Tinnitus-My Story
This is my story of how I live a happy life with my Tinnitus. Over twenty-five years’ ago and with a young family, suddenly I developed tinnitus. At the time there were no local Support Groups where you could talk through your feelings, nor information available about the condition. However, my GP, who had a very positive attitude, told me that the brain is a ‘wonderful piece of machinery’ that will accept the constant sound of tinnitus as ‘another bodily function’ and so ignore it (habituation). Similar to living close to a railway line or in a house with lots of ticking clocks, because they do not pose a threat, your brain ignores them. I was referred to Ear, Nose and Throat (ENT) and there it ended; no further help was available! My tinnitus did make me feel miserable because it had taken away my freedom of choice – that of spending a “quiet” moment and in effect I grieved for what I had lost. This also affected my family, as it does those close to you. However, I resolved to do something about it myself. I read an article about changing the way we perceive issues affecting ourselves and decided this was the way forward for me and so I planned a daily strategy. This gave me something positive on which to focus and I was determined this would work for me. These were my simple techniques –
Waking up in the morning to the noise of tinnitus was always a bad time so I bought a clock radio which allowed me to wake up to music and voices instead – it worked! Then I would sit up in bed for a few minutes whilst my husband brought me a cup of tea (which he still does). Daytime did not pose such a problem as there were plenty of environmental noises. During the early days, whenever I was at home I would play music or listen to a taped story. At bedtime, I played quiet music, the sound level just below that of my tinnitus. As I played the same music every night it acted as a relaxation technique and helped me to sleep. And yes, my doctor was right, my brain learned to ignore the tinnitus and still does! For many years now I have not needed to play music at bedtime because my perception of tinnitus has made it diminish to a level that is not intrusive; in fact, I just don’t hear it anymore! There are positive aspects of tinnitus, I have made many new friends over the years and as one of the Lay Counsellors, I have been able to turn something that initially seemed ‘negative’ into something ‘positive’ by helping others who need support in managing their tinnitus.
Our Support Group offers those with tinnitus an opportunity to speak to someone with a positive approach who is managing their tinnitus.
Audrey Carlin – Lay Counsellor
The following is a letter we received from a young lady (who lives in Surrey) to whom we had spoken and written to on several occasions supporting and reassuring her. She finally rang to say thank you for the help we had given and when we talked I asked her if she could finally close the chapter on the negative aspects of her tinnitus by writing her journey, which, with her permission, would be helpful for other people experiencing the same. She was very happy to do this and here is what she wrote. She has promised to keep in touch with us from time to time to let us know how she is getting on.
Tinnitus? – I’ve got better things to do!
“Two weeks before the birth of my second child I noticed a noise in my left ear. I mentioned this to my doctor the next time I saw her and she said it would probably go once I had had the baby – so I forgot about it. The next time I noticed it was about 4 weeks later – in the middle of the night when I was feeding my baby. Then I realised it had always been there while I did the night feed. I was curious but it didn’t bother me and I certainly didn’t notice it during the day.
A few weeks later life started to become more difficult. My 3 year old son had become very jealous of the baby and I had already had 2 months of sleepless nights and so was under a lot of stress and pressure. I knew I was experiencing post natal depression, an awful lot of anxiety and to top it all off I got a bad ear infection. It was at this point that the noise suddenly seemed so present. I was aware of it all the time and it suddenly overtook my whole life.
I was in bits. My anxiety levels were through the roof. I couldn’t sleep. Even when I did sleep I got woken up in the night by my baby and the noise was still there. I woke up in the morning and it was still there. I was exhausted with a newborn baby and a difficult 3 year old. I found I had to check the noise was still there all day just to make sure it was still the same. In the evening it was still there and then I couldn’t sleep again. I had an ENT appointment where they told me there was no infection in my ears and my hearing was perfect. What I was experiencing was called Tinnitus. I was referred to another hospital for treatment but this would be a good six weeks or so. Six weeks?!!! I can’t live with this for six minutes let alone six weeks!
