(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.
- Take the Poll : How did your energy hold up during your last vacation?
I now go on 2-3 cruises per year and I love them. As you said, food is all organised. It saves a lot of energy if you don’t have to think about where you will eat, or traipse all over town looking for a place that is open.
I research every port on the internet and list all the possibilities. I hunt for maps. I check to see if there are Hoho buses (Hop-on-hop-off), though I rarely use them. On my first cruises I used to try to see several things in a day. Now I only go out for about 3 hours per day and mainly try to enjoy the ambience. I pack small plastic bags and then I can take food with me from the breakfast buffet. I can sit on a bench or a kerb and eat if I feel the need. I also fill a couple of plastic bottles with ice from the machines in the buffet, and then top them up with water. That way I have cold water all day.
I generally find that I wake on one or two days and realise that I won’t be doing anything all day. I go back to bed. Sometimes I manage to get up for the evening but sometimes not. That’s okay. I can say ‘Valencia? Yes, I’ve been there but I had to stay on the ship all day. I looked at the Grand Prix track through the window while eating afternoon tea.’
I somehow find the energy to dance most evenings, though 12 dances spread throughout 5 hours is probably my limit. I travel on Cunard ships, where there are Gentlemen Dance Hosts.
It’s rare for me to get up before 11am on a sea day. I have been known to sleep until midday. (One thing I love about Cunard cruises is that there are lots of lazy sea days. An 8-day Transatlantic was not too many sea days for me!)
I certainly recommend cruises as a great way to travel with ME, for those who are able to get around.
Diane I have often thought that a cruise would be the way to go if one could just get to the boat. It seems like folks with CFIDS who can do things don’t talk about inexplicable “flu” days but fatigue that they can control with pacing.
Home exchanges could be another idea. I know folks who do this and it works out well and that way you aren’t traveling day to day but have a home base.
Meredith, it takes a lot of courage to travel alone even when healthy – kudos for doing it and making it work.
In the U.S., Amtrak goes to most cruise ship ports. Of course, then, the trick becomes getting to the train. 🙂
I’m a believer!
Excellent article. Thank you. You have given me a little hope that my life is not stuck in supine mode forever.
Interesting article, though one piece of information surprised me: that d-ribose is illegal in New Zealand. This is not the case – they sell it over there! I’ve usually taken my own, just for convenience, but it is widely available in health shops.
I would also add a couple of things:
1. If you use a TENS machine, you will need to have your doctor fill in a medical equipement form and fax it to the airline in advance of your flight in order to use it on the plane.
2. If you are a blue badge (UK) or disabled parking permit holder, it is worth checking if they run a similar scheme in the country you are visiting. I managed to arrange a permit to use in NZ by emailing the people that run the NZ scheme in advance (I can’t remember now who runs it, but found it through a google search) for use while I was there, provided I agreed to post it back to them on the day I left.
Thia, you’re right; I meant DMAE, not D-Ribose. I had misremembered, and I have corrected the article above. Sorry for the confusion.
I would love to travel but can only walk very short distances. My husband pushes me in a transport chair when we go on our nearby twice a year getaways. I also get dizzy in restaurants or around a lot of noise. A trip for me would involve going to a quiet area and hiring help to push me, bring in food and drive me to a close sight on days I felt up to it. I did know an MD who was out with a hefty disability. She packed her wheelchair and traveled much as I described. I do envy your ability to do this and am glad you can!
Patients bedridden with severe ME can only dream of this
likewise those of us on government benefits
Does anyone have trips on travelling with children with Me? Cruises are not a possibility for us as i get sea sick.
Yes guys, you are right! I have been bedridden for many years, and am also on benefits. Even with these very difficult conditions, I managed to very slowly improve my condition, and also make difficult choices to save money to realize my dreams. Or at the beginnind, dream that I could dream of one day realizing a dream. I started very small. For years, my dream was to walk to the stop sign at the end of my street, about fifty steps. I was in a wheelchair at the time. It took me years, but I did it. Then, over years, perseverance, hope, determination, I started to hike a bit. Last year, I realized my lifetime dream to go paragliding in the alps. Of course, if the trip was extremely difficult and I crashed for months aftwards. But it was so amazing. And it is forcing myself to go on that give me the energy to do more every year. I have not recovered. I don’t know if I will recover. But at leats, Im gonna try to realize all my dreams. I remember that reading the why cafe second book was fun, and gave me inspiration. Good luck guys!
I’m not bedridden and I can’t imagine doing this. A doctor visit, go to the pharmacy and pick up my Rx, get some food at the healthfood store and I need a day or two to recuperate. What kind of meds and supplements are you on? I know everybody is different but this sounds unbelievable.
Usual disclaimer: I’m not a doctor. These are just supplements that have helped me over the years.
C0Q10, L-Carnitine, Acetyl L-Carnitine, Creatine, D-Ribose, Niacin, DMAE, Schizandra, Malic acid/Magnesium, Soy Lecithin; also a couple of proprietary cognitive supplements: Thinker’s Edge (Pro Health) and True Focus (NOW), plus Gotu Kola and Siberian Ginseng.
I also take other supplements for other reasons: general nutrition and other health problems, but I’ll skip them.
I have many supplements “prescribed” to me by a Naturopathic Dr. who is wonderful. Thanks to her, I can stay awake longer & focus once in a while :-)) I also get IV vitamins from my regular MD 2x per week. The multiple of vitamins is not covered but my real prescriptions and the IV are. Despite it costing so much, it’s been well worth it. I also pay for a Pilates Reformer personal trainer. I try to make it 3x a week even though it puts me to bed for a good portion of the day. It has helped my strength & balance. I was getting really bad. I can’t work or schedule myself to be “up” for anything but I have a wonderful family.
