28 May 2024

Ahead of World MS Day, Annie Jones returns to tell us about the reality of living with this condition, and how mindfulness has helped her find relief from symptoms. 

One Year On... 

Reading through this blog now, a year on from when I first wrote it, I’m reflecting on what has changed over the last year. MS is, of course, a progressive illness, and I’m now a year older. A second bout of Covid in September 2023 hasn’t helped. Some of my symptoms have worsened - notably my MS bladder problems, my mobility, and my energy levels. Compared to many people with MS, even now, my symptoms are relatively benign, but they remain disabling, distressing, and exhausting. My 15-year-old Border Terrier, Bruno, died in January, and this added an extra layer of sadness to the year.

Like everyone with any kind of long-term illness, I’ve experienced the impact of the erosion of the health and social care services over the years, and more particularly since Covid. In my more cynical moments, the emphasis on ‘self-management’ translates to ‘you’re on your own. Get on with it’.

I’m mentioning this here because I want to say that my mindfulness practice helps support me through the difficulties and frustrations of living with long-term illness as the services decline. My mindfulness practice helps me reflect, find context and balance, and manage self-management as best I can! It would be easy to be angry with clinicians, but they are doing their best under difficult circumstances not of their making. One of the pillars of self-compassion is awareness of our common humanity, and this helps me to ‘see the bigger picture’, focus on what is important, and be calm and persistent when I really do need help. It encourages me to focus not only on the challenges and difficulties of my life but also on what is positive and helpful.

What are usually the first signs of MS?

I was diagnosed with primary progressive MS in 2006, at age 55, but had symptoms for many years prior. Unlike relapsing-remitting MS, primary progressive MS symptoms develop slowly and never go away. My first noticeable symptom was pain and numbness in my right hand, initially misdiagnosed as carpal tunnel syndrome. Over time, my symptoms worsened.

Now, I experience numbness in both hands and feet, leading to clumsiness and frequent accidents. My mobility has decreased significantly; I walk slowly with a stick and only for short distances. I also suffer from MS bladder issues, causing frequent and urgent urination. MS fatigue is a major issue, along with altered sensations like tingling and numbness in my limbs, sometimes feeling as if my arms and legs are turning to stone. Pain varies in severity, often worsening with tiredness or stress.

Medications for pain relief have sedating effects, so I rely on other strategies to manage my symptoms. After contracting Covid in September 2022, my MS symptoms worsened, requiring further adaptation of my coping strategies as my condition progresses.

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  Life and work got in the way, but in January 2010, the stars aligned favourably and I was able to book a place.

Here's what I found...

Improved Balance and Coordination

Initially resistant to mindful movement due to clumsiness, I discovered it greatly benefited my balance and coordination. This practice has reduced falls and accidents, making daily activities like food preparation and washing up safer. I no longer drop plates or break casserole dishes. In the past, I have cried over dropped dishes, but mindfulness has helped me avoid such accidents and maintain confidence in my daily tasks. Jon Kabat-Zinn's mantra, "Knowing what you are doing while you are doing it," guides me through my day.

Improved Energy Levels

Managing MS involves balancing activity and rest to avoid exhaustion and deconditioning. Mindfulness has been crucial in maintaining this balance, helping me stay active without overexerting myself. My life is a constant balancing act between activity and rest, and mindfulness has made this balance more manageable.

Improved Stress Management

I would describe MS as an erosive disease. It erodes your life and functioning, often leading to depression, which I have fortunately avoided. Practising mindfulness helps me to focus beyond the pain and frustration of my symptoms, allowing me to see the positives in my life. It brings awareness to the opportunities and experiences my illness has created, enriching my life.

Mindfulness has also made me aware of my tendency towards self-criticism and the importance of being kind to myself, especially when struggling with tasks I once found easy. This practice helps me to look beyond my own boundaries and connect with the larger picture, giving meaning to my experiences.

MS symptoms can worsen with stress. Over the last eight years, I have faced significant stress, bereavement, and loss. My mindfulness practice has been crucial in coping with these challenges, including navigating the pandemic in isolation. Watching my dogs engage with life has also become a part of my daily mindfulness practice, reminding me of the present moment's beauty and simplicity.

Greater Emotional Resilience

Mindfulness practice has been crucial during the years of turbulence and extreme distress, especially surrounding my son’s death in May 2016. It helped me connect with moments of beauty, like seeing a double rainbow shortly after his death. This awareness allowed me to grieve mindfully, avoiding blame, anger, and bitterness, and appreciating the many kindnesses shown to me.

Mindfulness helps me navigate the ebb and flow of grief by observing thoughts and emotions rather than getting lost in them. When overwhelmed, I remind myself to breathe, feel what I need to feel, and trust that the intensity will pass. Now at 73, I am grateful that mindfulness has supported me through illness, loss, and sadness, helping me stay connected to beauty, joy, and life.


Unexpected Opportunities

Becoming a Mindfulness Teacher

Training as a mindfulness teacher in 2012 allowed me to share these benefits with others with MS, a rewarding part of my life for the years I was able to do it. I have adapted the practices I learned to suit my individual problems and needs. For example, each morning, I spend a few minutes with a mini-Body Scan to check my pain levels and slowly ‘unfreeze’ my body, reducing the risk of falling as I get out of bed.

You can learn more about the Breathworks Mindfulness Teacher Training Pathways here

Raising Funds & Giving Voice through Poetry

A recent example of how mindfulness has enriched my life is my participation in PoetryFest in July 2023.

The brainchild of a fellow Community of Practice member and mindfulness teacher, Katie Forster, PoetryFest'23 began as an online poetry reading evening and fundraiser for Breathworks. It then developed into a book. To date, PoetryFest'23 has raised over £500.

All the poems read at the event and all poems in the book were written by people who live each day with pain and illness. As the cover blurb says, ‘mindfulness and creative expression helps them (us!) to navigate their way through all the unavoidable challenges of their lives, towards finding a way to live as well as possible’.

It was a real pleasure and privilege for me to be able to help organise the event and then help produce the book – something we can all be proud of. PoetryFest'23 also gave me an opportunity to highlight an issue experienced by many people living with long-term illness – bladder problems, which can limit our lives and which people are often reluctant to talk about. I hope that highlighting the lived reality of this with humour but realistically helps someone, somewhere, sometime.

The PoetryFest'23 anthology offers a great companion when living with pain, illness or any other long-term condition. Why not purchase one for yourself (or a friend) and support us in raising funds for Breathworks at the same time? 

Available here via Lulu for just £8.00.

A Final Note

What better way to wrap up this blog than to leave you with one of my submissions to the PoetryFest'23 anthology, speaking to one of the many complications of living with Multiple Sclerosis...


O Bladder, my Bladder, you really are boring –
Whatever I do, you keep pouring and pouring…
The drugs haven’t worked,
And I can’t do the Botox,
So padding is needed, to save me from… wee shocks.

“Frequency”, “Urgency” – words that I hear.
“Incontinence” too – I could shiver in fear.

Each journey I plan with a general’s precision,
To go? Or stay home?
It’s a major decision.

O Bladder, my Bladder, WHY do this to me?
“Why not?”, comes the answer, “it’s only some wee.”

O Bladder, my Bladder, I’m not fond of you –

But things could be worse –
At least it’s not poo!

Author: Annie Jones

Source: PoetryFest'23 Anthology

Blog author: Annie Jones

Date: 28 May 2024

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