Still Feeling Vulnerable...

[Jazzer]

Dear friends - this is a post that has been on my mind for some days now.

As you know, I absolutely do believe in a positive mindset.
If we are to survive this wretched dilemma, that is obviously a must.
However, having said that, I still regard myself as a real sufferer.
The worst aspect of Tinnitus for me is the fact that the hiss level is very loud and of course persistent and permanent.

My wretched acoustic trauma entered via my left side, and that is where the region of nerve damage is of course.
I perceive it in my left ear, and in my head.
It never seems to vary in volume, and is still very distressing.

In the early days, four years ago, I was suicidal from the onset - day one.
I could see no possible way of coping with this whatsoever. Absolute sheer hell on Earth.
I wanted my precious Sylvie to take me to Dignitas.
She flatly refused.

"If that is what you want then you will need to find someone else to take you there.
I love you, but I will never do that for you."

I was in a permanent loop of despair- panic - exhaustion - despair - panic - exhaustion....

I managed to work on, and improve my technique of relaxation, involving a soft mouth, and loose hanging jaw, which set me body free from stress.
I found that meditation was still possible for me, I can self hypnotise in just a few seconds, and am 'out for the count.'
I practice this daily.
I no longer seem to panic, though I have to admit that despair is sometimes not all that far away.

I think you all know that my glorious jazz life had to come to an end, before it quite literally killed me.

So now I am left with considerable ongoing noise, which at times is very tough to cope with, though to most outward appearances, I do seem to cope.
The ongoing monotony of this heavy noise is still tough for me to handle.

I do not feel that I have reached an adequate place of safety yet.
I can not claim the stoical acceptance of @fishbone, or the calm composure of Ed209, though I try to emulate both.

Excuse me for expressing my vulnerable side folks.
I laugh and joke, and my sense of humour is intact, as you may have noticed, but this is my downside.

Any help from you guys and gals would be so much appreciated.
Jazzer
Dave
xx

 

[Ed209]

Dave, I can relate to every single word that you wrote; especially being a musician. Your personality is infectious, and you bring so much joy to people here on TT. It's never nice to see someone suffering, but then I suppose that's why we're all here, or at least why we all signed up. We can all relate to each other, much better than we can to people on the outside, who have no idea what it's like to have noises in your head.

You can message me any time, and I'm sure the same will be said by many others, as we all care very deeply about how you feel. If I were you I'd take stock of the day and go a bit crazy. It's nice weather so go out somewhere and relax.

It's for reasons like this that I want to raise money for tinnitus research. Take care of yourself Dave, you're never alone.

 

[Jcb]

Dear friends - this is a post that has been on my mind for some days now.

As you know, I absolutely do believe in a positive mindset.
If we are to survive this wretched dilemma, that is obviously a must.
However, having said that, I still regard myself as a real sufferer.
The worst aspect of Tinnitus for me is the fact that the hiss level is very loud and of course persistent and permanent.

My wretched acoustic trauma entered via my left side, and that is where the region of nerve damage is of course.
I perceive it in my left ear, and in my head.
It never seems to vary in volume, and is still very distressing.

In the early days, four years ago, I was suicidal from the onset - day one.
I could see no possible way of coping with this whatsoever. Absolute sheer hell on Earth.
I wanted my precious Sylvie to take me to Dignitas.
She flatly refused.

"If that is what you want then you will need to find someone else to take you there.
I love you, but I will never do that for you."

I was in a permanent loop of despair- panic - exhaustion - despair - panic - exhaustion....

I managed to work on, and improve my technique of relaxation, involving a soft mouth, and loose hanging jaw, which set me body free from stress.
I found that meditation was still possible for me, I can self hypnotise in just a few seconds, and am 'out for the count.'
I practice this daily.
I no longer seem to panic, though I have to admit that despair is sometimes not all that far away.

I think you all know that my glorious jazz life had to come to an end, before it quite literally killed me.

So now I am left with considerable ongoing noise, which at times is very tough to cope with, though to most outward appearances, I do seem to cope.
The ongoing monotony of this heavy noise is still tough for me to handle.

I do not feel that I have reached an adequate place of safety yet.
I can not claim the stoical acceptance of @fishbone, or the calm composure of Ed209, though I try to emulate both.

Excuse me for expressing my vulnerable side folks.
I laugh and joke, and my sense of humour is intact, as you may have noticed, but this is my downside.

Any help from you guys and gals would be so much appreciated.
Jazzer
Dave
xx

I'm sorry man, like Ed said we are all here for you. I know you have been through a lot and the fact you're still standing is a testament to your strength. It's ok not to feel postive sometimes, it's so damm hard to do this. Have a cry, go for a walk, have a scream (with ear muffs on obviously ) find something that's good outlet for this. I know you giving up your jazz has had a knock on affect, I'm truly sorry for this.

