Since her diagnosis 4 years ago with Crohn’s disease and Chronic Fatigue Syndrome, my mother and I haven’t had a vacation together. Our regular twice yearly trips to London—one of our favorite city breaks —have had to be put on hold as we adjusted to the daily realities of her illness, including her limitations and how to work with her new dietary needs.
Until now. With the arrival of the smash Broadway musical, Hamilton, to the London Victoria Palace Theater, we decided to finally arrange a trip back to the City. After all, when two people who don’t normally enjoy musicals find themselves captivated by a soundtrack for two years straight, it seems worth the effort to travel a few hundred miles to see the show for real.
The point of a vacation, of course, is to take a break from your daily routine. When you’re chronically ill, though, you can’t just switch it off for two weeks. So as we plan our trip, we do so with full knowledge that, this time, there will be things my mother can no longer do.
But while there may be new hurdles and challenges to overcome, the trip can still be very rewarding, providing we plan accordingly. Here’s some of what we’ve learned as we plan so far.
Choose your destination wisely
When you’re planning a vacation with chronic illness, think honestly about where you would like to go, and whether it’s achievable. You’re looking for a destination that hits that sweet spot between ‘fun’ and ‘practical’. It’s not weakness to accept that there are certain places you might not be able to go. A long hiking trip is no use if you have mobility issues, while a foodie excursion will be limiting if you have specific dietary needs. Plan accordingly. Consider things like how weather or temperature may affect you, or whether you’ll be able to get satisfactory care locally if something goes wrong.
If you’re traveling with someone, discuss your limitations with them.
Because my father grew up in London, we’ve been visiting the city for most of my life. We love to shop, and walking through the City conjures up memories of my childhood for my mother and me. It’s also only 3 hours away from our home in South Wales, meaning we won’t be too far geographically if she has any health issues. It’s the perfect ‘first trip’ after her diagnosis.
Likewise, if you’re traveling with someone, discuss your limitations with them. My mother was worried about the journey as she suffers from claustrophobia and didn’t want to feel trapped, so we’ve opted to drive rather than take a train to London. It’s a little more effort for me as the driver, but it means we can stop frequently if she needs a rest or some time out.
Make sure to pack what you can ahead of time. It’s likely to be a tiring process so avoid leaving things to the last minute. It also gives you time to consider anything extra you need to purchase or arrange. Items like a doctor’s certificate or note can be useful for getting care abroad, but also make sure to think of creature comforts like a favorite blanket to keep you warm, or make you feel more at home. If there’s going to be a lot of downtime, a tablet is great for Netflix rather than being restricted to hotel TV.
If you’re taking any of your meds or supplements on board a plane, make sure they’re clearly labeled with what they are
Consider using a pill organizer box to arrange your medications for each day of your trip. When you’re away from your daily routine, it’s very easy to forget to take your meds even if you’re normally very organized. Set an alarm on your phone to be doubly sure that you never forget to take them at the relevant time of day. If fatigue is an issue, like with my mom, it’s even easier to forget out of tiredness. An alarm reduces that risk. (Alternatively, you could also subscribe to a service like PillPack, which prepackages your medications by the dose and ships them directly to you.) (Disclaimer: Folks is sponsored by PillPack.)
If you’re taking any of your meds or supplements on board a plane, make sure they’re clearly labeled with what they are, along with your name. Take them on your carry-on luggage so there’s no risk of losing them if your luggage is delayed.
If you’re planning a trip that’s focusing on a specific event such as a shopping trip or attending a concert, make sure to book your hotel as close to the location as you can afford. Hotels.com and Expedia.com are great options for booking, allowing you to enter an address and view hotels nearby. After you’ve participated in the activity, you’re likely going to be tired, especially if you have a chronic illness. You want to be able to return to your hotel room fairly quickly. If visiting a city, a central location is ideal if you want to rest up for a couple of hours before heading back out.
Pre-Crohn’s, my mother and I would choose a hotel just outside of London and take public transport in. While that’s a cheaper option, this time around, we’re paying the extra to be nearer to the action. If she’s going to be out late, we want it to be spent in fun, not in transit.
