Vacation and Re-Entry

One of my favorite things in Maine - the beautiful coastline!

I am finally back home and back online. Sorry it has taken me a while to return to my blog, but the past week and a half have been incredibly hectic and exhausting. We moved my oldest son back into the dorms on Sunday, and my younger son started back to high school yesterday, so I finally have some QUIET writing time again! Here's what I've been up to and what I've been thinking about managing vacations - and normal daily life - with ME/CFS.

Our home away from home!

Let's start with vacation. We had a great trip - two weeks spent camping (we have a pop-up camper), first in Cape Cod and then in Maine, mostly in Acadia National Park (one of my favorite places on earth!). Camping with a trailer is a great way to travel for someone with CFS - you basically have your own little home with you all the time! We returned on a Thursday evening, did a few loads of laundry, unpacked and quickly repacked and left again Friday afternoon for a weekend with extended family.

From a CFS perspective, I did really well on vacation, as is usually true. This year, with beta blockers keeping my heart rate down to normal levels and the extra stamina and conditioning from exercising (cautiously) all year, I was able to do some amazing things with my family. We hiked up to the tops of mountains (small ones when I was along, but mountains nonetheless!), walked around quaint coastal towns, and went sea-kayaking for 2 1/2 hours! I hiked almost every single day of the trip. I know - incredible, right?

The trail goes up THERE?

How did I manage so much physical activity? Several strategies helped. In the morning, when I was along, we chose shorter, easier hikes and walks, and the kids (and sometimes my husband) did the more challenging, heart-pounding hikes in the afternoon while I napped. I always wore my heart rate monitor. On some of those uphill trails, leading to mountaintops, my heart rate would hit my AT every 5-10 minutes, and I would have to stop and sit and wait for it to come back down again. A bit tedious at times, but my family is wonderfully understanding and never complained, and I was thrilled to be able to participate in one of my favorite activities, hiking. I also discovered that it was best for me to hike in the mornings - usually my best time of day anyway - because of the dosing of my beta blockers. I take them before bed (that way, they can help with sleep and I wake up able to get moving right away). A few times, we tried an evening hike, and my heart rate was noticeably higher because my beta blockers were wearing off.

On top of Beech Mountain, Acadia Natl Park

I also stuck to my normal routines, no matter where we were or what we were doing. That means getting to bed at a reasonable time (because I can't sleep in the morning no matter how late I stay up!) and taking my daily nap. I started the daily afternoon nap as a preventative measure years ago, but I have found that it is absolutely essential for me and helps to prevent crashes. If we were driving in the car during the day, I had to nap in the car - difficult but not impossible. And, as I mentioned earlier, beta blockers are the #1 reason that I can be this active now - they keep my heart rate down to normal levels so that I can manage some moderate exercise without crashing.

I thought a lot about why I can't exercise this much at home. I have goals to walk 3 times a week and to do some light weights twice a week, and I have trouble meeting those goals. Some weeks, there's not a single day when I have enough extra energy for a short walk. I think the difference is all the other daily activities I must do when I am at home. Just the ordinary aspects of daily life (the stuff that healthy people don't even think about) are often too much for me at home - laundry, dishes, cooking meals, running errands, taking the kids to doctor's appointments, getting groceries...whew! Choose whichever CFS analogy you like best - spoons, energy envelope, etc; I use them all up on this stuff and have nothing left for exercise that I find pleasurable and that might actually be beneficial in increasing my stamina.

Relaxing around the campfire with my sons

I also think that stress has a role in this equation, too. On vacation, I have few responsibilities or pressures. Since we camp on our vacations, our trips are mostly digital-free zones (though my sons just recently got smart phones). I like to vacation this way - no e-mail, no Facebook, no blogs. This, coupled with leaving the to-do list at home!, results in a true vacation for me - no obligations, no worries, and hence, little stress.

The only two days that I crashed severely during this entire time away were the two days following a day of packing, laundry, etc. - the first day of our trip when we stopped at my sister's house (I had to go back to bed after breakfast which she definitely did not get) and the first day of the family visit, after unpacking and re-packing in just 18 hours. That is even more significant when you look back on how physically active I was during the rest of the trip! I hiked for over an hour many days, paddled for more than two hours, and those things didn't make me crash as badly as packing and racing around the house.

Sea kayaking near Bar Harbor, ME

So, of course, re-entry to normal life last week was rough. To make matters worse, we had just one week until school started, so my week was packed full of obligations - doctor's appointments every single day (many hours spent in waiting rooms!), driving my son back and forth to soccer practice and PT, unpacking, laundry, getting groceries, etc. Yeah, I was in bad shape last week! Just exhausted every day, short-tempered with my family because I felt so awful, and sleeping poorly because I did too much during the day - you know how that vicious cycle goes!

I don't have any answers here, just these observations. I don't know how to do less at home. I mean, certain things just have to be done, especially when you have a family, you know? Summer is always toughest on me, with my kids at home. Yesterday was my first day with them both at school, and it was such a relief! I was able to slow down, savor the quiet, rest as much as I needed to, and even begin writing again. I am hoping to use this time to get back into some healthier habits - resting more so I can manage more exercise (I know that sounds like a paradox but you understand, right?), spending more time with friends, lowering my levels of stress. I'm open to any ideas!

I hope you've had a good summer and are also looking forward to fall. Enjoy the vacation photos!

We saw many gorgeous sunsets in Maine.