Managing Fatigue and Other Vacation Tips for People With MS
“A holiday is an opportunity to journey within.” — Prabhas
Last week was only my second weeklong holiday since my relapsing-remitting MS diagnosis in 2017. My husband and I have had weekend getaways here and there, mainly to visit family. Of course, COVID-19 has placed a huge restriction on everyone’s travel plans in recent years. In many ways, COVID-19 made the thought of getting away more anxiety-inducing than before the pandemic.
In the balmy late afternoon sun of last Wednesday, I sat outside writing by a river. I reflected on how in the three days we had been there, I hadn’t yet faced the hurdle of insurmountable fatigue. This surprised me. Yes, I was tired — navigating new surroundings in what was not a disabled-friendly cottage wasn’t easy — but it surprised me how fast muscle memory had kicked in, such as when a doorway threshold was raised, for example. However, these are the kinds of things I generally have a cumulative fatigue response to in the following week.
Home comforts were something I made sure to have around to ground and relax me in an unfamiliar place. I made sure to pack a good book, my journal, a Bluetooth speaker for music, some nice bubble bath, and some comfy clothes.
Time to yourself
Alone time is very important to me, and it’s probably the most important part of managing MS while I’m away from home. It’s so easy on holiday to do too much after getting caught up in the action and excitement of being away and wanting to do it all. The result can often be a major fatigue crash, especially a physical one. This time, I made sure to take time for myself, as I know how easily I can get caught up in the moment.
Something else I try to avoid is having plans for physical activities on consecutive days because I must manage my physical and cognitive fatigue. Being on holiday with so much I want to do, yet knowing I can’t, is tricky.
Sadly, I did have a major fatigue crash, but luckily, it wasn’t until later that evening, halfway through the week. I expected it much sooner, though. I could feel my core fading fast, and my body felt like a house of cards. All it would take would be one tiny movement to make me crumble. We were in the middle of a barbecue dinner, which made it worse. I hadn’t had a fatigue episode of this caliber in a long time, and the heat certainly didn’t help.
The cottage we stayed at had no internet connection and very little phone signal. (I’m surprised I was able to submit last week’s column!) Otherwise, though, it offered a fabulous opportunity to unwind and reset without the distractions of things like social media. I thoroughly enjoyed the opportunity for self-reflection.
While we weren’t a great distance from home, we were still far enough removed from day-to-day life, which allowed me to reevaluate my perspective. I thought about the things in life that I may have been letting slide, or that I should put more energy into. I also thought about writing, which is a great passion of mine that I’d like to do more of.
By the end of the week, I was much more physically fatigued than cognitively. Between the size of the cottage, the unstable access to the river garden, and the rocking of the boat on a trip we took, my core became incredibly tired. The fatigue was linked to my pelvic floor, which therefore affected my bladder control and the ability to sit up and walk, so I needed to use my wheelchair and scooter more toward the end of the week. I was also thankful there was a washing machine!
Despite all of this, and the dazed haze of cognitive fatigue that inevitably descended upon me, we had a fabulous time!
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