Thanks to TK For sharing his daring adventure – an almost 6-month cross-country trip from San Francisco to New York and back with ME/CFS. Traveling is by definition an adventure. We travel to become rejuvenated, to soak up new experiences, to open our eyes newly once again. When we travel we tend to see things more intensely and the world seems fresher.
Travel, though, is not easy. Even healthy people feel a combination of trepidation and excitement as they begin their journey to a hew place. Even when healthy we often return home exhausted and happy to experience the ease and familiarity of home once again.
How much more daring then, to travel when you have ME/CFS or FM – two diseases that severely limits one’s resilience. Everything is more harder for the ME/CFS/FM traveler, there’s the need to pace when all you want to do is get out, the worry about crashing – in a foreign place (!), the brain fog that complicates anything complex (like uh… travel), the need to make contingency plans, the worry about getting stuck somewhere.
The wanderlust can run strong, though. We are by nature explorers. Perhaps the best known travel account of a person with chronic fatigue syndrome (ME/CFS) comes from Roger’s King’s “Love and Fatigue in America“. King, an Englishman, was felled by ME/CFS when he entered the U.S. and then proceeded to write about ME/CFS and America as he traveled across the country.
Check out an ME/CFS “On the Road” as TK travels, pushes hard, does – as he expects – better than expected and then crashes, and opens up some interesting questions. Plus find some ME/CFS/FM travel resources at the bottom of the page.
On the Road: A Cross-country Trip by a CFS Patient
The crew showed up early in the morning and left with all our furniture. It will be stored away for the next 8 months. What’s left is piled up neatly on the floor of our empty apartment: a bag of rice, a rice cooker and other kitchen items in three boxes, an air mattress, a comforter and two pillows, and two suitcases and miscellaneous boxes filled with my wife’s clothes and shoes. Now I have to roll them out to the curb and load them up in the car. I’ll have to do that all by myself — the wife left in the morning for a modeling geek in the South Bay and I was to pick her up in the afternoon. I am totally depleted after loading two boxes and give up. The rest are thrown in carelessly — I’ll deal with them tomorrow.
Thus started our cross-country trip from San Francisco to New York City and back. Why did I do it? I wasn’t out to impersonate Sal Paradise, for sure. That’s reserved for healthy young people. This was a grand experiment by a CFS patient, and yet another attempt of mine to make some use of a prolonged downtime in my life.
Before we start, I should disclose that my CFS disability is mild to moderate. I can take care of all my ADL (activities of daily living) on good days, and take a walk several times a week. I can walk 1 to 2 miles with a break every half a mile, depending on my condition, at 90 steps per minutes on flat terrain, and up to 100-200 feet in elevation gain. That is about 10-20% of my pre-illness ability. Anything more than that, I risk a post-exertional sickness. That puts me at around 30-40% disability on the MEA scale, 40-50 points on the Bell scale and 80% on SF-36.
Still, that is an improvement from the early days. In 2010, I felt hopelessly stuck after wallowing in a CFS stupor for 2 years. I was getting out of the house a few times a week even back then, because walking improved my mood and sleep immensely. I’d walk like a zombie for a few blocks at a time and sit carelessly on somebody’s doorsteps to rest.
But between struggling to take care of ADL and aimless walking about in the haze of CFS, I was feeling totally useless because, well, I wasn’t doing anything useful. So, when my sister announced that she was going to Korea for vacation, a country I was born in but haven’t visited in a while, I jumped on the opportunity and hitched on. I ended up staying there for two years. It was like being in Disneyland when I first got there and I was suddenly able to walk more than usual. Then the improvement dissipated when the excitement faded. Same thing happened when I returned back home.
I made the trip once more in 2013 and married someone I had met during the previous sojourn. On the return trip we stopped in The Philippines for a week for our honeymoon. On the last day, we took a day trip to Sumilon Bay and floated around in the water with whale sharks. The return back to Cebu, however, was an incredible ordeal of sitting for up for 6 hours straight on a hard-seated bus driven by a tasmanian devil through the nightmarish Filipino traffic. Next day, we packed up and caught the 12 hour flight to San Francisco. And yet, the day after we landed, I was still up and walking.
This has been happening over and over again. It became clear to me that I was able to get away with more activities when I travel or move to a new place. So I figured, why not take a longer trip and see what happens? Hence the plan for the grand experiment of the cross-country trip to NYC was hatched.