Donna, your days sound like mine–I’m not bed-ridden, but with the help of painkillers and Adderall, I can get out for an hour or so if I push myself–easier to stay at home. I try to find solace that there are drive-thru banks and pharmacies. I’m also thankful for walk-in hair salons a couple a time a year. (Tip–if you have any hair left–I have Hashimoto’s and have lost a lot–let it grow out and wear a ponytail. Pigtails are even better; more comfortable when lying down.) My last vacation was in 2001, when I helped chaperoned a high school trip to London (before my health went downhill); I cherish those memories. My husband and I have to move across 4 states for his job sometime in the near future, and the thought of the preparation to relocate is causing me great anxiety. You all know it’s almost impossible to make friends, much less have a social life when you’re isolated, but I’ve found being alone with my dog is much less stressful. Before my last vacation, I finished my Master’s Degree and was looking forward to a new career. I’m not bitter but I hate feeling useless, sad and guilty for a lost future and try to take one day at a time. The internet is what keeps me sane.
I went to London and Paris with my husband last year. It had been 37 years since I had been to Europe (25 with CFS/ME), and I had given up on travelling. I never thought that I would make it back to Europe. I’m so glad we made the effort. My husband pushed me in a transport chair. Public transportation was not handicapped accessible — he carried the wheelchair up and down flights of stairs in the Tube station in London. That was an ordeal. We found busses to be easier to manage with the chair. I gave in and we took a cab several times with the chair because it was easier — but up to $80 USD for one cab ride in London. Next time we go, I will save $1000 first just for cab fare! I found myself incredibly energized by the trip, and it made me feel better. It blew my mind that I was even there, and I became very happy. I broke out of my sad victim mentality and it was empowering. I owe a debt of gratitude to my husband, who made it possible by pushing my chair through Versailles, the Eiffel Tower, Westminster Abbey, Musee d’Orsay, etc. without complaining. I really would like to bring an electric scooter next time to save him the trouble, but they don’t allow them on public transport in Paris. My husband is almost 62 — at some point he won’t be able to push me, so I want to take advantage of our relative youth now. It was definitely worth it! 🙂
Wow Cyber Cathy – that’s inspiring :)..
Thanks for the article. I live in NZ and buy D-Ribose from the health shop so I’m just confirming that it is legal here. I don’t find it helps at all though. Vit B12 and oral folic acid seems a better bet
You’re quite right; I meant DMAE, not D-Ribose. I had misremembered, and I have corrected the article above. Sorry for the confusion.
Glad you are able to live such an active life – to do what you do your certainly have a different kind of ME than what I have – I am lucky to make it into town – 20 minutes away – once or twice a week to get food and other supplies.
Well done, Meredith – both the article and your courageous adventures!
I am quite intrigued by the volume of medicines and supplements you say you have to take and I would truly like to know what they are.
(Aside to Cort) Is there a single area on this site that lists all the meds and supplements for each of ME/CFS and Fibro. If not would that not be a useful addition? Thanks.
Usual disclaimer: I’m not a doctor and these are just supplements I take because I’ve found them to be helpful.
Note that not all of these are for my CFS; some are for other health problems or for general nutrition.
Four times a day:
CoQ10, Acetyl L-Carnitine, L-Carnitine, Creatine, D-Ribose, Niacin, DMAE, Schizandra, Malic acid/magnesium, Soy Lecithin.
Twice a day:
Alpha Lipoic Acid, L-Glutamine, Cranberry, N-Acetyl Cysteine, Gotu Kola, Pyroglutamic Acid (but I’m phasing it out; haven’t found it helpful), Potassium, True Focus (NOW),
Siberian Ginseng, Vitamin C, Cinnamon, Thinker’s Edge (Pro Health)
Once a day:
Iron, Chromium, Calcium, DHA, Shark Cartilage (phasing it out), and a multi-vitamin.
Not yet there isn’t Will. We have a section on drugs and some supplements. Hopefully someday. If you’d like to take that on – I’ll provide the space – just let me know.
Is there any way a pharmacy can combine appropriate supplements so you don’t have to take 20 pills a day? Some have to be on a empty stomach, some have to be taken with others to be more effective; I find it all confusing. My doctor looked at my supplement list and said some I didn’t even need; for example, she advised me to drop the selenium–that’s one of the most important adjuncts to healing Hashimoto’s thyroiditis! So I ignored her anyway 🙂
My compounding pharmacist does this – custom formulated supplements based on blood tests. But it’s expensive – so I take as many as possible from regular suppliers. Take a look at http://www.nutrichem.com/pages/body-chemistry-balancing. Some of my strangest symptoms have been helped with this, like burning feet.
I have the newest volume of the book “Life Extension Disease Prevention and Treatment”. It refers to most of the supplements and scripts I take.
I must admit that even with all the improvement I have had in coping with my fibro in the last 2 years, I still have no aspirations at all for international travel. This is one thing that falls into the “too daunting” category. But your post on the subject is very interesting, I see potential in it.
One problem is that progressing my life forwards as I want to, is going to need income and savings, and I am getting somewhere at last and don’t want to “blow it” on luxuries like overseas travel. For example, I am desperate to own my own home as free of debt as possible by the time I might be too old to work any more, and this takes priority for me over a lot of other things it would be nice to have and do.
Good luck on getting that home paid for Phil!
