I'm Not Committing Suicide. I'm Being Murdered by Merciless Tinnitus.

[Bam]

The fire rises

It's time we demand a real cure

It's time to move beyond posting

It's time for real, grassroots activism

This is the sort of thing the BTA should be promoting. A march on parliament, placards depicting the daily torture, berating the bullshit joke treatments we are offered, uncovering the actual suicide stats. Instead they f***ing support the status quo hearing aid, TRT, mindfulness crap and act all indifferent to us.

 

[IAmCalifornia]

This is the sort of thing the BTA should be promoting. A march on parliament, placards depicting the daily torture, berating the bullshit joke treatments we are offered, uncovering the actual suicide stats. Instead they f***ing support the status quo hearing aid, TRT, mindfulness crap and act all indifferent to us.

They literally promote insanity. The same thing over and over expecting a different result.

Like it legit shocks me that they would promote a scam like TRT, which is inexcusably expensive (like my non-working, no insurance ass can afford even a McDonald's meal at this point), as the premier tinnitus treatment. They even say "no it won't cure tinnitus, but it'll be like that pair of pants you never notice". ARE YOU F*****G KIDDING ME?! Comparing this mental torturous condition to my Air Jordan shorts?!!!!!!!!!!!!!!!

I want to cry just thinking about how much nobody gives a f*** about us.

And it makes me devalue life, mine and others. I have zero empathy.

We even had the golden A Star is Born publicity but the ATA screwed the pooch on that one.
I F*****G HATE EVERYTHING

 

[Elfin]

Reading through this thread I can't help but reflect on how things were for me when I first got T 14 years ago.

Back then the advice was a confusion of 'perhaps try Ginkgo and see if it helps' to 'here is this sound machine. Hopefully it will settle in 6 months'. And that was from seeing David Baguley at Addenbrookes hospital who was, even then, being posited as a leader in the field.

In some ways, it may seem like things haven't moved on. And for those with severe debilitating T, the pain and torment can push us to extreme desperation and lives which are only existing rather than living. Our pain is real and not felt by anyone as acutely as it is by us. And for this reason, it is a priority only for us. Other's can be told of it and can see how it affects us and in turn may feel their own sorrow as a result, but the sharp pain and suffering is felt by us.

The true fact of the matter, though, is that awareness is building, but at a slow rate; a rate perhaps seen as too slow for us, but then we have to acknowledge that this is true for many other conditions. We are all competing for finite funding and awareness. As more of us come forward with the condition and as the condition grows (which it will given the life noise which many of us are now exposed to) the snowball effect will lead to further funding and trials and eventually improved treatment. We have to only look at the developments in cancer and aids treatment and how these have improved over a relatively short period of time.

I guess the only thing we can be responsible for is affecting our environment and raising awareness. Whether this be through contacting journalists, writing our own books and blogs, filming vlogs, fundraising or writing to politicians and influencers, we can only do what we can. And if all we can do today is try and survive then that is all we do today and we go again tomorrow.

However long it takes for a cure, we are on the front line and we must do what we can. If enough of us try then maybe the change we want will happen. It may not happen as quickly as we would like or want, but it is the goal we must stretch towards and contribute however we can.

 

[Tinker Bell]

It's cool Ed...let me explain.
Not sure about you, but I'm definitely sensing a different tone on these boards as of late... compared to say couple of months ago.

But does a different tone on this forum translate to a different tone throughout the greater public? It's kind of like preaching to the choir if we're only posting angry memes on our own forum.

 

[Wolfears]

But does a different tone on this forum translate to a different tone throughout the greater public? It's kind of like preaching to the choir if we're only posting angry memes on our own forum.

Don't underestimate the power of this board...
But you are right...people need to speak out on social media, word of mouth...etc
Even getting other people to take a peek in here will have it's effect.
But this is a good start.

 

[IAmCalifornia]

But does a different tone on this forum translate to a different tone throughout the greater public? It's kind of like preaching to the choir if we're only posting angry memes on our own forum.

Unless there's some kind of massive advertising campaign, visible activism, celebrity endorsement, or a pandemic of sorts, the public doesn't care.

