"That Buzzing That Never Goes Away" — Article in The Times

Okay guys I’m no shirker so here is my proposal and I reckon this could reach millions of people...

I promise I will gladly write up my story and I will make it so compelling that I’m pretty sure with @David etc backing from the BTA, the Daily Mail will eat it up.

If we can get a double page feature about my massive fall from grace because of tinnitus, which potentially will be seen by multiple millions worldwide on the Daily Mail website, then we can go from there.

 

@Bam,
No pressure doing a YouTube video as you have been through so much and still do and you might not feel comfortable being in the public eye as I noticed you don't even have your own profile photo up.

Maybe something you might like to do in your own time.

love glynis

 

That's a very good point. I think we're mostly on the same wavelength, where you need to show things to make people aware of the consequences, they can be hard hitting and you need to do it. We also had a drink driving campaign in the UK like that. It was absolutely brutal. It kind of needs to be because the consequences are big and it had the desired effect.

The ads in the UK at the start of AIDS were widely acknowledged as a mistake, trying to scare people into safe sex. They also sent leaflets out to every household with a picture of a tombstone on them. My point is that kids were traumatised by it unnecessarily. That was a government effort. The actual people pushing for treatment and lobbying did not do anything like that, they did (and continue to do) an amazing job.

 

Yes - mild Tinnitus for 24 years, but after a vicious sudden acoustic trauma lasting probably a few seconds, all hell broke loose the following day.
Of course, when you have it mildly you do not have the experience of what may come next.

 

Veering even further off topic...

This is something that is the root of a lot of the disagreements within the community itself. And it is a point that never gets resolved.

When I had mild tinnitus I thought I knew what tinnitus was. And there can often be people who come along and try and tell you all about tinnitus and what you should be doing when they have it mild.

At its core this affects awareness. How do you present the full spectrum of tinnitus without causing harm, or conversely not representing people?

 

It’s tough Glynis. I’m not somebody whose been through a shit time and is now out the other side. Like a lot of really severe sufferers this isn’t a bad year and then oh I’m glad that’s over, time to reflect and thank my lucky stars I got through it.

That is why this condition is so uniquely horrid. It can hold you captive in a traumatised state for a long long time.

I am willing to do what I promised though.

 

So true.
The well-meaning mild sufferer can really disturb those with a condition from hell.
The ‘I can cope - and you can too,’ posters.

I absolutely know and believe that they mean no harm, but it can seriously disturb somebody at the end of their emotional tether.

As I do understand the mechanism at work a little more tolerance wouldn’t go amiss from me, I guess, if I can manage it?

 

Take a bow, I couldn’t agree more. If all 26000+ members here were like Markku this thing would have probably been cured by now.

As for comparing this to AIDS, there is no comparison. AIDS has received so much money it’s mind boggling, and it was strongly backed by a huge number of celebrities too. It also had loads of benefit gigs and huge awareness campaigns across the world. HIV/AIDS is no longer a serious condition. They have a drug now that effectively eliminates the virus from an infected person’s bloodstream, as long as the person continues to take it. This was achieved because they had the money to create new drugs via research.

Tinnitus has had none of these things.

 

I personally think this thread has been one of the most constructive I’ve ever seen on here. Good balanced opinions that help everyone see the bigger picture.

Remember that we are all fighting for the same team. Don’t ever let that slip from your thoughts.

 

You have an amazing talent in writing and I know we will all be looking forward to reading your tinnitus journey and it will make for an emotional and amazing tinnitus awareness real life story.

Bless you Bam.

love glynis x

 

Glynis, you are the heart and soul of Tinnitus Talk and always have been. You have an unprecedented amount of kindness within you.

 

Dave, me and you share a very similar story.

 

I have talked to someone that works in health awareness. It was mentioned that there's a sociological theory called narcotizing dysfunction, which proposes that the more people learn about a disease or medical condition from the media (any type of media outlet or broadcast) the less likely they are going to do something about it.

There's only two ways to overcome this and have people want to take action:
It's needed to see the pain in the face and eyes of someone living this 24/7 and learn about what they are going thru.
You want people to understand that it can happen to them.

It was mentioned with a condition such as tinnitus, major awareness could happen if the above was done in a truthful way.

I received many good thoughts. The word "research" should be avoided, needed care and compassion should be center screen.

 

And I just love a touch of the irreverent!

 

Greg - dead right my friend.
“The pain in the face and eyes......”
Those visions can never be fabricated, nor erased once the observer has seen them.”

I once saw somebody very close to me, sob
“what did I ever do to deserve this....?”
Of course, the answer was absolutely nothing.
I can never forget that face and those words.

I suppose it means video clips of those willing to show their suffering.
Quite a tough call, when you consider we all have lives to lead: but I can’t help thinking it just might have an effect.

Observing pain in others is so very hard to ignore.
We are built that way - to respond.