I so admire you for the amazing effort you have put into making your dreams come true.I would love to get out this bed and do exactly this however even following the best advice of Drs I am still a long way off from where I would love to be.We had planned a trip to South Africa this December and I was excited and determined to see it through.It now seems it may not pan out for me.Orthostatic hypotension is something I struggle with greatly perhaps even leaning toward (POTS).This symptom is intensified in hot weather.SA in December will be Summer and If I have been struggling with NZ heat in Summer then SA heat is going to be way more worse.(I am originally from SA).You can fry an egg on the sidewalk,get into the shower,get out and be dripping wet shortly after drying-that’s the effect of the humidity there.I most certainly do not want to go on holiday in Winter.
I will keep the hope alive….until then I read all the travelling blogs I can,to enjoy the world through other travellers eyes!!
This is cloud-cuckoo land; I wish I was well enough to have even a half-day outing.
I wish I had some-one to do all the ‘donkey work’ for me – making arrangements, wheel-chair pushing, etc.
After more than 20 years of M.E. I wish I could afford to travel. Where does the money come from for several weeks of foreign holidaying?
It’s always the fortunate ones who tell the rest of us how easy it is.
I agree with you. As I read this, I found myself getting more and more angry. I have been sick for 30 years. I certainly don’t have the money to travel.
Those of us too sick to work and who aren’t married to someone with money certainly don’t have the resources to spend on travel.
This article is SO out of touch for the reality most of us experience. Most of us do not have the money to travel, we don’t have someone to go with us to help out, and we are not healthy enough to travel.
This illness has devastated my financially!! This article feels like a slap in the face.
I have no reason to doubt that you’ve been sick for 30 years, and that you don’t have the money to travel.
I’ve been sick for 28 years this September, and I do have the money to travel, thanks to a lot of hard work on my husband’s part.
From what you tell me, you and I have both been too ill to hold a regular job, even a regular part-time job, for about the same length of time. We’ve been ill all that time with the same illness, an illness that has drastically changed both our lives.
So why are you presuming that the life you are living is “the reality *most of us* experience” [italics mine]? Some people certainly do. Several other people on the thread have told me that a life much like yours is the reality they’re experiencing. But “some” is not “most.” In this thread alone, about the same number of people have told me that their lives are enough like mine for my post to be helpful to them.
But I’m sorry my post isn’t helpful to you; I wish it could be.
It’s hard to watch others travel and not be able to. My husband went to Europe with our sons twice on their high school choral trips, and I stayed home, so sick during one trip that I couldn’t speak. I had to hire a student to bring me food in bed because I was too sick to even walk into the kitchen. I had to type my instructions to her instead of speaking.
I read Toni Bernhard (who has CFS)’s book How to Be Sick — A Buddhist Approach for Those With Chronic Illness and Their Caregivers. In it she speaks of mudita — a Buddhist practice of “taking joy in the joy of others.” When my sister goes to Australia — *again* — instead of getting angry, jealous, and feeling bad, I shift into mudita, and can feel happy for her. It’s a really valuable practice. Since my sister is a world traveller because of her work, it has really come in handy. I try it with everyone who travels.
I gave up and decided I would never go abroad again. I bought a large TV so I could watch travel shows on it. I literally just gave up on any dreams of travel. I am too sick to work. Then I got lung cancer, even though I am a non-smoker. It put an urgency on my life. I said, “Let’s go, life is just too short — and I don’t know what will happen to me in the future with the cancer.” So we went to London and Paris last summer, and sure, it was tough with a wheelchair and I had to rest a lot. I crashed when we got home, for 5 weeks. We charged the trip on a credit card, and will be paying it off for the next few years, probably! But I’m really glad we went, and that my husband could push me in my wheelchair. Even though we charged the trip and are still in debt from it, it was worth it, and made me very happy.
Cyber Cathy I too thought of Toni’s book and practicing mudita. It’s so helpful to take on the joy and happiness of others, otherwise you take on even more misery. I wonder if those who find Meredith’s post troubling hold anger for everyone who can travel or just don’t expect or want it on a CFIDS blog? It’d be interesting to get the demographics of the readers of this blog as to levels of functioning. Folks need to keep in mind there’s a lot of variation…
I understand your upset. It’s painful to read about others who have so many more opportunities. Many people have tragically lost their finances to this illness or in too poor health to travel.
I can’t think of any good answers. The blog is meant to provide hope for those who do have the resources and the health to travel. For everyone else I recognize that it can be painful reminder of how much has been lost.
I hope we can all find meaningful relief some day..
I’m sorry your days are so bad. I too believe in deriving joy from others. I do my best not to complain. I only make a statement when I need assistance from my family. They are aware of my problem and know I want to do things myself when I can. We choose to live, love and laugh the best we know how. My life is reasonably comfortable because I worked on investing and saving money while I was working, before I got sick. I pray you can find a peaceful place in your mind and find enjoyment each day. I like to use a notebook to write my good and bad on opposite sides of the pages. When I have a really lousy day, I can refer back to the things I enjoyed or was grateful for. It helps get me out of that dark place.
I used to be able to walk to the local shops (half a mile) twice a week, (bus back) as long as I rested on other days. I looked forward to that outing so much! Now I’m in far too much pain to get further than a few feet into my garden (yes, I am lucky to have one) so the thought of travelling – well, I just try NOT to think about it, as it makes me so down, and I do try to keep positive. Btw – paracetamol, codeine, Tramadol have no effect whatsoever on my pain – is this another M E symptom or am I too weird for words? Docs refuse to believe me! Does anyone else have this problem?
Christina, that sounds like fibromyalgia.
So is fibromyalgia pain not affected by painkillers?
Mine has sometimes been helped by painkillers (usually ibuprofen) and sometimes not. I know that sounds terribly waffly, but it’s the truth.
I have Fibromyalgia and a back injury. I take opoids for my back. They have no impact on my Fibromyalgia. I take gabapentin for my Fibromyalgia.
