When I first began my journey with mindfulness for health, my personal knowledge was limited to spinal and leg pain. I wasn't really aware that there are pain conditions that can affect the whole body - such as fibromyalgia.
Over the years I've had the privilege to meet many people living with fibromyalgia, such as Lesa Vallentine, 52, Derbyshire. Fibromyalgia is a painful and unpleasant condition. It can drag you down, leaving you exhausted and desperate. People tell me that living with fibromyalgia feels like it wrecks your entire life: sleep, being awake, relationships, and mental wellbeing – basically carpet bombing everything you hold dear.
As Lesa said to me, "I suffered from fibromyalgia for over five years before getting diagnosed. It was like having the flu and your worst hangover rolled into one and on top of that I had the uncertainty of not having a proper diagnosis, I was struggling with incredibly bad anxiety as I really didn't know what was happening to me."
However, there is hope, through our Breathworks programmes, time and time again I have seen that fibromyalgia is a condition that responds well to mindfulness. Mindfulness is a 'whole life' approach where you learn how to work with your mental and emotional reactions to your pain and exhaustion; you learn how to bring mindfulness into daily life and pace your activities; you learn how to become more emotionally positive and re-claim your relationships and rediscover the joys and pleasures in your life again.
Lesa also told me about the impact that practising mindfulness now has on her life and living with fibromyalgia: "Now, I do live in the moment, and it is quite beautiful, I feel at peace, I feel much more confident and I am able to look to the future with confidence. I am much more compassionate with myself and everyone else.
I now accept that this illness is not my fault and it is now 100 per cent easier to deal with the primary pain that comes with fibromyalgia by eliminating the secondary suffering of worry and anxiety.
There is so much guilt about being ill. But, illness is not something to be ashamed of. It is not a sign of misfortune or defeat. Through illness, we can gain insight into the meaning of life, its value and dignity and strive to lead more fulfilling lives."
I'm looking forward to joining top speakers from around the world at the Fibromyalgia Online Summit which begins on the 12th May 2016 (Fibromyalgia Awareness Day) and carries onto the 14th May. So please, if you live with fibromyalgia or if you care for someone with the condition, tune in to the Fibromyalgia Online Summit. I know that even in the worst states of chronic pain and mental anguish, mindfulness will help.
I first started with symptoms of fibromyalgia after I fractured my lower spine, thirty years ago. I was still experiencing lower back pain, some months after an accident, and I began to notice pain in other areas of my body, including upper body pain and pain in my arms and hands. I was in the surgical corset as a result of fracturing my spine, but ongoing pain, as the fracture healed was down to Spina Bifida Occulta. A consultant recommended surgery on my lower back but was dismissive of the pain in the rest of my body.
The pain across my body worsened. The consultant had dismissed me and my GP was totally unsupportive, telling me that people often got left in pain and I would just have to get used to it. However, I did get a referral to a local Pain Clinic where they called me the 'woman with the mystery pain'.
By this time I was getting very despondent and began to question how much pain I was really in. Consequently I pushed myself through the pain to continue working. I was also experiencing constant headaches, had developed IBS and felt constantly fatigued, along with what I now know as brain fog.
Within months of getting a new job, it became obvious that I couldn't continue working. I was spending all my evenings and weekends in bed. I was also totally disillusioned with the medical profession and started to explore alternative health. I took up yoga, tried to learn relaxation techniques and used massage when I could afford it but I was also still pushing through my pain. As a result, I developed depression. I was becoming so overwhelmed by the pain that it was difficult to see beyond that. I now rarely went to the GP about my symptoms, even though I had been living with them for about eight years.
I attended a course at a specialist pain clinic at Walton Hospital in Liverpool and found the course really helpful, especially mentally. It was the first time I was completely open about all my symptoms and my depression and also the first time I felt the medical profession really took on board how much pain I was in. I came back feeling mentally rejuvenated and with various techniques, including relaxation, to manage my condition more effectively.
Unfortunately, true to form, I didn't take on board the pacing element of the course. I convinced myself that I could go back to work and went into business with my now ex husband. I found being self employed in a demanding business, made it difficult to keep up with all the practices and techniques I had learnt.
When I was forty, my marriage broke down and I had a hysterectomy, as well as having to manage a difficult divorce and ongoing financial problems. I returned to Manchester to be near family and I enrolled on various courses to keep me busy. One day I wandered into the Manchester Buddhist Centre and saw a notice for a day of Mindfulness for people in pain.
After the day, I didn't really understand what Mindfulness was. However, I also came away feeling that I had been told something of importance which if I fully understood could help me see life in a different way. When I got a notification of the first course to be run by Breathworks, I immediately booked.
