Living with Tinnitus – How listening to my breath helped me deal with the 24/7 sound in my head

I’m Niamh, a mum and creative director of my own design company that I started two decades ago. Each role has taught me important life lessons – but one invaluable lesson I have learned is that life is moving quickly and sometimes we all need to slow down. Recognising the need to slow down is crucial. Learning how is the hard part.

When I was 10 years old, I was diagnosed with Scoliosis – a curvature of the spine and I had to undergo two major back surgeries, one which involved two titanium rods being fused parallel to my spine.

I never let this slow me down or deter me from living life to the full. However after being involved in two car crashes a week apart in 2012, I explored Pilates as part of my physical rehabilitation from the accidents which was probably the first time in my life I really noticed my breath. We all breathe but very often life is so busy that we don’t even know we are breathing.

On a Saturday morning in September 2015 my life changed when I woke up with a loud ringing sound in my ear. I was soon told by my doctor that I had tinnitus which should go after a few weeks once I took the medication the doctor prescribed – no biggie right? As the weeks went along with the tinnitus I also discovered that I was deaf in the same ear. I visited consultants, had hearing tests and MRI scans but received no answers. While ultimately it was a relief that this wasn’t something serious, I still felt slightly frustrated being told that both the loss of hearing and 24/7 rising sound was most likely permanent, was difficult to process.

For the first time in my life I struggled mentally. I think it was because I had always dealt with everything else in my life with finding an answer, finding a solution, seeing light the end of the tunnel – but this made me feel like I was looking into a long tunnel and I honestly couldn’t see the light – I could only hear the sound and there was absolutely no way of escaping it.

After one of my meetings with DeafHear, Limerick, it was suggested that I explore Mindfulness to see if it would help me manage both the tinnitus and deafness better. I had only heard about ‘being mindful’ through a friend once but other than that I had never tried it. I was normally too busy running here and there juggling the variety of roles between work, the kids, my pilates, physio, the house and everything that life throws at you. I really hadn’t the time to think about adding something else to my busy schedule but between the encouragement and support from DeafHear and knowing that there was no other alternative to me I decided to explore it further.

This is how my Mindfulness Journey began; I enrolled on a course called Mindfulness Based Stress Reduction Programme (MBSR Programme) which is run over 8 weeks. MBSR teaching was founded 50 years ago by Jon Kabat-Zinn at the Centre for Mindfulness in Medicine, University of Massachusetts Medical School and focuses on applying mindfulness to the whole range of challenges that can arise from life’s stresses and physical and psychological conditions.

The impact MBSR has had on me has been life changing and has not alone helped me deal with the constant 24/7 rising sensation in my ear, and how I struggled mentally before with the deafness. I can honestly say it has changed my life and under no circumstances am I exaggerating when I say it has also helped with my hearing, as just one of the many things that I learned was how to embrace my tinnitus and my deafness moment by moment. When I started the course and we were introduced to meditation I really struggled with it, I blamed the tinnitus at first but then I realized that I didn’t like sitting doing nothing – my mind was ‘too busy’ to just sit there! But all of our minds wander – that’s just what minds do! So my teacher asked me to put the Welcome mat out to my tinnitus – just acknowledge it’s presence and accept that it is there. That was the turning point for me. As soon as I started to do that a slight shift happened. It took practice but I got there and the more I practiced – without forcing or using myself to ‘do it right’ – I just sat with it – that is when it began to feel a little quieter – a little less intrusive.

The funny thing is that almost 4 years on while it has never once stopped it now is just part of my everyday life – and while my curved spine is something I have got used to living with the tinnitus has now also become part of me – part of who I am. There are still those days when I struggle – especially when it’s loud and I physically mightn’t feel like getting on my bike – I also recently discovered last year that i am in early menopause and have osteopenia so my rods can feel a bit weighty – but on those days mindfulness practice reminds me that those days will pass and I will feel different again.

“You can’t control the waves, but you can learn to surf.”