I just double-checked my old e-mails, and the people who are saying that D-Ribose is legal in New Zealand are quite right. I had misremembered; the supplement I had all the trouble about importing for personal use was DMAE. I apologize for the false alarm.
I am sooo happy for you that you were able to figure this out and do it.
The reality for most of us, however, is financial ruin. Did you earn these trips, pay for everything out of money YOU earned? I am lucky to have a roof over my head. Most weeks, I am lucky to have $20 for groceries. Next week I have to take my twenty-year-old car in for servicing with no idea how I will keep it on the road. Doctor visits? No dough. More supplements? No dough. Qualify for government help programs? Nope.
IRA? Nope. Savings? Nope.
Nice dream. I collect pictures off the Internet of places to go, things to do.
I am grateful I can keep my landline, my Internet service, my little car, meager food, basic supplements, etc. Now to keep it going for another fifteen-twenty years.
I am one of the lucky ones to be working at all. Any extra funds, if extra ever happens, would have to be set aside for the future.
I am so happy for you that you were able to figure this out and do it.
However, I have to agree with John. Cloud-cuckoo land.
The reality for most of us is financial ruin. Did you earn these trips, pay for everything out of money YOU earned? I am lucky to have a roof over my head. Most weeks, I am lucky to have $20 for groceries. Next week I have to take my twenty-year-old car in for servicing with no idea how I will keep it on the road. Doctor visits? No dough. More supplements? No dough. Qualify for government help programs? Nope.
IRA? Nope. Savings? Nope.
Nice dream. I collect pictures off the Internet of places to go, things to do.
I am grateful I can keep my apartment, landline, Internet service, car, meager food, basic supplements, etc. Now to keep it going for another fifteen-twenty years. Like I really have control over it. Every year that passes, I breathe a sigh of relief. One more year covered successfully without major issues.
I am one of the lucky ones to be working at all. Any extra funds, if extra ever happens, would have to be set aside for the future.
Did you earn these trips, pay for everything out of money YOU earned?
If you mean “you” as in “you, yourself, personally,” of course not. I’ve been pretty much out of the workforce since 1990. If you mean “you” as in “you and your husband, NOT your parents or his parents or the government,” then yes, of course.
I’m neither a trust-fund baby (i.e., the daughter of wealthy parents), nor did I marry money. I’m also not on government assistance. I was disabled too young to be vested in Social Security and too old to qualify for the provisions for those disabled in childhood. I’m not eligible for SSDI. So, no, I’m not travelling on your tax dollars, if that’s what was worrying you.
I am lucky, and I know it, to have a hard-working husband who is currently driving 92 miles to work (each way) every day. I travel on money we put aside for that, usually, these days, a hundred dollars a month; I let it build up till I have enough to do whatever I have in mind, and then I go.
The three-month New Zealand trip cost about $6000 U.S. total, door to door and including absolutely everything. The two trips to Britain cost ~$3000, though bear in mind that they were taken in 1997 and 2001 respectively. The cruises I’ve taken have mostly cost around $1500, again door-to-door, when the dust settled.
Yes Natalie – but why begrudge those who do have the resources to travel?
Meredith is not, after all, sitting pretty. She can’t work. She spends much of her time in bed. When she travels she has to so very carefully and at a slow pace.
I recognise that it’s more than you have but a trip every couple of years is not a lot stacked up against all the misery, the lost opportunities, etc. that Meredith has experienced.
Would that we all had more resources….
Dear Natalie and John
I can hear the pain and frustration behind your comments and I’m sorry for it. I wish that all of us were in the position where we could afford holidays – both in terms of energy and money. Hey, while I’m wishing, I could wish for the energy and money that my own sisters have!
We all have to live within our own realities. We also have to accept that others’ realities are different. We make the most of what we have. Does that mean that we can’t listen to others? A lot of the posts on this blog do not apply to me because I am fortunate to be more well than many, though still restricted. I loved this post, because it is more applicable to me than most I read. I hope that we can all find the grace in our lives to accept that there are people who want and need to read posts that are not applicable to us.
I have learnt to assess posts and decide if they are applicable to me or not. Obviously this post (and my own earlier comment) are not applicable to a lot of people. I’m sorry for the pain it causes. I’m sure that wasn’t intended by anyone. Please look on the post as being helpful for some people, even if not for you.
Well said Diane. All of the folks I know personally have loads of energy and most also money and are seeing the globe as I type. I’m happy they can but even more happy to see anyone who has any limitations at all with this crap (sorry if I wasn’t supposed to say that Cort) figure out how to do some fun things. Since there is so much variation in severity with this diagnosis, it’s got to be frustrating to those who are severely limited. In fact in a yahoo group I’m in a separate group was formed for the more severe for basically that reason.
If anyone lives in a prime location but is strapped for readily available funds, a home exchange might be something to look into. And if funds and a driver are available, someone I know RV’ed in Alaska and that worked out great. The bed is always there and RV parking spots plentiful, if you’re well enough to get there….
Nice idea Betsy – home exchanges or free lodging for a little while – I’m going to put that on my list.
Thinking about this and I would love people with M.E. to be able to visit and couchsurf. It would enable me to have some company but also we would both know how M.E. affects us.
I feel down when Ive paid so much for a hotel room and then sleep all day. Is there an M.E. couchsurf page anywhere?
I cannot imagine why people would make cruel, jealous remarks about Meredith’s travels, marriage, finances, and level of “health.” This is absolutely shocking to me.
Meredith is a real person, not a fictional character on TV, and you are posting on the internet, not snickering on your sofa. What kind of troll would try to make Meredith feel bad about her accomplishments and her situation.