It was a long trip that spanned 10 national parks and a dozen major cities. I can’t possibly recount them all in this article, so I’ll just recount a few that made an impression on my CFS. First, here is route we took:
March 31, The Beginning
The electric car will make sure that I take a break every 2 hours or so. It needs periodic charging and I can take a nap for 30 minutes in the back of the car. And I’ll take every other day off and rest. At least that was the plan. Still, some nights I would wake up and wonder if I’m dooming any chance of my recovery by doing this. Such prolonged activity could make CFS irreversibly worse. But I figured we can always abort the trip and return if I don’t feel up to it. We’ll go as far as Las Vegas and then decide.
Everybody has a plan until they get punched in the face, as they say. We stuck to the plan for a grand total of 2 days. After the ordeal of packing and moving out of the apartment, there was no way I could continue on. So we stayed for two nights in the South Bay and recuperated. Then the plan quickly went out the door by the time we got to Death Valley. We ended up staying only one night in Ridgecrest after driving 400 miles, because, thanks to my cheapskate planning, the motel room wasn’t available anymore. So we drove through Death Valley to Tecopa where we car-camped overnight while charging the car. The next day, we went up Death Valley again and then drove to Las Vegas via Beatty. It was nonstop traveling for 3 days and one thousand miles. And yet I did not crash. It was a sign of things to come.
April 16, 19 hour drive to Austin
The grass is greener in Texas. The rocks and desert of New Mexico gave way to prairie and farmland shortly after we crossed the state line. There was no hill in sight over the horizon. And it must’ve been raining in the farmland. By the time we got to Childress, the humidity was palpable.
After Las Vegas was Grand Canyon via Sedona. On the way, I hit a gigantic pothole near Flagstaff and the car got towed to Tempe for repair. We got stuck in Arizona in a rental car for a week, and I wanted to make up for the lost time. So we decided to go straight to Austin after Albuquerque.
We checked out from Albuquerque Extended Stay America at 7AM. The navigation took us through Childress and Cisco, and it was 200 miles between the two on country roads meandering through millions of small Texas towns. I had to keep it below 55 mph to conserve the battery and make it to Cisco.
We drove and drove through the humid southern night with bugs pelting the windshield and the high beams rhythmically flickering on and off as cars came and went from the opposite direction. A gas station was open at midnight in Stamford and we pulled in to clean the windshield. A few local young people came and went in their pickup trucks. It was as if I was transported back to North Carolina where I spent a part of my teen years. We used to ride the back country road in the middle of the night on weekends with a six pack or two in the backseat, looking for girls.
It was 3AM the next morning when we arrived at our lodge in Austin and the ordeal left a blister on my lip. How strange it felt to have a blister for the first time in 10 years. My wife didn’t understand what it was about. You have to be a CFS patient to understand the wonderment about getting a blister, I guess. And no post-exertional sickness still; I rested one day and we were back in action, touring Austin.
May 4 – 8, Crash in Virginia
By the time we arrived at my sister’s mountain house in Virginia off the Blue Ridge Parkway, we had logged another 1000 miles through the Louisiana bayous and Appalachian mountains. This was the place we planned to take a long break from travelling and do nothing for a week.
My sister and her husband own a few properties here. One of them is loaned out to an Angus farmer named JD. The cows, protected by a pair of donkeys, happily go about grazing on the hillside and suckling their calves and rushing to lick salt off marauding trucks. Down in the ravine, a creek runs through it. We romped up and down that creek for a while the day after we arrived. The next day, I woke up sick. And I stayed sick until we left there 4 days later.
It had been over a month since we left San Francisco and we were running behind the schedule. We should’ve been in NYC by now, according to the plan. And there was nothing much for us to do here. We dined at Aunt Bea’s in Galax one day and visited the Bluegrass Museum the next. Then we were done. I could be hiking the mountains if I were healthy, but walking up and down the hill was out of the question, especially while I was struggling with a flare-up. So we decided to cut the stay short and move on.
Funny thing, I started to feel better once I got back on the road. Could it have been the excitement of getting back on the road? Or maybe it was time for me to recover anyway. By the time we left Wytheville after recharging, I was back in road-worthy shape.
May 15 – 30, Apartment Hunting in NYC
The snow came early in the Sierra mountains in the fall of 1846. One more climb and the Donner Party would’ve made it to Truckee. They had desperately tried to get out of the slippery hole they were in before giving up exhausted and chagrined. They were stuck there between Donner Lake and the mountain for the winter. More than half of them perished.
