Friday, January 10, 2014

Traveling 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.

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 U-shaped neck pillow that my son recommended (you can buy them in any airport gift shop and he was right - it did help). 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. 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.

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!). They are compression socks (you can also buy compression stockings; wearing Spanx-type tight garments 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 powdered electrolyte solution (we like GU Brew). 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).

So, that's my traveling kit. 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.

I hope anyone else who had to travel over the holidays survived the experience OK!

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

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Anonymous said...

For me, the big one you missed is ask for a wheelchair. I started using one (with an attendant when I traveled alone) from the airline. Now I travel with my own. Not only does it save on energy for walking, but most places you cut through lines in security and board first on the plane. Heavy bags can be on my lap or hung on the back of the chair. Most places the attendant will take you through baggage claim (getting your bag for you) and to a shuttle stop for hotel or rental car. There are times it is a little bit of a pain, but always worth the effort.

The other tip for anyone renting a car would be to join the preferred customer club for the agency you are using. Helps to skip the lines. One time while traveling alone I had to stand in line for an hour - then be physically and mentally able to drive.

Sue Jackson said...

Great idea! I am in pretty good shape (for someone with CFS lol) and can normally manage the walking OK, but I know many people with CFS need to use a wheelchair when out. And, for anyone, it would help on those very long travel days, like the one I just had!

Thanks -


Anonymous said...

Wheelchair in generall is always a huge help. But I also avoid it cause I can manage without it most of the time. But it would reserve a lot of energy for other stuff and could help you work if a wheelchair is possible to have in your workplace.

everydayjoyandme said...

I definitely have improved my travel experiences by using the travel assistance at the airport. Even though I don't use one normally using a wheelchair through the airport saves me so much energy and I recover quicker. I'm going to look in to OI too thank you!

Sue Jackson said...

That's great! I've heard so many people say that. I no longer need it now that my OI is well-treated. I had an 18-hour nightmare trip home from Oklahoma last month, where we were sent through 4 airports, on 3 packed flights (back row all the way!) with loads of delays and didn't get home until 2 am - of course, I felt awful by late that day, crash at all the next day! I knew I was doing well but that surprised me. Glad to hear you are able to travel, too.