I could be jealous too but I’m NOT jealous. Because I’m an adult and I don’t begrudge what other people have.
Grow up, people. Lie down on your sofa and steam about it if that’s how you want to spend your life, but making cruel verbal public attacks on people you believe to be more fortunate than you is morally wrong.
If traveling by plane, I recommend using a saline nasal gel like Ayr. The air cleaning system on planes leaves the air very dry, which dries out nasal passages, which makes it easier to catch a cold/virus. I used to get sick every time I travelled. Literally every time until I started doing this.
Also, and maybe this is a no-brainer, don’t drink on air travel days. At least not until you land 🙂
Thank you stereoblue for mentioning this issue of dry nasal passages when travelling by plane. I have that problem, I wonder if you know a product that’s hypoallergenic and suitable for people with sensitivities or MCS. Ayr is not hypoallergenic. Thanks!
Dry nasal passages = good idea – thanks.
Enough people with M.E. have reported feeling much better in certain specific locations (and much worse in other specific locations) that I think it may be that the most important factor in terms of whether a vacation is successful is choosing where to go.
Many patients have reported feeling remarkably better on vacations to places like the Caribbean, Greece, Spain or some of the national parks in the western half of the U.S., for instance.
On the other hand, people visiting places like the UK, Rome or Washington D.C. often report feeling much worse on the trip and thus not being able to do much.
There tends to be a lot of agreement among people with this illness in terms of locations where they have felt the best, and so asking around for ideas may be helpful to people.
Here is a page of information on this topic.
I love going to the Caribbean and I felt better- emotionally- every time I went there. I’ve been to Arizona and South America as well and felt so happy there too. However, my symptoms did not improve at all while I was there. I guess I felt better because I was on vacations! Yay! I so love going on vacations 🙂
FYI, a Coursera course on Happiness is starting on the 15th.
Thank you Meredith for this article! I’m very grateful that I can travel relatively often and found your tips helpful. There’s an issue however that I think it was not mentioned, and that’s having to cook your own food from scratch due to allergies and multiple food intolerances every time I go abroad. My diet is quite restricted and I usually need a kitchenette everywhere I go making things more expensive and complicated. I wonder how other people manage in a similar situation? Thanks!
We do the kitchenette thing bc of food sensitivities too. We had a fabulous trip in Jamaica in March in a villa with kitchenette in a full service resort. We did nothing but rest, lying on the beach, but I felt so much better in the heat, after a freezing winter in Canada. I also recommend asking about the softness of beds in your destination – I usually take a featherbed or memory foam topper with me to reduce pain.
Hey Annabelle! I’m from Canada too and I love the beach and the heat. I always ask about the softness of the mattress as well, also reading as many reviews as possible helps me find out if the beds are right for me; I’m a Goldilocks type of girl! hahah.
Another unresolved issue for me is eating on the plane and at the arrival. I’m never sure if I can bring a piece of rice bread through customs or if is OK to not declare it, but I’ve to eat something 🙁
I have food allergies and am gluten intolerant. I prefer the kitchenette option. If traveling by car, I bring my food from home. I always carry small amounts of treats or snacks that I can eat during the trip. I use the Internet to research where I can shop when I get where I am going. More restaurants in the US are sensitive to allergy issues. I call ahead or check menus online. If in doubt, I do without to prevent problems. I don’t travel far these days but have done cruises to the carribbean and Hawaii back when I had money to do so. I always use airport wheelchairs to save my strength and buffer travel days with days of rest. Even now, if I have an event that I really want to attend or am invited away for a few days by good friends with more resources than I, I’ll rest up for 4 to 5 days before even more than usual. I save up my energy as it is just to do my monthly errands as I also care for my mom.
It wouldn’t be a problem in New Zealand as long as you were willing to stay at the lower end of the lodging scale; hostels and “backpackers’ accommodations,” as they call them (in the U.S. we would call many places that fall into the latter category category “no-name motels”) always provide at least some kitchen facilities for their guests, though their quality varies.
coming to this late as I’m just back from two weeks in Mexico. Personally I find I’m better (note, not well) when abroad so we travel as much as we can. We often book last minute packages to get cheap rates and we afford it because I was able to work when younger and my husband and I were both careful with money. The first trip we made I was really worried – now I know that I can not only cope but will improve for a time.
Of course there are compromises – I couldnt walk up Table Mountain in South Africa and as I dont like cable cars that meant I rested while my family went. I spent others times in the car while they walked. In Mexico my husband went out by himself some days while I lay on a lounger on the beach. Incidentally the place I felt best was Rhodes and I’ve spent some time trying to figure out why – not a lack of mould as there was some in the shower and my attempts to bleach it didnt work too well. Perhaps a lot of time spent outdoors, temperature that was hot but didnt need air conditioning, magnesium absorbed from the sewater, lots of good fresh and healthy Greek food and not much alcohol?
I haven’t needed to resort to a wheelchair yet but you can hire them in the UK and a few attractions (like the Eden project in Cornwall) have them available for visitors. You can even get an electric one at the Eden project if you prebook.
You can get advice on the tripadvisor forums on which London tube stations are accessible and the best way to travel.
British b&bs dont always serve breakfast in the basement while Premier Inn hotel are not overly expensive if booked in advance and have lifts anyway.
In Britain some supplements may be hard to find or totally unavailable.
Thank you for sharing your insights on traveling, Meredith. My wife would like to go back to New Zealand, where we met in 2006, before I got ME/CFS/SEID. I was tentative to go, but your post gives me heart that I can do it.
