Travelling with chronic pain and fatigue
My hacks, and OPEN THREAD
I was delighted to go on a trip to the U.S. recently. It was my first time to the mainland, in Connecticut, which is storybook territory - tall forests, turning yellow leaves, glassy lakes and centuries’ old weatherboard buildings. I went on hikes, made new friends, did a guided tour of Mark Twain’s house and discovered new snack foods. A great trip!
But if you have experienced chronic pain, fatigue or other ongoing health problems, you know that the excitement of travelling comes with a downside - pain flare-ups, difficulty sleeping, force-smiling through migraines, being struck down with illness on the way home, and so on.
I’ve been fortunate to go on quite a few long-haul international trips in the past couple of years, which has given me the opportunity to tinker around with hacks to improve my well-being while away and to minimise recovery time on return.
A conversation with a new friend who also experiences some of these difficulties inspired me to share what works for me and what I’m still experimenting with to hack this business of travelling with a less than cooperative body.
This is an open thread which I hope can be a shared resource that we build together. Please add your experience of what works for you in the comments!
What travelling with pain and fatigue means for me
For years now I have experienced chronic pain and fatigue. In the simplest terms, that means I tire easily, I get sick easily, I take a long time to recover, and my body hurts most of the time. During flare ups, pain becomes the dominant sensation, particularly enveloping my face, skull, back of my neck and shoulders like a sticky tight ‘wrap’ that permeates the centre of my consciousness - there is no being awake without thinking and experiencing ‘pain’, and at the worst, there is no sleep either. Over time, I’ve learned ways to manage and minimise this, almost all of it down to lifestyle, mindset and diet (I can do a separate post on this if people are interested - let me know in the comments).
All of this is very frustrating, because I love doing things!
Travel is uniquely challenging if you have a condition that is best managed through lifestyle. Long flights in awkward positions, lack of access to clean air, in and out of air conditioning, poor nutrition, long days of back-to-back activities, artificial lighting, polyester sheets and strange chemical scents - all of these things make staying well and on top of the pain and fatigue all the more difficult just when you need to be on top of it the most!
To deal with this, I have focused on what I have control over vs. what I don’t. Following is a list of things I have control over, which I have found improve my ability to show up and enjoy my time abroad. As for the things I can’t control - those are best dealt with with an attitude of surrender, as fighting things I can’t control just creates stress, which creates… more pain and fatigue.
Before the flight
I find that if I minimise inflammation in my body as much as possible in the lead up to a trip, I tend to handle the flight and away time better. In the weeks leading up to a trip, I do the following things:
Drink plenty of clean, filtered water, get lots of outdoor exercise, weather permitting, stick to a regular sleep schedule, and make sure I’m not overdoing things.
Eat very clean - minimise sugar, alcohol and empty carbs, all of which cause inflammation in my body.
On the day of the flight, I make sure to go for a big trail walk, do a dynamic yoga practice or similar to stretch out my body and calm my nervous system. For this reason I almost always book afternoon or evening flights.
Pack
A travel yoga mat or whatever you need to do exercise in your room. This is my failsafe way of getting the movement I need regardless of weather, gym access or schedule. I use the Jade Yoga Travel Mat as it folds up origami style and only weighs 1.3kg. I’ve been practicing yoga for so long that I’m comfortable doing my own self-guided practice, but if you need someone to take you through, Yoga with Adriene is a good free resource.
Bakballs to massage out knots caused by the uncomfortable flight! I use these all the time at home and they’re very light for travel.
Acupuncture needles. I use a brand called Seirin Pyonex which are short needles with a sticky back, safe for self-administering. I got them on the recommendation of my acupuncture therapist, who showed me where to place them if I need ‘emergency’ acupuncture but cannot see a therapist. I use the 1.5mm length and find them helpful for releasing tension in my face if I do experience a flare-up.
