*I am not a medical professional. I am a person with severe ME/CFS and this is based on my personal experience and the advice I got as a patient from the Stanford ME/CFS clinic.
This is specific advice about traveling and being out in the world with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). It also may be helpful to others with overlapping issues.
Here is a resource page I made for people with ME/CFS to deal with everything else (resources, research, doctors, treatments, etc.).
There is a huge range of ME/CFS and you need to tailor your travel to fit your level and then pad that level to account for the extra stress of being out in the world in stressful/high sensory input situations.
With ME/CFS normally: At best you are chronically tired with some amount of pain and headaches and brain fog, but able to work and walk and do quite a lot of things normally, if with pain and tiredness. At worst you can be confined to bed in the dark with headphones on to block the noise of people tiptoeing outside your door and a feeding tube, unable to even roll over in bed. Here is a scale to give you an idea of where you might be at. You will of course be worse during crashes- and you want to avoid crashes as much as possible because they can make you become worse overall. Obviously travel does not work for the most severe of us, but I started traveling at 10% on these scales and managed without crashing. This post is about how.
If you want to skip personal stuff, scroll right down to ”Pace and Rest”
I started at 5% on both scales. After starting one treatment (valtrex) I was at about 10% on both and I started getting out in my power wheelchair (with headrest, full recline and raisable leg rests). When I took my chair to the first CFS specialist I saw he said I was the most severe person to come into his office in 20 years (the more severe people couldn’t come in). After more treatment and careful pacing I’m now more like 10-15% on the physical and 50% on the cognitive, but I traveled to Disneyland, Honolulu, and New Hampshire while I was still at 10% on both (looking back I should have been more careful and paced more at Disneyland as far as sensory input). The one thing about this scale that is off for me is that it assumes a regular upright chair. If I had to sit upright in a chair I would need a week to recover after going out for a few hours. With my reclined chair with the headrests and raisable footrests I can go out without crashing at all as long as I am careful about sensory exposure.
We have to be very, very careful with ourselves to not get worse. We have to protect our brains from overstimulation and our bodies from overwork, but travel without crashing is possible even when you are severe (though not when you are very severe). If we can tolerate some movement and sound and light and different visuals we don’t have to stay trapped in bed for our whole lives. There are still things we can still experience and enjoy.
PACE and REST
I hope you have already learned this is the secret to living with ME/CFS. You need to stay well within your safety envelope for activity when outside or traveling. This might mean using a wheelchair when you don’t normally use one. Being totally careful can be impossible during a trip through the airport, but what you can do is rest very carefully for the week before and completely (laying down in dark quiet room) at least half a day after arriving. If you use a wheelchair take full advantage of it. Manage the expectations about the pace of activities with your travel companions ahead of the trip. Take every opportunity to rest in quiet and dim light between activities. Take a day or half a day in bed while they go out if you need to.
Rest for the week before you go, for at least a half day when you get there and for several days to a week after you get back.
Hydrate Always have water or your hydration of choice with you and keep drinking. I really like a mix of 1/4 lemon-ginger-echinacea juice and 3/4 water when I can, but traveling it is easier to add emergen-C or Rebound powder or similar to a water bottle. With ME/CFS you are more likely to have orthostatic intolerance, which gets worse with dehydration, and flying dehydrates, so make sure you stay hydrated!
It depends how severe you are, but you might need to have a wheelchair for travel even if you don’t usually use one. However severe you are, a good idea is to assume you are worse if going through an airport if you want to stay within your energy envelope and not crash. Airports are full of stressors and long distances that can wipe you out and crash you if you aren’t careful.
If you are more mild, maybe you just need a loaner wheelchair from the airline to get through the airport and to rent a scooter for places like Disneyland where there is a lot of walking and scooters are easy to rent.
Can you sit up for a while without wearing yourself out? Can you walk for a few blocks? Maybe a more simple (and easy to manage) chair is for you. A foldable power chair is way less of a commitment because you can put it in the trunk of a normal car. You do need power because your arms will tire just as much as your legs if you try a manual one. There are some with a recline that you can add a headrest and raisable footrests to if holding yourself upright or orthostatic intolerance is something you have trouble with. You can use it as often or as little as you need it.
