Traveling with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is one of the biggest challenges I’ve ever faced (it comes in second to living with CFIDS, to be honest). For those unaware of CFIDS, it is a neuro-immune disease, to which there is no cure (or real treatment). You constantly feel like you have the flu AND have been run over by a semi truck. Your body hurts all the time, your brain is fogged, and you have to carefully ration your energy (called living within the envelope). You can make plans, but never know if you can fulfill them, as your pain and energy levels can change in a minute. And no, it isn't the same as being tired all the time.

And so you have CFIDS - and you love to travel. While it is difficult (and may make you sicker for a while), it's well worth doing. Your traveling companions need to be aware of your needs and help you as much as possible, so that you can get the most out of your travels. But there is much you can do to prepare beforehand, and ways to act while you’re traveling, that can help, as well. And as with anything when you're living with CFIDS, space out your energy expenditures. You might only be able to travel once a year (or less, or more) - listen to your body!

Tips for Traveling with CFIDS

Plan ahead as much as possible

If you can do the bulk of the work beforehand, at your own pace, you will be able to control the energy expenditure for this process. Figure out routes that will save you time and energy. Research the restaurants you would like to eat at, and the grocery stores where you can stock up. Figure out if attractions are worth visiting, and if they are accessible to you. Learn any phrases you will need in a foreign language (and more, if you’re able) – and download a language translation app to your smartphone or ipad. Something WILL come up that will derail your travels – be as prepared as possible so that you can minimize the impact.

Be realistic of what you can do

Be honest about what you can and can’t do – you might be able to do one big thing a day (or some days, none). Seeing a little bit of a place is much better than seeing a lot of the ceiling in the room in which you’re resting, day after day. Ask locals for the best off the beaten path things to see and do – they will be less crowded, and you will be able to experience them at your own pace. One of the best times I had in Ireland was at a quiet library, talking with the librarian about books we loved, swapping library stories, and gathering information on great places to eat and a hidden beach.

Don’t be afraid to ask for help

Whether it is a wheelchair when you’re too tired, a rest from traveling, or help with something as simple as helping you place a pillow behind your back in the car – people will be happy to help you, with whatever you need. I know it is difficult to ask for help - it goes against all that we strive for, in independent living. Don’t try to pass as abled – it will only make you sicker. We all know this, do this, and know we shouldn’t.

Events

Many travels are around events – holidays, weddings, reunions. This is a great time to make sure that you tend your body as best you can. If you need a daily rest period, make sure to build it in, even if you would prefer to stay and talk (this is me, a hundred times over). You’ll emerge refreshed and able to interact well, instead of in a fuzzy state where you don’t remember a thing, and you probably didn’t have any meaningful conversations. Beforehand, ask the host (who may be your mother, or an aunt, etc.) for a quiet place to rest. They’ll be happy to help – remember, they want to see you and talk with you, too!

Maintain your routine

Be sure to pack your vitamins and medicine, for starters. But if you do well with a super green smoothie for breakfast, then find a way to get a super green smoothie for breakfast, instead of loading up on pancakes or nibbling a granola bar in the car. As mentioned above, if you need a daily rest period, then make sure you get one. If you are always cold, be sure to pack enough warm clothes to help. Don’t forget your pain meds (or forget to take them). If you need a heating pad, bring one! The list goes on and on, and differs for each person, but it is worth noting what you do every day to make life easier for yourself (and less painful), and keep doing it, even while traveling.

Let go of what you need to do

Pay for help – whether it is travel planning, or hiring a guide at your destination. One of the best things I ever did was to hire a driver in Paris. The metro was too difficult for me, and driving was out of the question. It made my visit there a great deal of fun – and I had a safe, reliable transportation option (with travel advice from a local!).

Accept help. If someone can help carry your bags, make reservations, bring you back to the hotel for a rest, etc., take it! Your body will thank you.

Do you really need to climb this?

Don’t try to do everything

This will be the hardest to do, for many reasons. You will want to see and do everything – you’re out and about, and it’s so enticing (so different from life at home)! It may be rare for you to travel, and so you want to squeeze every last ounce of goodness out of the journey. But that is exactly why you should underplan - and underdo - each day. You’ll have time to rest, and also allow for serendipity.

