Thinking About Traveling with Lipedema?

Here's what I learned when I went to Hawaii on a girlfriend trip.

Hi Everyone!

Happy 4th of July! I hope everyone is well and enjoying the long weekend. I’m curious if anyone is traveling for the holiday?

I love to travel. For me, it’s not only a time to relax but also to explore and take in the local sights. So, back in April, when my best friend, Sherry, told me she was taking me to Hawaii, I was all in!

In May of last year, Sherry lost her father. She called me in a panic because her 92-year-old dad wasn’t picking up the phone and she couldn’t get to his house. I drove over and found him down on the ground. I called for paramedics to take him to the hospital. When we saw he wasn’t going to make it, I helped her through some crucial decision-making. Sherry was able to get him home with hospice and get her brother, who lives in Hawaii, to fly in and see her dad. I stayed with her until he passed away peacefully in his home.

This past January, I had the same thing happen with my mom. She wasn’t doing well, and I had to fly down to see her, get her out of the hospital and onto hospice, and have my brother (and daughter) also fly down to be with her as she peacefully passed at home with all of us and her husband by her side.

Since that event, because of stress or whatever reason, my Lipedema started getting worse. I gained weight; my legs started swelling despite my physical therapy, compression hose, and lymph machine. And I struggled at work because of pain and fatigue.

Sherry called me one day. “Michelle, I know you’re having a hard time, and I want to thank you for helping me with my dad, so I’m taking you to Hawaii!”

She bought me a plane ticket, and with another friend, we’d fly down and stay at her brother’s house in Kauai while he was on vacation.

Essentially a free trip to my favorite place? Hell yes!

I told my physical therapist about the trip. We talked about how to manage my lymphedema while I was gone. I knew I wouldn’t wear compression hose while there—too hot. She asked, “Are you bringing your lymph machine?” That thing is so bulky, and I wouldn’t say I liked the idea of lugging it around, so I told her no.

“You may want to reconsider taking it with you, just in case.” She said.

I knew she was right, I had to admit I needed compression of some sort for my legs, so I bought a giant suitcase and took the machine with me.

On the flight over, I wore my tightest compression hose. The six-hour flight didn’t seem like a big deal, and I thought I was doing okay. However, when we arrived, I was so swollen, in pain, and exhausted that I only wanted to sleep. I get physically ill when my legs swell, and nothing makes them better except to put my feet up and rest.

I hooked up my lymph machine and kept it on—for two days! Yep, It took me two days of sleeping and pumping my legs to recover from the air travel. I felt so bad because it was only Sherry and me for those first couple of days, and as much as I wanted to go to the beach or really do anything, I couldn’t move my body out of bed.

Amy arrived a couple of days later, and I was grateful that Sherry finally had someone to do things with her. I was also starting to feel better, enough to go out.

I wanted to lay on the beach and snorkel. My two friends wanted to sightsee and go tourist shopping. So, I endured being in the car for the day and walking around from place to place. We did this every day, and every day when we got home, I climbed into bed, put on my lymph machine, and collapsed.

Towards the end of the trip, I told them to go out without me. I hung out at the house, read a book, and slept. My Hawaii vacation was exhausting me, and I only wanted to go home.

I can’t imagine what I would have done without my lymph machine. I’m so glad I listened to my physical therapist.

I also learned that, at least for now, and until I can get a handle on my lipolymphedema, it’s not wise for me to travel.

So yesterday, when Sherry texted me asking if I wanted to join her and a bunch of other friends for a boating weekend at a popular lake (a three-hour drive from home), I had to tell her no. As much as I’d love to take off for the weekend, I still become fatigued from even half a day of activity.

I hope at some point I’ll be able to get out and experience life because there are so many things I still want to see and do. And I will keep fighting this fight to be a healthy person again.

I’m curious, have you traveled recently, and how has it fared for you? Which Lipedema stage are you in? And do you have a regimen to manage your symptoms when you want to go out and see the world? I often wonder if I’m alone in this predicament of pain and fatigue, even when doing normal life stuff. Let me know in the comments. I’d love to hear from you.

Medical Disclaimer for Lipedema and Me