Warning, warning, warning: This post is more or less a reality check about what it's like to live with ET if you're me 12 years after the first onset of the disease. It's not necessarily a typical day for most ET patients, or even ET patients in their 60s. We are all different, and our diseases progress at different rates based on lots of different factors. So I'm not touting what I think is "normal," here, just what's been my experience.
I will also say that I feel better than I did before I started on hydroxyurea (HU) and when I was working and my time was not my own. On those days, I was exhausted by 3 p.m., and I would often go to bed as soon as I got home from work. The HU helped with fatigue, but so did learning to pace myself and find my own daily rhythm after I retired.
Anyhow, here's my typical day:
Night time: I try to get 7-8 hours of good sleep each night. This is easier said than done. I have always been an anxious and light sleeper, and this has become worse over the years. I also have night sweats sometimes and very dry mouth that wakes me up. On a good night, I wake up once and go back to sleep immediately. On a bad night, I wake up every two hours, as if an alarm had been set. Fatigue is always worse after one of the bad nights.
