Lots people who are happy and living ... - British Tinnitus ...

British Tinnitus Association

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Lots people who are happy and living with tinnitus (even if it's loud) aren't on forums

KJC13
KJC13
โ€ข26 Replies

I had T for 7 years which I was habituated to and I didn't post on forums saying "hey guys, it's okay. You can do this, I have." But I wish I had. My T has spiked and I find myself scrawling through forums trying to find people who live with it and are happy. Then I remembered, I already have lived with it and I was happy and I didn't tell people because sometimes the more I engage with online forums regarding T the more I notice it. I am finding it hard, last week was awful. However, I had a good weekend. I am having CBT soon and TRT and getting masking devices. I'm on the right path.

Just wanted to throw some positivity out there. Lots of people live with tinnitus and are happy ๐Ÿ˜Š

26 Replies
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What an uplifting post. Thank you....positivity is infectious ๐Ÿ‘. When you say you habituated previously did you not hear it (so to speak) or did you still hear it but not care about it.

Best wishes

Shell

KJC13
KJC13 in reply to Shellipops

In a room with noise I could usually only hear it if I focused on trying to hear it, so I couldn't hear it so to speak. In a silent room I could hear it and it didn't bother me at all, the flight or fight response had gone and I just didn't care about the sound anymore so I could switch off from it. I will get back to this with a bit of help ๐Ÿ˜Š

Michael8272
Michael8272 in reply to KJC13

Hi,great attitude, I have it six months now and had gotten used to it 2 months ago. Could only get it in a quiet room and now have a spike for last 10 days or so.its gotten my scared like at the start of my t.i go to a therapist once a week and it helps. Hopefully it will settle again.it does seem strange alot of people are getting spikes on here at the minute.

Thanks Michael ๐Ÿ‘

KJC13
KJC13 in reply to Michael8272

Same with me, it's scary when it spikes and you feel like you're right back to where you started but you'll make it through, as will I and in the mean time I will just try my best to stay positive and remember that tinnitus won't hurt or kill me and if I don't let it, it won't destroy my quality of life.

Shellipops
Shellipops in reply to KJC13

Brilliant, your minset is what I aspire to. Thanks again. Im leaving for my day at work with a pocketful of hope and Im sure others will to ๐ŸŒž

Curlew
Curlew in reply to Shellipops

If you look at my last post you will seeI now talk to myself ๐Ÿ˜‚๐Ÿ˜‚

NicBTA
NicBTAAdministrator

Thank you for such a positive post. I think it's very easy to be caught up with everyone's struggles - which are very real, and very debilitating - and yet at the same time, hard to remember - or want to think about - there's 6 million people in the UK living with tinnitus which doesn't have the same impact on their lives.

Nic

Yes I agree with you - when I was in the black hole nearly four years ago, success stories were the main thing that kept me going, that gave me hope. Today I have my life back - yes I still hear my noises although they are a lot quieter these days - and they no longer have the effect on me that they had at the beginning.

I wish you well - you sound a positive person - I`m sure you`ll stay on the right path and reach your goal in the end.

Lynne

Hidden
Hidden in reply to Lynne-H

Hi Lynne I am going through a bit of a struggle my tinnitus has been intrusive the last few days i like you have accustomed myself to living with tinnitus and most of the year it's been not noticeable my tinnitus fluctuates a lot from low to quite loud i don't get stressed or anxious i think the longer you have tinnitus you know how to manage it better i also had black days and i don't want to return to them glad to hear you are doing well. David X

Hi KJC13,

I began to suffer with tinnitus just a couple of months after Lynne, so we supported each other via the forum. As with Lynne, I was in the "black hole" and never believing that life would ever get back to "normal". The physical and mental pain of tinnitus - and the complete shock of acquiring it after a major operation - lasted for about 12 months. Gradually, slowly, with the help of a hospital audiologist, Mirtazapine medication to calm my anxiety, the BTA and this friendly and supportive forum, my life improved and my tinnitus quietened.

My T is a lot more quiet than it was, and not painful, but there are times when it spikes for various reasons. But, I now know that I can live my life to the full again, despite tinnitus. When we first have a 'fridge, the noise bothers us doesn't it? Then after a few weeks, or months, we don't notice it. That is the way I think about my tinnitus.

I keep my back copies of "Quiet" and re-read the success stories of real people when I am feeling a bit down. I joined only the one tinnitus forum, and that is the BTA one, which is supportive and helpful.

Angela xx

It is more than possible to live your full life with T even when it's constant and severe. It just takes time.

After I started to recover from the worst initial period I just used to keep asking myself things like 'Is meeting my friend more important than tinnitus'? Answer, yes๐Ÿ˜Š

Is spending time with my lovely little granddaughters more important than tinnitus '? Answer, yes๐Ÿ˜Š

Is experiencing life's simple things like the changing seasons after all were not on this planet for long, more important than tinnitus'? Answer yes๐Ÿ˜

This really seemed to put my tinnitus in perspective and I just think there are many people on this planet that have to live with all manner of terrible things, tinnitus being just one of them. That is life and being positive and having the support of others is crucial.

That being said I am finding my bad spike very difficult at the moment, but before Long I will move on and leave it behind me.

It is extremely important to be positive, but at the same time I do think there is a feeling that a person shouldn't talk too much about how they are struggling as this can be seen to maybe encourage spirals of depression, but it is a difficult condition and as long as it is in a proper context it is as important to acknowledge these feelings as valid as well.

This is a cruel condition, it takes a strong will to live and live happily with it, but the vast majority of people do just that.