It was about 3 years ago that I won a one week trip to Barcelona to tour a beer factory and dine at a famous tappas restaurant. I did not think I could do it for one week and they gave me an extension. I took a Mediterranean cruise out of Barcelona and for the first time in years did not need a sleeping pill to be able to sleep. I learned that the rougher the water was, the better I slept. I am curious to find out if others have had a similar experience? I found the ship to be excellent – even had my morning coffee delivered to my cabin. I did make use of a wheel chair – airport staff was there waiting at the door in Germany and whisked me off to the gate of my next flight. There was a problem in the hotel in Barcelona with the cleaning chemicals that they used – so I ended up asking them to just please stay out of my room.
The following year I went to Cuba and stayed at an all inclusive resort. Since then I have been back twice and was well looked after, similar to being on a cruise ship, except with the ship I did not need sleeping pills.
In November I went with family to Hawaii. My niece made the arrangements and boked a midnight flight coming home. I informed the airline that I have MCS and they put me in a back row of 3 seats to myself, I took a sleep pill and slept the whole time similar to being on a ship. I wear a full size down coat and a pillow tied around my neck so that I have an instant blanket and pillow on the plane . It was great coming home after a good sleep.
In January I booked 3 – 7 day Caribbean cruises back to back. It worked out really well and again I did not have to take any sleeping pills for the 21 days
I have not used a wheel chair since the trip to Europe, but I do tell them that I am not able to stand in line ups and they are fine with this. They usually have me sit close by and call me first, another time when the line up was long, a staff member just took me on ahead. I have been only taking carryon,- my physician writes me a note so that I am able to carry on a large bottle of Dr. Bronners soap instead of the small ones When the temperature is hot – its easy to hand wash and dry your laundry in the cabins and sure saves on packing more luggage
I do want to try amtrac – someone told me that it is easy to sleep on the train so am curious
I hope to do more cruises (warm weather ones) and more stays at all inclusive resorts.
People on SSDI don’t have the money for such traveling. In fact I am homeless right now due to not being able to afford housing where I am. There are other issues as this is AK. Good advice for those with financial resources, but most people with ME/cfs live in poverty. Sigh.
I used to be a social worker and helped people who were homeless get housing. I also ran a non-profit homeless advocacy organization. This definitely helped when I became too ill to work.
I too am on SSDI and was able to get into subsidized housing. There are many projects for people who are homeless and disabled that you would probably qualify. Let me know if I can help you find some resources.
Here is a link http://www.alaskahousing-homeless.org/coalitions
I find it hard to believe that its very easy to find subsidized housing,( a.k.a. Section 8 housing). When I became sick 11 years ago (FM, Chronic Fatigue but my primary disease was RA), I was totally incapable of doing any form of work. HORRIFIC PAIN! I applied for Disability, but it took 3 1/2 years to get it. Bills had to be paid and I like many others, did not know if I would get Disability or not. My family is not close and those who did have the ability to help, chose not to; I am completely on my own.
I did not have a computer then, so I was limited to the phone book. I drove to different government offices, the Dept. of Children and Family, (i.e. welfare), H.U.D. and every social services office I could find, even religious groups. BUT unless I had a child under the age of 18, I didn’t stand a chance of getting anything. One agency actually told me that I had to have a minimum income of $1,000 a month in order to qualify for their “housing”. Are you kidding me? Even my Disability doesn’t pay me that much by far!
Maybe things are different in Alaska, but here in good ‘ol Florida, you are on your own! I find your statement that the homeless and disabled can easily find subsidized housing to be very naive. All over the country, people are losing their homes (not just us disabled folk) and living under bridges, parks and their own “shanti-towns”. They even created laws here in Orlando that churches and other organizations cannot feed the homeless! Cause those homeless people are such a nuisance…
So please forgive my harsh tone, but I think the majority of contributors to this blog will agree with me on this one. The majority of us are poor and getting poorer everyday! We can barely pay our bills and being sick is expensive! But I have no problem or grudge for that matter with the writer about how and where she got the money to travel! She can do whatever she wants with her money. No one knows all of the circumstances of everyone else’s lives and begrudging others does no one any good. Frankly, I’m jealous of healthy people! I want to be one of them! Who cares about money when you have your health?
If you can still travel with FM/CFS, kudos to you! But I’m with those that just want to read a book on a nice quiet beach and dip my toes in the water! With a glass of wine of course!
Like most others, I suffer from depression on a daily basis. It is hard to keep giving yourself pep-talks everyday when you know tomorrow will most likely be the same. But you also can’t spend your life being jealous of what others have-you’ll go insane. All I can say is try to find something that gives you joy even if for only a minute… A great comedy show on cable, planting an herb garden, cooking a meal with friends (if you have any left, ha, ha), take a walk if you can (I can’t anymore and miss it dearly). And lastly, pray to a Higher Power for strength, grace and wisdom…God Bless!