15000 steps already under my belt for the day and we still had a few blocks to go to Lexington Station in order to catch the Q train back home. Sitting on the sidewalk, I felt desperate, like the Donner Party caught in the snow. The evening rush hour in Manhattan already had started and Uber wasn’t much of an option. After resting for a while, we walked down to York Street to catch a taxi from there. Most were occupied and the empty ones were going over the bridge to Queens. I sat again for a while more to gather courage and then went up to the other side of the block and hailed a taxi there. The driver took us to 63rd station instead. Going to 59th Street station would take longer because of the traffic, he said. I finally stretched myself out and relaxed for a while through the Manhattan rush hour chaos.
I ended the day with 16,000 steps, the most ever in 9 years since I got sick with CFS. And I did not get sick the next day. I was on a 7 train to Flushing for a haircut and grocery shopping instead.
June 9 – 29: Post-trip Struggle in NYC
Been there, done that. It’s been almost one month since we arrived in NYC and the novelty is now fading. My activity has been dropping too, from 60,000 steps a week to 40,000. My crash threshold has dropped as well. Running some errands in the morning and then walking a mile in the afternoon was enough to cause a two day crash.
The post-trip struggle usually lasts 3 weeks. And this one lasted for exactly 3 weeks during which I logged 3 crashes despite the reduced activities. The pace picked up again and I went back above 50,000 steps after that. Then it was time for us to pack up and leave NYC.
8/28 – 9/6, Across Missouri River, Yellowstone to Grand Teton
The endless corn field undulated gently, throwing shadows and lights in turn on the reddish brown canopy of corn husks. This sea of corn stretched out along I-90 through Minnesota and Dakota all the way to Sioux Falls. Then, as we got close to theMissouri River, the land turned dryer and the cornfields thinned out. Soon after we crossed the river, sunflower fields appeared, and then they too thinned out when the sage brush appeared. The cattle farms came after that as the grass turned brown. By now, it decidedly looked like the West. The Missouri River, it seems, is the starting line of the West.
It’s been another whirlwind, traveling for a month through New England and the Great Lakes since we left NYC. We had to speed up after Chicago — it was almost September and we wanted to get to Yellowstone before the weather turned cold. When we got there, however, iIt was in the 90s. With the heat from above and the heat from below, it was Colter’s Hell alright.
From Cody to Belgrade through Yellowstone, it was another 14 hours of driving and sightseeing. We camped in Cody to get the car charged overnight, and that took a lot out of me. I couldn’t possibly continue on after the 14 hour drive through Yellowstone on top of it, so we took a day off in Belgrade. After the rest, we went to West Yellowstone through the park again, and then finally to Teton Village. It was 4 days of travelling with only one rest day. Again, I ended up with a blister on tmy lip, and again I got away without post-exertional sickness.
9/10 – 9/11: Bryce Canyon and Zion
I used to hike 10-15 miles up and down 3000 foot mountains before I got CFS. The last one before I got sick was 15 miles over Mt. Diablo east of San Francisco. Since then, the most I could manage was 1 to 2 miles in the city.
Bryce Canyon was my first attempt at real hiking since I got CFS. The Navajo Loop goes down 600 feet and loops 2 miles through Queen’s Garden. I rested every few switchbacks and made it to the bottom alright. But my legs felt like wet noodles by then, and I wasn’t confident I could make it all the way around the loop. We turned around and went back up the the trail. Down and up 600 feet!
The next day we were in Zion National Park. We hiked from the Temple of Sinawava to the Narrows and then waded up the Narrows in the river. Halfway up the Narrows, we again turned back. This hike was worth about another 2 miles.
9/11-9/16, Crash in Mesquite
This is the town made famous by Stephen Paddock. We didn’t know about it back then; the Las Vegas shooting happened after we were safely back at home. Eureka Casino that he frequented was right across the Virgin River where we stayed. At $27 a night, it was a good place for us to park for a while and rest in the desert heat. So we did that for a week.
I felt fine for the first two days after we arrived. My pace was up to 100 steps per minute and I was walking up and down the stairs to our room on the 3rd floor a few times a day. On the third day, I came down with that familiar heaviness that goes with PEM. I crashed for the next 3 days.
My fitbit congratulated me on climbing 50 flights of stairs when I got back from the Navajo trail in Bryce Canyon. And yet, I crashed after going up and down a few flights of stairs here. How’s that even possible?
9/17 – 9/19, Yosemite and Return Home
There is no elevation gain, the shuttle driver said. But the Misty Trail along the Merced River started to climb shortly after it started and it went on and on. We were planning to get to the Vernal Falls Bridge after about a mile. Another tenth of a mile or so and we would’ve made it. But the trail was getting steeper and my legs were pretty wobbly by then. So we turned around, again.