The course did indeed change my life. I had used various techniques over the years to help with my symptoms but not used them in an integrated way. Breathworks gave me a model to use, underpinned with the idea of Mindfulness. I took to meditation easily after years of practicing relaxation but it was the idea of Mindfulness that transformed how I thought and behaved.
The idea of primary and secondary suffering was integral to that. It helped that eventually I got a diagnosis of fibromyalgia, years after my initial accident. It gave me some insight into all the various symptoms, which I couldn't necessarily do anything about. However, what I could do was stop looking at my body in a negative way and work with it in the Body Scan. This transformed my experience of pain.
Where the pain had always felt solid and overwhelming, I could actually see how the pain differed in intensity and sensation throughout my body. It became something to explore rather than block. As I continued with that exploration I was able to again take pleasure in small things, like the sun shining through a window or the sounds of the birds in the garden. By pushing through the pain rather than simply being with it, I had lost the ability to see that I was more than the pain and if I widened my focus beyond that, there was pleasure as well as pain.
I have continued with a regular meditation practice, and I bring Mindfulness into my day, by being mindful of daily activities like brushing my teeth, brewing a cup of tea or simply stroking my cat and feeling the softness of his fur, and the sound of his purring. I have become much less reactive. I was often angry and irritable, the more pain and fatigue I had. By being aware of my mental states, I can catch myself much earlier and respond more skilfully in whatever situation I am in.
In terms of my Fibromyalgia symptoms, they haven't improved overall, and I have developed respiratory problems linked to it. However, by pacing and having appropriate rest, including stopping to meditate, I can influence my pain levels within a particular day. I am much more aware of the ebb and flow of my pain and fatigue and can respond more creatively, with those and other symptoms. I have a lot of insomnia but rather than worrying about it, I meditate in bed on nights where I am getting little sleep.
I still suffer from depression on and off but because I am much more aware of my mental states, I can be aware of when I am ruminating which makes it worse. I can also see that as with my pain, the depression isn't solid and I am more aware of the nuances of my emotions.
My quality of life has certainly improved since learning Mindfulness. I still have difficult times but I'm also much more aware of the joy in life. Living with a chronic illness isn't easy but it is still possible to have a life enriched by living in the present moment. For anyone living with fibromyalgia, I would advocate learning mindfulness, for through it we can learn the pleasure that is still present, amidst the pain.
I travelled to Sydney Australia with Vidyamala & Sona in February this year to teach on the annual Breathworks course, with 22 expected participants booked to attend. This was exciting for me personally on many levels – I'd never travelled to that part of the world before; I would be teaching with Sona & Vidyamala which is always amazing; it felt a bit like time travel because it was always a day ahead of home so when I spoke to people – I was in the future (!); it was hot Summertime (between 36 & 40 degrees sometimes) and it was my first proper holiday in many years.
I wonder, what would I want to know about this, if I were reading it? A mixture of Breathworks related topics perhaps and my own experience of The Journey. So, bear with me, this will probably wander a bit.
From a Breathworks point of view, it was just great to see the fruit of the work Vidyamala & Sona have been doing in the Southern Hemisphere over the last few years. There is a committed community of people from all over that vast Continent, (literally every corner) & from both islands of New Zealand, who enthusiastically believe in the benefits of Mindfulness for Health and who passionately want to get the courses out there to everyone they can. These people are from all walks of life, a wide range of age-groups, some are retired, many are still active in their chosen professions, some completely secular and some who are practicing Buddhists & Christians – a great cross-section of the population really.
The team involved in delivering the training this year included us three who'd travelled from the UK, plus three local teachers (Chris, Maree and Amitashradha), as well as 2 great women (Paula & Satyagandhi) who provided gorgeous food throughout the time we were there.
The team arrived at the venue, Vajraloka, a Triratna Buddhist Retreat Centre, a few days in advance to ensure everything was ready for the participants and on Thurs 12th/ Fri 13th, the participants arrived.
I feel I should say a little more about this because, as an Irish person, my idea of a long distance is the journey from Dublin to Galway or Birmingham to Glasgow – in other words, the sort of distances UK course participants make for their training retreats. Some of the participants attending our retreat had travelled by car for 2 days, some had flown 1,000's of miles across the Continent, some had travelled all the way from New Zealand to deepen their practice and complete their training as Breathworks teachers. I felt hugely privileged to be part of this group and the team working with them.