I was at the point of desperation. My life had been ruined. It was so unfair. I felt like I couldn’t go on.
At that time I spent every waking minute on the internet researching what tinnitus was. There seemed to be plenty of miracle cures and plenty of unhelpful discussion boards full of really miserable people. I immediately made a choice not to become one of these people. Then I stumbled upon the Chesterfield Tinnitus Support Group. I called them in floods of tears barely able to speak. They calmed me down and reassured me that once I had gotten over the initial shock and learned to live with it then I would hardly notice it. Of course, I didn’t believe them! But it was good to know there were people there to talk to.
My first turning point came when one morning I was, as usual, in tears, sticking my fingers in my ears to monitor the noise level. My husband came downstairs and asked me if I could pick some eggs up from the supermarket for him. “Don’t you know what I am going through? How can I possibly do anything with this noise in my head all the time?” His reply left me speechless. Very gently but firmly he said “Honey, it’s not really that important is it?” My jaw dropped. How could he be so dismissive? And then it hit me – How could he be so right?!
That day I bought him his eggs! And I still had tinnitus. That evening I watched TV and I still had tinnitus. That night I went to bed and had trouble sleeping, but I was no longer racked with anxiety. In the morning I woke up and yes, I still had tinnitus but I also put my best dress on to do the school run! Why? Because I had chosen to make the best of that day. I was starting to prove to myself that I could still do everything I used to do before I had tinnitus. This took a lot of courage.
I knew I was starting to get a grip on it when I was driving our family home one day. Both kids were screaming, there was an awful song on the radio and my husband was moaning about something or other I suddenly snapped “For God’s sake, I’d rather be listening to my tinnitus than you lot!!!!”
At my next ENT appointment the lady gave me some sheets of paper to start my Cognitive Behavioural Therapy. I was to write down when I had a thought about my tinnitus and to explore my feelings surrounding it. On day 2 of this exercise I felt really down. And then I had a big thought: “There is no longer any point in me continuing this project as it is making the tinnitus the main focus in my life again.” I called the Chesterfield Tinnitus Support Group once again to ask if I was on the right track with this and they reassured me that I had hit the nail on the head!
So I carried on every day practising. I would not give this tinnitus the attention it craved to stay alive. How did I do this? Distraction at first. Self discipline. Courage. Patience. Realising that I was not the most important person in my life. Realising that it was my choice to suffer tinnitus or to live with it happily. My focus went back onto my family. I chose to enjoy my newborn baby girl and my son. Soon they won’t be babies any longer. I don’t want to miss it. I have got better things to do in my life than sit here listening to my tinnitus!
“I was in an imaginary prison, with the word tinnitus tattooed onto my body. But today I realised that the prison had no door. I was only in there because I chose to be. Today I simply got up and walked out. I still have the word tinnitus tattooed on my body but I am no longer a captive.”
What do I do when my tinnitus feels loud and important? I remind myself of the parents of Madeleine McCann. They have something they have to live with every day as well – my tinnitus is not so important. I think of my old school friend who was stabbed in the back of the neck and is now a quadriplegic with two young sons to bring up – my tinnitus is not so important.
As a Christian I believe God gave me this challenge to mature me. Now I am a stronger, a more compassionate and a much happier person. It was up to me. I can either rise to the challenge or sit here feeling sorry for myself. I am so much more positive now – in every area of my life. Without tinnitus I would never have had the chance to grow in this way. I have found the books and CD’s of Joyce Meyer to be very helpful.
At this point I would say I am not aware of my tinnitus 90% of the time. My brain no longer sees it as a threatening noise and so filters it out. I have thrown away all my ear plugs, cotton wool and hats! Sometimes I don’t think about it at all. Sometimes I lie in bed and all I hear is silence. My brain is learning to readjust. You can do it too – if you choose to.
