Don't give up!

[Colleen_The_BTA]

I was sent this by a friend today and wanted to share these words with you all. You have a purpose. Don't give up....don't give into your tinnitus....you are alive at this very time for a very good reason. Keep going, keep engaged in life, fill your time with the things you love and enjoy doing and keep hope for better days to come. Stay blessed, Colleen

[Ingrid-p]

Thank you Colleen.

I’ve been trying to stay away from the forum as it makes me even more conscious of my t.

This message has made feel like I can get through this bad stage I’m going through. After 38 years I know it can be lived with to a point of it being heard all the time, but the brain putting no focus on it. Mine is horrible at the moment, mostly due to the fact that my audiologist turned my aids down instead of up and once the brain latches on to the noise again, it seems to get worse and worse. In reality I’m sure mine’s as it normally is, but I’m definitely tuned into it every waking hour. I just thank God that I have no trouble sleeping.

I read some of the posts on here and I can’t believe that in this day and age nothing more can be done to help us who suffer, and I mean suffer, daily with this. Is there any research being done? I’ve heard of Neuromod, but I believe that a couple of posters on here have tried it with no luck. Last year there were trials using a drug for epilepsy, but I’ve heard nothing of this since. Surely there must be positive research being done somewhere? I live in hope that one day, I’m 61 now, I’ll hear silence.

It would be nice if the BTA could give updates on trials etc just so we know that there are people out there fighting our cause.

Today is bad so I’m unable to go to my works Christmas party, but hopefully I’ll be in a better place soon.

Ingrid xx

[Colleen_The_BTA in reply to Ingrid-p]

My pleasure It's important to hold one another up on bad days. The BTA do fund various research projects and you can read all about it on our website: tinnitus.org.uk/Pages/Categ.... How about wearing some earplugs to your Christmas party, that way you can still join in and have the noise around you brough down. Our vision is that one day no one will have to go through this and that a cure will be found. Take care,Colleen

[Ingrid-p in reply to Colleen_The_BTA]

Hi

Ear plugs aren't an option as I wear hearing aids and without them my t is even worse 😭

Missing it this year, but I'm sure I'll be there next year 🎅🌲🤶

Ingrid xx

[Verma54 in reply to Ingrid-p]

Me too....too noisy for me

[Ingrid-p in reply to Verma54]

People just don’t understand the implications of tinnitus, hate noise and hate silence 😭

[Verma54 in reply to Ingrid-p]

They don’t Ingrid and lifestyle changes we have to make driven by fear and avoidance as well as other reasons. My life has changed a lot over last year but I still keep going however I avoid noisy surroundings- cinemas, parties, noisy restaurants etc. Don’t let it take over u and become a slave to T 🌷

[Ingrid-p in reply to Verma54]

Hi I went on the BTA chat line the other day. I was very distressed and they assured me that if you’ve habituated before then it can be done again. I’ve habituated about 8 times now in my 38 year relationship with t, still hearing the noise but not letting it bother me. I long to get back to that. It’s very strange tho as I don’t notice it happening, it just does! And then when I hear my noises I don’t give them another thought.

We’ll get there.

Take care

Ingrid xx

[ROMEROS in reply to Ingrid-p]

Hi Ingrid, I missed work party last night for the same reason.

[Ingrid-p in reply to ROMEROS]

Hi, I’m in work later and I’ll have to sit and listen to what a great time they all had. Feeling sorry for myself at the moment, but I’ll get through this phase. Hubby’s got loud t as well and I asked him last night why it doesn’t bother him and he said he’s not going to spend the rest of his life worrying about something he can’t change. Great attitude, that’s what I’m normally like, but every now and then it just gets me in its grip and it’s very hard to get back to feeling ok with it.

[Ruud1boy in reply to Ingrid-p]

No works Xmas party for me either - loud music / noise and booze are both catnip for my T, so I have to stay away.

But….we have to try and live our lives - Huddersfield v Leeds tomorrow, so I'll be in the pub early

[Ingrid-p in reply to Ruud1boy]

Enjoy the football. There’s no way I’m giving up my wine tho. I’ve never found alcohol makes any difference to my t 😁

[Verma54 in reply to Ingrid-p]

Like you I couldn’t go to my works Xmas party. I attended my sons Xmas carol and had to stay near the back ...even then when noise was too loud I walked out...it’s tragic but this is reality sadly 😞

[Ingrid-p in reply to Verma54]

It’s awful isn’t it, the way it controls our lives. My friend said the other day “oh my sisters got that she only hears it when there’s complete silence” wish that was the case for me. Thank God for my hearing aids as they do bring the volume down but it’s still there day in day out 😭

There’s got to be a cure somewhere, I guess the drug companies don’t think it’s worth investing in us. There’s billions going into cancer charities, but how much goes into t research each year? All we’re told is keep busy, ignore it etc etc etc. Seriously hard to do unless we manage the Holy Grail of habituation.