 

This describes my husband. After developing tinnitus I slipped into a very deep depression and would not leave the house. The things we did together fell to the wayside. He was extremely upset, it was painful to see him sob. Tinnitus is a terrible thing, not only does it effect the sufferer but their loved ones suffer as well. -TC

 

Dear Tuxedo - I so hope you both find a peaceful way to move forward together,
Love a Best Wishes

Dave x

 

Thank you, Dave.

I'm very slowly getting better and he is extremely patient.

It will take time.

 

Bam, you have a real gift with words. In the era of social media that has become a power. You could do a great YouTube video and would be great on TV.

 

@Bam please write your story. Your words have a way of sticking in one's mind. I still remember your post title that you are not committing suicide tinnitus is slowly murdering me. Something like that.

You are still in the early years of this tinnitus life. Keep a diary and write and write so you do not forget.

I agree @Greg Sacramento. There is a problem with those writing the story. They want a happy ending. Or they want the horrid details from the sufferer or the family left behind. And this is always always ridiculed by readers which makes many go back to saying nothing out of shame, blame and guilt.

Doctors look at you like it is your fault or you are weak or you are not trying or so on and so on. I still remember back in 2002 going to the House Clinic in Los Angeles to see the so called "best of the best". It was the most horrible experience of my life to date.

 

@TuxedoCat this was my experience also!! I have written about it before. In a single day my husband "lost" me. Thankfully he carried me from doctor to doctor. Literally. He watched me wither away into a ball rocking back and forth in mental tormented pain. That was a long time ago now.

 

Thank you @Starthrower. You've given me hope! TC

 

Bam your transparent honest portrayal of this “hell on earth” makes you the one to do it.
All of us severe sufferers recognise the pain we witness in each other, which is quite apart from those lucky enough to have it mildly - a much tamer animal of course - but we would not all have your gravitas.

We have all been scratching our heads, wondering how on earth we can possibly get through to people; I think this could be the answer.

But just think for a moment about the pressure on you bud - I mean - the exposure??

 

I too sometimes have it mildly and sometimes have it badly so understand the difference. But this isn't such an unusual situation for chronic health condition is it - for it to vary wildly in severity? Chronic pain being an example – it can be mild and have little impact on someone's life and it can be absolutely devastating.

 

Wanting to do something like this is amazing Bam, but you come first, and your mental well-being with all the deep reality of your past reliving it again, putting it in to your here and now.

You can do it but go at your own pace and take long breaks to stand back and shake off the past you might not want to remember as we love you and would never want it to set you back to the dark times.

love glynis x

 

Well worth remembering. I would like everyone to know I have no axe to grind with anyone on here. We have some heated debates but as @Ed209 says we’re all on the same team.

One day nobody will suffer with tinnitus and some of us may be long gone but we will have played our part, each and every one of us. xx

 

Good point Glynis. I spend many hours a week campaigning around another health issue I have and that campaign has generated an enormous amount of publicity, but I have worked on the research side rather than doing this the publicity as I am quite easily embarrassed and prefer to stay behind the scenes, whereas others are complete naturals in generating publicity. Bam if you feel that even a YouTube video would impact on you mentally in a bad way then of course do not do it.

 

I think every member on here is amazing.

It just goes to show we can all have our own views and be heard without any nastiness between us and knowing we are all still here for each other and that is something to be proud of being a member of Tinnitus Talk.

At the end of the day having amazing people whom together understand all aspects of Tinnitus and Hyperacusis makes our forum what it is today.

You should all be proud of yourselves.

love glynis x

 

During my recent stay (last week) in ER I was begging doctors and nurses to allow me to stay in more quiet part but they had no mercy.

I was in unbearable pain but I was in more distress from my brain and ears being on fire from all the noises there, I was in tears pacing up and down corridors.

Nurses were true blue bitches who kept pushing me back into some noisy room while there were 3-4 empty cubicles that were much quieter and would make my stay more “enjoyable”.

One asked if I suffer from anxiety then called someone to say I’m having a panic attack.

Far out! I said to her she has no idea what she’s taking about! I said my ears are hurting and if I can be transferred to a cubicle.

Nope.....

And while I understand that ER is a busy place and they have no time to waste I don’t think such an ignorant attitude is granted considering there were options available to make me less miserable.

So I’m writing a letter to ER director, I’m not expecting a change but it can’t hurt just to bring to his attention that tinnitus and hyperacusis are very serious and patient in distress should be listened to and not made look crazy.

My experience with medical professionals here in Australia has been nothing but horror movie, from the very first ENT who told me that people with tinnitus commit suicide to not even been seen in ER when I presented suicidal TWICE earlier this year.

Not to mention bunch of idiots in between!

I don’t think any other condition is more misunderstood and marginalised than tinnitus!

Please God give me something “sexy” to suffer from!

 

This is exactly what everyone should be doing! When things are not right you can't just let them carry on and complain about them. We will only have change if everyone takes direct action where something is clearly wrong.

We covered something like this some time ago, in a video about the money that donkeys get donated.

We stand no chance when ordinary people pretty much blindly donate to a charity because of the cute donkeys...

Raise Awareness of Tinnitus Research