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
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.
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.
‘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
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
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
People often believe that meditation has to be done in a rigid, seated position, but even Buddhist monks practise mindful movement in the form of walking meditation. Formal walking meditation can look (and feel) a bit strange. The idea isn’t to reach a specific destination, but to walk intentionally, often back and forth. It tends to be a slower, more deliberate pace than ‘normal’ walking, as you guide your awareness to the movements you usually make automatically, for example how your feet move and the feeling of your body weight shifting from side to side, as well as paying attention to your breath and surroundings. As with other mindfulness practices, when you notice your mind has wandered, you gently guide it back to the focus of your attention.Read More
I’m sitting on my porch in the late afternoon sun. My chair rocks back and forth as Bertie tickles my toes with his whiskers and soft fur. The colours around me have been unveiled from days of misty rain; vibrant pinks, firey oranges, soft purples. Bees are hard at work, buzzing industriously from flower to flower. Swifts are soaring in amongst puffs of clouds, shrieking as if letting out a cry of exhilaration. Sounds of laughter and play reach me from the nearby park.Read More
“As long as you’re breathing, there’s more right with you than wrong.” Jon Kabat-Zinn delivered the first Mindfulness Based Stress Reduction (MBSR) course in an American hospital in 1979. It was originally designed to catch people falling through the cracks of the healthcare service, a clinic in the form of a course, helping people with all manner of conditions. It gave patients hope and empowerment, and treated them as people, not diagnoses or body parts, re-establishing the common humanity that can easily be lost within healthcare. Jon and his colleagues successfully brought meditation into medicine, an idea that is continuing to develop with life changing results. Since then, similar eight week mindfulness courses have spread around the world, not limited to healthcare. 145 MPs have completed an MBSR course; perhaps the wisdom will start filtrating Parliament? “Human beings are technologically phenomenal. Why can’t we take care of people? Why can’t we realise what the causes of suffering may be before we create the catastrophes, and address them?”Jon said. “Much of our diet is the news and there seems to be fantastic compassion after events, but zero wisdom beforehand.” He suggested localised greed, hatred and delusion are often motivators, which we need to move beyond if we are to change. “How do you know if you’re doing harm unless you’re awake, you’re mindful, you’re heartful?”Read More
Practising mindfulness is a process. It’s not about trying to get something, but about living and being, allowing the practice to unfold just as life does. There is no end point but that doesn’t mean we don’t make progress. Every so often, something happens that makes me realise just how far I have travelled. It’s a moment to acknowledge, to explore and to celebrate.Read More