Lymphedema Travel Tips - Pam's story

A Bit of Background

At the age of 9, I was diagnosed with primary lymphedema. At the time they didn’t know much about it and I was the recipient of a lot of bad advice. I know now that I was born with no functioning inguinal nodes which are an important relay system involved in the filtering and drainage of the lower legs. As a result, I experienced swelling and have suffered some pretty bad infections. At some point, a doctor looked at my mom and said just let her be a kid. So she did. As I grew into my teens I found sports was my calling and became a competitive athlete all through school. I would wrap my legs in ace bandages (some of the bad advice I received) and just do my thing. It was not always the easiest thing as a teenager to be a freakishly tall skinny kid with big fat ankles that you can’t always conceal when you are competing in sports but I dealt with it. I guess you could say it built character! As time went on, I learned more and sought out better forms of lymphedema management including proper compression but those years as a teenage athlete taught me that you can do more than you might think you can and you won’t ever know what you can do unless you try. Now at the age of 59, I have been married for 38 years, raised 2 boys, and even though my lymphedema has progressed a bit I still utilize that same mindset to this day in order to be the best role model I can be as my boys enter adulthood. I would hate to think of what condition my legs and my life, in general, would be in if I didn’t.

Travel Tips

My mantra is to suck as much joy out of every day possible. Lymphedema doesn’t stop me from doing that! However, it does mean utilizing a good bit of careful planning, patience, and allocating the time necessary to manage it properly. Traveling to see a loved one or have a new adventure is definitely one of those things that bring joy to my life. I am here to tell you, that no matter what stage you are in you can literally go anywhere and do anything as long as you (and those that travel with you) put caring for your condition as the number one priority. It is our nature to tough it out and say we are okay and keep pushing through. Instead of doing that it would be ideal if we could ditch the FOMO (fear of missing out) and as a result of taking time for self-care we will be able to see more and more importantly enjoy more in the end. Does this mean you might have to give a few things up? Yes. It is okay, now you have a reason to come back!

  I was asked to write a travel blog because a few years ago I maneuvered a special trip of a lifetime, 30 days throughout Europe which was carefully orchestrated to manage my condition and allow for the best chance of being able to see and experience as many things as possible. It was quite something and I am so grateful it happened because what came next we never would have expected. You guessed it, a worldwide pandemic. As a result, it has been 3 years since we have traveled. We are now vaccinated and it is the time!

  Our first trip since COVID will be to Willamette Valley in the Oregon wine country to visit our son who has just begun his career as an aspiring winemaker. I was a bit nervous as to how I would manage a trip centered around wine tasting as a newly dedicated Keto convert!  I will share the day-by-day of our Oregon adventures and how I managed this travel experience from a lymphie’s perspective in a separate blog but first and in case you are short on time or interest I want to just give a summary of the takeaways. Here are some helpful hints I put into practice whether I am on a road trip, short flight trip, or a long haul. Some of it is common sense but I hope you will find a new tidbit that you find helpful or maybe just a reminder of something you already know but need to put into practice.

The takeaways:

• Find patience. This has not always been my strength but I am learning.

• Be willing to give a few things up. It gives you something else to plan and look forward to the next time.

• Make a goal to have the entire day before you fly/drive to elevate, soak, exercise, and get your legs into the best shape possible to avoid blowing your legs out before you even get on the plane. Try to do the following:
  • 5-7 days prior to travel knock out all your errands - Bill paying, house sitting, pet sitting arrangements, every bit of laundry, etc.
  • 4-5 days prior to travel pack your clothes. If you are like me it is a 2-day process! Set out the few items that you still need to use beside your suitcase so it is quick and easy on that last day. I pack my toiletries 2 days before travel and just use them out of the bag so that I am not on my feet that last day trying to decide or round up what I need. It’s already done.

• The trip begins 1-2 days before you actually want to do something on the other end. Basically, if you can find the patience to schedule a day to practice self-care on the front end AND the back end of your flight you will find that you are in a perfect place to actually enjoy whatever activity you have planned. It will be worth it.