Don't suffer alone, we are all here to listen and help anyway we can.

I'm here for you mate.

 

[glynis]

Hi @Jazzer,
I totally understand how you are feeling and the sever side of tinnitus is tough going and mine never stops.
Lots of love and hugs are coming your way and support...
Love glynis

 

[Nanny chocolate]

Oh Dave,
You have been, and still are, such a wonderful support to me and others.
T is a b....r and hard to bear.
Trying to be positive all the time is such hard work and you are grieving for your life with music.
Be sad, be angry, be anxious but when you are feeling so down then let yourself be held while you regain your strength.
Warmly Eve xx

 

[glynis]

@Jazzer ,
You light up Tinnitus Talk with your humour and support but tinnitus can be tough for us also and the support from friends on here is a blessing even for me.... .
Love glynis x

 

[Michael Leigh]

I do not feel that I have reached an adequate place of safety yet.
I can not claim the stoical acceptance of @fishbone, or the calm composure of Ed209, though I try to emulate both.

HI @Jazzer

I am sorry to hear of the discomfort and distress that you are still in with tinnitus. You have had this condition for as long as I have and also caused by "loud noise". Tinnitus affects each person differently. Mild tinnitus to one might seem severe to another. So no-one can know what someone else is feeling. A person's psychological make up and whether they are positive or negative thinking plays an essential role in the way they are able to manage and live with tinnitus. @fishbone stalwart personality, I feel is aptly described by the Avatar on this profile. As if to convey a message: whatever adversity comes before me I will overcome it and be triumphant. This belief certainly works for him and can inspire others that read his posts. @Ed209 you have described to be calm and composed. His approach to handing tinnitus and life is different, and works for him and can be just as effective and be inspirational to others. We learn from each other if we want to that is.

In order to cope and manage with "noise induced" tinnitus, one has to reduce the level of loud noise their ears are subjected to. This does not mean keeping away or avoiding everyday normal sounds. I know you have played in a Jazz band for many years. Playing a musical instrument is very important to you and I fully understand that. However, if you are still playing in a band or playing the wind brass instrument - I believe it to be a Trombone or something similar? This could the reason your tinnitus is still giving you so much problems. For there doesn't seem to be any reduction in its severity. If this is the case, you may have to decide whether it's worth continuing subjecting your auditory system to this type of sound. I know it can be difficult to accept.

When noise induced tinnitus doesn't reduce in severity and seems to be getting worse, the usual reason is the ears are being exposed to loud sounds.

I hope things improve for you.
All the best

Michael

 

[fishbone]

Dear friends - this is a post that has been on my mind for some days now.

As you know, I absolutely do believe in a positive mindset.
If we are to survive this wretched dilemma, that is obviously a must.
However, having said that, I still regard myself as a real sufferer.
The worst aspect of Tinnitus for me is the fact that the hiss level is very loud and of course persistent and permanent.

My wretched acoustic trauma entered via my left side, and that is where the region of nerve damage is of course.
I perceive it in my left ear, and in my head.
It never seems to vary in volume, and is still very distressing.

In the early days, four years ago, I was suicidal from the onset - day one.
I could see no possible way of coping with this whatsoever. Absolute sheer hell on Earth.
I wanted my precious Sylvie to take me to Dignitas.
She flatly refused.

"If that is what you want then you will need to find someone else to take you there.
I love you, but I will never do that for you."

I was in a permanent loop of despair- panic - exhaustion - despair - panic - exhaustion....

I managed to work on, and improve my technique of relaxation, involving a soft mouth, and loose hanging jaw, which set me body free from stress.
I found that meditation was still possible for me, I can self hypnotise in just a few seconds, and am 'out for the count.'
I practice this daily.
I no longer seem to panic, though I have to admit that despair is sometimes not all that far away.

I think you all know that my glorious jazz life had to come to an end, before it quite literally killed me.

So now I am left with considerable ongoing noise, which at times is very tough to cope with, though to most outward appearances, I do seem to cope.
The ongoing monotony of this heavy noise is still tough for me to handle.

I do not feel that I have reached an adequate place of safety yet.
I can not claim the stoical acceptance of @fishbone, or the calm composure of Ed209, though I try to emulate both.

Excuse me for expressing my vulnerable side folks.
I laugh and joke, and my sense of humour is intact, as you may have noticed, but this is my downside.

