Travel and Fatigue

Hi Everyone, I will be flying out of state soon and doing a lot of sight seeing. I am apprehensive about over doing it and also fear not being able to keep up with the group.
I tire out quickly and wanted to ask everyone your advice. I know to pace myself and take it easy. Is it possible to “strength” train and just walk more and more each day to ready myself for the trip or should I just reside to my limitations and do as much as I can while on my trip?

Thank You in advance!!!

Hi! I went on a family vacation in July where we did a ton of sight seeing and activities like zip lining. It was exhausting but worth it. By the end of the trip I needed a vacation from my vacation. Just listen to your body and take a break if you need it. There were times I did lag behind the group but it was fine and I didn’t hold anyone up. The important thing to me was not missing out and I usually found that once I got going and was in the midst of the activity I was fine. The tiredness usually came after. Enjoy yourself and sneak in some extra rest when/if you can.

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Glad to know you are going on a trip and hope you have a wonderful time. I will say, that for myself especially leading up to the time of my transplant, I just couldn’t do every single hike or walk to a water fall in the mountains on our vacation etc. I did what I could, but when the energy starting slipping away we had brought a lawn chair and I just opened it up under a shade tree near the car and took a nap. I didn’t want my family to have to suffer and not be able to enjoy the time we had when my weakness manifested itself. Just do what you can do, and when you see that things are becoming more difficult, have a plan to be able to find a place to rest, rest in the car, etc.
Not sure how advanced you are in the disease process so our limitations will always be a little different. The main thing is enjoy being with your family, enjoy all the things that you can do, but be glad for your family/friends when they have to go on without you. We don’t want to make others feel so sorry for our limitations that they do not enjoy their own need of a change of schedule during such a trip. Hope your time is wonderful!

Mark

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I have traveled a number of times with the diagnosis. On the one hand I have had the same fears you’re expressing, on the other hand I have always been glad that I went, after.
First, your question re training to be in better shape, I think it is a great idea. The extent to which I have been able to keep my muscle strength has depended on how well I’ve felt from month to month, and that in itself has sometimes been frustrating. But when I am able to keep in better shape, I feel better and have more energy.
Second, about the traveling itself: I have learned that it is important to always have a backup plan. A room I can go away to and nap, a choice to opt for a less rigorous activity if needed, putting off committing to this or that plan for the day until I know how I feel.
You say you’re with a group. Depending on whether it’s family or tour group or whatever, you may find it easier or harder to assert your needs. Organized group events can be difficult, because sometimes you may be unable to keep a backup plan. That’s where I’ve found it important to get a lot batter at listening to my body. There have been times when I really really wanted to participate in some group thing, but had to say, no, I’ll stay back and rest. But that’s been worth it also.

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Giraffe, training would likely be a good thing to do, and you can be a better judge of how your body handles walking. But be in tune with what your body tells you, and do it. If you can do another excursion, do it. If it tells you to rest/sleep, do it. If you can go halfway, figure out a way/options…

Glad you are not letting psc control your life. It is important to life your life.

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Thank you so much!