I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
After our month-long road trip to Texas and back with our camper (videos at the link), I put together a short video about how I manage--and even enjoy!--traveling with chronic illness. The focus of this video is on road trips, by car or RV, though I previously wrote a blog post with Tips for Air Travel.
In this new video, I cover routines, rest, medications & supplements, and more.
I spend lots of time here - especially restful when surrounded by nature!
My nap spot in the backseat of the truck.
You can watch the brief video on YouTube or I will include it below:
One viewer commented that heated seats in the car help with her back pain, which reminded me of a couple of tips I forgot to include:
I brought our microwavable heating pad along, which I needed for my low back after long hours in the car. Our camper has a microwave, but many hotel rooms or rentals do, too. This kind of pad can also be frozen to use as an ice pack. I love this one, which is well-made, with sealed edges, so it holds up for a long time.
I have an awesome back cushion that I use in the car. I initially bought it mainly to move me forward a bit when I'm the one driving our truck (I'm only 5'1"), but it's so comfy that it also helps when I'm in the passenger seat, and I also use it in my recliner at home when I'm sitting up to work on my laptop. I got one for my step-mom, too, who lives with chronic pain, and she loves it!
I want to hear YOUR tips!
Are you able to travel? If so, what helps?
Share your experiences (or any questions) in the comments below.
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I haven't posted here in almost two months, so I thought I'd start with a catch-up and update on how we're doing.
My Health
When I last posted here at the end of February, I'd been battling a cold, followed by a sinus infection, and was worried about recovering in time for our planned month-long trip in early March. Fortunately, I did recover in time, so we left on March 10, as planned.
My health remained stable and quite good throughout the long trip, thank goodness! My stamina wasn't great after a month on the couch (and a few weeks before that, several months on the couch), but I was able to enjoy the trip.
We've been back home for a couple of weeks now--and went away again this past weekend for Easter--and my health has remained steady and relatively well. In fact, I met up with a close friend today that I hadn't seen in several months, and we walked (slowly) for about an hour!
I think it's been awhile since I reported on my son's health. He deserves his privacy, but I just wanted to let you know how well he's doing these days. Like me, he has ME/CFS and Lyme disease, though he also has another tick infection, bartonella (and he used to have babesia, too). He's 30 now and has been living on his own with his girlfriend since 2020. He's been working full-time for a year now, which feels like an absolute miracle to us! In fact, recently, he's been working six days a week, and his job requires both physical and mental exertion. I was concerned about this, but when I asked how he was doing during the holiday season, he said it's the best he's ever felt! (He got sick at age 10, so this is all he remembers.) There's no miracle cure; he definitely still has ME/CFS and the tick infections, but he's doing well on all those same treatments that have helped me. In fact, these days, he's doing better than I am--I certainly don't have his stamina!
Our Trip
We were away for a full month, traveling with our camper through 12 states, from our home in Delaware to Texas and back. This trip was all about visiting friends and family, and we had 19 different visits in all! It was fabulous to reunite with old friendsand family members we hadn't seen in many years. Plus, we visited some old favorite places, like New Orleans where we lived in the 80's, and explored some new-to-us places, too. And we stayed in some stunningly beautiful places, with several campsites right on the water--so peaceful! All in all, it was a really amazing trip.
The videos include lots of peaceful nature scenes (we were camping, after all), plus photos and videos of all the places we went and some tips on traveling with chronic illness.
How did I do all that with ME/CFS? Well, those treatments I linked to above are the biggest reason why I can travel (and do other things). But sticking to my routine, including diet, and getting a lot of rest is very important, too. You might think, looking at the photos and videos (as did many of my friends and family!), that I'm not very limited, but every day included 10 hours of sleep, an afternoon nap, and plenty of downtime. In fact, traveling with our camper helps tremendously! It's our little home-away-from-home, and it helps so much to have a comfortable, familiar sanctuary where I can rest and recover. There are some video clips within those trip vlogs about traveling with chronic illness, but I hope to pull together a separate video on that topic in the next week.
As for protecting myself against infections while meeting up with SO many people, I brought two big boxes of masks with me and wore them anytime I was in public or with other people. We also tried to spend as much time as possible outdoors. When friends or family wanted to meet at a restaurant, I asked them to choose one with outdoor dining.
So that's me ...
I want to catch up! How have you been?
Are you able to travel? If so, what helps?
Share your experiences (or any questions) in the comments below.
