Bright Lights and Tunnels. And a Journey Into Myself...

I first posted this a couple of years ago, and thought it would be better suited to the Success stories part of this forum, hence this repost. If just one person can take something from it, and feel a little better, then I'll feel very pleased about that.

Hello everyone, for those of you who don't mind a long post, and I mean LONG!, then please read on. I write below about what I think about getting back my life involves, and what it means to me. Hope some of you can identify with some of it and take something from it.I realise people have all different levels of tinnitus/perceived loudness of it/varying reactions to it and so forth. And so what I write here will probably not apply to some; probably the complete opposite. That said, I wish everyone here all the very best, and I hope you can all find comfort soon.

In the early days I found it tough, like most of us do. I promise you it will and can improve. Allow yourself time to mend, and allow for good and bad times. I felt like I was clinging to the raft in a stormy sea, but I never thought of letting go. I remember walking around a busy shopping centre where I live once, and people were everywhere. In amongst all that, there was me, alone with my thoughts, my loneliness and despair. Tears were streaming down my face, I felt unbearably alone, then I reached a point when I had to ask myself: "This can't be it can it? Surely this can't be it? This isn't how it's supposed to be." Am I really here? After that I never got that low again. Because I was ashamed I had felt that way over a noise in my head.

Well most of you will probably think or say this to yourselves at one point. I have read so much about this habituation thing; this Holy Grail for us tinnitus people. Why isn't it happening for me? Am I going to be one of the unlucky ones who doesn't habituate? Everyone else is coming on in leaps and bounds except typically yours truly. Holy grail? More like a poisoned chalice! Habituation is just a word, and when favourably stated can mean "I still hear my tinnitus, but I really don't give a shit about it anymore". That statement was always my aim and a mantra of sorts. Simple as that. Make it yours.

That is indeed a very common way to think about this, and it is the way forward I think. Tinnitus can take you to places mentally you never thought possible, just like those dreams you are not supposed to remember, or when you are in a secluded place and you catch someone in the distance out of the corner of your eye. You look again and they are not there, if they were ever really there at all? Then right at a certain point you will delve deep into your subconsciousness, and remember something you wished you hadn't. But like all things, and tinnitus included, it will become a distant memory for a great deal of you. You'll cease looking for 'cures', you'll have no need for forums, and you will look back and think to yourself. " why did I continually beat myself up about a damned noise?

Look at what you are experiencing now as just a phase in your life that you are going through. A trial of life if you will. When you emerge from the other side of this, you will deserve a thorough pat on the back, and you will be far more mentally resilient as a result. Normal day to day quibbles will be shrugged off easily without giving them a second thought. Tinnitus, when successfully managed, makes you a lot tougher I think. Maybe you are thinking the complete opposite, but you will come to realise the validity in this statement after a while.
Ask yourself this:
1: Is my reaction to tinnitus worse than the sound itself?
2: Am I going to let a harmless biological noise which I have wrongly made my enemy, going to dictate to me?
3: Why me?

Strive to answer the above questions like so:
1: Yes it is, but I can and will be able to change that by the way I think about it.I must try to remove any emotional significance to the noise, so it, in time becomes emotionally neutral.
2: I may do at first, and at certain times, but ultimately NO !!! I am better than this. I will not always be its victim.
3: Why not me? Shit happens,so time to act and take steps toward the mental healing process.It won't kill me, it doesn't hurt me. It's a sound. The more I deny it the more it will want me to listen to it. And most of the time I create the monster it is because of my misguided fear of it. We do it to ourselves. We find the positive way to react to it in the end, it was always there and we just had to find out about ourselves a little more.

Contrary to what a lot of people think, tinnitus does get better, and so do you. I obviously cannot speak for everyone, as there may be physical/medical reasons as to why this may not be so. But as long as you don't start standing by noisy industrial machinery and standing in front of the monitors at concerts with no ear plugs in etc... get the picture? In the early days I never used to think things would improve, but after a while I soon found out this to be quite the opposite.
People mostly just need a virtual hug, and some sympathy from their fellow kinfolk when their T is playing up. We are in this together; we'll get through it together.

You can quite easily go away thinking you are stuck with this for life, NO YOU ARE NOT... Please pick and chose what you read if you are of a fragile disposition. Trouble is, like most things, you have to sometimes sift through the bad to reach the good...
Some people indirectly make no attempt whatsoever to get better and make things easier for themselves. Living your life exactly the same as before you had tinnitus will not work. They then blame other people or criteria because of it. Take sleep for example: You lay down to go to sleep for the night, and twenty minutes later you are getting into a state because you are not asleep. "Oh it must be this wretched tinnitus then. I'll blame that". Then in creeps the anxiety, and perceived volume, compounding things even more and then getting worked up about it. Now maybe that person might not even be tired in the first place! That is how a negative seed is sown. Tinnitus, irrespective of perceived volume itself is not enough to keep you awake; it's your thoughts about it thus amplifying your reaction to it. Thoughts can be changed, which is part of habituation. So replace that thought with " well I can't be that tired, maybe I should read or listen to the radio for a bit, or get rid of some pent up sexual energy. You fill in the blanks!". So no need to always make it about the tinnitus. Awareness is the amplifier!

