26 April 2023

As we observe MS Awareness Week, we want to share the inspiring story of Annie Jones, a lifelong meditator and former Breathworks teacher who has found relief from her MS symptoms through mindfulness.

What are usually the first signs of MS?

I was diagnosed with primary progressive MS in 2006, at the age of 55, but like many people my age, I’d had symptoms for many years before reaching this diagnosis. With primary progressive MS, symptoms develop sometimes quite slowly, but never go away - unlike the picture with relapsing remitting MS. The symptoms can be quite vague – my first noticeable symptom was an advancing pain and numbness in my right hand, initially diagnosed as carpal tunnel syndrome. Once a symptom appears, it tends to worsen over time, but, as in my case, this can happen over many years. 

Pictured: typical MS Symptoms (Image from Vecteezy)

Annie's MS Symptoms

My main symptoms now are continuing numbness, now affecting both hands and my feet – this can lead me to be clumsy, and I’ve broken a lot of plates and casserole dishes over the years! My mobility has decreased, and I walk slowly and with a stick, and for short distances only. My MS bladder limits me in many ways – I experience frequency and urgency of urination which could lead to embarrassment in years gone by, until I finally became unembarassable!

MS fatigue is prominent for me, and I also experience altered sensation, which manifests as tingling and numbness in all my limbs, with an odd feeling, as if my arms and legs were turning to stone. I am often in pain, with varying degrees of severity – it’s worse when I’m tired or stressed or have done too much. The various medications available for pain relief have proven to have an unhelpful sedating effect on me, so I have found other strategies to manage most of my symptoms. After having covid in September 2022, I found that all my MS symptoms worsened, some a little, and some quite a lot. I’m refining and adapting my coping strategies as life changes and my MS develops.

Can mindfulness help MS?

So has mindfulness helped me, and if so, how? I learned the basics of mindfulness meditation when I was in my teens, over 50 years ago now. I remained a meditator through my life, though with lengthy periods when I lost the routine of regular practice in the busyness of life. 

After my diagnosis,  I wanted to learn more about mindfulness in the context of illness,  and develop my own practice to help me manage my illness. Once I came across Breathworks, I was keen to book a place on the Mindfulness for Health course (formerly known as 'Living Well with Pain with Illness'). Life and work got in the way, but in January 2010, the stars aligned favourably and I was able to book a place on a course led by Gary Hennessey and another trainer, Hilary.

Improve balance and coordination

I remember that as the course began, I really, really did not want to do the mindful movement - largely because of my clumsiness and lack of coordination - but this was an integral part of the course. I took a deep breath and decided to do what I could. In fact, once I overcame my resistance, mindful movement proved hugely beneficial, and has helped me over the years to manage problems with balance - helping to keep me safe in the shower and minimise falls.

Bringing mindfulness into daily living – food preparation, washing up, etc – helped me to be safer and avoid accidents. I no longer drop plates or break  casserole dishes! There has been no repetition of the time, early in 2007, when I sat on my kitchen floor and sobbed, having dropped yet another casserole dish whilst removing it from the oven. I sobbed as the chicken casserole spread across the kitchen floor – would I ever again be able to prepare a meal without cutting myself, burning myself or dropping the food all over the floor before we could eat it?

"Knowing what you are doing whilst you are doing it is the essence of mindfulness practice", wrote Jon Kabat-Zinn, and this has become my mantra as I move through my day. My hands are still clumsy and painful – mindfulness doesn’t cure MS! – but bringing awareness into daily tasks has helped me to maintain function and carry out necessary tasks with greater confidence and safety.

"Bringing awareness into daily tasks has helped me to maintain function and carry out necessary tasks with greater confidence and safety"

Improve energy levels

My life is a constant balancing act between activity and rest, managing to remain active enough to avoid or postpone loss of function and deconditioning, but not pushing myself to exhaustion and collapse. Bringing mindfulness into my day to day life has been hugely beneficial with this.

How does mindfulness help with stress?

I would describe MS as an erosive disease. It erodes your life and functioning, and depression is a common consequence of the impact of the illness on your life, but one I have, perhaps surprisingly, escaped so far. Practising mindfulness reminds me to widen my focus beyond the pain and difficulty and frustration of my symptoms, and see the many positives in my life – including bringing awareness to the ways in which my illness has created opportunities and experiences which have enriched me.

Mindfulness practice helps me to look beyond my own boundaries to the connectedness of all life – it gives meaning and context to my experience.

"I honestly feel that mindfulness practice has helped ground me through these years of turbulence and extreme distress"

MS symptoms can be exacerbated by stress. I have experienced a series of extreme and unavoidable life stresses, bereavement and loss over the last seven years. My continuing mindfulness practice has helped me cope not just with my illness, but with the emotional distress and pain in my life these last few years.

The gift that keeps on giving

Training as a mindfulness teacher with Breathworks in 2012 enabled me to bring the benefits I’d experienced to other people with MS, which was a creative and rewarding part of my life for the few years I was able to do it.

Mindfulness practice helps me to look beyond my own boundaries to the connectedness of all life – it gives meaning and context to my experience.

I have adapted the practices I learned to suit my individual problems and needs. For example, when I wake up each morning, I spend a few minutes with a mini-Body Scan, as I check out my pain levels, and slowly ‘unfreeze’ my body so I am at less risk of falling as I get out of bed.

Building resilience in tough times

I honestly feel that mindfulness practice has helped ground me through these years of turbulence and extreme distress, during the events leading up to my son’s death by his own hand in May, 2016, and since. I am not exaggerating when I say that I believe that my mindfulness practice has helped save my life as I’ve moved through these years. I still remember the day in the week of my son’s death when, walking around the estate where I live, I saw a double rainbow, an arc within an arc. Mindful awareness – noticing -  helped me to connect with this moment of beauty, even at the worst of times. Maintaining a focus on compassion practices has helped me to grieve mindfully and not lose myself in blame, recrimination, anger or bitterness – and helped me, too, to see and appreciate the many kindnesses I have been shown.

"Before we know what kindness really is, we must lose things"

I experience the ebbing and flowing of the tidal flow of grief, of course, and mindfulness of thoughts and emotions – looking at thoughts and emotions rather than from them – has helped me navigate my way through the days and years. When I am overwhelmed by it all, I can remind myself to breathe, feel what I have to feel, and know that this intensity will pass. I am 72 now, so moving towards the end of my life, and I am grateful that my mindfulness practice has supported me through illness, loss and sadness and helped me to keep in touch with beauty, joy and life.

Annie having tea in 'The Cowshed' cafe

Our Mindfulness for Health Course empowered Annie to apply the Breathworks approach to mindfulness, enabling her to better manage her health condition and live a happier life.

On this course 85% of participants felt better able to manage their health condition, and 80% experienced improved quality of life following our 8-week course.⠀

Book on to our Mindfulness for Health Course and learn how to use mindfulness to manage your pain or health condition.

You can also find helpful information on how to live well with multiple sclerosis from these trusted resources:

World MS Day

Multiple Sclerosis Trust

Overcoming MS

MS Society UK