Any help from you guys and gals would be so much appreciated.
Jazzer
Dave
xx

Awwwwwww Dave

I'm sorry that you are having a hard time. Dave I'll be honest with you. My tinnitus is here and it is very loud. I have no way of escaping this mess and having silence again. It is- what It is. There are many things in my life that have jaded me and I use to always ask WHY? Why did I have to bury my mom and dad? Why did I have to lose my child before he/she was born? Why do I have to display superman's courage everyday, when I get out of bed? Just WHY?

Life can be a sour one buddy and I DON'T ask WHYs anymore. I use to and i use to quite a bit. I have even shed tears while asking.

In affliction we gain extraordinary strength. This can happen IF we LET IT.

Tinnitus can change our lives quite a bit. It was Saturday night last night. I really wanted to go to the casino and drive out and just get away from home for 1-2 days. Dave the hell my life brings me is just horrible man.

I have my health problems and new ones that have been bothering me since being out the hospital. Being alone daily with body pain and a loud intrusive monster that pounds me 24-7. No support from anyone daily, just my 3 old and sick dogs. I constantly have 1 dog that is having seizures in my hand daily. It breaks my heart when things I LOVE die. I live a lonely life and tinnitus is a huge component of it. I hold this tiny dog in my hand as she is fighting for life and I try not to breakdown. This is each day now.

All of this is beyond horrible. Can I change this? No It is -what it is. I accept it and not fight it. In my opinion if we do not show positivity in negative affliction, then it will EAT US UP. The boiler is already set and it's very easy to add more fire to it. I use to add TONS of fire to it, there is no point anymore.

I suffer like all of you. I am respectful to everyone I see, unless they start dis-respecting me. My back has been against the wall all my life. I been doubted all my life. I been the underdog all my life.

My martial arts teacher, was telling a story on Friday night about how some of his teacher's smaller guys were too scared to go into the cage and fight against some of the bigger guys. He looks at me (I am not too tall i am about 5"7 and i weigh about 150). I am massive though and look like i weigh 180 because i use to bodybuilding and do power lifting. I told my teacher and grinned, hey I will volunteer ANYDAY

I have lived the life of an underdog and crushed all my obstacles and I still live the life of an underdog. Tinnitus, life can make us underdogs DAVE. I have to be positive or the wave will sink me back into the ocean. I have no one to help me, save me, hold me daily. No one to tell me it's gonna be ok, you will be ok. ITS ME TELLING these things daily and affirming it to myself. When I was born, I did not know just how ruthless this world was going to be. I earned all my scar badges/pain badges in my life and I have TOO many. I wear them with pride and I am proud that I am who I am. I never expected to be who i am today, so it makes me even more proud.

You have a loving spouse that supports you and loves you. I know you will pull through it buddy. I shared my story to let you know why I am so positive in my life.

My PMs are always open to you or anyone that suffers.

Bless you all

PS- I love how in the movie forrest gump, jenny says "Run forrest run"
Fishbone's attitude about life "Fight, keep Fighting, NEVER GIVE UP!"

 

[emmalee]

@Jazzer

Dave, will you ever play the trombone again? By this I mean would you ever consider playing smaller gigs on the rare occasion, or has it become too harmful where your tinnitus is concerned?

You have many friends here who admire your sense of humor and your compassion. Like @fishbone said, never give up!

 

[Michael Leigh]

@Jazzer

Dave, will you ever play the trombone again? By this I mean would you ever consider playing smaller gigs on the rare occasion, or has it become too harmful where your tinnitus is concerned?

You have many friends here who admire your sense of humor and your compassion. Like @fishbone said, never give up!

HI @emmalee

Hope you are keeping well. I hope Jazzer never decides to play the Trombone again in a band or practice with it. I realize this must be terribly difficult choice for him to make. I believe doing so is likely to make the tinnitus worse and definately it's not what he wants. I have corresponded with musicians at other tinnitus forums who are in similar position and had to stop playing their instrument completely, to prevent their tinnitus getting worse. Very sad but the fact is. To prevent noise induced tinnitus getting worse, one has to reduce loud sounds their ears are subjected to. This doesn't mean normal everyday sounds even those in the enviroment such as traffic sounds.

Michael

 

[New Guy]

@Jazzer

I'm sorry you're feeling this way and wish I could do something to make things better. I understand what you're feeling and hope things get better for you somehow.

 

[emmalee]

HI @emmalee

Hope you are keeping well. I have corresponded with musicians at other tinnitus forums who are in similar position and had to stop playing their instrument completely, to prevent their tinnitus getting worse. Very sad but the fact is.

Hi, Michael. I am doing well, thanks for asking.

Yes, I agree, it is very sad.

