Hi everyone,
I've been putting this off because I wanted to wait until I was fully habituated, whatever that means, before posting. Also because this forum represents some really desperate times for me, that I wanted to leave behind me. The third reason is that tinnitus is such a non-issue for me now that I almost feel like I imagined the whole drama. It's hard to remember how bad things were and how close I came to the edge.
However, I've decided to post today because I'm going through some unrelated challenges (a chronic pain condition) and I want to reflect on how I've come through bad times before. Tinnitus really taught me how resilient we are, and how terrible times can turn to good ones, even when it seems impossible.
In the middle of the bad times I PROMISED myself and everyone else that I would come back one day and tell my positive story, so here it is.
I'm over three years in and I can truly say that tinnitus does not distress me anymore. Sometimes it pops up and irritates me, and I play rain sounds on my phone to distract myself. I also play rain sounds on a sound machine continuously in my bedroom. However that is mainly out of habit and when I travel I don't bother bringing the sound machine. It is no longer a major consideration in my life.
Yesterday I was lounging on the sofa reading and playing on my laptop in total silence, and the tinnitus was like a faint static buzz. Once upon a time it would have brought me to tears.
Tinnitus volume is a tricky thing to pin down, but I will say that I don't think mine has exactly quieted with time. It's more that my brain doesn't focus in on it anymore and it fades into the background. Back when things were bad I could hear it whilst driving on the motorway with music on and sometimes with the windows open. It's high pitched and it could cut through just about anything.
Now something simple like a computer fan or a fridge humming or someone talking is enough to distract me from it. Every now and then I'll have a spike where it intrudes a lot. I'll put on a load of white noise and some music and just keep on with my life, and eventually it passes. I am confident now that things will get easier with each year that passes.
I also want to reassure people who have been in this for a while that it can take a long time to adjust, and just because you are a few years in doesn't mean there is no hope for you.
Months 5-8 were the worst for me. I had to take time off work and I was struggling to look after myself. I didn't want to be here anymore. Weirdly, I think CBT is what saved me. The therapist convinced me, over weeks of arguing, that it was up to me to make the choice to stop listening to the sound. After that, I got tough with myself and every time I walked into a new environment, instead of looking for the sound I would flick myself hard on the face with my fingernails and say "stop". The "Back to Silence" thread by @I who love music really helped me with this idea of redirecting my focus. On bad days I would go in the kitchen, put on the radio and as many appliances as possible, and cook up a storm. The activity and all the noise were enough to keep the panic at bay.
For about the first year or so I was pretty much moving all the time. I didn't want to give myself time to panic or think or listen for the noise. I was always running, and yes it was exhausting but I promise you, it didn't last forever. Nowadays I spend a lot of time in bed thanks to my other condition, and the tinnitus is barely an issue. I never ever ever ever thought this would be possible for me, but it happened.
At the end of year one I was anxious and strung out and exhausted, but I felt like I had some measure of control over everything, and I was starting to enjoy aspects of my life again.
During year two the tinnitus became less and less of an issue for me. I still had spikes where I was quite distressed, but I got better at dealing with them and I trusted them to pass. My last bad spike was a year ago now, at the end of year two. I really felt like I was back at square one, but it did pass, and I feel like those days are behind me now.
Just remember that recovery is extremely non linear, and you will have days where you feel like you've made no progress at all, but I promise you, year on year things will get better.
It's amazing to me that a few years ago I wanted to get cancer and die, and now I have the same tinnitus but I barely think about it. We are so much stronger and more adaptable than we imagine.
I want to thank @I who love music aka Terry for telling his story and for always being here with encouragement and @billie48 for telling his incredible story, which I read over and over and over on bad days, as well as all the other people who pep talked me and offered support when I truly felt I was losing my mind.
To the people who are new to this and still struggling, I want to say I see you and I know how much it sucks, but please understand that one day this will just be a bad memory. The brain is an incredible thing, and you can and will adjust. It just takes lots and lots of time and patience.
In terms of what I actually did, well I tried everything but I think the keys for me were:
White noise/background noise. In the first year I found all the white noise type things so annoying that I thought just listening to the tinnitus would be preferable. This was a mistake. With time and patience and trying different things I finally got used to having background noise on all the time. I also had to let go of the idea that I would be able to find a noise that could completely cover the tinnitus. On bad days it can find its way through anything, so really your best bet is to just try and dilute the sound and provide something else for your brain to focus on.
Distraction and refocusing. I'm honestly grateful to tinnitus for forcing me to take on a bunch of new hobbies and social activities. Even when all I wanted to do was lie in bed and cry about tinnitus, I would force myself to do activities, and slowly slowly the interest and pleasure in other things came back.
Understanding that tinnitus is a disorder of attention, and ultimately you are the one in control. This is so hard to accept at first, but it's so so important. The more anxious attention you give to the tinnitus, the worse it will be. That's just a fact. You can make it the main focus of your life, or you can fill your life with other things and allow tinnitus to be an annoying but small nuisance in the background.
Time. Can't emphasize this enough. This shit takes time. You're essentially retraining your brain, and it's not something you can just do. It can take months and years of slowly adjusting to this new normal. But you will get there. I promise!
Love and good thoughts to everyone here.
