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
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
I move from side to side, shifting the centre of gravity in my chest, left, right, left, right. My knees bend softly, my feet start to lift up, left, right, left, right. I look ahead in the mirror, left, right, left, right. I hold the rail, the sturdy support, left, right, left, right. There’s an unfamiliar jolt beneath me; my body twists and I fall on my back. Read More
I’m sitting on the sofa. An icy chill seeps through my skin, penetrating layers of clothing and blankets. My legs are switched off. Lifeless. Paralysed. I try to wriggle my toes. I can’t.
Symptoms of abnormal movement are a common feature of FND, so much so that it is sometimes referred to as Functional Movement Disorder. Paralysis, spasms, tremor, limp and gait changes can occur. Any part of the body can start moving in an unusual way. My movement can change so dramatically and quickly from full-body paralysis to violent spasms that can take me to the opposite side of the room. It is unnerving to experience and I expect it’s unnerving to watch.