I did it! I went to Scotland for two weeks, not only survived, but also had a good time. Of course, it was different from traveling when I was healthy, but it was a giant triumph. Traveling is one of my greatest passions and knowing that I can still do it gives me something very powerful to hang onto when everything else is falling apart. Not only did I get to see Scotland again, but I’ve regained some meaning to my life. Naturally I’m already planning my next trips, yes the ‘s’ is intentional. With that in mind, I’ve put a lot of thought into how best to travel with a chronic illness. What I did right this last time and what I can do better the next. Since I want all of you wonderful people out there suffering a similar fate to have the greatest advantage possible in any endeavor taken on with a chronic illness I’m going to share my findings, so you don’t have to make my mistakes.
Plan, Organize, Research, and Plan Some More
I did more planning, organizing, and research for this two-week trip than I ever did for moving to a foreign country. Mind you this had nothing to do with setting an itinerary or buying tickets to this or that. The only things we had set ahead of time were places to sleep and the rental car. All of the planning and organizing and researching had to do with my illness. I researched the medical system and how a foreigner would access it. I looked into what kind of handicap facilities they had available; foreign countries don’t have the ADA, so you need to be self-sufficient. You have to consider stairs everywhere. I had to make sure my medications were going to fill at the right time so I would have enough for the trip and extra just in case. I checked airline rules to make sure I could take all of my medical devices in my carry on. Anything I wasn’t sure of, I looked up and printed out, because…brain fog!! Traveling with a chronic illness is a lot more complicated, you can’t just throw some clothes in a bag and walk out the door. You simply wouldn’t survive. Also, the better you plan for your illness the more comfortable you will be, the better your trip will go.
Make sure you get luggage with wheels, preferably four wheels. Don’t be afraid to ask friends and family to borrow anything you don’t own that will make traveling easier. Chances are they will be glad for the opportunity to help you. First you want to separate your stuff into two categories, items that you can’t go without like your meds, any medical devices, any electronics, camera, phone, wallet, passport, teddy bear, etc. This is your carry on. Never let it out of your sight. The other stuff, though it would be annoying, is possible to replace. When you check luggage, there is always the possibility it will go somewhere else, so keep that in mind. When you are chronically ill it’s difficult enough dragging yourself around, much less a bunch of stuff. With this in mind, pack LIGHT. Pack layers and don’t pack multiples of anything. Don’t just pack three pairs of pants, they should each have a different use. For instance, I packed a pair of scrubs pants, which feel like PJ’s but look decent, a pair of tactical pants (which are heavier, have lots of pockets, look like cargo pants, but have a stretchy waist, I’m all about comfort) and a pair of sweat pants for sleeping. I packed 2 T-shirts(thick and thin), long sleeve shirt, sweat shirt, sleeping shirt, and a pair of silk long johns. Also, keep in mind you will be wearing one of these outfits on the plane, wear layers because sometimes planes are hot, sometimes cold and go comfy! The only thing you can’t pack enough of are underwear and socks. It is always helpful to have some fresh wipes or even baby wipes in both your carry-on and your checked luggage so you can freshen up before the plane lands, it will really help you feel more alive to just clean your face and hands. Having them on your trip you can use them after long days just to quickly clean off the day and for days, you don’t have the energy to shower. Another great product for rough days to get the oil out of your hair is this dry shampoo. It is amazing, leaves your hair looking like you are fresh out of the shower and even works on my hair which goes down to my waist.
Other things that were immensely helpful, I bought a good water bottle that could do both hot and cold drinks. This was fantastic for having tea or water throughout the day. I also packed a ziplock full of good black tea bags and another with Splenda packets, so all I needed was hot water and I could have my tea anytime. You could do the same with instant coffee, Starbucks via is pretty decent. It’s a good idea to be as self-sufficient as you can if you are going to a different country. Another thing that is a traveler’s best friend is ziplock bags, there is no end to how useful they can be from holding things that might spill, to keep food fresh, to just keeping you organized. Pack both the little and the big ones a handful of each. Other countries run on different hours and sometimes you can’t find a restaurant and sometimes you’re traveling on a budget. A great trick is to pack a small collapsible cooler, and a couple utensils, then hit a grocery store and grab some cheese and meats and crackers and bread and munchies and use the cooler to store the perishables. I survived a lot on caffeine and sugar. Check to see if there is anything specific you should plan for in the country you are headed to, for instance, Scotland has midges, which are like mosquitos only half the size and twice as annoying. Their bites are terribly itchy and when we went Scotland was experiencing a bit of an outbreak, the only thing recommended to keep them away was Avon Skin So Soft, so that is what I packed. Finally, pack for emergencies, small first aid kit, matches or lighter, safety pins, sewing kit and a utility knife (if it’s legal in that country, it’s not in the UK).