Life is full of challenges but MBSR gives us the tools to better deal with those challenges when they arise and make decisions with clarity rather than reacting on autopilot from our heads alone. When I started to introduce mindfulness and meditation into my life I found that as well as starting to accept my tinnitus I also started to become more creative. My mind became clearer, and I even became more productive. I wanted to share some of the things I had learned with my family and friends, and with a creative mindset, I realised that if, like children, we were taught to learn some of these quotes then they might just sink in if we take the time to appreciate them. I created straight forward messages that you could place anywhere you think you will see them and this was the start of MoMe – A Moment for Me – Flash Cards for Grown Ups. I gave them to friends and suggested they place them wherever they think they would notice them – I have one in the mirror in my bedroom, a few on my desk and one as a bookmark in my favourite recipe book that reminds me to stay present as I prepare a meal.

The feedback I received was so positive from the start and the people who bought them for themselves or friends said how they helped them to take mindful moments to check in with themselves throughout their busy days.

Since I started MoMe I have had an active social media presence on Instagram because I also discovered that I love photography and writing – something I never realized I was good at before. This has also has allowed me to connect with so many others who are also suffering from tinnitus. People from all over the world including Peru, the US and Australia but what stood out most to me was how I was contacted by a guy who I have known for years who has been suffering with tinnitus, he told me that he hadn’t spoken about it to anyone for fear that people would think he was “going crazy” as he didn’t want anyone to know he was ‘hearing sounds in his head’. This made me realize the importance of talking about it.

I have discovered from research and from talking to other people who are suffering with tinnitus that there are different types of sounds – for some it’s a buzzing, for some it’s a ringing. Some have it in one ear – like me and others have it in both. While there still doesn’t seem to be any scientific research available stating a cause of tinnitus from what I have learned and from my own research is either it is caused from loud music or trauma of some sort. There are also different things that seem to set it off for different people but stress seems to be a big factor in pitch differences. Again, the MBSR programme in particular has been so beneficial here as it teaches us where we hold stress in the body and by recognizing our automatic pilot through the practice we also learn to recognize what causes us stress.

From the practice there are four things that help me deal with my tinnitus daily:

• Meditation: there are so many benefits that I have experienced from meditation too many to name them all here, however the clarity and focus this brings to my day makes me feel stronger mentally to deal with the challenges my tinnitus brings.
• Cycling: I took up cycling after I discovered that the whistling of the wind in one ear seems to drown out the sound in the other. I am fortunate to have a lovely cycle pathway near my house that goes out to the University of Limerick along the banks of the Shannon River so this has also helped with my mindful practice as the things I see every day on my bike connects me with nature. This has such a knock-on effect in a positive way mentally every day I get on my bike.
• Tuning into other sounds: the sound of the rain or when I go for a walk I will often stand for a moment and listen to the birds, a stream or the sound of the wind blowing or even the sound of cars driving by.
• Gratitude Practice: waking up each day with a grateful heart means that on the days I may not initially feel like going for a cycle from tiredness or a physical back pain thinking of at least 3 things I feel grateful for can help give me the mental energy I need to get on my bike to go for a cycle yet I also now allow myself to rest the days I need to too.

While I am very fortunate that practicing mindfulness and meditation have helped me deal with my tinnitus and deafness there are still days when it can be so loud that it can be distracting but again those days I remind myself that it will change again and I will feel different again which helps me stay positive. Certain things like going shopping or socializing have become more difficult as noise can make it worse but again, my awareness of this means that when I do go shopping I try to go when it it less busy or when I’m socializing with friends I just sit in a place where I can hear better and remind my friends to talk into my right ear!

It’s funny as one of my favourite MoMe cards says “Accept what is. Let go of what was and have faith in what could be” – as this sums up me living with my tinnitus. I have learned to accept that my hearing has changed, these days I can’t remember what it was like not to hear the ringing sound and I have faith that it has made me stronger and in a way, because of my mindful practice, maybe it has even benefited my life. I now think of it as my internal alarm bell that screamed at me to re-evaluate a lot of things, including the benefits of tuning into the sound of your breath and listening to your own voice. I am now even in the process of becoming an MBSR teacher myself so that I can hopefully help others who may be struggling with the noise that when acknowledged fully can soften its tone in more ways than one.