How to Enjoy a Vacation Even Though You Have ME / CFS or Fibromyalgia

Seven tips for how to make the most of a vacation -- despite your limitations

Seven tips for how to make the most of a vacation — despite your limitations

Did you go on a vacation this summer?

If yes, how was it?

The reason I’m asking is that it’s likely that some things were great, but other things might have been challenging. Life with ME/CFS and Fibromyalgia isn’t always easy, and going on vacation is no exception.

And when is a better time to ensure that next year’s vacation will be even better than this year’s? Right now, when your memories are still fresh!

Let’s take a moment to reflect then.

First, I’ll share with you seven easy-to-use tips I’ve gathered from my coaching clients’ and my own experiences over this past summer. Then, to make this the best resource possible, I’d love for you to chime in as well. Please share your insights by leaving a comment underneath this blog post.

Go to a quiet, calming, healing place

Interestingly, none of the people with ME/CFS and Fibromyalgia I spoke to chose to go to the city for a vacation. Everyone decided to stay at a campground or in a vacation home close to nature.

In my mind, that makes a lot of sense: If I go to a calm and healing place, I notice that I continue to benefit from the impressions of that vacation even when the vacation has long been over.

That’s because I can use the memories in my daily visualizations of health. While nature calms us down, cities easily give us a buzzing feeling. Therefore, to create calming memories that will strengthen your daily rest breaks, I recommend that you shoot for a calming, nature-oriented vacation.

Resting in nature will provide you with healing memories for when you're back home

Resting in nature will provide you with healing memories for when you’re back home. (That’s me in Sweden in 2009)

For example, I enjoy my meditation and visualizations of health even more since I came home from my recent vacation to Santa Cruz and can think of the vibrant sunshine, the deep blue ocean, the fresh breeze, and the green colors of the coastal vegetation.

While I would also be happy during a vacation in New York if I had enough places to rest during my sight-seeing expeditions, the buzz of the city would support me less well than the ocean atmosphere when it comes to supporting me in calming down during my daily rest breaks.

That’s why this first tip is to go to a quiet, calming, and healing place for your next vacation.

Make sure you have a place to rest (& three ideas for resting places)

One of the most powerful ways for making the most of your energy and well-being when you have ME/CFS or Fibromyalgia is a self-help technique called pacing. One of my favorite ways to pace myself is taking a few lying-down meditation breaks per day.

But where to find those resting places away from home? Here are three tips:

  • In most towns and cities, the public library and city hall areas provide great resting opportunities. Libraries are generally quiet and calm places, and most libraries even have couches to lie down on or really comfortable seats conducive to taking a rest. And if worse comes to worst, I could still usually find a nice calm spot in a corner of the building, or an outside bench.
  • In nature, be it in a campground or a house with a nice garden, my lightweight travel hammock has given me incredibly beautiful hours of repose. Check out this video titled, “Why I am the luckiest man in the world,” to see how nice it can be to lie in a hammock in nature. If the video intrigues you, here is a buying tip for a lightweight travel hammock (affiliate link) (sorry, you can’t buy the beautiful girl; she’s my wife.)
  • On the beach, I find it useful to have a beach umbrella. Sunshine and wind can be energy draining when we’re exposed to it over an extended period of time. Here is a link to the beach umbrella I like best (affiliate link).

The value of staying in one place on your vacation

Settling down in one place makes the vacation even more relaxing.

Settling down in one place makes the vacation even more relaxing.

On our honeymoon, Erin and I spent three weeks camping in beautiful nature reserve in Sweden. While the nature we saw was incredibly beautiful, finding a new camping spot every two days was costing me too much energy to allow me to fully enjoy the trip.

Erin, understandably, wanted to get around and see things. I, however, wanted to stay as long as possible in one place, because since I had come down with ME/CFS it drained my energy to, each time anew, drive, find a new camping spot, and pitch my hammock.

Erin and I compromised on staying in one place for at least two nights before moving on. It worked out OK, but was still not ideal for me.

