Tinnitus Is Not Tinnitus...

[fishbone]

This is where I have to put in my 2 cents worth.

Please remember that every single person on this forum is an individual. Tinnitus is our common denominator but we are all still individual people with unique life experiences, strengths, weaknesses, and personalities. Some of us cannot even afford to go to a therapist or doctor whenever we'd like for various reasons!

Congratulations on finding a way back into the light. But don't assume that what works for you is applicable to everyone else. Even a simple therapist knows that much! Touting your own success all over the place and insisting that everyone who isn't where you are is just weak and not truly trying is close to being a blatant insult.

"You can either read and listen to what I say or just keep on and reap these negative threads."
Are you kidding me right now?? You are not the chosen one or even the second coming of Christ. Don't let your glaring success rob you of simple compassion and understanding. Please stop and check yourself before posting things like this.

This is a SUPPORT forum. Those of us with severe tinnitus (like myself) will ALWAYS need support whether that comes in the form of well wishes, an expression of sympathy, or just plain LISTENING. Our suffering is not going away and no amount of pretending, ignoring, or positive thoughts is going to change that. We unhappy sufferers have no choice but to carry on as best we can and we have every right to cry and be sad or angry.

Strength is no necessarily pushing through every obstacle and conquering every illness. Sometimes real strength is living and just existing from day to day with our suffering. Do not take that away from us and tell us that we are just spreading negativity with our cries for help and compassion.

So ends my two cents.

You have no idea just how much compassion I have, please don't ever assume. Yes, this forum has people in it and all of us face unique challenges daily. I am facing challenges each and every day. Don't ever assume you fully know the chaos i live with each and every day. I still stand behind my words, I been at this for over 30+ years and I have faced majority of the issues the folks on this forum face each and every day. I know that I am more than qualified to offer some advice to those that suffer.

If folks cannot afford a therapist, then simply talk things out with family and loved ones. The point is to communicate as much or even more face to face, than simply posting on a forum.

I never labeled anyone to be weak or less than me. That's a figment of your own imagination, again you are assuming. I call it a success to make it through each day, yes I do.

***Our suffering is not going away and no amount of pretending, ignoring, or positive thoughts is going to change that. We unhappy sufferers have no choice but to carry on as best we can and we have every right to cry and be sad or angry.*** You are preaching this to someone who already knows this and has faced this daily for many years and still do. Again, you are assuming that you know what I deal with on a daily basis.



***Strength is no necessarily pushing through every obstacle and conquering every illness. Sometimes real strength is living and just existing from day to day with our suffering*** You have no clue what hell I have faced in my life and just how rattled one can be. As someone that has intrusive tinnitus, profound hearing loss, body pain 24-7 and no family and support. Again you are assuming that you know what I deal with each and every day.

My posts/threads are positive and I spread positivity at all times. This is what I do, I never say that my life is easier or better than anyone else here. I suffer like all of you do and just come to give people hope and tell them that they will be ok. I cannot please and win everyone over, that is fine. I have full compassion for the good people that suffer.

Even If I am suffering, I am still trying to find a way to make my life better. I try to motivate others, to take baby steps and try to take some action that will help them live a better life. There is absolutely NOTHING wrong with this. Encouraging people to better their lives is a GOOD thing and it doesn't make me a bad person for trying to help people with that!

Bless.....

 

[fishbone]

Im sure the guy gets zero respect in REAL life...you can tell by his posts, but online, hey, let him be the BOSS in his own mind. I've been here a long time on and off. trolling is this guys game, unfortunately he only has one type of bait, and that's calling people that suffer the hardest negative and acting their superior, he must just copy and paste from years back, pretty lame.

Telis people already know your reputation here, so I have no need to reply to such comments

 

[JohnAdams]

I have to agree with @Bam all the way.
A televised item on a celebrity talking about her patently mild Tinnitus does nothing to highlight the extent of the suffering that this thing does inflict.
It simply reinforces the general public's view that this is a mild copeable complaint, and therefore not worthy of researching, much less donating to.

