“Mindfulness has saved her,” Mum told a friend who was wondering how I was possibly coping with another health crisis and emergency hospital admission. I often say myself, “my mindfulness practice got me through.” The last few weeks have been no exception.
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I’m sitting in the courtyard. The sky clear blue above, hot rays of sun warming my skin. Grasses whisper in the breeze, a bee buzzes around a yellow lily. There’s a burst of laughter, a passing conversation. Cutlery rattles as the dining trolley is wheeled through to the kitchen.
I was partway through my teacher training week, feeling held in the space and held in the community as the gentle hustle and bustle of retreat activity went on around me. I was back at Vajrasana, a beautiful retreat centre in the heart of rural Suffolk. I felt part of the Breathworks family, experiencing a deep connection with the people, the practice, the training and the environment I was in. I was aware of my breath deep within my body, of gentle flutterings of excitement in my chest, a smile on my face.Read More
It’s been a little while since I last posted. I have been enjoying a period of greater stability in my health after what was a particularly challenging Autumn and Winter, and I’ve been focusing on, and thoroughly enjoying, my mindfulness teacher training.
I’ve started running a ‘practice practice’ Mindfulness for Health course (a trial run of the official practice course I will deliver as the final part of my training ahead of applying for accreditation). It’s an absolute pleasure to be sharing what I’ve learnt with others and an honour to be able to help facilitate people in making meaningful changes in their lives. I hope it’s just a taste of what is to come. I’ve been working on the Mindful Movement component of training and Looking ahead to the advanced training retreat I’ll be going on this summer. It really is all beginning to come together.
I’d like to share this little video I made for Breathworks with you, where I talk about my experience of the Mindfulness for Health course, how it complements my FND management and how it has ultimately given me a better way to live my life.
Voices for FND. Which voice do I want to be heard? The voice of frustration that we have to fight for diagnosis and treatment? The voice of sorrow that so many suffer so greatly from this condition? Or the voice of hope that it’s possible to live a good life even amongst these challenges? Read More
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
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 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
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
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
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