack, do laundry, and generally not stress.
• Consider when you have your best energy
  • Like I said above, I’m a night person. I don’t plan vacation activities for first thing in the morning. I give myself time to sleep in and have a leisurely morning. The less I disrupt my home routine and natural patterns, the better.
• Let certain things go (ugh)
  • As I mentioned above, I used to travel like I would never again get to return. This worked for me for many years – it inspired gratitude for being able to see new and faraway places and it ensured I’d see every. single. thing. in case I never made it back. Well…I just can’t do it anymore. And that sucks. So, step one: grieve. Maybe it seems foolish and privileged to grieve something like this, but it’s one part of a larger loss: my body no longer works the way it used to and somedays that’s hard to accept. Step two: I accept that I might need to let some things go in order to take care of my body. Maybe I can plan a longer trip and do more – that’s awesome! But maybe I can’t, and I hit the highlight reel and plan on coming back in the future. Ugh, I hate even typing that, but it’s reality. Sometimes you need to let a few things go to ensure that you’ll get to enjoy the bigger ones.
• Know your needs and insist on accommodations that suit them  
  • This includes a place to stay, accessible activities, places to eat, and transportation, just to begin. I hate being an inconvenience or a burden, and it still takes me a lot to voice my needs when travelling with a group. I’ve had a lot of practice using that voice, and it’s gotten easier the more I’ve done it. For example, as someone with Celiac I’ve learned to voice that:
    • Sometimes I’ll need to prepare my own food, so I will stay in a place with a kitchen.
    • I need to know my kitchen is safe, so I will at least rinse (if not wash) the dishes when I arrive.
    • I am most likely to get sick when I’m travelling, so if I’m going to puke all night, I will make sure that I have my own bathroom (again, if that’s TMI, a blog about Celiac disease is SO not the place for you). I refuse to be that sick while also worrying about others having access to the bathroom. Easiest solution? I have mine, they have theirs. If needed, I can puke to my heart’s content.
    • I am easily fatigued, so I will pay to skip lines at any attraction that I can.
    • I am easily fatigued, so I will select lodging that is relaxing and quiet.
• Rely on the advice of others – Find me GF, etc.
  • There are a wealth of resources online – I find my people and see what they’ve experienced travelling to my destination. For me, that means using Celiac support groups (often on Facebook) and apps like Find Me Gluten Free. It’s highly likely that people live, work, or vacation wherever you’re going. They’re generally willing to help – just ask.
• If you can tolerate it, move your body gently
  • I love to exercise on vacation, but I think I’m probably in the minority on this one. I feel like it’s a struggle to cram exercise into my daily life, but on vacation I’ve got all the time in the world! Exercise doesn’t need to be at a hotel gym (although a good hotel gym is always nice to have). I try to walk on the beach, hike, or take a group class. I’ve found that movement or finding group activities can also be a great way to get out of a tourist area and into more local neighborhoods.
• Maintain your routines from home
  • Whatever it is I do at home, I try to do while traveling. It takes a little more planning, but I try not let go of my routines. Not only is it harder to re-engage in my routines once home, I risk spending my trip feeling like crap. So, if you mediate at home, meditate while traveling. If you exercise, rest, journal, or eat a certain way – do you best to maintain all of those habits while away from home!
• When you’re traveling but NOT the one making the decisions: research, research, research!
  • You may not always be in charge of where and how you’re traveling (think business travel, group trips, or family events like weddings or funerals). When I’m not the one making decisions on accommodations, I do as much research as I can.
  • In my opinion, a successful traveler is always as flexible as possible. I adapt my needs to the situation as much as you can, but I know that it’s not just ok – it’s necessary – to voice my non-negotiables. Here’s an example:
    • Small town funeral: I prefer to use a vacation rental and have my own kitchen, but this wasn’t possible in the small town I was headed to. However, I was able to find a hotel with mini-fridges in the rooms and a microwave in the communal breakfast area. The family meals were not gluten free (and I prefer it that way – there are too many risks in other peoples’ kitchens) so I ate quickly at the hotel before and after events. Driving to and from the small town, I packed lots of snacks and warmed up my dinner at in a truck stop microwave. Side note: now that I travel in a van and with dietary restrictions, truck stops have become some of my favorite spots – they have so many things!