This also raises the possibility that the true danger of this condition will be understated, so that the appropriate deterrent effect on erstwhile healthy people will be diluted, and largely ignored.

The difference in coping and not coping, is all about intensity, not courage.

It is the ridiculous perception that this wretched thing is easily cope-able, that leads to drivel about choosing happiness (as opposed to suicide), enjoying the sunshine (as a treatment method) and other clueless platitudes.

Just my views, as always.

It's almost like on top of our horrible luck getting this crap that there is an even more odious layer of luck on top of it that makes people not understand, or care, and then another layer on top of that from the medical community that completely misguided their approach to solving this problem. Like it's not just tinnitus, but a full blown curse.

 

[fishbone]

This isn't Fishbone. He sufferers and only wants to help. His message is one of being positive and physically active to better deal with T.

Hey buddy, we can't win everyone over in life, that's ok.

 

[Jazzer]

It's almost like on top of our horrible luck getting this crap that there is an even more odious layer of luck on top of it that makes people not understand, or care, and then another layer on top of that from the medical community that completely misguided their approach to solving this problem. Like it's not just tinnitus, but a full blown curse.

I agree on all counts John.
Personally I have virtually no medical knowledge, so whether they are approaching this wretched condition the right way or not, I simply have no idea.
Of course we have to accept that regenerating destroyed nerve cells may be a total impossability.
Then what?
We have to decide how to cope with the rest of our lives.
I can see no other solution than acceptance and adaptation.
When my severe Tinnitus started up I was paralysed with despair, could barely get off my couch.
I have progressed to a functional life, devoid of my profession as a jazz musician, devoid of income, devoid of status, devoid of a lifestyle, devoid of peace and quiet.

I have traded total despair for the hinterland of grudging acceptance laced with obvious disappointment.

However, I have to admit that there are still beautiful people and adorable pets in my life, so I seem able to cope.
But 'cope' is the appropriate word.
Best wishes John,
Dave x

 

[JohnAdams]

Of course we have to accept that regenerating destroyed nerve cells may be a total impossability.

Uh no dude, they have successfully done this in living mice and explant human cochleas. So it is flat out possible. Now as to effectiveness we can only wait and see. Hopefully soon we will know.

 

[Bam]

What news item are you referring to? Ms. Reid's tweet on Twitter? Or are you referencing a hypothetical news feature with a hypothetical female celebrity?

And to clarify, do you weigh tinnitus severity based on volume alone? You mentioned intensity and we seem to have a mix on TT of members with severe volume yet a mild response and mild volume yet a severe response.

This is all getting very old but in defence of my dear mate I think @Jazzer is referring to the below TV article, rather than a tweet.

I think this puts Reidgate officially to bed.

You will find Susanna by her own admission in the first 10 seconds has 'very very mild' T. When faced with 'severe' T through headphones in her dressing room, she can't bear it for more than 10 seconds and is totally shocked that anyone can live with it.

And yet here we are!

But she's right. We who have this 'howling screech' merely exist. God help us all. At least she tried to highlight our plight and that people like us exist. But I highly doubt anyone who watched it gives a shit. It's a condition 'other people get.' Ain't gonna happen to me pal! I'll have any 5 a day and jog round the park twice a week and i'll be fine.

God bless Susanna for trying to empathise and help. I think she does understand and care about how bad this can get.

I really hope that one day she's not permanently joined in life by the noise she couldn't bear for even a few seconds.

Nobody deserves this fate. It's a life wasted.

 

[Tinker Bell]

This is all getting very old but in defence of my dear mate I think @Jazzer is referring to the below TV article, rather than a tweet.

I think this puts Reidgate officially to bed.

You will find Susanna by her own admission in the first 10 seconds has 'very very mild' T. When faced with 'severe' T through headphones in her dressing room, she can't bear it for more than 10 seconds and is totally shocked that anyone can live with it.