It says a lot about the human spirit ๐Ÿ˜๐Ÿ˜๐Ÿ‘

Hidden
Hidden in reply to Curlew

Hi Curlew when my tinnitus is bad i have my little dog which i couldn't live without he makes my everyday i also tell myself it will come down again i do find reading the post's on here helpful and return to the forum to get support. David

Angela-H
Angela-H in reply to Hidden

Hi David, remember that your T WILL quieten again, thatโ€™s just the way of our T. You and I are both in a better place than when we met at the February 2017 BTA information day in Birmingham.

Treat yourself to a nice distracting activity!

Love

Angela xx

Hidden
Hidden in reply to Angela-H

Thanks Angela yes I know but having gone so long with my tinnitus low I always struggle with spikes I am going to the tinnitus talking day in Birmingham next week which you have to pay for so I hope to learn some more about tinnitus.

David

Angela-H
Angela-H in reply to Hidden

It looks to be an excellent day David - I am not going as my daughter is visiting and staying with me over that weekend.

I look forward to all the new ideas about tinnitus being talked about on this forum.

Best wishes

Angela xx

Lindsay6
Lindsay6 in reply to Curlew

Thank you for being ' balanced' , and sharing an ' integrated ' view. There is a tendency to see tinnitus and those of us who experience it in ' black and whites', ' quiet or not quiet times, ' spike or non / after spike' , ' depressed or positive ',' wallowing or being grateful'. Stereotypes and almost prejudices can be lurking if not careful. Everyone is different - some have similar experiences to others , but not everyone and this can make the latter feel isolated even within the tinnitus forum / ' community'. Not everyone can afford the treatments that could make a difference , or even the life experiences such as holidays or going out for an xmas treat ( or putting the heating on in the winter) . I have never had a leveling or a ' quietening' of my tinnitus , I am not anxious or depressed - just worn out by the energy it takes to keep being positive and to keep going. I am not a negative person and am chuffed others manage their tinnitus , to different degrees - but because I am not ' successful' in getting my tinnitus to reduce , I'd like to feel I can still be accepted ( and not admonished ) .That's why your post was so good - so balanced.

Gwynydd
Gwynydd in reply to Lindsay6

Your post was the most understanding and realistic I have read. I am new to this and having some success with managing my condition. I do not use the word positive but optimistic. I recognise that negativity is not good in all aspects of life but there are so many different scenarios to consider in managing tinnitus and one of them is the factor of being unique and your own personal circumstances. We must all be allowed to feel the way we do and who knows the future may find a cure. Just being optimistic.

Scarlett2013
Scarlett2013 in reply to Curlew

Hi Curlew,

My tinnitus is spiking at the moment, and Iโ€™m finding it very hard to convince my self that I will have good days again. Have had it for 14 months now and I try to remind myself of all the good things and times I have enjoyed in the last year. I found your post after trying to find some positive threads , and would like to thank you for reminding me that life can go on, and it is possible to have good times again . I hope you are well at the moment.

Curlew
Curlew in reply to Scarlett2013

Hi S, My T is horrendous at the moment it has been for a while as Iโ€™ve had yet another chest infection. This is how my T started, constant chest infections and antibiotics.

The Dr gave me steroids and antibiotics yet again 3 weeks ago and as that is how my T started I absolutely darent take them and just put them in the cupboard. I just became more poorly though and in the end knew I just had to take them. I am very pleased to say I donโ€™t really think they have caused my already horrendous symptoms to worsen so I am very relieved at that.๐Ÿ˜Š

I have had T for 2 years this May and it has been a long difficult and at times debilitating journey.

Recently I feel something strange has happened though! Although after my initial very frightening stages I in the main have just got on with it, we have no choice, BUT recently I have really started to feel different about it.

I hear it screaming over the top of everything 24/7, but I really really donโ€™t seem to care. The way I feel about it it really seems to have changed. As I say itโ€™s absolutely horrendous at the moment but now my natural attitude is well so what Iโ€™ll hav3 a calmer day before long and then another etc.

I do just seem to have learnt to wear it like an old jumper๐Ÿ˜‚๐Ÿ˜‚

I hope you get to this stage and Iโ€™m sure you will.

It just takes lots of time !

Take care and let me know how you get on.

Xx

Curlew
Curlew in reply to Curlew

Hello S,

Hope youโ€™ve been having lots of fun frolics and Easter eggs recently ๐Ÿ˜‚ I have ๐Ÿ‘

Shellipops
Shellipops in reply to Curlew

Hiya,

Yes 4 eggs so far!!. Glad though you have managed to kick it into touch. I always get a wee boost when folks get the better of it...I have, well some days, but in the main its just there, mildly annoying but just there, in many ways it reminds me of my MIL ๐Ÿ˜‰

Take care S x

Curlew
Curlew in reply to Shellipops

๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

I love your comments about your little dog CB.

I have always had a dog, couldn't be without one. There is no doubt at all the comfort and companionship they give. I am busy most of the time with family an elderly father and grandchildren but my dog is still a very important part of my daily life. The house just doesn't feel right if for any reason she's not here.

They can be worth their weight in gold for many people๐Ÿ˜๐Ÿ‘

Yes..I agree. I also live with a painful condition called interstitial cystitis which I manage well. If I've ever looked on a chat room or forum, it always triggers my symptoms off, so of course I no longer visit them. I am at the beginning of living with T but I'm completely hopeful it will soon no longer bother me the symptoms may even go away. X

So true. When I got my tinnitus recently I was surprised to find that a lot of people around me also have tinnitus but they are not really bothered by it and lead completely normal lives. They say that sometimes it flares up but they have learned not to let it affect their mood. I am hoping to reach that frame of minds soon as well

So true. We desperately need positive stories on here. More so from the people who have super loud Tinnitus just to show people that there is hope with coping with it at whatever level.

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