MS, mindfulness and me

My MS symptoms

In 2006, at the age of 55, I was diagnosed with primary progressive MS (PPMS). My main symptoms now include a painful numbness or tingling in my hands and feet – which can (and has!) led to accidents over the years. My limbs often feel as if they’re turning to wood or stone. My mobility’s decreased, and I walk slowly with a stick, for short distances only. 

My MS bladder limits me in the usual ways – I experience frequency and urgency of urination which could lead to embarrassment in years gone by, until I finally became un-embarrassable! MS fatigue is also prominent for me. I’m often in pain.

These symptoms fluctuate unpredictably, but can tend to be worse when I’m tired or stressed or have done too much. 

The various medications available for pain relief have proven to have an unhelpfully sedating effect on me, so I’ve found other strategies to manage most of my symptoms. I refine and adapt my coping strategies as life changes with age and disease progression.

Discovering mindfulness

I learned the basics of mindfulness meditation when I was in my teens, over 50 years ago. I remained a meditator through my life, though with lengthy periods when I lost the discipline of regular practice in the busyness of life. 

After my diagnosis, I decided to learn more about mindfulness in the context of illness, to help me with self-management. I live near Manchester, so decided to book an 8-week course with Breathworks.

The focus was on learning to live in the moment, rather than losing myself in thoughts about the past and fears for the future. I learned about the distinction between primary and secondary suffering. Our primary suffering is those things that we can’t change. I can’t choose not to have MS, for example – though I can learn ways to have the best life possible within its limitations.

My secondary suffering consists of all the thoughts, fears and emotions which can come to me about my primary suffering – often at 3am! I’ve learned to look at my thoughts and emotions rather than from them. This helps me to focus on the here and now and remember to engage with the joys of life as well as its painful aspects.

‘What we dwell on, we become.’ I can choose to see myself as someone who happens to have MS and who can find some coping strategies. Rather than becoming completely focussed on my pain and difficulties. This approach can be empowering.

Mindfulness and movement

Learning to bring mindfulness into all my movements was integral from Week 1 of my course. It was the part I really wanted to avoid - largely because of my clumsiness and lack of co-ordination. But I took a deep breath and decided to do what I could. 

In fact, once I overcame my resistance, mindful movement proved hugely beneficial. It’s helped me manage problems with balance, helping to keep me safe in the shower and minimise falls. 

Bringing mindful awareness into daily living – food preparation, washing up, etc. – helps me to be safer and avoid accidents.

There’s been no repetition of the time, early in 2007, when I sat in my kitchen and sobbed, as yet another casserole crashed to the floor. I wondered if I’d I ever again be able to prepare a meal without cutting myself, burning myself or dropping the food all over the floor.

‘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.

Pacing myself mindfully

My life is a constant balancing act between activity and rest, remaining active enough to avoid or postpone loss of function, but not pushing myself to exhaustion and collapse. You may know this as “pacing”. 

Bringing mindfulness into my day-to-day life has helped me make mindful choices about how I spend my time. For example, if I choose to do something I know might wipe me out for a day or two, I can do it without regret or beating myself up about it. I’ll know that I accepted the potential cost when I chose to do that activity.

As my mindfulness practice has developed, I’ve learned self-compassion, which means treating myself with the same kindness and compassion as I would offer to a loved one. I’ve learned to say ‘no’ when necessary.

Mindfulness and mental health

I see MS as a disease that chips away at one’s life and functioning, and this can lead to anxiety and depression. Psychologists and neuroscientists talk about the ‘negativity bias’, the human tendency to focus on negative experiences rather than neutral or positive experiences. Mindfulness practice helps me to notice when I’m doing this and reminds me to look at the bigger picture. Using the breath as an anchor for my busy mind helps me return to the moment and my here and now experience. 

MS symptoms can be exacerbated by stress, and I’ve experienced a series of extreme and unavoidable life stresses, bereavements and loss over the last eight years. 

I still remember when, two days after my son’s death by his own hand, 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. 

My practice 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. 

When I’m overwhelmed by it all, I can remind myself to breathe, feel what I have to feel, and know that this intensity will pass. I’m 73 now, so moving towards the end of my life, and I’m grateful that my mindfulness practice has supported me through illness, loss and sadness. And helped me to keep in touch with beauty and joy and life.

Since COVID, mindfulness training has become much more available online, and organisations such as Breathworks and Mindfulness UK offer online courses. The Headspace app is also a useful source of information, training and opportunities to practice. 

Visit the Breathworks website

Visit the Mindfulness UK website

Visit the Headspace website