And yet here we are!

But she's right. We who have this 'howling screech' merely exist. God help us all. At least she tried to highlight our plight and that people like us exist. But I highly doubt anyone who watched it gives a shit. It's a condition 'other people get.' Ain't gonna happen to me pal! I'll have any 5 a day and jog round the park twice a week and i'll be fine.

God bless Susanna for trying to empathise and help. I think she does understand and care about how bad this can get.

I really hope that one day she's not permanently joined in life by the noise she couldn't bear for even a few seconds.

Nobody deserves this fate. It's a life wasted.

Reidgate was in regards to her tweet. The original post (under Awareness) was regarding her tweet. The frustration was that members were calling her attention-seeking for posting that her tinnitus was bothering her when she has in the past said she has mild tinnitus.

In Jazzer's original post on this very thread he said she was portraying tinnitus as a mild nuisance and not showing the severe sufferers plight. Yet, the clip you posted certainly seems too show how tinnitus can vary. You even credit her for trying to empathize and help, which is what this thread was claiming she was not doing.

Yes - the interview did raise awareness, I would not argue against that, but it did not show anything of the severe sufferers plight.
That is all I am saying.
Hence - frustration.

Either we are all discussing a different thing — a recent tweet or a three year old news items — or we have varying degrees of interpretation and comprehension on the exact same source.

 

[Ed209]

You will find Susanna by her own admission in the first 10 seconds has 'very very mild' T.

This is the video I posted and it's 3 years old. Tinnitus can change, so it's unfair to relate back to this when it's the tweet we were discussing.

 

[Wolfears]

It's almost like on top of our horrible luck getting this crap that there is an even more odious layer of luck on top of it that makes people not understand, or care, and then another layer on top of that from the medical community that completely misguided their approach to solving this problem. Like it's not just tinnitus, but a full blown curse.

Yes severe Tinnitus is literally like winning some kind of a reversed lottery on more than one front.
If you were crippled up in a wheel chair with missing limbs, at least you wouldm't have to explain it to anyone...this is far worse than any wheelchair gig, yet you are expected to act normal and be happy, since there is no way anyone can tell.

 

[Jazzer]

Sorry to be late on parade.
Everyday for weeks now I have been working on my flat that was demolished by vile tenants who have virtually wrecked it, costing me thousands.

However, Bam sussed Reidgate out for me.
I was commenting on a breakfast tv item, not the tweets, so I am obviously well out of order.
I apologise to those I managed to upset.

There is too much going on for me at the moment - perhaps I am losing it.

Dave x

 

[Michael Leigh]

Everyday for weeks now I have been working on my flat that was demolished by vile tenants who have virtually wrecked it, costing me thousands.

My sympathies go out to you @Jazzer for I have lived through the nightmare of having difficult tenants. When you are able to I will discus the matter via PM.
Wishing you the best of luck because I know just what you're going through.

Take care
Michael

 

[Ed209]

Sorry to be late on parade.
Everyday for weeks now I have been working on my flat that was demolished by vile tenants who have virtually wrecked it, costing me thousands.

However, Bam sussed Reidgate out for me.
I was commenting on a breakfast tv item, not the tweets, so I am obviously well out of order.
I apologise to those I managed to upset.

There is too much going on for me at the moment - perhaps I am losing it.

Dave x

A friend of mine got lumbered with tenants that didn't pay and he lost a fortune. However, I've never seen anything like the pictures you posted; that was pure an utter filth.

 

[Ed209]

Here's another example of Susanna Reid talking about the extremes of tinnitus with her co-presenter. She certainly doesn't play it down:

This link will not play embedded but you can just click the link inside the box and it will load:



It's the same clip, but with a different intro showing how tinnitus can wreck lives.

She is quite clearly very candid about her own tinnitus in these old videos, so why disbelieve her when she says she is suffering 3 years later? If you believed her when she said it was very mild, then why not when she tweets it's loud?

