Overall, recovery has been swift and encouraging. I’m feeling so good so often that I wonder whether all the bad times were just an unpleasant dream I had over the summer. Objectively, I had a way easier time than lots of people I know, even when one takes into consideration two rounds of severe neutropenia at the end of chemo. As fall fades into winter, my periods of energy are stronger, longer, and more frequent. Plus, I’m discovering that the mottled gray-blonde fuzz sprouting on my head is a color I can live with, and I didn’t even have to suffer through an embarrassing grow-out phase while the dye line reached a length where I could cut it off.
This is not to say I don’t have setbacks. While energy is good, it’s good. But when it runs out, I drop like a marionette whose strings were cut. Pain is a constant companion while I wait for the lupus drugs to catch back up after taking a summer off of them. (Plaquenil takes an average of six months to reach proper concentration in the blood stream, so to speak, for full effect, and I’m about two months into a routine again.) To be perfectly frank, even when I’m smiling and chatting animatedly with my friends, I’m just pretending that inflammation isn’t burning me up inside. It’s a blast from the past to most of my adult life, before diagnosis, when nobody knew what was making me so irritable and easily tired. I had coping skills that thankfully didn’t involve recreational pharmaceuticals, and I’m dusting them off now.
I let myself fly too high this week, going out and actually doing things several days in a row. This morning felt like a nasty hangover, and I had to sleep on and off for hours, even after I’d technically gotten up and had coffee. I made myself stay home, even after learning that my insurance will indeed cover the shingles vaccine 100%, and the pharmacy is putting my name on a couple of vials of it. (Gotta get that done tomorrow—I had chicken pox bad as a kid, and I’ve had multiple family members tell me how awful it is to get shingles later in life.) Pacing has never been my strong suit, so the safe bet is that I’ll spend too much time taking it easy, get bored, try to tackle too much all at once, and flare out again. This cycle repeats endlessly.
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