I mostly taught the TTa people components from the Mindfulness for Stress course to about half of the course participants and both Tti & TTa came together regularly for sessions where one, or two, or all, of the senior team taught the group. (I'm having a hot flush as I write this on the train to Adhistrana, which has vividly reminded me of the heat in Vidyaloka. As I mentioned, it was Summer in Oz and the temperature was regularly in the high 20's & 30's during the retreat. If it weren't for the air conditioning in two of the bigger rooms, I might have died in a puddle of my own sweat. There were times when I was teaching, when I would have a hot flush & the temperature of the day would rise, and I would have to stop and announce that the temperature was possibly killing their trainer in front of them. I'd fan myself and someone would remember to turn on the air conditioning. Saved! I was very mindful about it – in fact I felt I was modelling mindfulness although, in hindsight perhaps sometimes I may have been guilty of over-share. As indeed may be the case here but that's how it was :) I have a theory about why the Aussies are so cheerful – the amazing weather, the sunshine, the vitamin D, the great outdoors – they live in the Green Zone!)
Like yourselves, everyone who attended the Retreat has done an 8 week Breathworks course and for many of them, this was their 2nd or 3rd time to come on this retreat. Also for many of them, it was the completion of their training as Breathworks teachers and at the end of the retreat, all of the TTa group committed to running a supervised practice course. Indeed at least 2 of them have already started and I have been supervising them as they've dived right into the work. Several of the others will be starting their courses soon and those who had already finished their training some time ago are also working towards their accreditation at the moment.
There are some outstandingly wonderful aspects to training at Vidyaloka in Sydney – it's not too far outside the city but it feels like you're in the middle of nowhere; it is located on the opposite side of a river to military land where war games and weapons practice can often be heard booming while you're meditating (okay, that's not so wonderful – good for your practice though) and the river is the perfect place to swim in, every day at lunch or after dinner. There's a steep-ish trail down from the kitchen, through the bush, past groves of Eucalyptus trees and vivid flowers to the tea brown river at the bottom of a gorge. Everyone brings swimsuits to Vidyaloka & once you get down there to the beautiful riverside, it's off with your clothes and into the water. Once you're in that water, it's difficult to tear yourself away. People bring floaty noodle things to help with floating in the river - sea water is more buoyant then river water so you tend to sink. In some parts of the river, the surface is warm where the sun has shone on it for hours; in other places where it's in the shade, and right down at the bottom of the river bed, the water is cold. And sometimes, if you are very lucky and very quiet, a water dragon will come and sun bathe near you on the rocks. Wonderful though Taraloka & Adhistana are – you can't beat Vidyaloka and its river of bliss. (There were no crocodiles.)
I taught a group of 12 people and really, my outstanding recollection of them, which will always stand out for me from the retreats I've taught on, was how much we laughed together. There was a particular lightness and joy to the sessions that seemed to lift us all, which did not mean that deep & profound experiences didn't happen, but that there was a good humoured acceptance to whatever happened that helped us and that we took with us from the retreat. I felt that I was a better teacher because of this bond we created. I remembered Gary saying once "When real inquiry happens, you really love the person you're communicating with". I really love those people.
Another unique thing about the experience was that every single one of the team was actively working with pain or illness during the retreat. Vidyamala was dealing with a lot of physical pain & the effects of all this long distance travel, Sona was experiencing intense migraines on an almost daily basis, I had my back pain, Chris lives with intense chronic pain, as does Maree & Amritashrada. This required each of us to pace ourselves carefully and, probably more so than with any other retreat team, we looked out for each other, empathised with each other and supported each other. I don't know if the participants were aware of how much pain was present for the teachers but it was deeply inspiring to see the team, every day, choose to respond to their suffering with kindness, patience, compassion and acceptance for themselves & each other. Reflecting on it as I write, I feel moved almost to tears at the courage that this takes - to maintain this discipline; and the kindness it allows us to show one another as we take care of each other in this situation. But also, to see people make such a difference to others, despite their own pain – transmuting it into the gold that demonstrates to all the participants that it is possible to live our lives with good humour, to have fulfillment, even when our bodies are suffering.
At the end of the retreat, after we had said our farewells to the participants; the team remained for a Breathworks Australia, New Zealand Teachers Group retreat. This meeting will be an annual event where Founders, teachers and trainers can come together for CPD, training and mindfulness meditation practice. The Breathworks seeds have obviously taken root and are thriving in the Southern Hemisphere, where a clear need is present (as in so many other parts of the world) and the Breathworks mindfulness approach is recognised as a heartful and effective response to the suffering there. As the Continent is huge and distances between teachers are impossibly vast - networking and peer support are crucial to the new community there. I have no doubt that Breathworks will continue to grow and flourish there – with people like the ones on the retreat and completing their practice courses – it'll be amazing! I'm looking forward to going there again next year to teach, to learn and get to meet even more of the Breathworks community in Vidyaloka.