The only attention seeking I've seen her do is bringing public awareness to the condition.

Anyway, I think this debate has reached its conclusion.

 

[glynis]

The house next to me is empty and ready to rent out.
Two parcels of mine got put through the letterbox by accident .
When I saw the property lady ready to show a tenant around I asked If I could get my parcels.
The door opened and on the floor were lots of unopened letters and my two Amazon parcels ripped open and the inside packing open and the two items had been taken.
I rang the Landlord to the property and he said it must have been the old tennants come back to check out the house but only took my items and left all the letters.
Amazon were great and refunded my money and told me re order them and they would pay for one.

Hope the next tenants are not thieving scum bags.
love glynis

 

[JohnAdams]

The house next to me is empty and ready to rent out.
Two parcels of mine got put through the letterbox by accident .
When I saw the property lady ready to show a tenant around I asked If I could get my parcels.
The door opened and on the floor were lots of unopened letters and my two Amazon parcels ripped open and the inside packing open and the two items had been taken.
I rang the Landlord to the property and he said it must have been the old tennants come back to check out the house but only took my items and left all the letters.
Amazon were great and refunded my money and told me re order them and they would pay for one.

Hope the next tenants are not thieving scum bags.
love glynis

Damn, I hope it wasnt your lipoflavinoids, without those we couldnt survive!

 

[85dB T]

...yet you are expected to act normal and be happy, since there is no way anyone can tell.

Actually this is our prescribed cure (state-of-the-art CBT/TRT).

 

[fishbone]

Yes severe Tinnitus is literally like winning some kind of a reversed lottery on more than one front.
If you were crippled up in a wheel chair with missing limbs, at least you wouldm't have to explain it to anyone...this is far worse than any wheelchair gig, yet you are expected to act normal and be happy, since there is no way anyone can tell.

Are you crippled? Are you missing limbs? Do you know, that a lot of these people need a caregiver to help them in their everyday life. yes, I may not be able to go out and do what I use to do because my ears ring and my hearing is profoundly poor , but never underestimate just how hard of a life, a crippled person goes through. In today's world there is no NORMAL. Everyone is suffering from something, tinnitus is horrible and it can change our lives. I agree, but I will never underestimate the pain that others go through, no matter how bad my tinnitus may be...

 

[Agrajag364]

I'm so sorry for your family's suffering... that sounds awful, the kind of experience that would scar you for life.
I can certainly understand how this experience would harden you. I am glad they found a better life in the US.

No, my dad has been through nothing crazy, he's lead a completely normal life.
I don't get him at all - he has high anxiety, I mean really bad....
I remember during my childhood he'd be stressing so bad about losing his job (which he never did, or was never in danger of according to my mum). He'd stress so much, and I remember my sister and I worrying too just because of his stress.

He worries about everything - but not his tinnitus.
He recently had cataract surgery, and the way he has carried on about such a simple procedure is mind blowing!
He also had to have a colonoscopy last year after a positive bowel screen result. They way he stressed about that, about the .01% risk that something adverse might happen to him during the procedure drove my mother and I crazy.
They ended up finding pre-cancerous polyps (ie. another few months and he'd have full blown bowel cancer). Still says he won't have another follow up colonoscopy....

He stresses when my kids fall over, that they are going to bump their heads, the list goes on.

All the time there's a full blown gas leak sound in his head and he couldn't care less.
Go figure.

So crazy! I once had a colonoscopy with no sedation (long story) which is supposed by many to be horrendous and it didn't worry me! Over on a flash. Tinnitus on the other hand....

 

[Wolfears]

Are you crippled? Are you missing limbs? Do you know, that a lot of these people need a caregiver to help them in their everyday life. yes, I may not be able to go out and do what I use to do because my ears ring and my hearing is profoundly poor , but never underestimate just how hard of a life, a crippled person goes through. In today's world there is no NORMAL. Everyone is suffering from something, tinnitus is horrible and it can change our lives. I agree, but I will never underestimate the pain that others go through, no matter how bad my tinnitus may be...