It was another 17 hour day. We left Mammoth Lake before sunrise and were in Yosemite Valley by 9 AM. We parked the car at Yosemite Lodge and took shuttles around the valley. Misty Trail was our last stop. On the way to Sacramento, the car’s navigation took us through Jackson across Route 88. It is the road I have taken a million times on the way to skiing at Kirkwood. By now the sky was turning dark crimson and silhouettes of lone Oak trees dotted the hilly horizon. It’s scenery I’ve forgotten for 10 years. Will I ever return to skiing? I can only dream about it. It was 9PM when we got to Sacramento. Then we had dinner at a Korean restaurant and were at our lodge after 10 PM.
It’s been six months since we returned from the trip. My days now consist of taking care of ADL, running errands, taking naps and walking to the cafe several times a week. In other words, I’m back exactly where I was before the trip began last spring.
After we returned, we bounced between San Francisco and Sacramento looking for a new home. And then we had to go abroad for a month for my wife’s business. After we returned, I was struck by flu, twice. That was followed by the post-flu struggle for a few weeks. All this post-trip commotion of looking for our new home and attending to my wife’s business prevented me from observing the post-trip health struggle at home. But it did confirm the elevation effect of traveling.
It is true that people tend to become more active when they are traveling. So the activity elevation by itself may not be that remarkable. What’s remarkable is that I was getting less PEM with the elevated activity level. I was walking almost twice as much, yet I was not getting sick; it was only when I stopped traveling that I got sick again. So it seems that the exertion threshold for PEM went up while travelling as well.
Here is the graph of bad days, represented as red vertical lines, overlayed on the activity level in the form of 7 day rolling sums of the number of steps taken:
1) From late March to the beginning of May, there is no red line. This was when I was moving out of San Francisco and traveling to Virginia. Then, 2) thick red lines appear in early May when we took a break in the Virginia mountains and I crashed. After that, 3) lines get denser as we approach July and the novelty of NYC faded. 4) Lines disappear again in August when we got back on the road, till we got to 5) Mesquite where I had another crash. The trip ends shortly after that. From there on we bounced between San Francisco and Sacramento, 6) travelled abroad, then settled in Sacramento in November. The real thick period around January was when I had bouts of flu.
As for the reason why the exercise tolerance goes up while traveling, I can only speculate. Could it be the hypothalamus, the brain’s sleep-alert center that also controls ANS, homeostasis and fatigue, getting stimulated and loosening the CFS brake? Is it all psychological? It’s only an anecdote of one person for now, so it doesn’t make much sense speculating too much anyway. It will suffice to say that this trip was a part of my effort to understand my CFS and climb out of the hole that I’m in. It is an effort that we CFS patients are intimately familiar with: we try anything and everything under the sun, only to hit the wall and drop like a fly. Then we get up and do it all over again. We are a determined bunch consumed with finding a way out of our prison that is CFS.
I’ve certainly had my share of failures. Early on when I only had a vague idea about CFS, I went on a bike trip. The next day I woke up dazed. My condition got progressively worse throughout the following months, eventually culminating in a fainting spell. I wouldn’t be here today if it weren’t for my tailbone that took the blow of my fall and spared my head from hitting the travertine floor of my bathroom. And then in 2009, I decided to give Telegraph Hill a try. I did because, back then, I still believed that I might be able to exercise my way out of the predicament. I spent the rest of the winter lying in bed contemplating how to end it all. It’s that kind of memories that stops me from pushing further when my legs become wobbly. So, if you get tempted to point to my trip and say “see? CFS is all in the head”, don’t. Unless you mean by “head”, the brain.
Anyway, I probably won’t have to worry about my trip inspiring other patients to do the same. Any outdoor activity, let alone travelling, is not an option for severely ill patients, obviously. Even if you are moderately ill, extended travelling is no doubt a high risk endeavor. I’m lucky enough to struggle for a few weeks and recover, but you may not; it may set you back irreversibly instead. So the usual disclaimer and warnings should apply: your mileage may vary (no pun intended); use extreme caution, stick to your usual limit and pacing strategy, and consult your doctor before doing anything out of ordinary, etc, etc. There are plenty of advices on the Web about travelling with CFS if you decide to travel.
It’s now April and the days are getting longer and warmer. My condition tends to improve during the summer, like in 2016 when I could suddenly walk twice as far for no apparent reason and that nagging need to lie down went away. It was enough for me to imagine that I was recovering. But the improvement faded away over the ensuing months and I was back to where I was before. Will the improvement come back again? Maybe. And maybe it will stick around for good this time. Meanwhile, I’ll have the memories to keep me going in the dark days of wallowing in the deep end of CFS. These reminders of what’s possible will keep me going until I recover and do it again, as a healthy person the next time
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