Whatever supplements you take, in a labelled ziplock bag. Decanting them into a ziplock bag reduces weight and volume massively - no clunky bottles. If I’m going somewhere that is super strict on customs, I peel off the label from the bottle and stick it on the bag so that customs officers can see they’re herbs, not illegal drugs ;)
A natural fibre pillow slip. I travel with a silk pillow slip because sleeping directly on polyester either makes me unable to sleep, or I wake up with a headache, so I don’t take my chances. I also frequently phone ahead/email to request that linens and the room in general not be sprayed with scented sprays on the day of my arrival.
Depending on how long I’m away for and how much baggage space I have, sometimes I will also take a portable water filter. This Waterman one is not too heavy or bulky, all things considered.
On the flight:
Book a window seat - I find it much easier to sleep sitting up when I have a window to lean on. If I can keep my eyes closed most of the flight, I find the headaches are not as severe.
Take an eye mask and neck rest - To enable me to ‘sleep’ through all the lighting changes on very long flights. Lately I’ve been lucky to have had an empty seat next to me on some of my longer flights, which allowed me to sort of doze through the flight.
As my friend
says, ‘always pack snacks!’ - boiled eggs, apples, activated nuts and jerky all last a long time and can supplement crap airplane food. I avoid the sweet and carby treats on flights - they make me feel shitty, which is not how I want to arrive at my destination.Drink heaps of water - A while ago I worked out that dehydration is one of the main drivers of headaches and jet lag for me. In Australia they won’t let you take water bottles (not full ones anyway) through security, but once through security I fill up my water bottle and then ask the flight staff to refill my bottle every few hours. If I only drink water when they bring around those pathetic little cups, it’s not enough.
Fast for the period when I would usually be asleep to allow my body to not overload on food. I get sluggish if I eat every time they serve food on the plane.
Take socks, scarf and layers to keep warm - I get sick if I get too cold for too long, and planes are almost always too cold.
Take aspirin or whatever ‘emergency’ medication you need - my blood vessels always constrict on flights, causing headaches. I don’t regularly take pain medication as I find that it doesn't work. Aspirin is the one thing that I do find releases the tightness a little, so I will take it on a flight. Also, eyedrops are helpful if your eyes dry out in plane air (mine do = more headaches).
Stand up, go for walks and stretch from time to time - I usually go to one of those little spaces near the toilets and do some stretching. On occasion if my legs throb and swell up too much I’ll actually lie on my back on the floor and put my legs against the wall. Flight staff don’t like it but when I say I am doing it for medical reasons (which I am) they usually allow it as they don’t want a medical emergency on their hands.
While abroad
Allow two or three days to ‘land.’ This is an added expense for the accommodation, but I cannot afford not to do this - my entire trip can be a write-off without it, as hurtling into a full schedule after long-haul travel causes horrible migraines and body pain flare-ups for me. I always book my flights to land a few days before whatever it is I’m there to do to allow my body to settle and shake off the jet lag. I’ve worked out that if I pretty much just walk around for several days and then go to bed early, with minimal social interaction, I’m pretty right by day three. On my recent trip I went hiking on the first two days and it worked like a charm, although I pushed it a bit with socialising on those first few nights, and I did notice that I struggled from pushing myself in the evenings. If I’m in a more built-up area, I’ll just walk around exploring the city.
One of the first things I do when I arrive anywhere is go to the nearest Whole Foods or similar and buy some food supplies. Things like cheese, yoghurt, charcuterie, nuts, local fruit and eggs (if you have a stove to boil them on) can make a meal anywhere anytime, provided you have access to a fridge to store them. I find I’m extra sensitive when out of my normal routine, so keeping meals very simple and then eating out once a day seems to work better for me than eating every meal out.
Stick to routine as much as possible, but a little is better than none if you can’t do the full routine. In my regular life I do 20-30 minutes of face massage every day and at least some movement (walking, pilates and yoga are my main go-tos), and meditation. It’s laborious, but it makes enough difference to pain levels to make it worth doing. So, while away, I make sure I keep doing these things. I paid for a series of tutorials from a Russian fascia specialist called Anastasia as it’s so beneficial to me, but there is a 10-minute face massage routine that is free on her YouTube channel. As mentioned above, I have a travel mat that I use to practice yoga anywhere I go, and if the weather is nice, I like to walk outside to soak in the fresh air. If attending a conference, there is often not time to do the full routine. I just do the full routine on the days that I can, and then on days with a fuller schedule I make trade-offs - perhaps 10 minutes of face massage instead of 20, and 15 minutes of yoga instead of a full 60-75 minute practice.