I did a ton of traveling on a shoestring when I was younger and healthier. After my second child the only traveling we did was to visit family who are scattered all over the country. 3 years my parents died and traveling to see them was all in the past. The following year I had the opportunity to visit Washington DC in June (I currently live in AL & I think it’s even hotter in DC!). It was my first time seeing DC on the ground, something I’d always wanted to do. I have fibromyalgia & CFS. My daughter was attending a program at George Mason University for 1 week, so I stayed in Fairfax (even using the metro, it’s much cheaper than staying in the district). I accomplished the 12 hour drive with coffee & her vivacious company, But once I dropped her off at the Uni I didn’t see her until the end of the week. I did a tremendous amount of research before I went–best thing I did. I made sure I had alternate plans if my primary plans turned out to be impossible, which they did. I originally planned on using a bike because the owner of the rental shop said DC was very flat! And that bike shop was in Georgetown! Yes, maybe along the Potomac it’s fairly flat, but DC is a notoriously hilly city! So 1st I went to Union Station & took an open top tour bus that had great views for photos & an interior with a/c, also nec. during thunderstorms. The ticket was good for 24 hours. So that afternoon I did the whole bus tour of the city to determine which sites I would spend time at & which sites I would cross off my list. Next day I used the rest of the ticket to visit the Memorials because there are no metro stops anywhere between the Jefferson Memorial and the Lincoln Memorial, and those were my primary stops. So I would get off the bus & enjoy the memorials at my own pace, then wait for another bus of the same company to pick me up for the next memorial. I finished at Lincoln Memorial / Korean war monument because the distance to the Metro was the shortest than any other memorial area. Then I was able to use the metro to visit the other sites the rest of the week. But it was still a tremendous amount of walking. Mid-week I had to spend an entire day in bed which killed me. It’s awful to spend a whole day in bed in 1 of the most exciting & beautiful cities in the world. But I was in too much pain & too exhausted to even think about leaving the hotel. Also, since I couldn’t get up at the crack of dawn, the hotel in Fairfax worked so well because I could get to the metro station at Fairfax / Vienna right when the early morning commuters had left their parking spaces. I could park for free after 11a.m.! Whenever I return from the trip, I know I will crash badly for several weeks if not months. That’s just the way it is. People don’t understand it. They get very frustrated. Time moves in a very different way for fibromyalgia CFS patients than it does for the healthy population. A week goes by & they think you should be fine & you keep telling them, no it will take many more weeks before I can get up & work for 2 or 3 hours on household chores. But it was worth it!!!
I know how you feel Julie! My brother lives in DC and I beat myself up every time I go there. I think we should have Meredith take a trip there and tell us how to do it.
It is frustrating!
Really we should have travel guides for each city — the quickest and easiest ways to get around. The best sites to see that take the least effort. The best rest stops. The best cheap food :)….That would be great. Also great would be people who offered rooms in their houses for the poor, financially strapped ME/CFS and FM patients who want to travel. 🙂
Cort maybe you could have a section on your new website where people could post if they have available rooms and timeframe? Maybe someone living next to the Louvre has an extra room. 🙂
Thanks for the recent reminder re Amazon purchases as I’d totally forgotten to come to your site first for my last 2 orders.
That’s actually a great idea!
Im glad I found this thread. I’ve been ill for 14 years now. I always dreamed of traveling. I’m extremely low income as well. But I’ve managed to save a bit and am considering traveling through Mexico for several months at some point. I have not been able to find any information, videos, blogs or support for limited mobility travel. I’m ambulatory, but it needs to be flat! Stairs are really hard, and any incline brutal. I’ve wondered if making YouTube videos from this perspective would be useful and perhaps even income generating. What do others think? Thanks.
Disclaimer: I’m a very lucky person. When I was too ill to work and fired from my job about 8 years ago, my worst fears were that my husband would leave me and I’d end up homeless. Neither has happened (so far).
I used to love to travel and would take at least one international trip each year by myself, usually to Ireland. I love Ireland. After becoming ill, first with FMS, then CFS, I knew my traveling days were over–equally due to lack of money and lack of energy. I was never more amazed than in 2011 when my husband said he wanted to go to Ireland for 8 days and would pay for us to go. I was frightened that I couldn’t do it, just couldn’t make it over there, but I thought, how can I turn this down? We went, and I learned that I could rise to the occasion on occasion, especially with my husband’s help. It felt like being let out of mind jail.
Fast forward to July 2014, my husband retired from his job and decided he wanted to travel in Europe for 6 months (using a lump sum of money he designated for the purpose). I was horrified. Six months? We started negotiating about it, and he agreed we would stay in AirBnB apartments with kitchens, only on the ground or first floor, with a separate bedroom with a door that could be closed, and I wouldn’t be expected to do anything before noon on any day. If I had to stay in bed the entire time, so be it. Oh, and, probably the most important thing for me was that he agreed for us to stay a month in each place, which at times turned into a week. But we didn’t hop around from one day to the next (because we knew I couldn’t). The trip was a huge challenge, and I never hope to travel again, but I’m so glad we were able to do it. Surprised and delighted and tired, still tired after returning in Jan. But I’d have been tired anyway.
I feel so sad you have had so much anger directed at you for your post.
I got CFS/ME whatever we call it today at age 14 and am now 30. Through sheer stubbornness I still want to travel (and have had some opportunities too through a business I started myself while ill). I did not tell the organisers of the trips I was ill, for fear of how I would be seen. Instead I took my husband and we worked together to make it work for me- they were only short and for me the incredible joy of going absolutely over rode how flat on my back I was afterwards.
I want to tackle Europe and the US so I really am interested in travel tips such as this. The long haul flights scare me something shocking as does everything I want to see.
I live my life ignoring my disease and not in a “you must be so lucky to do that” it isn’t that at all, I got put in a situation where I had to make things work so things alter around my illness…and I am never ever giving up my travel dreams!
I live in the UK now but travel back to Australia every 2 years to see my family and friends. That’s the most long-haul you can get! I now travel in Premium Economy because it’s so much more restful than in economy (or coach?). Another friend with ME/CFS pays the extra for Business Class so that she can lie down. If you can afford that type of upgrade, it really is worth it.
I take a sleeping tablet on each of the two legs back to Australia. I think it is worth it. Most of the time I manage to sleep or doze with this.
Planes now have pull-out things on the seats to hold your head in place. They’re not bad but I think the neck cushions (either blow-up ones or with little polystyrene beads) are still a bit better and provide more support.
