Being out of treatment, I don’t have things to post that often anymore. Or perhaps I’m just too busy. Having gotten back from my sabbatical I’ve been thrown headlong into a very difficult semester. And when I don’t feel well I have nothing to fall back on because I have no wiggle room left while doing everything I’ve been asked to do and still sleeping and taking care of myself.
However, Lyme doesn’t pay attention to those things, and so I’ve twice in the last 6 weeks had a week in which I had to step back. The first time I didn’t pay too much attention. It was after a trip, I was fighting a cold, and working hard. No wonder I ran into trouble. On the other hand the symptoms were unusual — tingling in my lower limbs is a new symptom (I think), and while the associated fatigue and shortness of breath when moving about were familiar, the tingling concerned me, especially when it was still going on a few days later. I also realized that when I’m tired like that I have trouble focusing (I see double).
This time went so far as to see a doctor and look on the Internet. There are things besides Lyme that could explain this, but that could also just be cyberchondria. She suggested we assume it’s Lyme for now and ordered some lab work.
Then (while waiting for follow up) I had another episode. This time it started while I was teaching and because I didn’t notice (busy concentrating on the lecture) I kept standing and got to the point where when I stopped talking I suddenly realized that I was nauseous, fatigued, and tingling all over. I forced myself to walk back to my office and collapsed for several hours. I am still recovering a few days later, and am severely out of breath after just a bit of motion.
As usual, my reaction to things going down hill is to want to take some action. I feel as though I’ve gone from whole to part me again in these periods, and I don’t like it. I love living life fully again and I am fearful every time I slip. Giving it up once was hard enough. Giving it up over and over again, and living with the fear that it won’t come back each time, is sometimes almost panic inducing. I try to remember that this has always been temporary in the past, and to go forward doing the things I do despite it. I pamper myself (a bath, a sauna, a tv show). I try to let my colleagues know what help I need (disclose) without complaining or feeling sorry for myself. And I inevitably get focused on something actionable. Maybe I go see a doctor, maybe I research conditions online, maybe I reconsider changing to part time. The way it plays out is different every time, but I somehow need to feel that I can do something about it, and if I can’t take a drug and get better then I try other things. I have learned not to trust decisions I make in these periods (and not to go too far down the road of acting on them) but doing nothing is just too much like giving up for me.
So I’m curious: What do you do to cope? How do you get through the slumps?