Consider any additional requirements you might need and let the hotel staff know ahead of time. Do you need wheelchair access in your room? Or a walk-in shower? Both Hotels.com and Expedia.com allow you to filter results by accessibility features. It’s still worth informing the hotel at the time of booking to guarantee you get the assistance you need. We’re prioritizing somewhere that has elevator access. The last thing we need after hours of traveling is my mom struggling up multiple flights of stairs.
Finally, if you’re planning on dining in your hotel, this is also the ideal time to make them aware of your dietary needs. Outside of your hotel, sites like AllergyEats are great for looking up allergy-friendly restaurants. Elsewhere, a quick Google for a restaurant you’re considering will often provide information on how well they cater for specific diets. Restaurant chains are particularly efficient at offering everything you could need to know.
Plan, plan, plan
Everybody’s energy levels are finite, but with a chronic illness, your batteries recharge slower. Take that into account to to use your energy to the fullest.
Plan some rest days amongst your trip.. Ideally, have a rest day the first day you arrive at your location, so you’re well-rested to go out the next day. If financially possible, extend your trip by a few days so you can take it easy as needed without giving any time up for shopping and sightseeing. Reading a book by the pool or indulging in a spa day can restore you a little for the next day of sightseeing.
Everybody’s energy levels are finite, but with a chronic illness, your batteries recharge slower.
Think about what’s essential for you to achieve on your trip. Is there a walk you particularly want to take? A show you desperately want to attend? Place that at the top of your list then write up everything else that you’d like to do. Prepare a ‘worst case scenario’ plan of action alongside a ‘best case’ list. For our list, we’ve made Hamilton our biggest priority, with short shopping trips to Selfridge’s or Harrod’s being next on the list. Everything else is optional.
Check out services like Google Street View to see exactly where you’re going, and whether a location is accessible. Apps like AccessNow crowdsource information to determine places that are accessible for wheelchair users. For those with mobility issues that don’t require a wheelchair, it’s great to be able to know exactly where a seat or bench is along a public walkway. Use apps like Uber or Lyft to arrange rides ahead of notice so you don’t have to rely on hailing a cab the old fashioned way. It might cost a little more than using public transport, but it’s worth the extra few bucks if you’re able to enjoy your trip.
Many chronic ailments also require you to follow specific diets Luckily, most restaurants and eateries can cater to specific allergies and diets, but you still should do research beforehand. Don’t be afraid to email or call to double check a restaurant can meet your needs. Check out potential places to visit on Yelp or TripAdvisor, and see if any customers with dietary needs have had issues before. We’re not booking reservations ahead of time in case my mother’s Crohn’s is acting up, but we still have a list of options prepared of places that we know can cater to her gluten-free diet, if needed.
If you’re traveling to somewhere that involves a different language, brush up on learning key words such as what dairy or gluten are in that country’s language. Before your trip, use Duolingo, a language app, to learn the basics for food items. Make index cards that explain your allergies in the relevant language, saving you the hassle of learning correct pronunciation. Google Translate will help you in a jam while you’re there, but don’t rely on it as it’s imperfect.
If you’re able to, take some snacks with you. These can sustain you while you’re walking around, and if you need to eat and can’t find a place that caters to your needs, a bag full of snacks can be a life saver, especially for women like my mom, who weakens quickly if she doesn’t eat regularly.
Don’t put too much pressure on yourself
My mom is already feeling a little sad that this trip won’t be as jam-packed with sights and destinations as previous visits. We’re probably not going to be able to be as active as we have been in the past. But that’s okay. The important thing is: she’s still on vacation. Sure, the trip might not go perfectly to plan, and sure, it might be bittersweet at times. But she’s made it, and that’s a big step.
The important thing is: she’s still on vacation.
Feeling obliged to get everything possible out of an experience can make things more stressful than they should be. Just enjoy the ride. Take pleasure in the little things. Like me and my mom. We’re going to see our favorite city in the world from a whole new perspective. That’s exciting no matter how you cut it.