Though we had a really good window of opportunity with A Star is Born, but we all know how that played out.

FYI an anecdote: my own mother knows I suffer from horrible tinnitus. She saw that movie and loved it. Didn't even mention the tinnitus aspect.

 

[Vicki14]

Ed – Do you know whether in the UK there is a tinnitus association or charity other than the BTA? Sorry, not sure if you're a Brit.

I don't rate the BTA at all....

 

[Basshell]

I don't rate the BTA at all....

You know why? Because it's a "charity" set up in UK to provide salaries to 9-5 people. They all make the right noises but do nothing.

 

[Wolfears]

You know why? Because it's a "charity" set up in UK to provide salaries to 9-5 people. They all make the right noises but do nothing.

Ideally every single BTA executive should have at least moderate Tinnitus, because only then you can ensure that they will be acting in the interest of Tinnitus sufferers and not for personal gain.

 

[Telis]

Ideally every single BTA executive should have at least moderate Tinnitus, because only then you can ensure that they will be acting in the interest of Tinnitus sufferers and not for personal gain.

Unfortunately people with moderate tinnitus that can still function at a high level will not create understanding. I think it does the opposite, it makes that person think that tinnitus isn't so bad, and think that people just need to cope better. Maybe all executives should have severe tinnitus, but oh right, they won't be working, they will be exhausted and barely getting through the day, or dead. That won't work.

 

[Vicki14]

You know why? Because it's a "charity" set up in UK to provide salaries to 9-5 people. They all make the right noises but do nothing.

It was the recommendation of the BTA that was the demise of me!

 

[Agrajag364]

This is the sort of thing the BTA should be promoting. A march on parliament, placards depicting the daily torture, berating the bullshit joke treatments we are offered, uncovering the actual suicide stats. Instead they f***ing support the status quo hearing aid, TRT, mindfulness crap and act all indifferent to us.

It was the recommendation of the BTA that was the demise of me!

yeah I haven't gone back to that chaired support meeting Vicki

 

[Wolfears]

Unfortunately people with moderate tinnitus that can still function at a high level will not create understanding. I think it does the opposite, it makes that person think that tinnitus isn't so bad, and think that people just need to cope better. Maybe all executives should have severe tinnitus, but oh right, they won't be working, they will be exhausted and barely getting through the day, or dead. That won't work.

That is why I picked the moderate....a debilitated board of directors would not do much good indeed.

Honestly, moderate tinnitus is enough to destroy most people's lives to the point that there is no more enjoyment, but they can still somewhat function and hold a job...

Then there is the fact, that having any form of tinnitus is like having a timed bomb strapped to your chest.
It could go off anytime and launch you into the big leagues in couple of minutes...sometimes for no reason at all...
This fact is not lost on most moderate sufferers including myself.
These days I bounce between mild and moderate, but having spent 3 longest months of my life at the severe level, deep inside I feel like an escaped death row inmate, who has every cop in the county looking for him.

It seems that not one day goes by, where another horrified seasoned tinnitus veteran is posting in total and utter panic, trying to figure out what is happening to him after he succesfully "habituated" for X amount of years and suddenly their tinnitus got worse.

Trust me my friend...moderate tinnitus is enough of a motivator for most people out there.

 

[Vicki14]

You know why? Because it's a "charity" set up in UK to provide salaries to 9-5 people. They all make the right noises but do nothing.

It was the recommendation of the BTA that was the demise of my Tinnitus!

yeah I haven't gone back to that chaired support meeting Vicki

I wonder why @Agrajag364!!!

 

[Telis]

That is why I picked the moderate....a debilitated board of directors would not do much good indeed.

Honestly, moderate tinnitus is enough to destroy most people's lives to the point that there is no more enjoyment, but they can still somewhat function and hold a job...

Then there is the fact, that having any form of tinnitus is like having a timed bomb strapped to your chest.
It could go off anytime and launch you into the big leagues in couple of minutes...sometimes for no reason at all...
This fact is not lost on most moderate sufferers including myself.
These days I bounce between mild and moderate, but having spent 3 longest months of my life at the severe level, deep inside I feel like an escaped death row inmate, who has every cop in the county looking for him.

