I have fibromyalgia and hypothyroidism, which leaves me tired and in pain pretty much every day. I'm not looking for pity; it's just a fact -- the sky is blue. I am in pain. My cat loves to steal bread. There are days and weeks when I can do almost everything I want to do. There are also days when I have to walk with a cane, where I can barely make it up the stairs to my room, and where my mobility becomes very limited. I travel anyways. With these diseases, I have been to five countries on four continents, traveled thousands of miles on road trips across the Western United States, and continue to cross items off a travel bucket list a mile long. It's not always easy, but it is possible. Here's how I do it: What is a Spoonie?If you’re here, you probably already know what a spoonie is (or at least were able to guess it from the title of this article). A spoonie is any person who suffers from a chronic illness. Chronic illnesses are often invisible, and can be diagnosed at any age, so a person with chronic illness may appear to be very healthy. Generally, these are diseases like fibromyalgia or lupus, but spoonie is sometimes extended to those who suffer from severe depression. This article by Patients Rising explains the concept well, but in essence, spoonie is a term coined by Christine Miserandino to describe the limited energy reserves people with chronic illness have. It’s a self-identifying term… and one I’m not always very comfortable using. Yes, I have chronic illness, but I definitely worry I’m not “sick enough” to call myself a spoonie. (Impostor syndrome is pretty common among people with chronic illness, I’ve found). Being constantly tired and in pain sucks--but I still have doubts about it all, and beat myself up as a result. When I was diagnosed with hypothyroidism, I worried that it’s just some thyroid disorder, not a “real” illness like what other people have to go through; I should stop complaining. I was diagnosed with Fibromyalgia a few weeks after I initially posted this article, and I still suffer from impostor syndrome, despite it being one of those "real" illnesses I was berating myself for... not having? And you know what? That’s total BS! As a friend of mine likes to put it: This ain’t the Oppression Olympics. Other people may have it worse than you, but that doesn’t make your suffering any less real. People like Rachel Hill really helped me begin to overcome my anxiety around using this term (and give me a lot of “holy cow, I feel that, too!” moments) so I could write this article--both for you, and as a reminder for myself. Because here’s the thing: It can be really, really hard to travel as a spoonie. We just don’t have the same kinds of energy reserves as other people, so we need to take our health into account when planning a trip. That being said, there’s no reason why we can’t travel and enjoy ourselves--without making ourselves worse off. 7 Ways to Travel as a Spoonie1. Pack WellTo be honest, I could probably create an entire post dedicated to spoonie packing, but here’s the basics: it all comes down to medical necessities and comfort. I always bring my medications in a carry-on bag which never leaves my side. Other people suggest splitting them up between bags, so you have a full supply in both your carry-on and your packed luggage, but do what works best for you. I also make sure to bring plenty of items for comfort and entertainment. A heating pad, pillow, weighted blanket, sleep mask and ear plugs are a must for me on road trips, but I pack a little lighter on flights (there’s no sense in lugging a 10-pound blanket all over the place). Foldable canes can also make packing a lot easier. In terms of entertainment, I need something to keep my mind distracted if I’m not feeling well, so I cram my phone full of audiobooks/ebooks, and always bring a travel-sized watercolor painting set. 2. Plan for Medical EmergenciesI highly recommend getting a doctor’s letter for all your medications, and preferably explaining any illnesses you may have and accommodations you may need. A lot of people feel anxious bringing their pills into another country (or just get anxious about TSA in general), but having a letter of medical necessity can help smooth over any questions you may receive (Rachel Hill has a great template here). If you don’t already have travel insurance, now is the time to get some. You’ll also want to know where the nearest hospital is where you’re going. Save these onto your phone if you can, and try to highlight those which are of an international medical standard. Bonus points if they speak your language, because communicating with doctors is hard enough in any language. Finally, although it’s not necessarily a medical emergency, put together a mini kit for other problems which may arise. Travel often leaves us prone to infections, so packing medication for colds/flu, food poisoning, allergies and other common ailments is a must. 3. Know your LimitsSome people can be out walking around a new city all day and party half the night and be ready to go the next morning. I am not one of those people. I used to feel bad that I wasn’t one of those people, but over time, I’ve learned to let it go. (Cue full-on Elsa moment, y’all). If I don’t respect my limits, my body will MAKE me respect them--usually after I've worn down my immune system so much, thereby making me super sick and bedridden for days. Nobody wants that, so the easy solution is to respect my limits. 