Tonight at dance class, my limbs felt like sloppy dead weights slashing desperately through the air as they chased the beats of the Rocky Horror soundtrack. How appropriate. T’was a horror, indeed. I was hoping we’d be learning the Thriller dance as previously promised as a Hallowe’en treat – at least I’d be more convincing as a born-again zombie.
And that’s how it feels like sometimes, like I’ve been in a tomb for a thousand years and I’ve suddenly been faced with the task of feeling connected to this strange container of mine, to move it despite the creaky joints, the weight of crushing fatigue. It’s that, or I feel old. I remember going to a naturopath and after a series of tests she determined that my body’s actual age was 73. No offense to 73 year olds, of course.
It was cold and rainy today. Windy as hell. Sock-less and disoriented, I got caught in the rain a few days ago when street construction left me in search of a temporary bus stop… which I didn’t find. Coughs on the bus tense my shoulders and I try to escape into spaces of “unaffected air,” careful not to touch railings, my hands fetal in my sleeves. I’ve had to work a lot lately, doing my best in my downtime to drown myself in tea and nest in the warmth of my bed. I am desperately trying to keep myself healthy so I can last until work lessens into my regular half-time routine next week. Getting through this week also has an added spin – for the first time in my working life, I will have full benefit coverage if I become ill because of a lupus-related condition. I am grateful and very, very, very lucky, and holy crap, I better not screw this up.
Stiff and cranky, I stood listening to the wind howl against my window, the clock ticking ever nearer to the start of my dance class. I was unsure if I was up to the task of taking on my body (or the rain). In a fury, I suddenly whipped my pyjamas off (yes, I was already wearing them) and changed, figuring I had already had a 3 hour sleep that afternoon, and one hour of moving wouldn’t kill me. It’s always a fight to keep the balance of rest and moving around. Lupus fatigue makes you want to sleep all day (which I can), but then you’ll always be the sluggish zombie, whose limbs are out of practice. As I was leaning against the barre taking advantage of a short break, a person in my dance class asked me if I was alright. My instinct was to say I was tired because I have lupus, but I stopped myself. Tonight was really hard for me, but there was no need for excuses. Instead, I chose to have a zombie dance party, to move what I could move and accept with campy jubilation what happened as a result.