These days, I try to go on vacations with Erin where we stay put once we get to our destination. I’m much happier and we’ve found a way to keep Erin happy as well (more on this in the “special considerations for couples” section of this article)

Communicate your needs because your peers have probably forgotten about them

It’s difficult to understand how someone with ME/CFS works. When do they need to rest? How much can they do physically? What foods can they eat?

It’s easy for the people we vacation with to forget, and I don’t blame them.

It’s my responsibility to communicate to Erin and whoever else I go on vacation with what activities I can do that don’t make me sick and everyone happy.

For example, when we are at Erin’s family cabin in the Sierra Nevada, it can easily happen that Erin wants to go fishing with me, but I need to rest first, which means that she has to wait for me. Or that I want to go on a little hike with Erin in the afternoon, but I didn’t tell her early enough so that she already promised to make jam with her grandma.

The solution is simple, early and pro-active communication: I sit down with Erin early in the morning or the night before and speak with her about what times the next day I’d like to be active with her, and during what time I might need to rest.

Make enough time and space:  a vacation is a big deal

As a matter of fact, getting ready for a vacation and getting back in your rhythm upon your return is quite a big deal—even if you’re not sick!

Please give yourself permission to plan for the time it takes realistically. ME/CFS and FM self-help expert Bruce Campbell recommends that if you go on a vacation, you might want to set aside the week before to prepare yourself and the week after to rest and get back into your rhythm.

Special considerations for couples

When I want to take the second or third of my daily rest breaks, Erin often gets a bit unhappy with me. “I’ve read enough in my book. Can’t we do something active now?” Like most people, she really likes doing things “together” and it’s hard on her when I have to leave her alone a few times a day.

The best solution in my mind—if it existed and wasn’t illegal—would be to give Erin a “cuddle and chill pill”, so that she’d curl up in my arm and enjoy the rest with me. In the meantime, however, until that pill exists (and is allowed) we can try the following ideas to keep our partner happy (and ourselves relaxed!) during our rest breaks.

  1. Go on vacation in a group with friends and family. When we stay with Erin’s side of the family at their family cabin, Erin will go fishing or make delicious food with her mom or grandma when I rest. Because there’s other people around, it’s no big deal if I take a time out.
  2. Let your partner make travel plans. After our recent Santa Cruz vacation where Erin got bored with me during my rest breaks, I brought up the topic at the CFIDS self-help group meeting in Sacramento. From a man with ME/CFS I learned this great idea: while he is resting, his wife researches on her travel guide or smartphone what sights to see and things to do next, which keeps her busy and happy, and him on his rest schedule. I’m quite excited to try this next time Erin and I are off on a vacation together.

Special considerations for families

Keep it Simple. One of my coaching clients totally inspired me when she shared with me how she goes on vacation with her family:

Her family owns a bumper camper, which is always ready in their driveway. With most things staying in the camper permanently, it only takes her family an hour of food shopping to get going. They usually drive only a short distance to a nice lake, to keep travel time low as well. Pam says that this is so much easier than the car camping they started out with when she was still healthy, and highly recommended it.

Special considerations for singles

Surround yourself with people you love. One of my client’s biggest challenges is that she often feels lonely. The way she was able to have a renewing, joyful vacation was to call up a friend and join her friend’s family in their vacation home.

She’d do art in her own space or join her friend and her friend’s children in their activities when the husband was doing his own thing. It was a beautiful arrangement for everyone.

No Money? The Benefits of a Staycation

A vacation that meets your needs can be a huge gift when you can afford it, but if you can’t, you might be OK, too: Read Marty Nemko’s passionate essay about the advantages of a Staycation!

What have YOU learned from this year’s vacation?

As I stated before, I see this collection of ideas only as the beginning of what can become–with your help–the ultimate guide for vacationing when you or your partner have a fatigue condition. The real wisdom comes from you!

What have you learned about making a vacation work despite your limitations? Any ideas for making it even better next year?

Please leave a comment! We, the CFS Recovery Project community, would love to hear about it!

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