The Art of Pacing

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

Christmas Connections

There’s a picture that has been hung up with the decorations in my parents’ home for as long as I can remember. It exudes feelings of love, warmth, light and joy. There’s a closeness and intimacy of the family holding hands together; everyone is connected as they share such a special day. Looking at it conjures up warm, cosy memories of my childhood Christmases, but I know for many, Christmas can be a very different experience. Some people are alone, others feel lonely even though they are surrounded by people. The same is often true living with a chronic illness. You can find yourself spending lengthy stretches of time alone through being housebound, unable to socialise or work. You can also be surrounded by people but still feel lonely, perhaps because you feel nobody understands or can truly share what you are experiencing.Read More

A Healthy Acceptance

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“It’s not your fault, but it is your responsibility.” 

Those words jumped out at me from an interview I was listening to online.  They resonated so deeply, I’ve found myself thinking about them again and again.  There is such truth, wisdom and emotional depth in that one simple statement.   Let me set the context.

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