Have you heard that saying "Wherever you go, there you are"? Well, whatever I thought that meant, I met a different me in Australia. I used to be an operating theatre nurse – I have always considered myself pretty fearless. That is not who I was in Oz. I was jumpy and nervous. I don't like spiders – I was in the land of poisonous spiders.. I am terrified of snakes – I was in a country where St. Patrick had not done his thing, therefore, it is filled with lethal snakes. And, for someone who cannot hear the soundtrack of Jaws when I'm in the bath without getting a little nervous, I was in a country that has recently seen an increase in the number of shark attacks. Why am I mentioning all this? I got to live & breathe mindfulness practice as I watched my mind go to town on the fears & phobias of Karen Hall.
If there is one thing I noticed about my lovely new friends, it's how funny they found my fear of everything. Apparently it's typical of Irish people in particular. For the record Aussies, it's because we don't have any creatures that will kill or poison us on our fair Green Isle!
My standout experience of Primary & Secondary experience happened in New Zealand while I was on a 15 day solitary retreat – one morning, just after I'd gotten out of bed, I turned to straighten out my bed and saw a HUGE Golden Orb Spider just standing there on the middle of the bed (literally the size of the palm of my hand. I have big hands.). We just looked at each other for a while (at least that's what I was doing) and I kept breathing. Alone. Up a mountain. No-one to help me with this one. I was on my own. (With the giant spider). I finally took my courage in my hands and gathered up the 4 corners of the bedspread, carried it out to the verandah and shook it out over the railing. The giant spider clung on – thinking mocking thoughts & judging me, I was sure :) I got a sweeping brush and knocked it off onto the grass below (hoping that a bird would devour it).
I went back inside and could not stop thinking about the spider. About other possible spiders. About where the spider might have been all the time before I'd noticed it. About the possibility that the spider would come back. About what else might live under the cabin – maybe that was a small spider!!!! I wrote about it in my journal. I kept turning round to see if it had crept back in. Reader, I was in secondary suffering hell. I was still catastrophising about it the next morning. And I could see that I was doing it, but I could not forget that gleaming eyed giant spider with it's giant bulbous body, sitting on my bed. On My Bed! Eventually, I had to let it go. I talked myself down. It was Schrodingers Spider – both there and not there. Always there potentially. Or not.....
It was amazing to watch my mind. There was a part of me that was observing the chaos being created by all these thoughts, which was powerless to prevent my mind from working this thing out, powerless to bring it down out of Doing Mode – I could breathe and ground myself as much as I liked, my mind continued on its unmerry way. There was my primary experience – The Giant Spider, and all my secondary experience – thoughts, fears, judgments, physical sensations of fear. I could watch it unfold and slowly, as this was being processed, I was able to, eventually, choose how to respond. And let go of the spider.
I was reminded of the story of two monks coming to the banks of a river where they meet a woman who needs their assistance to get to the other side. One of the monks refuses but the other offers to carry the woman across the river. She is immensely grateful and they proceed on their way, leaving her behind. They walk in silence for miles down the road and finally, outraged, the 2nd monk expresses his disgust that his companion touched the woman and carried her across the river! "My friend, I helped her & left her by the side of the river, but you have been carrying her ever since."
That was me & the spider. It was long gone but I had kept it vividly with me in my thoughts, creating additional suffering for myself . Lesson learned. I hope.
Vidyamala, founder of Breathworks, asked Georgie Davidson if we could post her blog on the Breathworks site. Georgie works in Australia and is deeply steeped in the principles of mindfulness and mindful movement. Georgie was honoured to be asked to contribute to the Breathworks blog and provided the following article:
Mindfulness is purposefully paying attention in a non-judgemental way to what is going on in your body, your mind and in the world around you.
Since 1979 mindfulness has been weaving its way into western healthcare. Jon Kabat-Zinn, a pioneer in this field, taught the first Mindfulness Based Stress Reduction (MBSR) course at the University of Massachusetts Medical School, to people who were suffering despite receiving the best medical care (Kabat-Zinn 1990). Over thirty years later there is now considerable clinical and physiological evidence for the efficacy of MBSR for a range of health issues. The surge of interest in the last decade coincides with the advancement of technologies that have enabled researchers to discover more about the brain and how it changes with mindfulness practice.
How can a practice that sounds simple and 'non medical' help the complex and often treatment resistant issue of chronic pain? To answer this question we need to better understand the nature of chronic pain and this is best explained with a case study.