If you are more severe like me, and can’t sit up for long, and jostling is overloading to you and standing makes you dizzy (orthostatic intolerance) you need a more serious kind of chair that does not fold. Having a strong, stable power wheelchair that fully supports your body is important. Having a stable recline with a headrest is important. Having a strong, stable leg rest that raises is important. In that kind of chair you can fully lay down to rest whenever you need to. Unfortunately it is the hardest kind to travel with and requires a van, but that’s what my entire blog is about so I’m here to help.
To protect your brain:
Don’t underestimate the way the overstimulation of an airport environment will wear you out. BE CAREFUL. Keep yourself way within your activity envelope because you will be experiencing stress. Treat yourself like you are a category worse than you are to avoid crashing.
Get good earplugs/headphones
Earplugs or some form of noise canceling headphones are a must, especially on planes. If you can get them and have an iphone, I have found AirPod pros a great solution. They are a little bit magic with noise cancelation at “muting” the world like the big bulky noise cancelation headphones but much more discreet and portable. The big headphones may work slightly better but they are big to carry around all the time. You might want both for different situations. If you get AirPods, I suggest getting a case holder that you can clip to something you won’t lose (like your phone case or bag). I put a tile on mine to be able to find them more easily since they are otherwise easy to lose and hey, brain fog doesn’t help! You can still hear people through them but they dampen the background noise. If you need to hear better for a moment you just squeeze them and the sound dampening stops. Always wear whatever ear plugs or noise-canceling headphones you have on the plane. You don’t notice it, but the background noise of a plane will wear you out.
Always have sunglasses
I never used to wear them but I never leave the house without them now. I got a bunch of pairs of cheap sunglasses and I have them everywhere- in my bag, on my chair, in the car… you need them to keep your brain from overcooking from sunlight. Wear them whenever you are outside even when it isn’t too bright. It will help stop you from getting the headaches.
If it is sunny, wear a hat too
This can be harder in a wheelchair. I don’t like ball caps (which do work better in a wheelchair) and it took me a while to find one that both gave a lot of shade and stayed on when I was leaning back in the chair. Floppy ones or backless ones work well. When it is sunny your brain needs the extra protection a hat offers.
Heat I mentioned it in the wheelchair section, but I’ll say it again. Bring a blanket. Always have one in your bag. People with ME/CFS have poor temperature regulation. You want to make sure you don’t get too cold. Have a good hot water bottle with you too (one with a metal thread on the stopper). You can fill it at any cafe.
Cover your eyes/head
Get one of those eye-covering things for blocking light for sleeping and keep it with you at all times. Another thing your blanket is good for is covering your head. If you are in overload and need true rest and can stop for even a moment, don’t hesitate to lay back, cover yourself up and put in your earplugs.
Wear your softest, most comfortable clothes
Everything your brain has to process adds up. A bad texture or a tight waistband can be one more thing wearing you out. Make sure it isn’t. Also wearing clothes that are easy to search/pat down is good. The more easy they are to search the less they poke.
Consider Compression stockings/socks
For some of us this is helpful for orthostatic intolerance. For others the sensation is too much. Do what works for you, but I suggest trying them out before you try them on a trip.
On the plane
Try to get a seat nearer the front to minimize your walking. Sometimes if you call disability services for an airline they will “bump” you to a better seat near the front for free.
If you are severe and have trouble supporting yourself sitting upright for any length of time, you probably have to get a business class seat in a plane with lay-down seats. I know this is twice as expensive and a hardship, but if you are severe this isn’t luxury it is necessity.
When you book there is usually a way to see the plane layout/seats. You can see what kinds of seats each plane has and for the long flights you can usually find one plane that has these even if the timing isn’t ideal. If you aren’t sure call the airline. If there is no plane all day with lay-down seats going your way, still get business class because they lean back farther and you have more room to prop yourself up, but make sure you don’t get one of the seats in the last row! They don’t recline at all. Get a window seat so you can lean against the wall of the plane. If you get the lay-down seats you also get more quiet and calm in your cabin. The experience is restful rather than stressful and it gives you a space to recover from the stress the airport.
Keep checking back before your trip to make sure they haven’t swapped planes. If you need a lay-down seat like me, sit-up is not an option. If they change the plane you need to call customer service and explain it is an ADA issue and they need to get you on a plane that does have lay-down seats without a rebook fee (since it is their fault for swapping).
