The past several weeks have been quite good indeed. I felt like I was coming out from under the foggy cloud of medication side effects and was finally making real progress with my new dysautonomia management plan.
To me, the biggest indicator of this was when I realized I’d gotten my stride back.
My father’s family is known for our big, fast walk—keeping a quick pace with a stride that’s a bit too broad. I hadn’t known that I’d lost my stride until I felt it suddenly kick in again while I was strolling around the neighborhood a couple of weeks ago. My strong, confident stride was back!
I have to tell you, it felt amazing.
And then, this past Saturday night, I had a medication mix-up. I accidentally took my 9 p.m. meds at 6 p.m., and vice versa. (I also stayed up way past my bedtime resolving an argument with Mike.) The immediate impact of the meds confusion was intense insomnia, followed by utter exhaustion in the daytime—alongside being unsteady on my feet, feeling dizzy, etc.
After all of my progress, that single mix-up set me back about 6 weeks.
It was frustrating not only to be feeling so completely yucky again, but also to realize just how fragile my health still is. Maybe I simply hadn’t had a deep enough foundation in my improvement and that’s why a one-time disruption had such a major impact. I’m hoping that’s the case, because 100-percent, full-time vigilance every day for the rest of my life—just so I can feel mostly good (but still limited in comparison to “normal” people)—is too tall an order to be realistic.
It also doesn’t give me much hope for eventually weaning myself off of these meds.
But Monday was better than Sunday. My big job for Monday was to simply stay awake—not so easy after two days of insomnia, but I was determined to get myself back on my sleep schedule. I was tired and had some of the “drunken drowsies” and episodes of near-syncope and the like, but it wasn’t as bad as Sunday. I still had trouble falling asleep Monday night, but it was easier than Sunday night, and Sunday had been easier than Saturday… I’m still not back to where I was Saturday morning, before all this happened, but I am gaining ground again. I hope.