‘Tinnitus Constant — Coping Variable’

Since the morning when my severe tinnitus started, in the summer of 2014, it has been loud, constant and unrelenting.
It has never once abated or given me an easy day, or even one easy ‘lousy’ minute.
Some of you will be the same - I know that.

There is nothing incredibly interesting to tell you about that except that my tinnitus is constant, but my coping ability is variable.

From its very onset I knew that I was ‘stuck with it.’
In the certain knowledge that there was no cure, no meds, no therapy, no celestial intervention that could make ‘two penneth of sod-all difference,’ I decided that all I had was my own ingenuity
- which turned out to be a pretty poor resource.

As soon as I get out of bed I jump into a warm bath to do some meditation, where I obviously hear my ‘hiss’ but without actively listening to it.
A kind of ‘passive acceptance.’
So I practice hearing it - and relaxing deeply at the same time.
It seems to set me up for a slightly better day.

As the day wears on I am never without noise, except strangely enough, the variability factor is this
- at different times:
I hate it,
can tolerate it,
don’t care about it,
ignore it,
dislike it,
want to scream,
just let it be there,
despise it,
am not really bothered by it.

Is that weird?
Does this scenario ring bells (Oops - sorry)
for any of you guys? (gals included of course.)
Dave x
Jazzer

 

Yep... the full range of emotions from the pit of my stomach dropping in despair to f**k you tinnitus!

 

Allan - in my case I gradually experienced a change from intolerable active sufferance, to a more passive acceptance.

That doesn’t mean that this illness is minimised, but purely that it becomes more manageable.

I noticed from an earlier post you said that you feel suicidal at times.
Everybody that has this thing severely will have those thoughts at times.
There really was no cause for that guy to berate you for this. It is very common, normal even.

I honestly believe you will see these feelings moderate over time.

Perhaps some guided meditation might help you to develop a technique that you can practice when you are bad.

Melatonin is good for longer sleep of course.

Keep in touch buddy,
Dave x
Jazzer

 

Thanks Jazzer. I might have missed whoever berated me, but, each to their own I guess.

 

There is one (dubious perhaps) advantage from variable coping.
You can feel like absolute ‘SHIT’ for a spell - but ten minutes later feel that you may be coping quite well.
One longs for stability of course, I know.

 

@Jazzer What instrument did you used to play? Do you avoid music entirely now?

 

Jazz trombonist for 55 years.
You can see me on here on the thread
‘Jazzers Videos.’
I stopped playing in June last years.
My tinnitus is severe and constant unfortunately.

If you watch my awareness video on YouTube you can hear me play some trumpet and trombone.
“Dave’s Tinnitus Story.”
I miss my jazz life so much, but I have to tell you that I miss my silence more Flamingo.
Thanks for asking. xx

 

@Jazzer It sounds like you led exactly the life you set out to lead and have experienced things that most of us could only dream about! 55 years of making music and making other people happy is awe-inspiring! Please don't be hard on yourself. Who knew about ear protection in those days?! Hopefully something will come to market soon and we can all get relief! Take care my friend.

 

A lovely reply Flamingo - this is the way I am learning to think about it now - thank you so much xx
Dave x
Jazzer

 

Me too @Jazzer. Some days I still want to bang my head into a wall. And some days with the same level of intrusive noise in my brain I can function okay.

I just get worn down and tired. And explaining it to the "other" world of no tinnitus people is impossible.

Right now I am dealing with an extremely painful condition and have to make a decision about surgery soon.
The pain increases my head noise so much. I am scared. My husband is being supportive and that helps me so much. Making this decision has not been easy.

Ugg......

 

@Jazzer I forgot to mention that your playing really touched me on your YouTube clip. I can still hear it in my head. It was very beautiful. You have left quite a legacy.

 

“WOW - Flamingo,
how lovely for me to read that,
love
Dave x
Jazzer

 

Oh Star - I am so so sorry.
It really is quite unbelievable how totally unaware of our condition the people we come into contact with are.
I find I can be in conversation with somebody, with my head noise raging away, and yet the person on the opposite seat, chatting to me is obviously completely oblivious of my predicament.

Yesterday I went to a family house party for a quite beautiful grand daughter in law.
Everybody was enjoying themselves; music on quite loud, me with my earplugs stuffed right in, working very hard to lipread family conversations of course.
I did enjoy the ambience and the friendship, but taking the right precautions is a balancing act.
I really don’t want to divorce myself from family occasions, but it certainly isn’t easy.

Very best wishes Star
(you are my top lady - but don’t tell the others for god sake!)
Thank goodness for your lovely husband,
love
Dave x
Jazzer

 

I do have similar feelings toward tinnitus like you.

Depending on my mood and stress I deal with it differently. Sometimes I can “coexist” other times it’s a battle to keep it from breaking me down.

The one thing I have learned is to never feed into it with my emotions or it can easily take over. I try to focus my emotions on other things and deprive it.

Does this always work? No. Do I sometimes feed into it? Yes. Am I getting better at “coexisting” rather than battling it? I hope so....

 

Thank you @erik .
From day one of my ‘ground zero’ trauma I lived in a total hell, for a long time.
I was devoid of all hope.
Gradually I came to realise that I could literally stay like that if I chose to,
- - - - OR - - - -
I could try to accept its presence, and do my best to go on living as normal a life as possible.
The real difficulty it seems to me, is that we do not want to accept ‘a lesser life.’
Why should we ??
We want exactly what we had before.
It was so GOOD.

I now know, of course, that my former jazz life has gone for ever.
Almost everybody on the UK jazz scene knew me;
if you needed a hot jazz trombonist, the chances were that you would give me a call.
When I packed up my horn for the last time, in May last year, I was trombonist for five working jazz bands.
Jazz Clubs - Festivals - Cruise Ships - you name it and I did it.

However, I accept that that life has gone.
I live with a beautiful loving wife, within an incredible family, in a most beautiful gated community in Surrey.

My active sufferance has changed to a more passive acceptance.

I will never throw all that away.
One of my lovely daughters is a school teacher, with Tinnitus.
I will give a good example.

 

Jack - I think we are both working along the same lines.
I have tinnitus.
I can not turn it off.
It is there the whole time.

BUT - I am not helpless.
I can give it my full attention if I really want to,
or I can concentrate on other choices.
Nature, Art, Humour, Music even, conversation.
A more philosophical approach perhaps.

From being a world beating sceptic,
I am learning ‘more selective concentration.’
Yes - it is there - as always - now what can I concentrate on that might be more interesting?

A compromise? of course,
but I am living better.
Best wishes Jack,
Dave x