No I'm not crippled anymore...but when I was crippled by severe tinnitus, I would prefer to be crippled physically rather than mentally...
I know how it feels not being able to move from pain...when I injured my back, I had to crawl on my belly using arms only for weeks...just a simple task of traveling 10 feet to the bathroom would take me about half hour..

But you know what?
There was peace inside my head and I could sleep...yes I would very much take the wheelchair over severe Tinnitus.

At least being visibly crippled, getting disability should be a breeze..after you get used to the wheelchair and physical limitations, you still have a chance at recapturing some form of happiness and moving on.

Severe Tinnitus does not give you that chance...at least for me, it would be impossible to find happiness while staggering around like a zombie from lack of sleep because my brain is screaming at me 24/7, while being told there is nothing wrong with me by the disability board and being told to "learn to live with this" by various medical "professionals".

No thanx...wheelchair is so much better than the insane 24/torture of severe aTinnitus, that takes every piece of joy you had left away from you...forever.

 

[Bam]

Here's another example of Susanna Reid talking about the extremes of tinnitus with her co-presenter. She certainly doesn't play it down:

This link will not play embedded but you can just click the link inside the box and it will load:



It's the same clip, but with a different intro showing how tinnitus can wreck lives.

She is quite clearly very candid about her own tinnitus in these old videos, so why disbelieve her when she says she is suffering 3 years later? If you believed her when she said it was very mild, then why not when she tweets it's loud?

The only attention seeking I've seen her do is bringing public awareness to the condition.

Anyway, I think this debate has reached its conclusion.

I'm getting me some healing hands ASAP! I'm gonna be like Tracey and reiki the shit out of this mother*****!

 

[Jazzer]

So crazy! I once had a colonoscopy with no sedation (long story) which is supposed by many to be horrendous and it didn't worry me! Over on a flash. Tinnitus on the other hand....

Likewise Ag - colonoscopy, also nasal polipectomy without An.'

 

[Ed209]

Likewise Ag - colonoscopy, also nasal polipectomy without An.'

Same. I said I didn't want or need sedation. I figured I'd just had my bare chest cut open and vacuumed with a long steel pipe without sedation, so I'm sure stucking a flexible camera up my **** can't be any worse than that .

I've had both my shoulders injected with steroids and had multiple physio sessions for my shoulders and knees. This year and last year I've been plagued with health problems and I feel like I've seen every specialist going. I've got chronic rhinitis that drives me mad; I have to constantly clear my throat and the steroids don't touch it.

 

[Bam]

Are you crippled? Are you missing limbs?.

Fishbone every one is different mate. I hate to say this but I can 100% say that I would prefer to be crippled than have this. I honestly just think that for someone like me it would be far better. And I am certainly not alone on that.

Not only am I more confident of an eventual cure for spinal injuries, I'm far more confident of my ability to sit in a chair and rationalise my situation of being unable to walk than dealing with this invisible torturous shit every second of every day.

For me the comparison is void because tinnitus is infinitely worse.

Not what everyone wants to hear I know.

 

[coffee_girl]

Some days i think i would trade my left arm to get rid of the paranoia of T. I don't mind the sound of Tinnitus itself, if it was guaranteed to stay the same for all of my life then it wouldn't be so bad...it's the constant fear of something happening around me that might lead to worsening T that bothers me. But then again the grass is always greener on the other side. Maybe a crippled person will trade their hearing for a pair of legs so they can run again?

 

[Red]

Fishbone every one is different mate. I hate to say this but I can 100% say that I would prefer to be crippled than have this. I honestly just think that for someone like me it would be far better. And I am certainly not alone on that.

Not only am I more confident of an eventual cure for spinal injuries, I'm far more confident of my ability to sit in a chair and rationalise my situation of being unable to walk than dealing with this invisible torturous shit every second of every day.