Save, Beg, and Plead
While, yes, we have to save our pennies to travel just like everyone else, we also need to save up some meds. I’m not talking about your daily meds, I’m talking about the meds that control your pain, that help you sleep, that give you energy, etc. Anything that could give you an advantage on your trip. From the second that you have decided to travel you should figure out what is going to be useful to you and start putting aside a few pills each month. Just use one of your old prescription bottles like a piggy bank and whenever you don’t use your full dose put the extra pill in the bottle. Out of sight, out of mind and it will build up, even if it is only a few pills a month, it worked for me. I realize you might be thinking you won’t want to be dopey while traveling, and this was true for me. For the most part, I took my usual dose or less while traveling, but I was no end of grateful for the extra meds when I was paying the price after the trip. Also, you’re going to be pushing your body, so you are going to want to pack meds for every contingency. Pack vitamins to help you out, pack allergy meds, eye drops, cough drops, nasal spray, and cold meds, just in case. I didn’t and needed them ALL. Also, tell your doctors you are going on a trip, they may disagree with you, but ignore them, what do they know! Very little, we know this for a fact! The good ones will know it will be good for you. Ask those to help you out with a few prescriptions. Sleeping through the flight will really save you wear and tear, my pain doctor gave me some Xanax and boy did that knock me out. Also, there is a medication called Provigil or the newer one is nuvigil, it gives you energy. I used to take it when I worked so I had some left over, it really really helped. You can ask your GP for just enough for your trip. I felt like I was carrying a pharmacy and probably looked like it too, but there wasn’t a single med that I packed that I didn’t use and a few I had to buy. So in this case, you can’t over pack, but if at all possible, consolidate, all those bottles take up a lot of room. I ended up pulling off labels and putting multiple meds and their labels in one bottle, just in case customs got suspicious. I mean, I did have a fortune in pharmaceuticals in my bag.
Choosing a Traveling Companion
The reality is no matter who you are, what your health, your traveling companion can make or break a trip. Before I go any further I do want to say that I fully believe that we capable of traveling alone. It will take a little more courage, but it will also relieve some of the pressure of trying to keep up with someone else, especially someone who is healthy. As for a traveling companion, you want to try to find someone who matches the way you like to travel. If you like to make an itinerary and stick to it, then you should find someone who likes schedules. If you like to just go with the flow and let things happen then find someone who matches that. When you are chronically ill you need to be extra super double dog careful who you travel with because you need someone who you can not only basically live with for however long your trip is, but also someone who is able to deal with all the impacts your health will have on the trip. I don’t mean you need to find someone to take care of you as you travel, but you do need to find someone who is understanding, compassionate, and most of all capable of communicating. If you find someone that can just communicate, then they can just say to you, “I really want to hike up that mountain, how can we make that happen?” and you work it out. Likewise, you’ll be comfortable saying, “I’m exhausted, can we check in early and I’ll nap and you can take the car.” Also, when you are getting along and having fun you can chat at night about the day, unwind, have a drink, have a laugh, really, your companion will make or break it for you. I highly recommend talking at length before even thinking about traveling with someone to make sure that you will enjoy each other and be able to communicate your needs. Otherwise, you’ll wish you’d gone alone. (Roll cursor over pictures.)
Zen and Have Fun
You have spent a ton of time researching how to deal with all the worst case scenarios. You have packed with your illness in mind and all the worst case scenarios in your mind. It’s not surprising that you are probably feeling anxious about traveling. Now you need to remind yourself that all this work you have done is so that you will have the best trip possible and that even if something does go wrong you will be prepared and it will only be a minor bump. Spend some time looking around at the fun things to do and see where you are going. Imagine yourself there having a great time. I was worried that I would be frustrated that my illness and lack of energy would stop me from doing too much and I would get frustrated. I decided that just being in Scotland, wherever I was, I could sit in a pub or coffee shop or even a meadow and watch the world and I would be happy. This was true, I was happy just to be there. Everything was beautiful. I went on short walks by myself many times and just reveled in the fact I was ‘home’ again and it was glorious. We also use Airbnb and had some fantastic experiences. The unique thing about Airbnb is that you can not only book a lovely place to stay but if you really read the reviews and you look out for the designation of super host then you are also booking some fantastic company. When I lived in Scotland it was the people, the culture, the way they thought and treated each other that made me love the country so very much and Airbnb gave me a way to spend my vacation with the Scots, ones that were eager to meet and talk to travelers. We sat and had tea or wine and had long talks about everything from the arts to politics to higher education to the differing medical systems to how different cultures deal with grief and round again. The hosts really went above and beyond to make us feel welcome and comfortable, gave us rides, gave us meals, gave us information, gave us their time and companionship, and had lovely animals to cuddle up with and their homes were beautiful and the land was stunning. Not only was it economical, but it’s so much more of an experience than you will ever receive in a hotel or even a B&B business. If you ever go to Scotland I can’t recommend Pat and Fedor in a remote and stunning area between Glencoe and Inverness and Karen and Elaine just outside of Glasgow enough. They were the highlights of my trip and you can bet when I go back to Scotland I will be staying with them. They better watch out, I might just move in! You will enjoy yourself too, all you have to do is allow yourself the freedom to be happy with the simple things.