I am not in any way decrying tinnitus, as it has my utmost respect. Because I know it can come and kick my wretched arse when I am not expecting it. I don't fear it anymore though, and when I stopped fearing it, things changed. All the periods of deep worry, anxiety, spike frequency and depressive episodes were all borne out of fear and the questions asked by myself continually. They always turned out to be baseless, during a time when the constant need for reassurance was high on the agenda.

But when you to come to learn that tinnitus is not your enemy, you will set out in a more favourable direction.Your brain hasn't turned up the volume and made you perpetually aware of tinnitus because it doesn't like you. That I am sorry to say is an indirect and involuntary product of your own doing. I don't mean that to sound harsh. But only YOU make yourself feel the way you do about it. Which in turn stems from your personal interpretation of what tinnitus means to you, and how you deal with it. And with many of us, thinking that way is not any of our faults. A bad seed is possibly sown shortly after your initial visit to your GP/ENT, when they say those magic words ..."I'm sorry there's nothing we can do, you'll have to learn to live with it". Sound familiar? I remember walking away after hearing that, and I felt that my whole Universe had imploded.

The strange thing is though, albeit not assimilated at the time, that it is 100% a never more truer statement. Once you learn to live with it, you pay it about as much attention to it as the toes on your feet. Tinnitus does what it wants to whether we like it or not. So why react so strongly? Yes it stinks I know, but the reaction and the accompanying worry are a waste of your resources. For instance:You have a bad day, you muddle through it feeling like absolute shit. Well what exactly is new? You have had bad days before, came through them, and went on to have good days. It's all part of the unpredictable tinnitus behaviour patterns. Expect it, resist it and ignore it the best you can. Look upon a bad period of tinnitus as a storm, and all storms pass.

To actually define habituation is not something I can do, as I cannot speak for others. As it can influence a wide array of outcomes, and mean different things to different people. But to me it means a peak and trough type journey, a weathering of storms and getting to know my strengths and weaknesses. Not fearing silence anymore. Not avoiding everyday unavoidable noises, wrapping myself in cotton wool etc. Being able to close my eyes and not be bothered about tinnitus because it is my friend now, and I like my friends. Not avoiding doing things I liked doing/eating because I thought it would make my tinnitus worse (as avoidance is also tinnitus related). And realising I am still the person I always was before tinnitus tried to break me. I'll emphasise the word 'tried'. As it tried and failed.

Habituation is not supposed to be a race, as people can become quite disheartened if they haven't attained a certain mindset within a given amount of time, regarding their thoughts and management of their tinnitus. It is a journey, a very personal one in which we all travel independently. But once started we never ever give up and throw the towel in. We have to learn to ride out the storms sometimes, and through that know that there will be times we are surfing the waves when things are good.

If you read on forums that people are doing well, and turning a corner with their tinnitus, be happy for them. Don't say to yourself " you lucky bastard" and feel a resentment toward them. They have had a tough time getting to that point. And take heart that you will be writing down your own success story in due course.

Now... how you navigate these obstacles will define you ultimately, as you get mentally stronger. Try to build a picture or a visualisation of yourself in the not too distant future, of being surrounded by everyone and everything you love in your life. In a favourite place with a massive smile on your face, because you'll then know that everything is right with the World. Your path is laid out in front of you to reach that person, to get to that place with those people, because that person is not a stranger anymore, it's just someone who lost their way a little. That person is you. It's not unattainable by any means. Just when you think you are as far away as you can possibly be, you will have probably taken a step closer ! Then all of a sudden, a euphoric switch clicks on in you, and you'll know you are on your way having just turned a corner!

I tackle tinnitus and will continue to do so with a mixture of the physical and spiritual means. As people who know me say I am quite profound and analytical, and prone to dwell on things too much. But never underestimate the power of your spiritual side. As for me it became another arrow to a bow I never thought I had. That alone as helped me personally. And as I mentioned before, it is a journey, we are all different but as long as we get all there in the end, then that's all that really matters isn't it?

Thanks for getting this far...

 

How long did it take you to learn to live with it?

I liked your post a lot, except for two sentences. I apologize in advance - I just had to address those two statements that I believe might encourage reckless behaviour and consequently get someone hurt.

If you take care of your ears and do the opposite of the statements in bolded text above for the first three years after the onset and you experience no improvement, then perhaps you could try to follow the advice above. Keep in mind that its not like you have nothing to lose. Even if you do those things and initially nothing happens, it might be just matter of time - and eventually it will catch up to you and you will have to endure louder tinnitus.