    • Small town wedding: the provided hotel did not have microwaves or mini-fridges, but I contacted them several weeks in advance and explained my dietary restrictions. They added a mini-fridge and microwave to my room at no charge. I contacted the hotel caterer and was informed they could not guarantee catered meals would be free of gluten from cross-contamination. As a result, I planned time into every day where I could slip away and eat. That might sound sad, but it wasn’t – it was quick and easy because it was planned out. Having a plan in advance eased my anxiety. Also, it was WAY better than getting sick in the middle of a field or on an airplane.
• Do you have food restrictions to the point that it’s easier to fly with food? When I’m doing AIP, this is me. Here are some tips on getting meals and snacks through TSA, on to the plane, and safely to your destination.
  • Keep all perishable food in a carry on. Also, make sure you have enough carry on snacks to get you to your destination. For long flights, reach out to the airline in advance (at least a week or two!) to discuss allergen free meals. Confirm the day before that they will have a meal for you.
  • Find a reliable, rugged cooler or backpack that will keep your food at a safe temperature for an entire day. I absolutely recommend this one from REI, it’s been fantastic (although TSA has never figured out how to open it on their own).
  • Ice packs are considered a liquid if they have melted. TSA will confiscate them! Make sure your ice packs are frozen solid, and be prepared for TSA to check.
  • Foods that you think are solids might actually be liquids. Culprit number one: peanut butter. TSA will ABSOLUTELY confiscate your peanut butter (found that out the hard way with a brand new, very expensive jar of Justin’s Nut Butter. Dang it). When it comes to foods that might be considered liquid, try to find packets like this.
  • The almighty oven bag! Hotel won’t bring a microwave? Here’s an alternative that isn’t as efficient, but works like a charm (don’t burn down your hotel room, though).
  • Try a meal service if you’ll be somewhere for a while. Paleo on the Go is one of my go-tos. Their carrot muffins are excellent and their dinners are easy and convenient for travel. They can ship to your home or to your destination!
  • Keep a list of your go-to travel meals that travel small and well. My list includes:
    • Homemade grain free breakfast muffins
    • Turkey meatballs
    • Anything you can mix up and then put over greens or zoodles at your destination – sweet potatoes and chicken are my usual
• Learn a bit of the language
  • This applies to any polite traveler heading abroad. As someone with dietary restrictions, I feel it’s a must. I always learn at least the basics in order to convey my needs.
• Invest in good translation cards
  • These work best in tandem with learning a bit of the local language. For those with Celiac, I recommend Jodi’s cards from Legal Nomads
• Travel partner
  • Step one is simple: don’t travel with jerks. Step two: no one wants to be a burden on their travel group, so of course be as flexible as you can be. However, don’t travel with those that make it difficult or make you feel guilty. There are plenty of people in the world that love to travel, find some that are kind.
• Check and recheck your medications. Forgetting prescriptions at home or at the hotel will put a big ‘ol wrench in your program. I check twice at a minimum – once at home (ok, like three times) and once at the airport (ok, at least twice, but I’m anxious like that).
• Familiarize yourself with local pharmacies, just in case. Pro tip: if you’re from the US and travelling abroad, you might find that foreign pharmacies provide the exact same prescription drugs for considerably less money and that you can purchase these drugs over the counter. Before all else, ALWAYS proceed with caution when it comes to prescription drugs – make absolutely sure you are getting exactly what you need. However, I’ve absolutely taken advantage of this while abroad. Just make sure you know how much/how many of certain items can re-enter the US with you.
• Travel insurance
  • Travel insurance is a great idea for any sizeable trip, regardless of your health. If you are from the US, ensure that you will have health coverage outside of the country. If you are not from the US, definitely make sure you will have coverage once here! Should you have a flare, get sick, or need care for any reason, travel insurance could save the day financially. Pro tip: some credit cards offer free travel insurance for any trip booked on the card. Previously, I’ve filed a claim using the included insurance on my Chase Sapphire when a trip was cancelled due to weather – I got 100% of my money back.

Happy travelling! Until next time, The MLVL