It seems that not one day goes by, where another horrified seasoned tinnitus veteran is posting in total and utter panic, trying to figure out what is happening to him after he succesfully "habituated" for X amount of years and suddenly their tinnitus got worse.

Trust me my friend...moderate tinnitus is enough of a motivator for most people out there.

Yeah fair enough, but Honestly, the people that I know that don't have tinnitus are really sympathetic, the ones that do have it seem like they could care less.

My gf has moderate tinnitus and hearing loss from working at a nightclub for years, she can not understand what the big deal is, because to her, what she experiences is tinnitus, it bothers her at times, but it doesn't really have any impact on her life besides being annoying. She can not wrap her head around it coming in any different form than what she has. I definitely don't hold this against her, as this seems to be a tough concept for most people to grasp. Maybe it's a lack of imagination.

 

[Alex Matyjasek]

I know I guy from my home town who's had tinnitus for years. A true veteran. We were in a bar having a beer and he asked me: 'Can you hear it now?' and I replied: 'just a little bit'. He told me he could hear it clearly and told me not to make a fuss out about it. He didn't really care what an issue it was for me. He said that tinnitus is very psicological, try not to care, try not give a damn and don't fight it. The more you battle with it, the worse it will get.. Be patient, and thngs will get better for you.

Maby Bill Gates should have tinnitus? Then for sure things would start rolling... Our only hope is that one of the major top richest people get it, become desperate and spend all there money in trying to find a cure.

 

[Basshell]

I know I guy from my home town who's had tinnitus for years. A true veteran. We were in a bar having a beer and he asked me: 'Can you hear it now?' and I replied: 'just a little bit'. He told me he could hear it clearly and told me not to make a fuss out about it. He didn't really care what an issue it was for me. He said that tinnitus is very psicological, try not to care, try not give a damn and don't fight it. The more you battle with it, the worse it will get.. Be patient, and thngs will get better for you.

Maby Bill Gates should have tinnitus? Then for sure things would start rolling... Our only hope is that one of the major top richest people get it, become desperate and spend all there money in trying to find a cure.

Wouldn't make a difference. They get the best medical care and don't focus on helping us mere mortals to cope better with it.

 

[Jason37]

He is right. Millions of us live with it everyday and just don't care. If you can't hear it in a pub setting then you are good my man.

 

[jasonbourne]

I know I guy from my home town who's had tinnitus for years. A true veteran. We were in a bar having a beer and he asked me: 'Can you hear it now?' and I replied: 'just a little bit'. He told me he could hear it clearly and told me not to make a fuss out about it. He didn't really care what an issue it was for me. He said that tinnitus is very psicological, try not to care, try not give a damn and don't fight it. The more you battle with it, the worse it will get.. Be patient, and thngs will get better for you.

Maby Bill Gates should have tinnitus? Then for sure things would start rolling... Our only hope is that one of the major top richest people get it, become desperate and spend all there money in trying to find a cure.

So why is he talking about it if he doesn't care? Stop deluding yourself like he is.

 

[Jazzer]

Yeah fair enough, but Honestly, the people that I know that don't have tinnitus are really sympathetic, the ones that do have it seem like they could care less.

My gf has moderate tinnitus and hearing loss from working at a nightclub for years, she can not understand what the big deal is, because to her, what she experiences is tinnitus, it bothers her at times, but it doesn't really have any impact on her life besides being annoying. She can not wrap her head around it coming in any different form than what she has. I definitely don't hold this against her, as this seems to be a tough concept for most people to grasp. Maybe it's a lack of imagination.

People with light or moderate 'T' are absolutely convinced that theirs is identical to ours.
Of course - it must be just the same.
It stands to reason.
They simply do not consider that our 'T' is a completely different 'species.'

Hence:
"I got over mine and you can too."
"Just choose happiness and enjoy the sunshine."
"I always just ignore it."
"Yes, I've got it but I won't let it bother me.
You should try it."

........and other similar "CRAP !!!!!"

They simply do not realise just how ignorant, self-preening and insulting they are.

 

[Bam]

He is right. Millions of us live with it everyday and just don't care. If you can't hear it in a pub setting then you are good my man.