 

[Hazel]

Until finally you took off the mask worn by all those who supposedly have a positive attitude here. I'm waiting for your colleagues in the forum to also start removing the mask. It's just a matter of time and patience to discover the lie that they persist in maintaining

Are you here just to be right? To prove a point? Or to support others and get support, which is after all what this forum is about. Shame on you for derailing this thread for your own personal agenda.

 

[fishbone]

Are you here just to be right? To prove a point? Or to support others and get support, which is after all what this forum is about. Shame on you for derailing this thread for your own personal agenda.

I actually have empathy for him. His soul and mind is defeated and he needs lots of support and help. Maybe one day he can change, his negative ways....

 

[Hazel]

I actually have empathy for him. His soul and mind is defeated and he needs lots of support and help. Maybe one day he can change, his foolish ways....

Of course you're right. But then you're probably a better person than me, more forgiving and understanding

 

[Tempest]

Until finally you took off the mask worn by all those who supposedly have a positive attitude here. I'm waiting for your colleagues in the forum to also start removing the mask. It's just a matter of time and patience to discover the lie that they persist in maintaining.

Reminds me of this meme:

 

[Jazzer]

To all of those lovely people who responded to my cry for help and support today;
@fishbone, @Ed209, @Michael Leigh, @Jcb,@Nanny chocolate, @emmalee, @New Guy, @TracyJS
- I need to say that "I Love You All So Much" for caring so deeply for me, particularly as I well know that you are all coping with your own very real pain.

Every one of you is a gem of kindness.

I am well aware that I am into a massive life changing challenge.
Part of my work was on wonderful cruise ships, to the Caribbean several times, the Eastern seaboard, the St Lawrence River, Quebec, New York, the Mediterranean....etc....
where my fee payed for wonderful holidays for my adorable wife Sylvie.
Just a few years ago she suffered three separate bouts of serious cancer, and survived.
She is the most impressive person I have ever met. She is a true angel. xxx
Her work for the Royal Marsden, and other hospitals, takes my breath away.
Of course, I would love to give her the very best experiences possible.
Now, all that has gone, together with my entire income, and my delicious silence, of course.

Such a totally unnecessary shame.

But, of course, I have to move on from here.

I just hope I am up to the task.

Thank you again folks, I really needed your responses today,

There is so much love on this forum,

Thank you

Dave
Jazzer
xxxxx

 

[SugarMagnolia]

Excuse me for expressing my vulnerable side folks.

When our heroes reveal their vulnerability, it only makes them more endearing to us.

Any help from you guys and gals would be so much appreciated.

Help is something I cannot give because I am helpless. But gratitude and hugs I can give in abundance.

 

[glynis]

@Jazzer ,
Your a lovely ,well liked and a treasured member and all our love is with you ...
Love glynis x

 

[glynis]

Until finally you took off the mask worn by all those who supposedly have a positive attitude here. I'm waiting for your colleagues in the forum to also start removing the mask. It's just a matter of time and patience to discover the lie that they persist in maintaining.

Not nice to hear and shame on you.

 

[Michael Leigh]

Not nice to hear and shame on you.

@Equalizer is just being himself @glynis and for a moment I believed he had reached a new low with his post. However, there is a part of me which thinks he must be going through a particularly difficult time with tinnitus, to post such a message. At least I'd like to think that and he's not just being mean...

Michael

 

[dpdx]

HI @emmalee

Hope you are keeping well. I hope Jazzer never decides to play the Trombone again in a band or practice with it. I realize this must be terribly difficult choice for him to make. I believe doing so is likely to make the tinnitus worse and definately it's not what he wants. I have corresponded with musicians at other tinnitus forums who are in similar position and had to stop playing their instrument completely, to prevent their tinnitus getting worse. Very sad but the fact is. To prevent noise induced tinnitus getting worse, one has to reduce loud sounds their ears are subjected to. This doesn't mean normal everyday sounds even those in the enviroment such as traffic sounds.

Michael

I noticed my T goes up when I am outside and surrounded by sounds. What makes it bad is music playing at resturants.

 

[Ed209]

How you feeling now @Jazzer?

 

[New Guy]

@Jazzer

We need to vent our frustration every once in a while. It's better to let it out than hold it in and let it smolder. There are, and will be, days that I 'throw away' because t got the better of me. The secret is to let go of those bad days and start fresh the next day.

You're very lucky to have Sylvie. My wife has been there for me as well.

 

[Nanny chocolate]

You CAN, You WILL get through.
Love Eve xx
@Jazzer

 

[Greg Sacramento]

For most with an onset of subjective tinnitus it will get better. After my first severe subjective onset my tinnitus remarkably stopped brothering me at 3.5 - 4 years. I think what made a difference was a small drop due to ear healing from syringing. The rest of my rebound was due to safe welfare techniques taught to me by my wife. I actually have more education in body and mind than she does, but her experience provided a different outlook.

