It had been another night of bad pain, of the kind that makes you rock back and forth in an attempt to block sensation with movement, even just a little. I'd had bad nights for weeks, each night a little worse than the one before, at first just aching stiffness, then needing painkillers, then blasting through the wall of painkillers until all I could do was rock.
These bad nights didn't show up out of the blue, they came from trying to fit more into my life, trying to meet my own expectations about what I should do, having trouble understanding why the list never got any shorter despite working like a demon every day and spending each night in ever-increasing pain. And then one day, a friend of mine suggested that if the list never got any shorter, perhaps it wasn't because I didn't try hard enough. Maybe it was because the list was too long.
What? You mean having a chronic illness with high pain levels that's given me a disability means I can't do what I used to be able to do? I was stunned.
I've always overestimated my ability to get things done, but had managed to somehow pull the rabbit out of the hat every time, talked about being the kind of person who works best under pressure, never giving myself the chance to see how I would work without pressure. My friend's question made me realize I can't do that anymore. I simply don't have the physical ability and energy reserves to bounce back from routinely pushing myself well beyond my limits. Trying to do what I'd be able to do in the past was sending me further into a spiral of higher pain, injuries, debilitating fatigue and a pervasive sense of not being good enough.
Clearly, something had to change. But what? Looking at my list -- two full columns on a steno pad and that was on a short week -- it was all essential, there was nothing negotiable, nothing that could wait, everything needed me. They say believing you're indispensable is the first sign of a nervous breakdown...
They also say when the student is ready, the teacher will come. When I interviewed Mea McNeil last year, she recommended a book called The Not So Big Life: Making Room for What Really Matters, by Sarah Susanka. This book is a tool for changing your life from one cluttered and out of control to one in which there is room to breathe and create. I've been dipping in and out of it, but just around the time when I realized I had to change how I ran my life, I read Chapter 3 and prepared to do an exercise related to time and how I use it.
As I worked through the questions about lists (is it a helpful tool or a burden -- can you guess my answer?), sleeping patterns, eating patterns, exercise, relaxing (what's that?), work, life philosophy and aspirations, I could almost hear the clicking sounds in my mind as the pieces began to fall into place. Just thinking about how I use time, breaking down my day and the tasks I do and why I live and work the way I do made me realize how I could move things around, reprioritize and create more time for me. Time I desperately needed -- stress is never good, but when you have rheumatoid arthritis, it can have a direct physical effect, increasing your symptoms and making life much more difficult. When you live with RA, time for you translates directly into being better at hearing the messages your body is sending you about your energy and pain levels and makes coping with the disease easier.