(Travel can be both refreshing and exhausting – even when you’re healthy. After I saw that Meredith had travelled extensively despite having ME/CFS I asked her if she would write a blog explaining how she did it. Thanks to her for being willing to do that. (The images and the quotes in the body of the post were provided by me. )Cort).
I’ve had CFS/ME since 1987. In the early years, as so many of us do, I tried hard to keep working, and my condition deteriorated. After I was let go “for malingering,” I began temping, first full-time, then half-time, then quarter-time. By the time I finally gave up and dropped out of the workforce, I was resting all week to have the strength to work for four hours.
I put the next seven years of my life on hold, slowly building back my stamina through pacing, hoping for a cure. But when no cure came, I realized that I had the rest of my life to live, and that I’d probably be living it with CFS. So I started to figure out ways to do some of the things that I’d been putting off “until I got well.”
Today, twenty years later, I still can’t hold even a quarter-time job. At home, I mostly divide my time between my computer and my bed, though my husband and I do go out to eat two or three times a month. Nevertheless, through careful planning, I have done quite a bit of travelling on my own. The chances are, then, that you can too.
I’ve taken three solo overseas trips in the twenty years since I made up my mind to travel anyway, a month-long trip to England, a three-week trip to Scotland with a stopover in Iceland, and a three-month trip to New Zealand. I’ve also spent a week by myself in Las Vegas, and taken a couple of solo cruises.
I have a whole collection of Fodor’s and Frommer’s; I bought them for daydreaming purposes for years. Meredith – from her Forum Post
Plan Your Itinerary So That You Travel Slowly. As with everything in CFS, pacing is the key to travel. You can still do a lot, but only if you do it slowly enough. If, like me, you’re not well enough to work, cheer up; at least that means you don’t have to worry about saving up vacation days. If you can and do work for pay, realize that you’ll need to budget more time for a vacation than you would have when you were well.
In New Zealand, I spent four nights in each place on my itinerary: one day to travel between towns, two full days to sightsee, and one day to rest and do laundry. In Britain, especially on the shorter trip, I cut out one of the sightseeing days.
A resting-day in each location is essential. Not only will you need to do laundry, which you probably won’t be up to doing on a day when you’ve done anything else, you’ll need the time to recover.
It can be hard to make yourself take it, particularly if you’re staying in an expensive city like London. If you can’t bear to think of paying well over a hundred dollars to stay in your room all day, then plan a short and simple excursion for that day, something within walking distance.
Then, if you find you don’t need a full day’s rest, you can still get in some sightseeing once your laundry’s done. And if you do need to rest after all, your room, and your bed, will be there.
Plan ahead, but don’t book tours in advance. Since you can’t always know how much energy you’ll have to spend, try not to pre-book activities. I made the mistake of pre-booking several day-trips in New Zealand. Some of them went well; I had to cancel others.
Scout out the lay of the land online beforehand. For both lodging and sightseeing, use online resources to check not just distance but elevation. I forgot to do this in Auckland, and I found that the hostel I was staying at was atop a steep hill. Even if you don’t have arthritic knees, hills take energy to climb.
Plan to see two attractions per day. But realize that, most of the time, you’ll actually only see one of them. If you plan on just one attraction, you’ll fall into the “that’s much too little to see for the money I’m spending on this trip!” trap.
Chart out exactly how you will get from place to place in order not to waste energy getting lost.
Likewise, if something goes wrong with your well-laid plans – say the bus schedule has changed or the primary attraction proves to be unexpectedly closed — you’ll still have something interesting to do with your day.
But what about spontaneity? If you can’t stand the thought of being locked into a schedule, plan a week’s worth of daily activities for each location. Then you can pick the ones you’re in the mood for once you’re on the spot.
Dress for the weather – Plan to wear layered clothing: that allows you to respond quickly to changes in the weather. A lightweight, waterproof jacket is always useful; even in the desert it will help to protect you from the sun. Hats, too, will shield you from both sun and rain. Near the water be sure to wear one that fastens with a cord beneath your chin, or the wind will blow your hat away.
Let the calendar work in your favor. If you can tolerate cold weather, it’s a good idea to travel to Britain in winter. When it gets dark by 3:30 p.m., you’ll be more than ready to go to sleep by 5, and no one will think it peculiar. And then you’ll be up bright and early the next morning for breakfast.