With my newer onset of tinnitus that relates to many severe physical conditions, my wife has said I'm not going to say that you will be able to live a normal life as this may place too much pressure on you. She said that what we can do is to try to provide you comfort with relaxing techniques and use safe physical therapy. I'm sure that Dave's wife provides the same.

https://blogs.psychcentral.com/positive-psychology/2011/10/are-positive-emotions-always-beneficial/

 

[Michael Leigh]

I actually have empathy for him. His soul and mind is defeated and he needs lots of support and help. Maybe one day he can change, his negative ways....

I agree with you fishbone and think @Equalizer must be going through a difficult time with coping with tinnitus....

 

[Jazzer]

Awwwwwww Dave

I'm sorry that you are having a hard time. Dave I'll be honest with you. My tinnitus is here and it is very loud. I have no way of escaping this mess and having silence again. It is- what It is. There are many things in my life that have jaded me and I use to always ask WHY? Why did I have to bury my mom and dad? Why did I have to lose my child before he/she was born? Why do I have to display superman's courage everyday, when I get out of bed? Just WHY?

Life can be a sour one buddy and I DON'T ask WHYs anymore. I use to and i use to quite a bit. I have even shed tears while asking.

In affliction we gain extraordinary strength. This can happen IF we LET IT.

Tinnitus can change our lives quite a bit. It was Saturday night last night. I really wanted to go to the casino and drive out and just get away from home for 1-2 days. Dave the hell my life brings me is just horrible man.

I have my health problems and new ones that have been bothering me since being out the hospital. Being alone daily with body pain and a loud intrusive monster that pounds me 24-7. No support from anyone daily, just my 3 old and sick dogs. I constantly have 1 dog that is having seizures in my hand daily. It breaks my heart when things I LOVE die. I live a lonely life and tinnitus is a huge component of it. I hold this tiny dog in my hand as she is fighting for life and I try not to breakdown. This is each day now.

All of this is beyond horrible. Can I change this? No It is -what it is. I accept it and not fight it. In my opinion if we do not show positivity in negative affliction, then it will EAT US UP. The boiler is already set and it's very easy to add more fire to it. I use to add TONS of fire to it, there is no point anymore.

I suffer like all of you. I am respectful to everyone I see, unless they start dis-respecting me. My back has been against the wall all my life. I been doubted all my life. I been the underdog all my life.

My martial arts teacher, was telling a story on Friday night about how some of his teacher's smaller guys were too scared to go into the cage and fight against some of the bigger guys. He looks at me (I am not too tall i am about 5"7 and i weigh about 150). I am massive though and look like i weigh 180 because i use to bodybuilding and do power lifting. I told my teacher and grinned, hey I will volunteer ANYDAY

I have lived the life of an underdog and crushed all my obstacles and I still live the life of an underdog. Tinnitus, life can make us underdogs DAVE. I have to be positive or the wave will sink me back into the ocean. I have no one to help me, save me, hold me daily. No one to tell me it's gonna be ok, you will be ok. ITS ME TELLING these things daily and affirming it to myself. When I was born, I did not know just how ruthless this world was going to be. I earned all my scar badges/pain badges in my life and I have TOO many. I wear them with pride and I am proud that I am who I am. I never expected to be who i am today, so it makes me even more proud.

You have a loving spouse that supports you and loves you. I know you will pull through it buddy. I shared my story to let you know why I am so positive in my life.

My PMs are always open to you or anyone that suffers.

Bless you all

PS- I love how in the movie forrest gump, jenny says "Run forrest run"
Fishbone's attitude about life "Fight, keep Fighting, NEVER GIVE UP!"

@fishbone - you are such a true friend. xx

 

[dpdx]

I agree with you fishbone and think @Equalizer must be going through a difficult time with coping with tinnitus....

@Michael Leigh do you like Smetana? Shoshtakovich?

 

[Jazzer]

Until finally you took off the mask worn by all those who supposedly have a positive attitude here. I'm waiting for your colleagues in the forum to also start removing the mask. It's just a matter of time and patience to discover the lie that they persist in maintaining.

Yes Eq - my approach and my attitude is still positive - hopeful - looking for the best way forward.
However, I have suffered a massive life changing experience, which I am struggling to accept just now, but I hope to come through all this.
Reflecting on the love and support I have been shown on here today, compared to your spiteful cynicism, your comments do not figure in my equation.

Just how does a positive attitude represent a lie?
Would you recommend a negative one.?