Rant over, back to keeping busy 😡

[Verma54 in reply to Ingrid-p]

It’s good to rant and a week or go or so I had some reassuring advise on here ...it made a difference ...like you I have habituated for many many years but sadly since a stressful event Oct 2018 it’s been hard ...this time it took over and hit Anxiety and Depression ...I have had nearly 12 months of CBT and other sessions ...getting some control but again just had a little setback ...I can empathise with u as we cope with T in our ways and I can assure you sharing experience does help and is part of therapy ...this is a great web site and whilst there’s no cure a problem shared is a problem halved...

[Verma54 in reply to Verma54]

Also I think the cure is in our minds and when our brain accepts the sounds and ignores them we are fine...keeping busy and positive helps but also just trying hard to get on with things ...it’s easy to write but it seriously is the only way ...avoidance doesn’t stop anxiety ..feel the fear and do it!!!

[Ingrid-p in reply to Verma54]

Very true, even when I've habituated I still hear the noises, but don't hear them if you know what I mean? The brain is a very powerful thing 😁

[Verma54 in reply to Ingrid-p]

Exactly ! Like now I hear a low noise hum and when am busy it blends away...it’s mind that screws us...I have had so much CBT to change my mindset and the biggest thing that helps is “talking therapy” to get rid of those rumination thoughts ..write them out or talk them and I can assure you over time it makes a difference ...also fact you have habituated means it will get a back seat ...you are the Master not Mr.T!!☺️

[Ingrid-p in reply to Verma54]

Thank you, positive words 😊

[Verma54 in reply to Ingrid-p]

Yes and gratitude is an important trait...I like giving and if I can help some one with some advise then that for me is positive karma ...🙏🏾 Ps i do yoga 3 times a week and that helps as well..isn’t a cure but helps as it focuses the mind...and also keeps my old bones moving 😀😀

[jonathan_m]

Nice message thanks for posting. The 'invisible' nature (to others) of our condition tends to push us to be more insular in our behaviour. Forums like this offer some understanding at least.

[Ingrid-p in reply to jonathan_m]

Very true, but the forum can have a negative effect in the process of habituation. My hearing therapist used to say (she’s retired now, had t from a child) stay away from Mr Google and forums. There’s lots of us really struggling and it’s very distressing reading some posts. There is life after t, but we have to get to that stage. Must admit I’m getting sick of keep habituating and then falling back into the trap of listening to it, it getting louder, me getting more depressed. Vicious circle.

Oh well, best keep busy, that’s the only way for now 😡

[rocketmantom66 in reply to Ingrid-p]

Stay away from Dr Google and forums ! Absolutely! Live life !

[emily62]

Beautiful, when I feel dispair for whatever reason I will remember these words

Thank you

[Keoni]

Hi, Colleen,

Thanks for these positive words. A few weeks ago I experienced an unavoidable stressful, anxious time which made my T ramp up to its loudest level yet but with no sign of it abating. Although I'm struggling at the moment, I'm determined not to give in.

Respectfully submitted,

Keoni

[rocketmantom66]

Brilliant!

[Artee]

Thanks Colleen, nice message, I haven't given up. Getting used to my tinnitus and concentrating on the nicer things in life. Thinking of everything I like or would welcome in my life and I usually drop off in the process. Bed time had turned into a nightmare with sleeping pills and sound box ,they both helped but find I'm getting by without them now. Loadsaluck.

[rocketmantom66 in reply to Artee]

I'm new to the process. And it's wonderful to hear such positivity!

[Colleen_The_BTA in reply to rocketmantom66]

It's positivity that keeps us all going. Taking care of ourselves and each other is an important part of life

[Ingrid-p in reply to Colleen_The_BTA]

Definitely, but it can be so hard sometimes with this noise day in day out.

Hopefully there’ll be positive research news soon.

Why is there not more media coverage? Surely we need to bring this awful affliction to the forefront of researchers minds. I’m sick of it ruling my life at the minute.

Rant for the day 😂

[Colleen_The_BTA in reply to Ingrid-p]

Yes, more media coverage would be great. There is lots of research happening and you can read about current research on our website tinnitus.org.uk. I will be working on a television advert for our helpline services in the new year, so I'm hoping that will draw some media attention.

Keep fighting the good fight, Colleen

[Ingrid-p in reply to Colleen_The_BTA]

Also I had an email today from neuromod/lenire announcing the launch of their device in Germany. What does the BTA know about this?