The timer goes off and my pen goes down. I breathe fully, checking for any resistance and tension, and allowing my breath to soothe my body as it sinks into my wheelchair. I prepare for a sit to stand, gently shifting from side to side before I move my body forward and up. I’m in the kitchen, making a cup of tea, tidying a few things away. The timer goes off and I breathe right down to my feet, standing tall whilst grounded and strong. I settle onto the sofa, a cup of tea, Bertie and Bella curled beside me, a cosy blanket and hot water bottle. I allow my body to rest back in the cushions. I reach for my knitting and I breathe.

My pacing hasn’t always been so finely tuned or infused with such care. I used to think I was pacing when in fact all I was doing was blocking out rest time before and after activities I knew would leave me feeling broken. In my diary, I was accounting for ‘boom and bust’, the medical term for the common pattern of overactivity when you feel a bit better and under activity when you feel a bit worse, but I wasn’t pacing in a way that brought stability to my symptoms or rhythm to my day. This led to real extremes; I could be up on stage performing one week and lying in a hospital bed the next.Read More