• Try to bring as much of your medical equipment as you can stand to juggle. On a long trip, you can carry your Flexitouch machine (compression pump) in a rolling carry-on and pack the leg/arm attachment in your suitcase. You will have to pull it out at security and have the whole discussion about WTH is that? It is worth it. If your trip is not so long you could get by with MLD (self or spouse), day & nighttime garments, exercise ball (deflate to pack), Epsom salts, electrolyte powder, Keto snacks & a travel container of Woolite to hand wash your compression. For trips with a lot of walking/standing & sightseeing, you can also bring a cane with a fold-down seat which can be used in a pinch if the tour guide is causing you great pain (literally) with her long explanations. It’s also great for getting a seat on a crowded bus/train so you don’t have to stand!

• Extra compression during flight is extremely helpful. I used to use short stretch bandages, with the foam underneath for exceptionally long flights. I don’t know if this is too much but I also used it on a few of those days when we were doing extremely long walking tours. Ask your therapist if they think this is okay for you. On a recent shorter flight I tried putting the Sigvaris Velcro Wrap on top of my regular compression and that was less intense and worked well. I took my shoe off in flight to put the foot part on which really helped me because it could be tightened down over the area with fibrotic tissue.

• Do get up and walk the aisle a couple of times during your flight. On my last flight, I didn’t need to use the restroom but walked up there anyway to get my circulation moving. I thought once I was in there I would go ahead and do about 10 squats to get the blood pumping into my legs. I am 6’1” so yes, I smacked my head on the ceiling at least 3 out of the 10 times but my legs felt better!

• While seated do all those exercises to increase circulation to your feet. Ankle circles, leg raises, etc. YouTube has a bunch. They help tremendously.

• It is hard not to be a people pleaser when traveling with others. I limit who I travel with for that reason but if we have our (adult) kids with us or another couple they know ahead of time they will have to do/see some things independently so I can recoup for the next thing. This might just be in the evenings or on a longer trip a whole afternoon as well.

• The things that help me recoup the fastest:
  • Lay flat on the bed with your feet on the exercise ball (inflate so that it is not too hard). Bouncing them up and down gently on top of the ball will massage your calves and get your circulation going stat!
  • Swimming
  • Especially on long trips consider replacing your showers with Epsom salt baths (lots of salt). I know it's gross to think about sitting in a hotel bathtub and I will admit some of them I just won’t. However, there are times when I need to save every second of standing time for seeing sights and a long Epsom salt soak at the end of a day will take a lot of my swelling down and get me cleaned up. It’s a 2 for 1! How do I get over the gross-out factor? Bring Clorox wipes and wipe out the tub, run the water as hot as it will go and rinse the tub, and then place a hotel hand towel on the bottom of the tub to sit on. The towel part is unnecessary but it gets me over that mental hurdle. Seems silly I know but in Europe, I did this most nights unless I needed to wash my hair, and then my legs would be ready to go for the next day. We learned how to say Epsom Salts in several languages as we would search out a pharmacy to replenish our supply for the next day while we were out.
  • If you have time get down to the gym in the a.m. before you go out even if just to stretch and get things flowing. If not, you can do this in your room (even on your bed).
  • Try to plan out what you will do each day in advance and alternate days which require a lot of standing/sitting with days that will not require as much. Maybe throw in a good spa and chill by the pool day right in the middle of it all if possible!

• One of the easiest ways to travel without a lot of wear and tear on your legs is a cruise. Our first week in Europe we were with another couple and this way they were entertained whether we were together every minute or not. I was able to swim every night after seeing the sights and we traveled while we were sleeping and rejuvenating for the next day. We took in a lot of different locations without having to pack up and move each night. It was to this day my most memorable week of travel.

• Eating out every single meal will not always be ideal but try your best to stick with foods that won’t cause an inflammation heyday. It is helpful if you can book a hotel with a kitchenette. On our last road trip, we brought a cooler so we wouldn’t be spending time on the trip standing in line at a grocery store. We packed keto snacks, breakfast food, and a few pre-made items to use if we wanted to be in for dinner. It really helped to have that food already in place and readily available.

• Above all, just do your best. Everything will not go perfectly and you will not always be able to do everything you need to while you are on the road but roll with it and do as much of it as you can. Remember it is okay to opt out of something if you need to. I find that if I focus only on the good things I experienced I can quickly get over what I had to miss out on knowing that I will hopefully be back again someday!

• Most of all remember that life is short so take the trip! Enjoy and happy travels to you!

Pam