Travel with Kevin and Ruth: Update on my condition, and weekend away with the boys...

Monday, September 29, 2025

Update on my condition, and weekend away with the boys...

I went away for my annual guys weekend on Thursday afternoon.

Of course the major concern was my medical condition, but we decided that if I'm going to feel like crap, I might as well feel like crap up at the cottage visiting with my long time friends. So first things first, an update on my progress in that regard...

Typically, people with dysautonomia feel worse in the morning, and progress to better by after lunch and best (but still not perfect) in the evening. And that's exactly what I've been experiencing. But the feelings kind of come and go in waves. We're quite confident that the doctor at Kemptville hospital got the diagnosis correct, which I still find quite amazing. While doing some research, I'm also amazed at the number of people that have this condition in varying degrees of severity. There is a facebook group, as well as a reddit group, with thousands of members.

I had one of the guys pick me up so that I wouldn't have to drive myself just in case things deteriorated. Fortunately, things have continued to improve and as I write this Tuesday morning, it's my best morning yet and I feel pretty much normal. The only major problem I was having this weekend was not sleeping well, and excessive urination. Yes, an odd combination of symptoms, but they are two of the common problems with dysautonomia. Of course the excessive urination is partly caused by the two to three liters of water I'm supposed to drink every day! I'm learning that it takes the system a while to get used to that.

Last night was my best sleep in over a week though, and I'm feeling pretty good right now. Fingers crossed it continues to improve. Even if it stays like this, at least I can function normally and even did a 5 km walk on Friday and a 6 km walk on Sunday.