Winter’s getting on my nerves, literally

Every time my lupus flares, it does so with a chef’s special, a new or worsened symptom I already had that becomes the showstopper. 2020 gave me flare a la pleurisy; 2025 is serving peripheral neuropathy. Bon appetit.

I almost made it through this winter without prednisone—almost! It’s okay, though, because it’s still another winter I’m on less steroids, another winter without chemo entirely. For me, that’s a major win. Go Benlysta!

Peripheral neuropathy is hard to manage, I’m finding. Mine presents mostly as fiery pain in my hands and feet, with tenderness in my fingertips that defies all reason, the same treatment in my toes, swelling too, and pins and needles, and coldness. It also causes balance issues. It really makes me miss amitriptyline—but not enough to die.

Since my labs are okay, I’m managing it with a course of steroids, round-the-clock Tylenol, Motrin 800, and medical cannabis, and lots of rest. I’ve also recently cut out carbs almost entirely, which weirdly has made a huge difference in my overall pain and energy levels (until winter really got going here). I’m not allergic to gluten, so I’m not sure why this works, and I’m not asking any questions, either. I’m just saying no to the carbs.

It’s frustrating because things change so fast for me, especially during the colder months. I’d just gotten into a groove, after having just gotten into another groove interrupted by renovations, and the only thing I’ve found to be true with chronic illness—especially when it’s a dynamic disability you’re dealing with—is that the game is constantly changing, and I’ve gotta be ready to trade the system I just created for myself for a whole new system. Or go into flare survival mode, a place that I simultaneously appreciate and hate.

It forces me to focus on what’s really essential. It also makes me look forward to when the flare will pass. Even pleurisy didn’t last forever; I’ll never forget the moment I realized I could take a full breath without excruciating pain. I still get twinges of chest pain, but usually only when I’ve overdone it or I’m too cold.

This will pass, too.

Photo by Girl with red hat on Unsplash