“It is important people who are living positively with tinnitus get the word out there.” – Ian’s Story

We asked Ian to share his journey with tinnitus. He explains how it affected his personal life, different coping strategies, and what support helped him to live well with tinnitus. Read more below:

Can you tell us a little about yourself?

I live in Northumberland. I have just moved from a small town on the coast to a village out on the country. Northumberland is a great place to live. 10 minutes and you are out amongst nature. Well in summer it is. Winter can be a bit wild when the winds blow across from Norway and over the North Sea. I have just retired after working for 46 years in the NHS. I play croquet twice a week (to a mediocre standard) and I am looking at what else to do with my time now that I have more of it. But have taken on a bigger garden, so that will take up some time.

I am also a performance poet and so do lots of performing throughout the North East – to local groups. WI’s and to local communities in village halls.

When did you first notice your tinnitus, and what was that experience like?

I first started with tinnitus on 8 November 2020. I had had a sore ear for a few days – but whilst I was seen by a doctor, getting all the right treatment during the pandemic was more difficult. But I just woke up one morning and had this high-pitched whistling in my ear. It was very frightening, especially as getting help was difficult. The local GPs were sympathetic but seemed to have no idea how to help. My anxiety went through the roof. I probably didn’t sleep for about 5-6 days – whilst still trying to work! The tinnitus was all that I could really focus on, which just made it worse. My initial thoughts were that I cannot live the rest of my life like this.

How did tinnitus affect your daily life in the early days?

As I said, I couldn’t sleep for the tinnitus, which really affected my whole life. I couldn’t read, watch TV, do anything. It was probably made worse by the fact that ‘normal’ life was on hold and there were no outside activities going on, so the tinnitus became the focus. Eventually, I managed to train myself to sleep by concentrating on other sensory matters. So, I used lavender oil on my pillow and whilst lying in bed and concentrated on the feel of the sheets and duvet on my skin and the smell of the lavender. This helped training myself away from the tinnitus and allowed me to fall asleep. There were times when I felt that I couldn’t go on and my anxiety went through the roof. It was a very traumatic time, particularly as there seemed no options for relief.

What were the biggest challenges you faced when you were first trying to understand or manage tinnitus?

The challenges were just trying to get on with life. Being unable to sleep obviously had a dramatic effect on my daily life – just managing day to day activities but also trying to work – I was still working through the pandemic. I was tired, irritable, depressed and found concentrating quite difficult. Trying to maintain a professional front through all of that was quite challenging and quite exhausting.

What helped you begin to cope or move forward?

Obviously support from my family was the main thing that helped me get through this initial period. They supported me and in particular tried to support me to engage in activities that helped quiet the tinnitus – concentrating on other activities. My daughter bought me some grown up colouring books and pencils, and doing this focussed my mind away from the tinnitus. I also practiced relaxation techniques. My friend suggested listening to sleep stories at bedtime and I eventually found that these really helped me to get off to sleep – again concentration on something other than the tinnitus. I dialled into a couple of tinnitus support groups. It was helpful to hear some success stories – but I found online support difficult and there were a lot of stories of people not being able to cope – which I found a little counterproductive. The more I read about tinnitus the more I found hope that, although it would not go away, I could possibly assimilate it. One thing I find most strange is that if I have been in a loud environment – such as going to the pictures (not pop concerts), or in city areas I often find this inhibits my tinnitus and I can often be tinnitus free for 2 or 3 days afterwards.

Did you find any support, advice, or strategies that made a real difference for you?

As above. People in my social circle (a lot of fellow poets are also musicians) came out and talked about how they also live with tinnitus and how they now live with it and found that over time it mostly drifted into the background.

Have you been able to return to any activities, hobbies, or parts of life that tinnitus once made difficult?

I very much lead a normal life now – nothing is off the cards. I have found that my hearing has become slightly more acute and so occasionally alarms are a little irritating, but generally I do what I want with very little restrictions. I have flown several times including to India, Malaysia, New Zealand without any concerns both on the flight and afterwards. As a writer having acute hearing is very useful in restaurants. I can pick up on other people’s conversations, and I get so many ideas for poems and stories!! I occasionally get periods of silence- and I really appreciate silence more than I ever did. But 80% of the time it’s there in the background but doesn’t bother me.

What would you say to someone who has just been diagnosed with tinnitus?

The beginning is obviously the worst. There are times when there does not appear to be any hope, that your anxiety is through the roof and that you cannot see a way forward. But there is hope and with practice and persistence you can find a way to cope with it. It may never go away but you will learn to get on with life and gradually it will fade into the background. There will still be loud days – but most of all you will be able to lead life as you want to live it.

What message or piece of encouragement would you like to share with others living with tinnitus?

The early tendencies are to fight it, to concentrate on it and the hope against hope that it will go away. The real path to living with tinnitus is to accept it as part of you.  It’s like having an annoying uncle in the family. You can’t ignore them because they are part of your family, but you don’t have to like them and you don’t have to spend every day with them. Live your own life. You obviously will meet up time to time, but it will be a passing phase. Find things to do that you like and practice relaxation.

Why do you think it’s important to share stories about living with tinnitus?

There is a lot of good information out there – but there is also a lot of bad information. The internet is full of horror stories about how people are not able to cope with tinnitus, and whilst I am sure that this is true, in some circumstances there are also a lot of hopeful stories out there. There are also a lot of fake remedies and ‘snake oil’ adverts. It is important people share real stories to help people and steer them away from the falsehoods. It is very easy to fall into a downward spiral and read so much that supports that deep depression. It is important people who are living positively with tinnitus get the word out there.