Make sure to get all the help at the airport that you can. Tell them that you need a wheelchair. Some airports require you to walk a long way! Also, if you have POTS or any problem standing, you do not want to have to stand in a long immigration queue. A wheelchair solves that problem. I was once wheeled past a queue that extended into the corridors and was told that it was a 3-hour wait for immigration. I could not have managed that. (That was when Terminal 5 at Heathrow had just opened and procedures were not properly in place.)
How did you get hold of saline IVs and oxygen?
I know you wrote this post a good few years ago, but you should know that it’s still helping people!
Like you, I have naturally come to the conclusion that we must still “live our lives” despite the interruption of ME/CFS (which in this case, is not myself, but my 11 year old daughter). We cancelled our first overseas trip as a family when she first became ill 2 years ago, but have decided to re-book now that she has stabilised and we are managing the illness well (read: we have learnt how to pace, and she is no longer booming then busting every other week). Of course, the trip will be entirely different to how it would have been were she not ill, but we are in a great position now to accept that and roll with it.
We’re planning on going to NZ so that my husband and kids can see snow for the first time. My husband and I will take turns between adventuring out onto the slopes with our 14 year old son, and relaxing with our daughter gently building snowmen or drinking hot chocolate and watching movies inside. I think it’s a blessing in disguise that our busy outdoor days will be balanced with our restful indoor days.
Once again, thanks for your informative and inspiring blog. It’s great to know that life can still be lived with ME/CFS. It’s a little different, but it’s still a life to be embraced!
So nice of you to take the time to acknowledge Meredith a couple of years later, Jennifer. Enjoy the snow 🙂
I am another patient grateful for your advice, all these years later.
I didn’t think I would ever go overseas (from Australia) again but here I am, in Bangkok really enjoying the sights, food and culture.
One point: spending so many hours in bed in our hotel room isn’t really a waste of money.
It is ensuring my survival while experiencing an amazing, beautiful culture. The memories of my experiences will sustain me for many years.
I am spending this trip doing things I can never do at home.
I do what I can every day, even if it is only a short walk past street food stalls to a tasty cafe for lunch.
I make sure my husband feels free to take long walks while I recover from my one daily activity.
This will probably be my last trip OS but I’m so glad we decided to do it.
I wanted to say how very helpful I found your advice when I was researching about long haul flights etc last year. I have managed to take self catering holidays with my husband in my home country, the U.K. about 6 years after developing ME but never thought I would be either ‘well enough’ or have the means to travel abroad again. Last year I had the opportunity to visit New Zealand for the first time to stay with family friends for a month travelling with my daughter and toddler grandchild and your advice was so helpful and encouraging and I had a wonderful time, albeit with ‘payback’ on my return.
My daughter booked flights and asked for assistance at the airports etc ……wheelchair assistance at the departure, transit and arrival airports, assistance on and off the planes and with hand luggage, priority through customs and immigration for us all……which worked seamlessly. I admit that it was much easier for me staying with family but…..next time I go and I’m determined I will again, health permitting, I’ll be looking to do a bit more ‘sightseeing’ maybe even on my own. This will be using a combination of money earned and saved by me and my husband whilst we were able to work and yes, I do know how lucky I am to have some savings and a pension too, which I worked very hard for so please don’t begrudge me that.
I am truly sorry for everyone whose experience of ME is pain, suffering, financial hardship and uncertainty and for whom any time outside of their home either is or seems an impossibility let alone any kind of holiday. However, as with many chronic illnesses/conditions and with ME, ME/CFS, CFS in particular, we each experience sometimes the same symptoms, sometimes different combinations of symptoms which affect us in a unique way. We each of us have to live with ME, ME/CFS, CFS as best we can and we have enough people, including most health care professionals, who don’t believe this illness/condition really exists without us falling out amongst ourselves because it’s so hard to believe that occasionally some of us can manage/afford a short holiday or travel abroad.
Hope you’re well enough to to continue with your travels Meredith when the current pandemic permits.
Thanks Meredith, I came down with chronic fatigue last year, and it’s *sooo* good to know that travel is still possible. I know I’m one of the luckier ones, with energy levels similar to yours, and (for the moment) some savings in the bank. My heart goes out to all those without, and I know I could so easily be in their place.
Hi fellow real-travelers and armchair (flat in bed) travelers: meredith thanks for this article — now it’s 2021. I’ve tried cruise, staying at cape cod (I get better there the minute I cross the bridge), whrrr they now havev Mobi-mats and big-tire wheelchairs to make National seashore accessible. Just bought a wet suit that contains a flotation device: able to be in ocean first time in 8 years. Why possible? —We won the lottery (literally—it’s a lottery ) to get HUD-subsidized apartment which means, even on my SSDI, I can eke out existence. —my 26 ye old daughter travels eith me and is caregiver. I hate the role reversal but am so grateful that she’s willing (it’s been a long negotiation over boundaries). —After literally 6 yrs of trying, i finally qualified for SNAP food stamps. You can subtract medical expenses from
Income to qualify: years of frustration then found processor who knew this.
Many of us don’t have enuf money for the basics, let alone trade offs. I can’t take meds I need, even with Medicare supplement. Practicing mudita is HUGE challenge when, among other things, you have millionaire cousins w whom
You’ve been close who consider themselves too broke to help.
Much mote to say but my QUESTION: how to fly 5 or 6 hours when i gotta be horizontal but the price of a seat thst really reclines is obscenely high? I’ve called multiple airlines: if I wanted the 3- seat option to get horizontal, have to pay for 3 seats! Anyone have answers? AND: love an answer to someone else’s q: access to IVs and oxygen? Without RX? Cost? THANK YOU!