A Monumental Challenge

Tinnitus is a monumental challenge.
That information can not be overstated.
Everybody with loud, chronic, intrusive Tinnitus knows the truth of that statement

......BUT NOBODY ELSE DOES !!

They truly do not have a clue.
I went to a family birthday party held in a public hall, where the crappy, mindless ‘music’ was blaring out.
I said nothing, but quietly removed myself to an adjacent lounge. The hostess, a future family member came out to speak to me:

“Oh dear?
Out here ‘nursing’ our Tinnitus, are we ?
Oh dear - what a shame?”

My respect sunk below zero!
(I eventually took the opportunity to point out her CRASS IGNORANCE!)

I remember reading an article written by a son about his ageing dad, who had said to him,
“Do you know son.....when I went blind, it was truly awful. But I gradually came to accept it. Eventually, after many falls in the house, and many bruises, I learnt to find my way around again. I could cope.

Then I got loud permanent Tinnitus!
He’ll on earth!
Going blind was like ‘a stroll in the park’ compared to Tinnitus.”

I suffered an isolating neglectful childhood, necessitating years of therapy, but I searched for answers, studied psychology, found some great authors who wrote on “child care, and the growth of love,” (principally John Bowlby) and managed to piece together what had gone wrong, and devise a way I could recover from it. In short, I not only survived, I got well.

By means of my ‘damage limitation’ practice, I went on to have a pretty good life. The most loving of wives, wonderful kids, beautiful grandchildren, a reasonably good business life, and great musical experiences in the jazz world.

Then ‘Effing’ Tinnitus!!!
(Sorry about the hint at an expletive.)

So what caused it?
*Fifty odd years in the music business, trying hard to advise surrounding musicians against the excessive use of volume, and being studiously ignored.

*A two hour stint in an MRI machine, far too long, to observe heart activity.

*Six months of (ototoxic) prednisolone, following an acute attack of sarcoidosis.

*Finally a high society gig, where I was the bandleader, in the presence of a musician ‘friend,’ who played far too loudly, and up close, who I was paying £200 to deafen me, and give me Tinnitus.
All this in the presence of the Royal Family.
(Royal Ascot.)

The following day I woke up completely deaf on my left side for 48 hours.
Hearing came back, and with it......severe Tinnitus, which has extended to this day.
I was truly heart broken !!!

Permanent, loud, life changing, head noise.
You all know what this is like, only too well.
After some terrible months, I decided that I did want to go on living a productive life, after all.
But how to do it ??
As we all know, there is no obvious way forward, is there?

Living in a state of permanent anger is no good.
We already have excessive cortisol and adrenalin in our bloodstream, from stress.
So for self preservation, we have to let go of anger.....just let it go....

Become a miserable grouch?
No good either.
Who would want to even know us? Nobody.

I found the posting,
‘Habituation is not a Myth, it’s an Impossibility’ very interesting.
Apparently it can be shown, by observing constant neuronal activity, that the brain always brings our focus back to ‘the noise.’
A depressing prospect, which may well be the truth of it, but whether it is true or not, one thing is for sure.....we must devise a way to go forward....better ways to cope.

For me:
Meditation - I can still put myself ‘right out,’ despite the noise.
Okay - so part of my brain is not at rest perhaps, but much of it clearly is.

Good sleep - with the assistance of a personalised meditational tape.
(courtesy of one’s wife.)

Walks in the fresh air, and other exercise.

Oh.....and I nearly forgot, the company of three of the Finest, Most Adorable Pussycats
.....in the known world.
(Blimey - that was so long - I’ll let you go now)

 

tinnitus is a monumental loser

 

@Contrast - but I’m not giving in....x

 

great post @Jazzer and thanks for sharing! Whilst we may never know silence, we will hopefully know cal and sanity again!

 

@Jazzer

“Hell on Earth”
NOT
“He’ll on Earth.”

(don’t blame me - blame predictive text!)

 

And come here to show we are still doing okay. And have tomatoes thrown at us.
We just duck and dive them.

I used to be the tomato thrower towards anyone who would tell me they were okay and I would be also.

Love the post @Jazzer!

 

The world is full of ignorance, whether they are family or might become part of the family. If they or anyone supports your cause, life ,dreams then accept them in with a warm heart and be proud to have them. If they are ignorant and not caring for your values, REPLACE them and stay away from them. I don't care who it is (family, friends...anyone)

The last thing a person needs, is a rude, ignorant person that has no clue... what challenges you face 24-7......

 

@Starthrower - I must come clean about something - you see my lovely misus says that men always exaggerate - about all sorts of things - but we won’t go into that.
(she may be exagerating anyway.)
When I said “in the presence of the Royal Family,” my band was playing to welcome the visitors to the Ascot Racecourse entrance, at which time the Queen etc... was riding up the course in her gold landau carriage, pulled by six beautiful, white, plumed horses.
I’ve played the Royal Ascot week in June for about 20 years now.
I feel like I’ve “come clean.”