They care so little, they feel the need to post on tinnitus forums......Because they really don't care.

 

[Jazzer]

They care so little, they feel the need to post on tinnitus forums......Because they really don't care.

.......maybe they are addicted to kudos......?

(praise and honour received for achievement)

 

[Autumnly]

I know I guy from my home town who's had tinnitus for years. A true veteran. We were in a bar having a beer and he asked me: 'Can you hear it now?' and I replied: 'just a little bit'. He told me he could hear it clearly and told me not to make a fuss out about it. He didn't really care what an issue it was for me. He said that tinnitus is very psicological, try not to care, try not give a damn and don't fight it. The more you battle with it, the worse it will get.. Be patient, and thngs will get better for you.

I've met people like him and what they all had in common: their tinnitus was stable or stable and they could ignore it despite it apparently being insanely loud. Can't deny that when I meet people who say "I have severe tinnitus but I only hear it in a quiet room, I can tune it out" I wished my brain could do that. Maybe we really need a fourth category: mild, moderate, severe, catastrophic?

When someone asks on here "Why do some people not habituate?" (and "some" still means millions of people worldwide not just a few handfuls), the discussion relatively quickly boils down to "The only disability in life is a bad attitude!"
I would compare living with severe/catastrophic tinnitus to living with severe chronic pain, you might get (somewhat) used to it but that doesn't mean you won't feel pain or that it can't be debilitating.

But even on here you have people with severe tinnitus saying things such as "They forget that the mental struggle is really what keeps T intrusive and loud." or "But tinnitus is really only as loud or intrusive as you let it be." You can't argue with them.

 

[Jazzer]

But does a different tone on this forum translate to a different tone throughout the greater public? It's kind of like preaching to the choir if we're only posting angry memes on our own forum.

As a well known (former) jazz musician in the U.K. I do post items up on Facebook, on Tinnitus and precisely how this "Effing Shite' has destroyed my precious silence, and ironically silenced my delightful career - and I reach many people.
But what more can 'I' do?

Fund raisers often bemoan the fact that we don't donate, or if we do, we don't donate enough.
Oh Great.
This piece of shit has robbed us, destroyed the entire career of many of us - but somehow it is simply up to us to continue donating that which we have no opportunity of earning.
When I had a career, an income, money, I once donated £500 to Macmillan nurses.
I'm hardly a skinflint.

But what more can we do than attempt to publicise our plight.
I do consciously describe this condition to friends and family if they show an interest, or particularly if they overstep my rules of considerate engagement, though I am also well aware that simply being a grouch will work against me.

 

[Bam]

If you can't hear it in a pub setting then you are good my man.

No you're far from good. As @Wolfears has consistently pointed out- and he's 100% right- you are living with a bomb strapped to your chest. Countless people on here believed they were 'good my man' until suddenly they woke up not so good. In fact they woke up back in hell, begging for someone to help the end their misery.

The only way anyone who has been in anyway touched by this dreadful affliction will ever be truly 'good' again......And by that i mean secure, happy and with this horrendous weight lifted from their shoulders....... is if a proper treatment that doesn't involve mentally convincing yourself you're better, is developed and offered up to us by the doctors who currently ridicule our suffering, in part due to this insecure bravado that lurks within our own community......I'm tough, I don't need a cure, I'm braving it out. What noise?!? Doesn't bother me mate!

 

[Nanny chocolate]

Morning Guys.
It's such a joy to wake each day to noise drilling through one's head
Bam I need to buy tights today so do you have a preference for which colour?
@Bam @Jazzer

 

[Bam]

Morning Guys.
It's such a joy to wake each day to noise drilling through one's head
Bam I need to buy tights today so do you have a preference for which colour?
@Bam @Jazzer

As long as the colour isn't too 'loud' Eve.xx

 

[valeri]

As long as the colour isn't too 'loud' Eve.xx

Yeah that would be too loud for a person to bear

 

[jay777]

A true veteran. We were in a bar having a beer

Would he have ever made it to the bar if he had Hyperacusis?

 

[Nanny chocolate]

Lol
@Bam