These tickets cost twice as much, there is no way around it. Sometimes if you book through a travel agency you can get a discount. What I do to help is get a credit card that gives me miles that I use for everything and we buy my husband and daughter’s tickets on miles when we can and pay full fare for mine. We stick with one airline (we use United- it has a better than average track record on not breaking chairs and a good loyalty program) and accumulate miles. The miles add up quickly when you pay for business class full fare, and then after a few trips you can get a business class ticket with miles. You also might get enough for a loyalty reward program (silver/gold, etc) and that makes things easier too. I know this can be a hardship, but if you can’t sit up for hours without causing a crash, then the flight will crash you and the trip will be you in a hotel room crashed instead of you out enjoying the trip and then there is no point in going.
On shorter flights I take my chair’s pillow and coats and my bag and get a window seat and prop myself on the pile of everything and alternate between leaning on that and the wall and that and my husband.
Don’t travel alone if at all possible
I know this sucks. I know this disease isolates people and it may be hard to find someone. If that is the case for you I am so so sorry. I have traveled alone. It is harder, but it is possible. I would say that if you travel alone, tell the airline ahead, notify TSA cares (which should provide assistance from curb trough security) and at check in and make sure they send someone to assist you for getting through the airport and boarding the plane and back. The person assisting you will get you from the ticket counter to the gate, but they will leave you at the gate. Make sure you have gone to the bathroom before they leave you to wait because they will take the wheelchair if you were borrowing one. Then when boarding happens they send someone to help you board. When you get off the plane ask for assistance with baggage and getting to your ground transport. Explain that you have sensory overload issues and need them to go slowly because they tend to book it. At security ask for a manager to watch while you get patted down (this sounds like overkill but trust me).
If you aren’t traveling, but just starting to go out in the world in the wheelchair, still bring someone with you on your first ventures out to new places if at all possible. Learning how to handle being out in the world with ME/CFS and a wheelchair is difficult and stressful for the first few months and support makes a huge difference if you can get it.
If you have someone to travel with you have a conversation with them beforehand
You may not have the spoons to handle explaining what you need in the moment. Make sure they understand that you will be doing nothing. You might get overloaded and become mentally useless. They have to handle the luggage and help you get through everything. You can’t handle the strain of traveling and deal with figuring out logistics and bags and wandering children and all that. Many of the lines in the airport are very difficult to navigate in a wheelchair. Them getting food or drinks is helpful. Obviously luggage is something you can’t do on your own. They need to help with that too. They need to understand that they have to fully support you so you can handle the strain of just being in the airport and on the plane.
Getting you on and off the plane, from your chair to your seat and back is a big one that your travel companion or the airport assistant needs to help with. You may also need to prep your chair to survive airline travel and they should do that for you. Do a dry run of that at home before you try it with an airplane full of people waiting and travel stress. If your travel companion is sitting in a different class from you (we do that since I have to be in business) make sure they go with you to get you settled and come up to you as soon as possible when the people are de-planeing.
Tag your bags
Since you won’t be the one collecting all your bags, make sure your bags all have some recognizable matching thing on them that makes it easy for the airline employee or your companion to identify them. I use rainbow ribbon tied to mine.
Travel on the ground
The situations are too many to describe, though I try to cover the wheelchair aspects in the rest of the blog. Just seek peace and quiet wherever possible, pace and rest and get help wherever you can. Some places have quiet rooms that are available if you are having sensory overload.
Safety and security while out and about alone: Consider an Apple Watch or something similar. If you have an iPhone or can get one, and can get an Apple watch I consider it a safety feature when I am out on my own. It has an SOS button that calls emergancy services and brings them to your location. If you fall while wearing one and don’t shut it off, it will call emergancy services to your location for that too. You can put people in your contacts list into “emergancy contacts” and if either of these things happen it will tell those contacts and give them your location too until you say to stop sharing location. You have a period to cancel the button/fall call if it was a mistake.
One of the other things it does is monitor activity. What I did was put in a very low activity “goal” that was at the edge of my envelope. When the watch tells me I am “meeting my exercise goal” I know I a doing too much and need to rest the rest of the day. You can also monitor your heart rate for activity monitoring.
It can also be set up to give you alerts if there are irregularities with your heart which might be dangerous and will tell you to go see a doctor if it sees something worrying. This feature probably saved my stepfather’s life and has saved many lives. The newer ones do EKGs and blood oxygen levels.
Full disclosure: my husband works for Apple on the watch. This also means he gets to hear the stories of lives saved, which are many.
Good luck. You can do this!