Lizzy
Xxx
I've been putting this off because I wanted to wait until I was fully habituated, whatever that means, before posting. Also because this forum represents some really desperate times for me, that I wanted to leave behind me. The third reason is that tinnitus is such a non-issue for me now that I almost feel like I imagined the whole drama. It's hard to remember how bad things were and how close I came to the edge.
However, I've decided to post today because I'm going through some unrelated challenges (a chronic pain condition) and I want to reflect on how I've come through bad times before. Tinnitus really taught me how resilient we are, and how terrible times can turn to good ones, even when it seems impossible.
In the middle of the bad times I PROMISED myself and everyone else that I would come back one day and tell my positive story, so here it is.
I'm over three years in and I can truly say that tinnitus does not distress me anymore. Sometimes it pops up and irritates me, and I play rain sounds on my phone to distract myself. I also play rain sounds on a sound machine continuously in my bedroom. However that is mainly out of habit and when I travel I don't bother bringing the sound machine. It is no longer a major consideration in my life.
Yesterday I was lounging on the sofa reading and playing on my laptop in total silence, and the tinnitus was like a faint static buzz. Once upon a time it would have brought me to tears.
Tinnitus volume is a tricky thing to pin down, but I will say that I don't think mine has exactly quieted with time. It's more that my brain doesn't focus in on it anymore and it fades into the background. Back when things were bad I could hear it whilst driving on the motorway with music on and sometimes with the windows open. It's high pitched and it could cut through just about anything.
Now something simple like a computer fan or a fridge humming or someone talking is enough to distract me from it. Every now and then I'll have a spike where it intrudes a lot. I'll put on a load of white noise and some music and just keep on with my life, and eventually it passes. I am confident now that things will get easier with each year that passes.
I also want to reassure people who have been in this for a while that it can take a long time to adjust, and just because you are a few years in doesn't mean there is no hope for you.
Months 5-8 were the worst for me. I had to take time off work and I was struggling to look after myself. I didn't want to be here anymore. Weirdly, I think CBT is what saved me. The therapist convinced me, over weeks of arguing, that it was up to me to make the choice to stop listening to the sound. After that, I got tough with myself and every time I walked into a new environment, instead of looking for the sound I would flick myself hard on the face with my fingernails and say "stop". The "Back to Silence" thread by @I who love music really helped me with this idea of redirecting my focus. On bad days I would go in the kitchen, put on the radio and as many appliances as possible, and cook up a storm. The activity and all the noise were enough to keep the panic at bay.
For about the first year or so I was pretty much moving all the time. I didn't want to give myself time to panic or think or listen for the noise. I was always running, and yes it was exhausting but I promise you, it didn't last forever. Nowadays I spend a lot of time in bed thanks to my other condition, and the tinnitus is barely an issue. I never ever ever ever thought this would be possible for me, but it happened.
At the end of year one I was anxious and strung out and exhausted, but I felt like I had some measure of control over everything, and I was starting to enjoy aspects of my life again.
During year two the tinnitus became less and less of an issue for me. I still had spikes where I was quite distressed, but I got better at dealing with them and I trusted them to pass. My last bad spike was a year ago now, at the end of year two. I really felt like I was back at square one, but it did pass, and I feel like those days are behind me now.
Just remember that recovery is extremely non linear, and you will have days where you feel like you've made no progress at all, but I promise you, year on year things will get better.
It's amazing to me that a few years ago I wanted to get cancer and die, and now I have the same tinnitus but I barely think about it. We are so much stronger and more adaptable than we imagine.
I want to thank @I who love music aka Terry for telling his story and for always being here with encouragement and @billie48 for telling his incredible story, which I read over and over and over on bad days, as well as all the other people who pep talked me and offered support when I truly felt I was losing my mind.
To the people who are new to this and still struggling, I want to say I see you and I know how much it sucks, but please understand that one day this will just be a bad memory. The brain is an incredible thing, and you can and will adjust. It just takes lots and lots of time and patience.
In terms of what I actually did, well I tried everything but I think the keys for me were:
White noise/background noise. In the first year I found all the white noise type things so annoying that I thought just listening to the tinnitus would be preferable. This was a mistake. With time and patience and trying different things I finally got used to having background noise on all the time. I also had to let go of the idea that I would be able to find a noise that could completely cover the tinnitus. On bad days it can find its way through anything, so really your best bet is to just try and dilute the sound and provide something else for your brain to focus on.
Distraction and refocusing. I'm honestly grateful to tinnitus for forcing me to take on a bunch of new hobbies and social activities. Even when all I wanted to do was lie in bed and cry about tinnitus, I would force myself to do activities, and slowly slowly the interest and pleasure in other things came back.
Understanding that tinnitus is a disorder of attention, and ultimately you are the one in control. This is so hard to accept at first, but it's so so important. The more anxious attention you give to the tinnitus, the worse it will be. That's just a fact. You can make it the main focus of your life, or you can fill your life with other things and allow tinnitus to be an annoying but small nuisance in the background.
Time. Can't emphasize this enough. This shit takes time. You're essentially retraining your brain, and it's not something you can just do. It can take months and years of slowly adjusting to this new normal. But you will get there. I promise!
Love and good thoughts to everyone here.
Lizzy
Xxx
Member