Kate's Pain Story
This is Kate's story but with 1 in 5 people in the developed world living with chronic pain, it could be your story too. Kate has had back pain every day for over two years. It started when she slipped and jarred herself at work. At the time she didn't think it was that bad and continued working through the day. The next day, however, she awoke with back and leg pain and became really worried. Her friend's pain started this way and it changed her life in unfortunate ways. Kate feared that her back would follow the same pattern. She visited her GP and one week later had a scan that showed a disc bulge. Now she was really worried feeling that she had a serious problem that would last a long time. This perceived threat to her body, her ability to work, finances, relationships and future goals caused Kate's body automatically to move into protection mode. Stress hormones flushed through her system causing her muscles to tense, she moved differently to protect herself and her thinking was focused on trying to work out what, why and how this happened. She was on the pathway to chronic pain - not because she was at fault in any way but because she was human and her body was primed for protection.
Sadly, no one told Kate that pain after an injury is normal as the body protects itself to enable it to heal; that disc bulges occur in most people and are often painless; and that after the initial period of healing it is our protective mechanisms that contribute to the persistence of pain. But now after two years of multiple visits to specialists and health professionals with conflicting advice and an array of treatments, Kate is stuck in a place of pain, anxiety and low mood. Brain scans at this stage would likely show alterations in the connection between different areas of the brain, an altered inner map of the body, and changes in the density of brain tissue in the areas of problem solving, attention regulation, interceptive awareness, emotional regulation, memory and threat detection. These changes in the hardwiring of the brain lock in the traumatic memory of the pain, prime the body for stress reactivity and trigger the sensory experience of pain. This happens in the same way that the brain compiles information to create experiences of sight, sound, smell and taste. When the body-mind interprets danger the brain triggers the experience of pain. Pain can then be generated by anything that is interpreted as danger: the memory of the injury, the smell of the workplace where the injury occurred, protective movement patterns, thoughts such as 'this is going to last forever'.
How can Mindfulness Help?
Mindfulness offers a person in pain a way to pay attention to what is happening in their body-mind. When an attitude of approach and curiosity is brought to the investigation, new ways of seeing the situation arise with a more accepting relationship to pain. There is less struggle and with less struggle there is a calming of the stress response, balancing of hormones and immune factors and an improved brain environment for new connections to form. The normal human response to challenge is to try to problem solve with lots of thinking. This doesn't work when the problem is in the body. Ruminating thought processes actually trigger the danger response causing more pain. Mindfulness offers a switch from thinking to feeling, with a tuning into the sensations of the body. Noticing sensations during the practices of body scan meditation, sitting meditation and mindful movement can help to shift patterns of emotional reactivity. Structural changes occur in the brain in regions responsible for attention and emotional regulatory processes, memory, self-referential processing, empathy, self-compassion and perspective taking (Holzel et al 2011a,b). More flexible connections in the brain occur so there is less getting stuck in automatic patterns of reverberating pain or worrying thoughts (Kerr et al 2013). This offers a new perspective with space for appreciation of beauty, engagement in creative pursuits and personal empowerment.
A question often asked is - why would someone with pain want to observe it? It's a good question because it does sound quite cruel to ask someone to inhibit their natural reaction to get away from pain. When we turn away from feeling our present moment physical and emotional pain we also turn away from truly feeling our full range of sensory and emotional experiences. The present moment is the space of seeing the colours of the sunrise, feeling the gentle warmth of the sun on your skin, hearing the symphony of birdsong. It is the experiencing of peace and joy. It is the learning about personal patterns that may trigger or exacerbate the pain. It is the seeing of pain as a medley of shifting moment to moment sensations rather than being the rigid truth. It is the place of forming an accepting and compassionate relationship to oneself. Not being able to access the richness, the beauty and the full potential that life has to offer - that is cruel. Mindfulness is certainly not an 'easy' path to follow but for many it's a worthwhile journey.
Practice-based programs such the Breathworks approach to Mindfulness-Based Pain Management (MBPM) can educate people experientially in how to cultivate a new relationship with their pain, interrupt painful patterns and begin making new choices in feeling, thinking, relating and living more generally. Engaging in these programs are relatively short, cost-effective ways of empowering people to really get to know their own patterns and and how to generate new, more life-affirming ones.
Mindfulness is offering a new approach within our health care system. We are still at the threshold of understanding how it can be helpful for people with chronic pain but we have exciting times ahead. Mindfulness may offer a pathway to decreasing the massive burden to our society created by the epidemic of chronic pain. It offers hope to people like Kate.