When you look at those top 10 (30, 50, etc.) lists of things to see in each place, look carefully at each item. Are you totally interested in seeing a particular one? What about that destination appeals to you? Find your passions, and work those in. It might be a quilting exhibit at a university, or a special painting at a museum. It might be a restaurant, or some incredible landscapes, or you just want to sit and drink coffee in Paris. Cut down on what others say you should see, and work out what you totally want to see.

Maybe something small and easy will entrance you. I remember getting up early while we were in Ireland, and just sitting outside. I was watching the seals cavort, the sun rise over the Beara Peninsula, the heron fly by, the fishermen head out for the day; hearing the birds chirping - and me drinking hot coffee and nibbling on a few fresh blackberries I’d just picked. To me, THAT is the essence of Ireland – not climbing around Bunratty Castle (although I loved it), or the great seafood chowder, or the incredibly beautiful scenery – but peaceful early mornings, just being. Relish these times!

Watching a sunrise in Ireland - low energy, high reward

Communicate with your travel partners

Communication is key. Once your travel partners know your limits (and we know that these limits are always changing, minute by minute), they can help you and also choose to do other things, while you rest. If they know that loud music or noise makes you sick, they can keep the music in the car off, and try to find quiet places to eat, shop, and rest. They will also know that no matter what you WANT to do, they should help guard your energy and time from others – and yourself. I always want to push myself, to experience all I can; my husband reminds me and reigns me in when I get that super tired look in my eyes. Sometimes, we’re our own worst enemy.

Accommodations

We always rent homes or apartments when we travel, for several reasons. There are spaces away from common living areas, in which to rest (instead of one hotel room, where rest is nigh impossible with a family). There is a kitchen, so you can eat when you want, without having to expend the energy on being in a restaurant. You can also have a variety of healthy snacks available (especially those that need refrigeration, like yogurt – so good for your stomach). There is often a yard, so your kids can play outside while you sit and watch (and rest).

Transportation Tips

Car

Because I also have mobility disabilities, we always rent a car. But this is common sense advice for travelers with cfids. Cars can take you right to the door, and you won’t have to spend energy walking. You also won’t trip on uneven pavement (which always seems to find me!). You will be able to save your energy for the place you are going, instead of spending it on getting there. Pack enough pillows so that you can sit comfortably, stop at every rest stop to move around a bit so your muscles don’t cramp up, and create a restful car environment. If you try to do too much or drive for too long, you might suffer extreme fatigue and lose focus on the road. While you can usually snap out of it with a break, more severe cases could lead to accidents, so you’d need to find a car accident attorney to help you. It might be annoying to your travel mates to not have road trip music blaring, but it’s worth the quiet for your health. Most countries accept your handicap parking placard – do some research in advance to ascertain if this is true where you are headed.

Air

Take all medications in your carryon. Bring earplugs or noise canceling headphones. If you can, bring a small pillow to ease your neck.
Ask for handicap transportation to and from the gate. This will not only help with your pain and fatigue, but help you avoid huge crowds, pushing, and noise.

Book direct flights, or as few layovers as possible. It’s worth paying extra to not have to deal with boarding, time delays, crowds of people, germs, and extra steps.

It might seem like an enormous undertaking, traveling with CFIDS. And, to be honest, it is. You might head into a CFIDS crash (I’ve been in one the last few months), because of all the extra energy you’re expending.

But it’s worth it! To explore the world, on YOUR terms, is the best gift you can give yourself. Who knows where the road will lead?

Travel with CFIDS - who knows where the road will take you?

Resources on Disability Travel here at Wandering Educators

The Imperfect Traveler’s Guide to Traveling with Pain

Barrier Free Travel

Traveling with a Mobility Disability in Ireland and Scotland

Solo Travel with a Disability

The Ultimate Accessible Road Trip Guide

Finding Unexpected Joy in Turkey

Flying Abroad with a CPAP