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.
Over time, I started to do a little less on a ‘good’ day and a little more on a ‘bad’ day. I learnt to break tasks down, using diaries and charts to establish baselines, the amount of time I can do an activity for without exacerbating my symptoms. I began to work in tiny chunks of time, setting a timer to keep me on track, and alternating between tasks that are physically demanding, mentally demanding, and restful.
This approach continues to work well for me, but I realised that as useful as my charts and diaries are, they can feel quite rigid, when life itself is fluid and my condition forever changing. I remembered an OT saying to me, ‘baselines are guidelines not rules,’ and I began to draw more heavily on my practice of mindfulness and compassion, bringing greater kindness and creativity to my pacing. I reminded myself there is always an element of choice; where do I want to put my energy? What do I value most? What’s my priority? I also became more aware of the ‘shoulds’ that can be a barrier to pacing as I need to, and the ‘wants’ that deserve to be listened to. Most recently, I’ve noticed how when my timer goes off I often feel frustrated, with an increase in tension that in turn increases pain and fatigue. My driven self appears as I tend to want to dive straight into the next activity and to achieve as much as I can in that chunk of time. I’m working with this by using the timer and change of activity as a cue to soften, to breathe, to surrender to gravity and to check in with myself. It can feel counterintuitive to the striver in me, but it brings about a profound and helpful shift in my attitude, my body and my ability to manage my symptoms, as well as creating much needed buffer zones in my day.
Pacing is often met with apprehension by people with chronic illness; perhaps there’s a fear of further restriction or maybe it’s the feeling of having something else to do when you feel like doing nothing. It is hard work. Twenty years on and it’s still a work in progress for me, but it has put me back in the driving seat and allowed me to do so much. As I continue to fine tune my pacing, I know it’s working when I have greater stability in my symptoms, I am getting tasks done with focus and enjoyment, and there is a sense of ease and flow to my life. At these points it can fade into the background. I’ve set it up well, I can trust in that and allow it to enable life rather than dictate it.
More information on pacing –
The Spoon Theory (commonly known as ‘beans’ in my family)
‘The Art of Mindfulness: Mindfulness in Daily Life Booklet’ – introduces the Breathworks’ mindfulness in daily life and pacing programme, an integral part of the Mindfulness for Health course