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.

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

A Word of Intention

Sometimes a single word can be such a powerful compass. It can give direction when you’re feeling lost and it can remind you of your aspirations, values and strengths, helping you to regain your footing and find your way.Read More

Reconnecting

Reconnecting with words. It feels good to be writing. My absence from the blog was unplanned; my recovery from labyrinthitis, supported so well by my week of self-care, was quickly followed by a glandular fever type infection, then a cold, which re-triggered the labyrinthitis. There was no respite, no opportunity to reconnect, as the ‘viral flare’, as my doctors are calling it, became increasingly multilayered and complex, making it even more challenging than usual to manage my FND. Days turned into weeks, and weeks turned into months. I returned to basics again and again, emptying my toolbox of symptom-management techniques, as my body tried to heal and I worked to regain and maintain lost strength and functioning. Read More

A Week of Self-Care – Day 7 – Community

I’m pretty good in my own company. I need plenty of time alone doing quiet, reflective activities and this has been a key part of my self-care as I have been recovering from illness over the last few weeks, gently gathering my strength and energy in the peaceful surroundings of my home. I recognise the importance of this for me, but I also think it’s vital to feel part of my community. We all need a sense of belonging, of sharing and of company.Read More

A Week of Self-Care – Day 6 – Creativity

I can’t  remember a time when I wasn’t creating something; music, cards, sewing, crochet, knitting, writing, colouring and drawing, it doesn’t really matter what it is, it’s the process I love.  When I make something, I feel inspired, absorbed, hopeful and accomplished. I often think that as long as I have a creative outlet, I am okay.Read More

A Week of Self-Care – Day 5 – Nature

My home features on my ‘treasure of pleasure’ list most days and I feel particularly grateful to have my garden. Private and secluded by a mini woodland, it is my peaceful oasis. With labyrinthitis, I didn’t go beyond my garden gate for over three weeks, but I was able to sit outside in my wheelchair, listening to the birds, feeling the breeze and breathing in the fresh air. Even during my days in bed, I found myself gazing through my large bedroom window, getting lost in the soothing greenery and being entertained by plenty of visiting wildlife.

Connecting with nature is beneficial both physiologically and psychologically. Even if it is only looking through a window or having a plant in your room, it is known to have a positive effect. I find it incredibly grounding and it helps me feel part of a larger whole. It is a living, breathing meditation and I try to experience it in some way every day, often with the help of Bertie and Bella, who of course rarely leave my side when I am unwell.

 

‘A Tickle of Whiskers and a Nudge of a Paw’ – a post about the health benefits of time with animals, and my feline protectors, Bertie and Bella.

 

 

 

 

 

 

 

 

 

‘Autumn’ – a post on nature, mindfulness and changing seasons.

 

 

 

 

 

 

 

‘Walking Meditation’ – a post about meditating while out and about, whether walking on legs or rolling on wheels.

 

 

 

 

A Week of Self-Care – Day 1 – The Call to Self-Soothe

A Week of Self-Care – Day 2 – Meditation

A Week of Self-Care – Day 3 – Nourishment

A Week of Self-Care – Day 4 – Movement

A Week of Self-Care – Day 4 – Movement

When subjected to bedrest, the body loses muscle mass at around 12% a week. Of course, it’s sometimes necessary to rest in bed when you’re unwell, and it’s what I needed during the most acute phase of my labyrinthitis, but that knowledge was a motivator to move. Not only that, but movement is vital to maintain healthy neural pathways to help my FND, and it is also as a key component of my pain management. Added to that, I knew that for my vestibular system (balance) to recover, it needed to be challenged. In other words, I had to move!

I have a range of movement practices I incorporate in my day, suitable for times ranging from when I have minimal automatic movement to those when my movement is at it’s strongest and most fluid. Even if my body is in a state of paralysis, it is still moving with the breath. That’s always my starting point, followed by mindful movement; a moving meditation that helps me regain body awareness. I then tap into my neurophysio techniques, working on my sit to stand as the basis for functional movement, and weight shifting side to side to generate some rhythm and momentum. My yoga practice ripples throughout it all. During the past few weeks I have practised yoga in bed, in my wheelchair, and I am this week starting to get back down on my mat. I am taking it incredibly gently, constantly tuning into my body and adapting what I do to meet my needs. To get some movement going feels liberating. My body feels alive as I sense energy coursing through my cells. I feel more present and I’m gradually regaining strength.

 

‘Adaptive Yoga Poses’ – In this toolbox you can find a month’s worth of adaptive yoga poses I completed in 2016 for the Mind Body Solution’s ‘Kiss My Asana’ Yogathon.

 

 

 

 

 

 

 

‘FND Movement Toolbox’ – A chart sharing some of the neurophysiotherapy techniques I use.

 

 

 

You can find an introduction on mindful movement by Breathworks, followed by a series of guided movements on Soundcloud.

 

A Week of Self-Care – Day 1 – The Call to Self-Soothe

A Week of Self-Care – Day 2 – Meditation

A Week of Self-Care – Day 3 – Nourishment

A Week of Self-Care – Day 3 – Nourishment

‘Let food be thy medicine and medicine be thy food.’ I think Hippocrates got it right over 2000 years ago. It’s the underlying principle I follow and I am a firm believer that food can either fuel health or feed disease.

I’ve always been one for little often, a ‘grazer’ as I remember my Paediatrician once commenting. When I’m particularly unwell, my digestive system shuts down as energy is diverted elsewhere and I quickly lose weight. I turn to mini meals that are as nutrient dense as possible.Read More

A Week of Self-Care – Day 2 – Meditation

Meditation is at the heart of my self-care. It brings me peace and stillness, whatever turbulence may be happening outside or within. It grounds and settles me. It is key to my symptom management. It enables me to tune into my needs and it informs all other aspects of my self-care routine.Read More

A Week of Self-Care – Day 1 – The Call to Self-Soothe

Three weeks ago I woke up, went to get out of bed and veered violently to the right. With FND, my body can make some interesting moves, but this was a new one. I was unable to sit up or even transfer into my wheelchair. I had completely lost my sense of balance, my head hurt, I felt sick and I was utterly exhausted. My GP came out and diagnosed viral labyrinthitis, an inner ear infection. She prescribed medication to help with the acute phase and warned me that the illness was unlikely to mix well with my FND.Read More