But it is also true that some (many?) people take those risks and nothing happens.

 

Thank you for this ! ❤️❤️

 

How are you doing these days Bill? I know you’re reticent to admit any improvement but I could really use some positivity right about now.

 

I'm doing much better compared to how I was doing when I made the post below
https://www.tinnitustalk.com/thread...-make-you-wail-and-weep-uncontrollably.21797/
LOL

If you had experienced any fading compared to how you had been feeling six months ago, your tinnitus ought to continue to fade (provided you don't hurt your ears again)... Have you seen any improvement?

 

Hello Bill, thanks for reading. I'll answer what you highlighted the best I can.

Anthony13 said: ↑
Once you learn to live with it

It certainly wasn't an overnight sensation, but I would say I started to feel a bit better and in more control of things after about 3 years. It could have been sooner than that I think. But I entered a period of depression after my dog died, which was about 6 months after the onset. Then a split with my girlfriend of the time. So these events had a profound effect on me, and without doubt slowed up my ability to come to terms with my tinnitus sooner.

Yes I live with it. I get periods where everything goes back to day one, and periods where it just isn't a problem at all. When it's bad I know it will be good again, and vice versa. I know for sure that it feeds off of my emotional states.

Anthony13 said: ↑

Not avoiding everyday unavoidable noises, wrapping myself in cotton wool etc. Being able to close my eyes and not be bothered about tinnitus because it is my friend now, and I like my friends. Not avoiding doing things I liked doing/eating because I thought it would make my tinnitus worse

In the beginning I did start to behave like I was in a cocoon. I stopped socialising, cut out various foods and drinks etc. This achieved absolutely nothing over time. As what may work for one, doesn't necessarily follow it will work for another. I decided I had to take control and not be a victim after some time had passed.
Of course, it goes without saying that people need to protect themselves. And my intention with my post, was just telling my account of how I was affected by it, and how I dealt with it.

I liked your post a lot, except for two sentences. I apologize in advance - I just had to address those two statements that I believe might encourage reckless behaviour and consequently get someone hurt.
If you take care of your ears and do the opposite of the statements in bolded text above for the first three years after the onset and you experience no improvement, then perhaps you could try to follow the advice above. Keep in mind that its not like you have nothing to lose. Even if you do those things and initially nothing happens, it might be just matter of time - and eventually it will catch up to you and you will have to endure louder tinnitus.
But it is also true that some (many?) people take those risks and nothing happens.[/QUOTE]

Thanks for your response Bill, glad you liked it and no need to apologize.

 

Mine is really up and down. If I don’t sleep well (for some reason, on the same levels of meds) my tinnitus will wake me up at 8:30 (~6.5 hours of bad sleep) incredibly intrusive. Today was not one of those days, thank god. On intrusive days I think my tinnitus is actually severe, because my 20kHz tone picks up one or two notches which just sends anxiety into the stratosphere and I can’t focus on anything. On good days I’d say I’m on the lower end of moderate—4/10 16kHz, 3/10 20ish kHz, 3/10 machine whirring dynamic sound. The dynamic tone never waivers but if I was stripped of the two purer tones I’d consider myself effectively cured. I’m 8-9 months in, which I realize is technically still relatively early.

So you’d say you’re more habituating rather than experiencing volume decrements?

 

Many people, like OP, experience habituation around the 3-year mark. I am under the impression that most people actually experience a decrease in their volume.

 

Such a beautiful post. Thank you so so much. I am in a better place than I was a year ago and I've actually stayed away from this forum for two whole months because I was doing so well. Having a massive wobble now (I'm in the UK and the news here is v depressing - lockdown for umpteen more weeks or months) so I am back. So it's great to hear such encouraging words and to remind myself that I'm still only near the beginning of the journey and it can still get better.

Wow. 3 years eh? That's helpful to know. I'm at 1.5 years and getting discouraged. Thought I should be habituating by now. Knowing that it can take 3 years gives me so much encouragement. Thanks. I am doing better in any case. Less depressed, less anxious, sleep is better, concentration is better. But I don't seem to be habituating at all yet and so I still have the ability to plunge back into despair (as occasionally happens) if I fail to keep myself super distracted and happy.

 

Thank you @Anthony13 I will read your message over and over. I am 14 months with it. I'm ina similar position to @Hotspur2931 thanks for your message too..i have not habituated yet but try not to beat myself up it takes time and working on my emotional reaction to tinnitus.

 

Great post. Thanks for this. I’ve spoken to friend who has habituated - I asked “so there’s a light at the end of the tunnel?” He responded with- “not a light, as much as, the tunnel just ends”.
I’ve just had a couple positive days spent outside. But now I head back indoors to face to music...