A square of purple paper slips out from my diary. The blue ink scribble is hard to make out but it reads “Walk the path the illness is teaching you.” It’s something my sister said to me on one of our calls soon after my CFS diagnosis. It felt instinctively right, based on learning from, rather than resisting, reality. For a while, I got it. But then I fell back into anger, grief, fear and disappointment.
Wanting things to be different than they are is a great squanderer of energy. Understandable, but oh god, so tiring. I need to scrub it from my To Do List.
My sister has learnt so much about energy-squandering in the fifteen or so years since she was diagnosed with CFS and Fibromyalgia. And because we have always shared whatever we learn with each other, she’s been trying to teach me since way before my own CFS diagnosis. “Don’t end up in my position” she would say.
Something she’s been trying to tell me for ages, but I’m only just grasping is that, on any given day, you must decide what is the thing you most want/need to do and dive straight in. Spend energy on anything else and you have none for the thing that matters most, that only leads to more disappointment, and is tiring in itself.
I’m not a diver-in type of person. I don’t like the cold. Or the shock. In films when people enter the sea, they form a beautiful point with their arms and leap into the waves. I stand on the edge and painfully, slowly, incrementally shuffle forward, controlling each stage of immersion into wetness. And then scream my head off.
My comfort zone lies in carrying out displacement activities, filing things in my head for later. I busy myself with lead-in tasks till I work up to the THE THING itself. They act as buffers against…hmm, against what? Fear I’m not up to it? Shame of failure?
But buffering also denies me accomplishment. And I see how much time and energy it consumes. This illness is teaching me I need to cut to the chase. To show myself kindness about the discomfort that leads me to avoid. But not to let it rule the show.
This is how I ended up writing this blog post first thing this morning. No Twitter or BBC preamble. No two-hour diary write before getting started. No truck with the idea that it must be a perfect piece. No planning even. I ate cereal and a banana. I sipped half an espresso. I came up to the attic: I started typing. I got straight into the water.