My husband Kenny and I got back from Utah last night. It's good to be home.
I am grateful to my parents for having invited us to travel with them to Utah. Without their generous financial support, we would not have been able to go. Thanks, Mom and Dad!
I slept through most of the day today and feel pretty good. I woke up for breakfast, watched a little TV, then went back to sleep until after 4pm. I've been watching TV since then.
My body is very tired and my muscles are a little sore, but my lymph nodes feel OK and I don't feel ill. I think this means I survived this trip without a major crash. Hooray! I think the only reason I'm not worse off is because we really did take it easy on this trip (for the most part).
It always takes me quite a bit of self restraint for me to "take it easy" whenever I travel. My nature is to be adventurous and physically active. The CFIDS forces me to go against my nature. When I overexert myself, I pay for it with days -- and sometimes a week or more -- of extreme exhaustion and malaise. When it's really bad, I can't get out of bed. I have learned the hard way to slow down my pace.
While on this trip, I wanted to ride a hot air balloon, go white water rafting, ride horseback, and go shopping at the outlet mall. Of course, I didn't do any of those things because they would have exhausted me beyond belief, but it was fun (and a little melancholy) thinking about them. (I can't wait until I'm healthy again.)
Instead, we chose activities that were a little less taxing: riding a ski lift round-trip (which involved sitting on a slowly moving bench up and back down a mountain) and riding a zip line (which involved being strapped to a cloth seat and flying down a ski hill). Those were my most exciting activities for the week.
I'm lucky that my parents and husband are so supportive. They allowed me to set the pace and choose the activities for the entire trip. We had late starts every morning and ended each day right after dinner. There were plenty of opportunities for daily naps, and the naps ranged from less than an hour to up to four hours.
When I didn't feel well enough to go out, we didn't go out. Whenever we drove anywhere, my dad would drop me off at the entrance before parking so that I wouldn't have to walk too much. When we visited Zion National Park, we were able to tour the park by shuttle bus (the Zion Canyon Scenic Drive shuttle, to be exact). The bus made my visiting a national park possible. (The photo at the top of this post is a picture my husband took at Zion.)
Overall, this trip was wonderful and frustrating all at the same time. I was able to do quite a lot, yet I was still so limited by my CFIDS.
I clearly remember what it was like to be completely incapacitated by this disease -- from ages 24-26, I was bedridden and slept 16 to 20 hours per day. A trip like this one would have been unimaginable. Yet compared to what life was like before I got sick, there is still so much I cannot and should not do...or else my body will rebel.
I'm ready for a cure.