Air Travel with ME/CFS

Or maybe I should call this post The Traveling Circus. I used to pride myself on being low-maintenance, but now I have to carry so many supplies with me and stick to such a careful routine that traveling is a real pain. Our preferred mode of travel is by car (preferably with our pop-up camper in tow!) - in our own vehicle, I can bring along all that I need and we can stick with our own little routines (like my nap time after lunch). Sometimes, though, like just recently during the holidays, we need to fly to visit family.

I thought I'd share my own strategies for travel - and especially air travel - since I've gotten pretty good at it over the past 12 years. I try to keep my carry-on bag as light as possible, though it is usually stuffed full.

Nap/Rest As Much As Possible

First, there are my napping/resting accessories:

I carry a backpack which is the easiest way to carry stuff through an airport, though my husband needed to carry my pack for me several times this trip. Inside the backpack, I stuff a very thin fleece blanket, a small neck pillow, and this time, I added an extra inflatable U-shaped neck pillow (all four of us have these now - they are awesome and easy to bring along! Here's the one we like and a cheaper alternative). The fleece blanket I usually fold up into a small rectangle and use as a lumbar support on airplane seats - even if I were healthy, those seats are uncomfortable, especially when you are 5'1" and they are designed for 6' tall males! I could also use it if I got cold, but that is unlikely - since ME/CFS, I am usually too hot!

The neck pillow(s) I use when I nap, which I have to do even more frequently on a long airplane/airport day. I also bring an eyemask and earplugs (for even better noise reduction, try silicone earplugs). Once the plane is in the air, I usually put all that on, lean my seat back, put my feet on top of my bag, and do my best to rest/nap as best I can. My sensory deprivation kit! The pillow and blanket pretty much fill up my backpack, but they are lightweight.

Treat/Monitor Orthostatic Intolerance

The other group of items I carry in my backpack (besides a lightweight paperback or my Kindle) are related to Orthostatic Intolerance (OI). In addition to too much exertion going through airports, the other major danger in a day of air travel for someone with ME/CFS is even worse OI than usual, brought on by air pressure changes and being upright too much (if you have ME/CFS and think OI doesn't apply to you - it probably does. Over 97% of ME/CFS patients have some form of OI, basically an inability to maintain a steady blood pressure and heart rate due to low blood volume and autonomic nervous system dysfunction).

I wear these lovely-looking kneesocks (they come in much nicer styles now, like the ones at this link). They are compression socks (you can also buy compression tights; wearing compression shorts around the pelvis area also helps). People with OI have difficulty keeping the blood circulating properly to heart and brain - it has a tendency to pool in the lower extremities, especially when upright - so the socks or stockings help quite a bit. You can buy them in any drugstore or online.

Other items, like the water bottle, are related to hydration. While it's important for anyone who flies to stay well-hydrated in that dry environment, it is critical for those of us with ME/CFS. Part of OI is not being able to hold onto fluids, so we need lots of fluids and lots of salt. Post-9/11 restrictions have made this more difficult! I used to bring a full water bottle and a large can of V-8 on planes with me (my son brought Gatorade), but now you can't bring liquids greater than 3 oz. through security. So, I bring my empty bottle, along with a small bottle of Elete, salt water drops that you add to your water (Elete is sold in tiny bottles that would meet airport regulations; I brought an almost-empty bottle - I buy mine on amazon) and fill my bottle with water from water fountains or just buy a couple of bottles of water once I am through security. My son does the same, plus he adds electrolyte solution (we like GU Brew tablets). I still look for V-8 in the airport before I fly or order tomato juice or Bloody Mary mix (without the alcohol) on the plane - both have lots of sodium plus potassium, too.

And finally, I wore my heart rate monitor while walking through the airport. It was enlightening, as always! I found that if I was carrying my backpack, my heart rate went up past my AT pretty quickly - that's when I handed it over to my husband to carry for me (I also had my laptop in my pack this trip which added too much weight for me - lesson learned).

Request Wheelchair Assistance

(added June 2023)

Thanks to many treatments (including treating OI), I am normally able to manage the walking that comes with air travel. I try to arrive at the airport early enough that I don't have to rush, I wear my heart rate monitor and stay within my limits, and I try not to carry too much weight. However, even with all that, air travel involves a lot of walking and standing in lines, all of which can cause a post-exertional crash for those with ME/CFS and long-COVID.

This past January, my husband and I had to fly at the last minute to Texas for a family funeral. This meant two connecting flights each way, with a full day of travel there and back. At the time, I was not in very good shape and knew I couldn't tolerate that much walking and standing. For the first time ever, I requested wheelchair assistance.

What a game-changer! In all three of the airports we flew through, the people who assisted me were incredibly kind and helpful. Our first flight left out of the very last gate in a very long concourse, and I never could have walked it myself at that time without crashing. On the way back, our first flight was delayed, leaving us less than 20 minutes to get from the end of one concourse in Atlanta (huge airport) to the end of a different concourse; we would have missed our connection without the assistance.

Plus, I learned about a hidden bonus with wheelchair assistance: no standing in lines! At security, we were whisked to the front of a line and through very quickly. I opted to walk onto the plane on my own, but that involved a lot of standing, too, and the assistant will stay and push you right to your seat, if you need that. Since standing still can cause a crash even faster than walking (again due to OI, with blood pooling in lower extremities even faster when you're not moving), this is a very important benefit.

Don't be afraid to ask for the help you need! It was a very positive experience for me.

So, those are my air travel tips. It all helps, though a long day of air travel is still exhausting. With all of these aids, it is easier and takes me much less time to recover.

Do you have any air travel tips to add to my list?

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