Minimise sugar, alcohol and empty carbs (or whatever causes inflammation in your body). This one can be tricky because being away often involves socialising and indulging. I will indulge here and there, but I pay for it, especially with weakened immunity on the way home. In the past I’ve allowed myself a drink or some sugar here and there, but I got sick on the way home on this last trip and am starting to question whether the indulgences are really worth it. More on that below.
Accept your limitations, or deal with the consequences! In the first few days before a conference or jam-packed schedule I try not to pack too much in, as I simply can’t sustain it. I find back-to-back schedules (like at conferences) extremely physically challenging. After the first day, my body tends to want a half day to rest, move and reset my baseline, but these events usually go several days without a break. So, during a conference I know that if I stay up talking all night on day one, I may have to push through a migraine on day two. I don’t have hard rules about how to navigate this, but I find having a ‘trade-offs’ mindset helps me to make decisions as I go. Maybe the conversation into the night is worth it. Maybe I’d rather cut it short, go to bed and pick it back up tomorrow.
On a bad night - yoga nidra, a physical book and deep acceptance. On this last trip, I had one nearly sleepless night. My nervous system was too wiry, I was feeling a burst of pain in my face, and I couldn’t settle. On nights like these it’s tempting to panic - ‘Tomorrow is a big day! I can’t afford a sleepless night!’ I have found that fighting it or getting angry makes it worse. My technique for finally falling to sleep is first, cry. It’s very frustrating, and if I move past the anger, usually I’m upset and will cry about it. Then I pray a prayer of acceptance (the serenity prayer works for me) and either put on yoga nidra or pull out a physical paper book. Reading paper pages will tend to lull me into a sleepy state within an hour or two at most. I also have learned that if I just lie there, eventually my body will fall asleep even if only for a few hours. So, once I put down the book or finish yoga nidra, if I’m still not asleep, I just wait and make a concerted effort not to mentally engage in the panic spiral. The next day, I try to focus on what I’m grateful for, and to acknowledge how I feel but not complain. Complaining, I find, perpetuates the cycle. That doesn’t mean I can’t feel annoyed about a sleepless night, and I will certainly tell my partner about my frustrations, but I try not to dwell on it. This is my favourite yoga nidra meditation, free on Insight Timer.
On return
On the flight home, I do all the same things I did on the way there. I leave a few days empty on return to ‘land’ and don’t push myself too hard.
Infrared sauna for jet lag recovery (or regular sauna if infrared is not available), plenty of fresh air and rest, eat clean, light movement.
So far, I’ve found doing all the above keeps pain relapses at bay. I’ve managed to successfully do a few trips now where I have not slid into a pain hole on return, which is very encouraging.
HOWEVER, on every major trip, including this most recent one, I’ve gotten sick with a respiratory thing on the way home which invariably sends me to bed for a week or several. It’s really annoying. I went to see my medicine man and he reminded me of the importance of minimising inflammation - this is where I’m wondering about the wisdom of indulging in a drink or sweet treat here and there while away.
Things I’m going to try on my next big trip, a month from now
If I can muster the discipline, I will completely avoid (or further minimise) all the inflammatory things mentioned above.
Packing antivirals from the medicine man.
Nasal spray for the flights. There’s good research on nasal sprays (xylitol, various silver blends) being excellent for staving off respiratory viruses. I’ve ordered one and will see if it helps!
I’m considering breaking up my flights so as not to do so much long-haul travel in one go. If I can’t stage this trip out (it’s already booked, so I’ll have to see how flexible the booking is) I’ll keep it in mind for the next one.
I also have been a bit concerned about my legs swelling, so will try some very fashionable compression stockings (seriously, why are they all so ugly??) on the next trip and see how that feels.
