The Past Month: The Good
Over a month without a new post! I’m not off to a good start here. I was hoping I could keep this going at a steady pace, but my energy has been up and down in the past month, and both of those kept me from posting. I’ll talk about the high energy days first.
I’m happy to report that Flagyl Fatigue is a thing of the past! After posting my last entry, I was still able to do other things. I got dressed – even went the extra step and did dry brushing first – then walked Rosie and fed the feral cats while I made some tea. I had a snack with it, and felt rejuvenated after that, so I plucked my eyebrows, which were overdue, and then reread my post and corrected some mistakes I noticed.
I mentioned another instance of this to my LLMD at my last appointment. I told him I was cleaning and overdid it, so I sat in bed and thought I’d spend the rest of the day there, because that’s what usually happens. One step too far and I’m done. Instead, resting actually helped, and I was able to get back up again after an hour or two. It’s still a shock to me when my energy is fairly consistent all day and I’m able to keep going even when it’s late in the day, and after activities that normally wear me out.
When I saw my LLMD, I had just recently stopped Flagyl and was feeling really great. Back on the meds, I don’t think I was as energetic, but I was still pretty good once Flagyl wasn’t knocking me down, and it didn’t after that first week. The fatigue on Flagyl was so bad, it reminded me of my pre-narcolepsy-diagnosis days, except with fatigue instead of sleepiness. Rather than sleeping all day, I was sitting in bed all day, and then I’d force myself to shower right before bed. Showering before bed is fine if you planned for that, but I wanted to do it earlier and just couldn’t bring myself to. So it wasn’t showering before bed as much as finally starting my day at 10 pm and then going right to sleep. If I lived alone, I probably would’ve gone longer between showers, because it really took everything in me to do that one thing. It was brutal.
So it was a huge relief when I discovered it wasn’t affecting me that way anymore. I was really enjoying getting things done, and that’s what kept me from posting here. There were just so many things to catch up on. I can’t even remember everything I did, because I was on such a roll. I know I cleaned up my desktop (which is a soothing sight every time I turn on my laptop), and started clearing out my inbox. Then there were some unexpected events. Our landlord came by on short notice at one point, so I was cleaning a lot then, because that hadn’t been done in forever. There was also a week when our fridge was dying, and I had to make a lot of adjustments in my routine; all my baseline activities took longer than usual, so that didn’t leave spoons for much else.
I did fun things too, though. I did work on my blog, even though I didn’t post anything. I experimented with graphics, I made a home page, I started drafts for some background info posts (like about my symptom history and diagnosis process). Then, after I made phone calls to schedule things I’d been putting off for a long time (like PT), I finally felt relaxed enough to catch up on a bunch of TV shows. Normally I don’t like letting myself watch TV, because I have things hanging over my head. It’s silly, because it’s not like I’m using TV to avoid those things – it’s just a way to fill time when I’m too tired to do other things – but I guess I worry about binge watching until I’m done, that I won’t have the willpower to take a break to handle things with deadlines. But for the first time in a long time, I couldn’t think of a single thing I was neglecting other than wants, and one of those wants was to catch up on shows, so I did. And I don’t think I had to pause and rewind quite as much as I used to to follow along.
Oh, how I wish I could’ve kept that momentum up! Sadly, it didn’t last.
To be continued…