 

@fishbone - because I recognised ignorance, rather than malice, I chose to educate, rather than spit blood, on this occasion.
On a different day she may well have had a broadside from me.
But essentially I agree.
She gets just one chance only !!

 

hi jazzer when you meditate do you not hear the noise?

 

Great post as usual. Meditation is something I've dipped in and out of but I intend on going all in at some point.
As for sleep, the best thing I ever did was get pillow speaker and subscribe to a podcast called "Stuff you should know"
I now fall asleep quicker than I did before tinnitus.
Anyway great post.

 

@jay777 - Yes I do hear it.

In a nutshell:

Warm bath (optional)
Deep breath in (nose)
Long slowbreath out (mouth)
Ask tummy to take over breathing,
Listen to your sounds for a few seconds,
then just be aware of your breathing.

Even given your sounds, you may well drift off quite naturally.
If deep relaxation doesn’t happen for you,
just ‘think’ the word deeper - deeper - deeper....
as you breath:
Slowly.
Breath out (deep).........breath in (er)........
Breath out (deep)..........breath in (er).......
Repeat until you drift away.......

If repeated daily you may come to hear your ‘T’ without a battle going on, and eventually associate it with relaxation.

I usually meditate for about 20 minutes.
It probably takes a while to master it, but I was meditating before Tinnitus.
Best wishes
Jazzer x

 

@Jazzer, the ignorance is astounding, but then I think we’re all ignorant to conditions we have no idea about, to some degree. No one will ever understand tinnitus like someone who has it, and lives with it, no matter how it’s described to another person.
I’m lucky in the fact that I generally don’t have that problem. The people I have around me all know about my ear problems and never really say or do anything out of order. The stories you describe sound incredibly disrespectful and quite honestly, hurtful. Words are cheap when you have never experienced severe intrusive tinnitus.

You have the perfect attitude and mindset though which I applaud you for.

 

hi jazzer I have been thinking about Thích Quang Duc the vietnam monk who self immolation in saigon while in a state a meditation if true, how can someone stand that pain.make you think that are torture would be easy to overcome

 

@Ed209 - thanks again Ed.

Us people with chronic Tinnitus ‘hurt.
There is no question about that, is there?
It is a very cruel affliction, like no other.
Knowing what ‘hurt’ feels like, we really don’t want to inflict any, do we.
Kindness always feels right doesn’t it?

 

That was inspirational.

 

I can remember that in the early to mid eighties that smoking was allowed in many hospitals in the Western States of the USA. Patients who used oxygen weren't allowed to smoke. Then in the nineties smoking was only allowed in lounges, lobbies and in the back end of the cafeteria. Then when this new century began, smoking was only allowed in smoking zones outside the hospital. About ten ago smoking was then not allowed at all on campus. Awareness campaigns on smoking increased over the years. Hospital smoking awareness education wasn't just about how smoking is bad for your health. It was also about how those who smoke can bring harm to those around them that don't smoke.

In the Western States, some health caregivers to this day think that if you have tinnitus then you are hard of hearing and that they must speak loud when talking. Many people who don't have T & H are T & H ignorant, but it's sad that some who work in healthcare also have little awareness.

 

@Greg Sacramento - what really gets to me is the fact that there are still no educational public service films, or tv programmes linking excessive volume with deafness and Tinnitus.
We often see stuff re: smoking related illness, breast cancer checking, prostate checking, testicular checking...
This subject has been known about for years, and notifications like this would have saved many of us.

 

No reason to explain I am still impressed.

An aspect of the meditation and breathing that helped me was while breathing in let the air fill your tummy area not just the lungs. Feel it expand outward and when slowly breathing out bring it back in. And do not hesitate when re-breathing again. I usually do this slowly to the count of seven.

 

@Starthrower - there is one particular aspect of meditational breathing which intrigues me.
When you’ve got it right, breathing becomes a passive thing, not an active thing.
Instead of “doing the breathing,” we become the observer.
After the ‘out breath,’ the body pauses until some nerves deep in the abdomen automatically trigger the next ‘in breath.’
I call that pause, ‘the breathing gap.’
(It’s a delicious experience when you’ve really got it.)
Similarly, after the ‘in breath,’ when the tummy has registered ‘optimum’ expansion,’ another set of nerves triggers the ‘out breath.’

This is obviously what occurs in ‘sleep breathing’ but it is lovely to experience it while conscious, because we are witnessing a purely automatic body function, without any controls.

This is just the way I have come to experience meditational breathing, and I have almost certainly bored 50% of readers to death, and put the other 50% to sleep !!
(So reading my ‘shit’ actually becomes the cure for insomnia......Hahahahaha.........) xx