None of this is medical advice. It is purely my personal experience. Please share your experience and tips in the comments!
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Hey Rebekah - have you seen A Midwestern Doctor's deep dive into DMSO (dimethyl sulfoxide)? He swears by it, and brings the receipts (scores of studies reviewed and linked).
I have just purchased some, keen to see if it works. Given it's multi-modal action and uses, it might be worth reading his article, at the least...
https://www.midwesterndoctor.com/p/dmso-is-a-miraculous-therapy-for
I'm a former flight attendant, one of the many all over the world air who have lost their career, health (and some, their lives) from breathing fumes of aircraft engine oil, an organophosphate (OP) that is neurotoxic in vanishingly small amounts (ppb), and is also an endocrine disruptor. I had to stop flying in 1997 and since then it appears the main conditions affecting crews are chronic fatigue, multiple chemical sensitivity/EMR sensitivity, neurodegenerative conditions, and cancers. Of course, pax are also affected but they may never attribute their conditions to cabin air contamination.
With the exception of the Boeing 787 (that has an independent air supply), the only air you can breathe on board is bled from the engines and goes through air conditioning packs before being pumped into the cabin to pressurise it, and for pax to breathe. Of course, there are seals that are meant to prevent oil ingress, but they're subject to wear; also, they must have some oil on them to work. Even if there are bearing/seal replacements in the course of the aircraft maintenance, the ducting is a sponge-like medium and is always thick with oil, so cabin air contamination continues. The hapless pax are completely ignorant of the fact they're breathing this poison, and no onboard air quality testing is done, so the airlines/aircraft manufacturers (who have known about this for literally decades) can truthfully say nothing has ever been found.
On long haul flights, as well as being poisoned by engine oil to a greater or lesser degree for upwards of 24 hours, the aircraft coming into Australia (and some other countries, too) are sprayed with insecticide - usually it's done just before pax board, but last year the carrier I was on was running late so they came through the cabin with their cans of pesticide just before we took off - it took me several months to really feel like I was back to 'normal' (which is far, far below how I was before I started flying and was fumed on a daily basis).
So, whether you have CFS or similar conditions and really want to/have to fly long haul, or if you just want to preserve your health, in addition to all the things Rebekah does (I do them too, but they're absolutely no match for OPs and insecticides), ONLY fly on a Boeing 787. In addition to uncontaminated air, the cabin pressure is set to 6,000 ft (most aircraft are 8,000), so mild hypoxia will be less - women become hypoxic at a lower altitude to men. For about 10 years I've only flown on a 787 long haul, but after being pesticided last year, this year I went a step further and had BY FAR the best health post-flight I've ever had. Presumably because they're flying in and out all the time, rather than spraying each flight, Qantas chooses to use a residual pesticide spray on a 56 day cycle (as mandated by the Aust Govt biosecurity regs). Unfortunately, there's absolutely no way to determine a pesticide schedule so you just have to hope to God it wasn't done in the week you fly. Although Qantas is expensive, I had such a good result from both flights to/from the UK I will now never travel long haul with any other carrier (and certainly never on a different aircraft type).
A further refinement - if I have to stay in an airport hotel, I always book one upwind and preferably about 15 mins or so away from the airport because the oil droplets belt out of aircraft engines into the atmosphere, and I certainly don’t want to be breathing that contaminated air all night. I always try to minimise time in the terminals, too, because the air is drawn in, unfiltered, from the surrounds – engine oil is distinctive if you know what to smell for, and I can remember sitting in a café in Heathrow and smelling it – there was an air conditioning vent just above my head and it was bringing in contaminated air from straight from the tarmac.
For anyone wanting to read more about this (so known, but sooo not publicised), look up the work of Dr Susan Michaelis, who was a Captain I used to fly with before her health (and mine) was ruined - she subsequently went back to uni and gained her PhD on this issue, and now acts as an expert witness. These days gut dysbiosis is blamed on glyphosate and EMR, but the illnesses/conditions of endless crew predate both - another captain who was medically retired from Ansett was told she had the most dysbiotic gut her doctor had ever come across, and that was 1997.