Be sure to check the drug laws in all the countries you plan to visit. DMAE, for instance, is illegal in New Zealand. You may be able to get permission to bring a small supply into the country for personal use – I did – but the time to negotiate this is by e-mail, in advance, not in the airport or cruise terminal.
Keep your supplements in their original bottles when you pass through customs. Make up daily and weekly dose-packs as soon as you’re out of the terminal.
Plan ahead to ensure your supply of supplements. On a typical day at home, I take 96 pills: 31 in the morning, 29 at night, and 12 really essential ones three times more during the day. Guidebooks written for the comparatively healthy advise taking all your daily medicine with you on trips, but unless your regimen is much simpler than mine (or you are much stronger), that won’t be possible.
Look critically at your regimen. Naturally, you’re not taking pills for the fun of it, and everything you take has value, but some things are for your long-term health, and others just help you get through the day. Which ones must you have to stave off physical and cognitive crashes? Which ones must you have for other reasons? On my New Zealand trip, I overlooked iron because I didn’t need it for CFS, but that let my anemia worsen dramatically. Luckily, iron was readily available once I finally realized my mistake.
Check to see which of your supplements, if any, will be readily available in local stores. Pharmacies often advertise on the Internet these days. If necessary, e-mail them to ask whether they have what you need. Don’t be too dismayed if they don’t have what you need; just realize that your carry-on baggage will be, of necessity, almost entirely filled with supplements.
Consider Arranging Medicine Caches For Your Trip – If you have more supplements than you can possibly carry, you’ll need to arrange medicine caches at points along your trip.
If you’re lucky enough to have friends in the country you’re visiting, mail half your supplements to them and plan to visit them halfway through your trip.
If not, arrange to have your medicines shipped to you and held at a local post office. In the U.S., that service is called “General Delivery”; other countries use the French term “Poste Restante.” Again, be sure to check all applicable drug laws before mailing your supplements.
The important thing is that I’ve done some of the travelling I’ve always wanted to do, within my limits. No, I’ve never made it to India to see the Pink City of Jaipur or ridden the Trans-Siberian Express across Russia, and I probably won’t. But I have been to Britain twice, and in 2010-11 I actually *did* go to New Zealand by myself and spend three months travelling all over the North and South Islands, from Milford and Doubtful Sounds (and Dunedin) to Cape Reinga. I didn’t zorb or jet-boat or ride a zip line or do whitewater rafting, but I did make the trip, and it was well worth doing. Meredith from a forum post
If you have access to saline IV’s consider taking one the day before you leave to boost you up a bit.
Travelling by Air
Arrange in advance for a wheelchair. Airports are huge! Not only will a wheelchair save you a lot of energy you’ll often get to go to the front of the line if you arrange for one ahead of time. You may also be able to board the airplane first.
Arrange for oxygen if finances permit and if your doctor agrees it would be helpful for you. This will automatically mean that you will get a wheelchair to the gate. Don’t be stupid and decline it the way I did once.
Travelling by Train
If your trip is more than a few hours long, book sleeping accommodations if you can. On Amtrak or Via Rail, ask the attendant to leave your compartment in night-mode. When you’re well enough to want to sit up, go to the observation car, the dining car, or the café. And when you’re not, a bed will be ready and waiting for you.
Going on a Cruise
On a cruise many of your travel problems will be solved for you. (That’s what you’re paying for, after all.) Food and drink will be readily available, and your bed will be comparatively close by at all times.
There will be a long wait at boarding, though. Plan for that and take supplements right before you go to the cruise terminal. Be sure to sign up in advance with the cruise line as a passenger requiring special help in the event of an emergency.
Expect long waits for the elevator. Some ships have benches near the elevator banks; others don’t. Therefore, if you can bear the noise, try to get a room near the elevators, so you can retreat to bed easily if the wait becomes too much for you. Carry a supplement-dose to dinner, and ask your waiter for an extra glass of water or juice in advance.
Once You’re There
It was a big moment for me when I first realized that I *could* go to Britain *anyway*, even if I was sick–that some things did have to stay dreams, but others didn’t. Meredith from a forum post
Hotels and Places to Stay
Handicap-accessible rooms – If these are available at your chosen accommodation, book one. Often there will be a detachable shower wand in the bathroom, or even a bathing seat, which helps a lot if you have orthostatic hypotension. They are also likely to be on the ground floor, which is a good thing (see below).
