I thought I was having a nightmare Thursday night. In the middle of the night, I had a disturbing feeling that somehow, in the middle of the night, the joints in my fingers and toes had started tingling. Weirder yet, I had the odd sensation of feeling as if some of my toes and fingers weren’t rubbing together right. It was very odd, but too complicated to figure out the meaning. I told my dreaming self, “That nonsense had better be gone by the time you wake up.”
At 6:30 a.m. I woke up for real. Thank god, I thought. I don’t need creepy dreams like that. It’s scary enough to have an inflammatory autoimmune disease (a form of spondyloarthropathy, similar to rheumatoid arthritis) that causes all kinds of strange symptoms such as random backaches and foot pains and weeks of draining fatigue that make it hard for me to do more than one activity a day—such as pick up more medicine at the drugstore—before I have to return to my Fainting Couch, shaky and weak. It was challenging to adjust to giving myself two injections a week of strong drugs that lower my immune system so that it doesn’t spend all the time attacking itself (although it means that if I get a cold it could turn into pneumonia in a finger snap).
The hardest part is adjusting to being limited. To want to be fun and energetic, to do more things with my delightful, energetic husband, Brian, but just fall short. It’s hard to adjust to the fact that what I intend to do and what I can do are two different things.
Just to reassure myself, I held up my hand.
Yeah. I wasn’t having a nightmare. My joints had swollen, shifting my bones, in my sleep.
I’ll remember that moment for a long time. The pallid early morning light coming through the beige curtain, the dark red wall, and in front of it my left pointer finger, curving to the left like a little scythe. Maybe not as dramatically. Okay, maybe the curve wasn’t as dramatic. But—what the hell? Seriously, what the HELL? There was my finger, part of my own body, twisting to the left. Overnight. And the thing is, I think I knew something was wrong the second I woke up. I could still feel the tingling.
I lifted the bedcovers and looked at my feet. All of my toes seemed to be tingling, too. But my right big toe seemed particularly weird. I looked at it. And yes, it seemed to be pushing into the second toe. I felt it with my fingers. Somehow, the bones of the toe had migrated to the right edge of the flesh, so that they were pushing right against the second toe. And the top bone seemed more acutely angled than the bottom bone.
It is now Sunday. It’s been a pretty nice weekend. We just had dinner with our friends Leo and Elise, which made me happy. I saw my beloved Julie for our weekly high holy Sunday breakfast at which all important matters are dissected. The weather’s been good. Brian made beautiful salmon, and put flowers he grew in a little vase. I talked with my Mom. Life is good. Normal. Ish.
But I don’t even have words for how freakish it feels to go to bed with your bones one way and wake with them another way. To have your body changed for the rest of your life while you sleep (oh, and it will be—I’ve had changes in other bones, but not in a single night. I never even heard of such a thing—have you? Has anyone?). It’s going to be a little harder to walk now. A little harder to do the crafts I love. Not too much harder, but a little. I feel stunned by the unreality of my new reality. By my miracle-in-reverse.
And, I wonder. It’s getting close to midnight. If I go to sleep now, what am I going to wake up to tomorrow?