4. Plan BreaksThe natural way to respect my limits? Lots and lots of breaks, both during and after my trip. I always plan at least a day of downtime between when I return from my trip and when I start work again. I’ve found bouncing from travel to work is a surefire way to make me overwhelmed and ill. While traveling, I plan regular breaks to keep myself going strong. On my solo trip to England, I took an entire half-day to relax in my room. Just because you’re on holiday doesn’t mean you have to be making the most of literally every second: you’ll have so much more fun if you allow yourself time to slow down and manage your health. It can be a little disappointing sometimes to not have as much energy as the people you’re with, but it doesn’t have to ruin your trip. Plan a spa day when you need a break; encourage the other people in your group to go do something you’re not interested in while you relax; get creative! 5. Make Comfort a PriorityThis goes double for flights or long road trips. Dress for comfort, wear practical shoes, and be sure to move around. When I’m on a long flight/car ride, I plan regular stretch breaks, both seated and standing. If you’re self-conscious about doing these in flight, go to the bathroom and do them in there (goofy, but efficient). As I mentioned above, I pack a few things that make travel as comfortable as possible (heating pads, pillows), and try to make all my baggage as easily-maneuverable as possible. I use a rolling suitcase, and clip my backpack onto it to make it easily portable. 6. Make Travel as Smooth as PossibleThere is nothing worse than spending all of your vacation worrying about things falling apart. To combat this, I plan a lot of things ahead of time. Pick the right lodging, preferably as close to what you want to see/do as possible. Lodging away from the hubbub (particularly in touristy areas) tends to be less expensive, but traveling back and forth every day isn’t always worth it. Be sure to print out all of your information -- plane tickets, lodging information, tours you may have booked, etc -- ahead of time, just in case. Between phones not working or some places only accepting your reservation if it’s printed (even if it’s just the printed e-mail confirmation), it’s much easier to just spare some paper and not worry about it. While you’re at it, keep all of your medical information, IDs/passports, insurance information, and important documents on your person, too, if you can. Finally, I always share my itinerary with family/people back home, just in case. When I travel solo, I check in every day, updating them on any changes to the plan, or before I go on hikes. 7. Don’t Be Afraid to Request AccommodationsIf you have mobility issues, airports and hotels are often able to accomodate you. I cannot emphasize this enough: Ask for help when you need it. There’s no use in wearing yourself out because of pride. I traveled almost exclusively via public transportation in London on a super tight budget, and tried to sit down any chance I got. Obviously I wasn’t going to take a seat away from someone I felt needed it more, but it’s much easier to conserve energy levels when you’re sitting as opposed to standing. I also made sure I gave myself opportunities to sit and rest when I was out and about. And for those of us living in/traveling around the United States: did you know that the US National Parks Service has a Disability Access Pass? Citizens and permanent residents who have been medically determined to have a permanent disability can apply for a free lifetime access pass to all US National Parks and Federal Recreation Lands. For a $10 service fee, you and the passengers in one motor vehicle will be allowed free entrance into more than 2,000 of the US’ National Parks, National Wildlife Refuges and National Forests. It’s not something I’ve used or tried to apply for, but Lissa from Roots, Wings and Travel Things has a great post all about it here. Travel with chronic illness can be hard, but it doesn’t have to be impossible, either. I'm still getting the hang of it, but I've traveled to four continents already, and have no plans to stop anytime soon. If I can do it, I believe you can, too. With that in mind, what tips would you add? I’d love to hear them in the comments section below! Like this post? Why not share it?If you enjoyed this article, please leave me a comment telling me what you think! Or, if you found it useful, share it with your friends! You'll be helping me turn my passion for travel into a business, and more importantly, you'll be helping your friends out with any travel questions they might have, too. See more adventures!If you liked this post, you may also like:
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Hi, there! Call me Kris. I’m a world traveler, author and artist working to showcase the world's beauty and inspire you to find your confidence to see the world!
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