For me the comparison is void because tinnitus is infinitely worse.

Not what everyone wants to hear I know.

Grass is greener. I used to rationalize that I'd rather have severe T than chronic pain with mild T. I used to rationalize that I'd rather be crippled than chronic pain.

...Then I realized this was silly because a lot of these conditions are co-morbid. And mild T can easily turn severe anyway. Life is so incredibly unfair to the point it's more likely you'll be stuck with both than an either/or situation.

I get it. Bargaining is a stage of grief. But there is no one to bargain with so this grass is greener stuff is pointless. Even if you believe in a god, it's not like he is some genie who grants wishes.

It does no good for anyone to compare this stuff.

 

[Ed209]

Maybe a crippled person will trade their hearing for a pair of legs so they can run again?

As Bam said, we are all unique and express pain differently and feel pain differently.

Someone once said on here that it's obvious people would rather lose a finger than a leg, and I said, 'tell that to a professional concert pianist'. We all have different ideals, and view the world through our own unique lens.

 

[Greg Sacramento]

@Bam Physical pain can also be unreal. I have very severe high pitch somatic tinnitus. I also have very severe mouth pain from cut and damaged nerves in my mouth that getting worse every day. My mouth is falling apart. All my upper bio complexes are giving me pain of torture. @fishbone understands as he told me about someone else that has my conditions. You may have or not visited patients in trauma acute care, but I have and there's nothing more real than that.

 

[fishbone]

Some days i think i would trade my left arm to get rid of the paranoia of T. I don't mind the sound of Tinnitus itself, if it was guaranteed to stay the same for all of my life then it wouldn't be so bad...it's the constant fear of something happening around me that might lead to worsening T that bothers me. But then again the grass is always greener on the other side. Maybe a crippled person will trade their hearing for a pair of legs so they can run again?

I see that you have been dealing with the tinnitus for about 2 years or so. I truly get the fears and worries that you face and others. From my 30 years of dealing with this condition, I have done more damage to myself and my ears by the constant abuse that I have given to my ears. The years of parties, frat parties, bars, events. I damaged my hearing and my tinnitus got much much louder.

Also, Meds made my tinnitus much much worse a as well. I'd say that I have had a stressful life all my life and it might have contributed, but not much for me. Keeping stress low in our lives is a must whether we have tinnitus or not.

I want to tell you that you should try to keep on living your life. if you have a fear of noise and scared that some accident, might make your tinnitus louder, possibly carry ear plugs with you (I carry them as well). If this fear truly grips you and is holding you back in your life, then as I always say - Speak to a counselor or therapist or talk it out with family or a caring friend.

I have dealt with fear all my life. I have had some horrible OCDs that were just very unpleasant. With time and effort and patience it's very possible to overcome and move forward.

What I type may not always be the solution/answer some are seeking, but It might also help someone as well

Bless....

 

[Bam]

@Bam Physical pain can also be unreal. I have very severe high pitch somatic tinnitus. I also have very severe mouth pain from cut and damaged nerves in my mouth that getting worse every day. My mouth is falling apart. All my upper bio complexes are giving me pain of torture. @fishbone understands as he told me about someone else that has my conditions. You may have or not visited patients in trauma acute care, but I have and there's nothing more real that.

Guys this forum has a weird way of jumping on things and twisting them in to something that bears no relation to what people posted........I never said anything about pain. Never mentioned pain. Pain is not great. I feel for you Greg. Obviously I do. It sounds shit. But I said I would rather be a cripple in a chair than have tinnitus.

And I 100% stand by that. @Wolfears summed it up perfectly in his post so I have no need to explain.

And I don't think we posted these comments as a whimsical fantasy of swooping afflictions. Our point is that screaming in your own brain is infinitely more detrimental to your mental wellbeing than basically sitting down all day which we are all fairly accustomed to anyway.