Ground-floor lodging – Always try to arrange for ground-floor lodging, unless you’re staying in a place that has an elevator. That doesn’t necessarily take an overseas phone call; many B&B’s have e-mail. Ground-floor lodging will let you get in and out of the hotel quickly, and if there’s a free breakfast you’ll be closer to it (though British B&B’s tend to serve their free breakfasts in the basement).
Refrigeration — If your medicine requires refrigeration, be sure your lodging choices allow for that. B&B hosts will usually be willing to store a bottle or two in their refrigerator. At hostels, label your medicine clearly (add a “Please don’t take this; I need it!” note if you’re worried) and tuck it away in a corner of the communal refrigerator or freezer. In winter, of course, you may just be able to leave it on your window sill.
Eye Masks and Earplugs – If you like to sleep in darkness, an eye mask will help ensure you aren’t bothered by lights in the parking lot or the hall. Likewise, earplugs are small, lightweight, and essential, especially in youth hostels. As an alternative if you find earplugs uncomfortable, there are several good “white-noise” programs available for smartphones and small tablets.
Finding Rest Stops
It’s a matter of pacing; I knew I wouldn’t be able to do anything athletic and I knew I’d only be up to sightseeing two days out of three, so I stayed four nights in each location and did laundry on the third day. I carried a duffel-bag full of six weeks’ worth of herbal supplements and I stored another six-weeks’-worth with a friend I’d met online. I self-published a book about my experiences, *New Zealand from Bench to Bench*, which, alas, sank into the pools of obscurity without a splash. On the plus side, I did earn $10 per night by writing reviews of the places I stayed for a hostelling website. Meredith – from a Forum post.
Benches are the staff of life. There’s a reason I called the book I self-published about my New Zealand trip New Zealand from Bench to Bench. The best way to stay alert and comparatively energetic is to stop and rest. And when orthostatic hypotension strikes, you’ll need to sit down very quickly. Some museum and gallery maps will actually show benches. If there is an associated restaurant, it will have seating.
Worst case, at least in the Western world, if there are restrooms available (and those are usually marked on maps!) you can always go and sit in a stall for a while. If you’re going to Britain, be sure to write away in advance for a RADAR key, which will let you into a network of restrooms for the disabled. Of course, if you’re lucky enough to be driving, you can always go and rest in your car.
Camp-stools — If you are small and light, and if you don’t usually use a cane when walking, you have another option: a camp-stool. It’s a cane that unfolds into a seat, and, if you can use one, you’ll always have a seat wherever you need it.
I’ve never had much use for a camp-stool myself, as they’re typically rated for half my weight. Besides, the only time I ever tried to carry one, back when I was much thinner, I found it was far too cumbersome when folded to make a good cane. But I have often seen people sitting on them in lines, and I’ve greatly envied them.
Water – Whenever possible, carry a bottle of water with you. Of course, you should also always have a dose of essential supplements with you, but I presume that goes without saying. But your dose will do you little good if you have no way to take it. If you need to drink up your bottle during the day, buy another one as soon as you can.
Snacks – Carry small, light-weight snacks with you to regulate your blood sugar and energy levels, especially if you’re diabetic, pre-diabetic, or on a low-carb diet.
Scooters, mart-carts, and wheelchairs – At least in the U.S. and Canada, larger stores and shopping malls will often make personal wheeled transport available to their customers. So will beaches and amusement parks. Take advantage of this! The more you stay off your feet, the more alert you’ll be. You’ll be able to travel farther and see more.
Remember that some things are worth crashing for. In CFS, everything is a trade-off; if you wear yourself out penguin-watching in Oamaru you’ll be in bed for most of your next stop in Kaikoura. Realize that, and make on-the-spot decisions accordingly. (Yes, the penguins were worth it.)
Back at Home
When you get back, be ready to take it easy for a while. Even if you’ve been very careful, your trip will have drained your energy. If you have a job to worry about, come home at least two days before you’re due back at work. If not, plan to recover in a more leisurely fashion.
If you have access to saline IV’s you might want to take one. Likewise, if you have a portable oxygen concentrator at home, you’ll need to schedule longer sessions with it for a while.
My rule of thumb is to spend at least half as long in recovery mode as the trip itself lasted. “Recovery mode” entails not pushing myself, staying in bed a little more and at the computer a little less, and definitely not going on any more trips.
Travelling twice in the same month is asking for trouble, even if one of the trips is just for a weekend.
But take heart. Even while you’re in recovery mode, you can always spend time at your computer, planning your next trip!
Have some suggestions? Please provide them in the comments below.
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