I No Longer Have Any Strength to Face Another Day

[valeri]

This is what it's like

Day in, day out... I've had enough!

Who would have thought something like this is possible?!

 

[robHing]

Yes... I can feel your pain.
I am only the third year into suffering T.
You already have T eight years. Please hang in there.
May be @fishbone or @billie48 can also help.

 

[JohnAdams]

This is what it's like

Day in, day out... I've had enough!

Who would have thought something like this is possible?!

View attachment 21047

Are you aware of this drug that's in phase 2 clinical trials called fx-322? It might be the cure we all desperately need. I just tried to get in the trial but I'm not eligible. It regrows the damaged parts of our inner ears. Already shown to work in mice and humans. Sucks we have to wait until December to find out the results of this trial. We are all with you in this. Please have hope.

 

[valeri]

Are you aware of this drug that's in phase 2 clinical trials called fx-322? It might be the cure we all desperately need. I just tried to get in the trial but I'm not eligible. It regrows the damaged parts of our inner ears. Already shown to work in mice and humans. Sucks we have to wait until December to find out the results of this trial. We are all with you in this. Please have hope.

After Autifony failed I'm scared to even hope for something else.
That was a hard one to swallow.

 

[Joel31]

Are you aware of this drug that's in phase 2 clinical trials called fx-322? It might be the cure we all desperately need. I just tried to get in the trial but I'm not eligible. It regrows the damaged parts of our inner ears. Already shown to work in mice and humans. Sucks we have to wait until December to find out the results of this trial. We are all with you in this. Please have hope.

Just interested in how they know if the mice have tinnitus?

 

[Joel31]

This is what it's like

Day in, day out... I've had enough!

Who would have thought something like this is possible?!

View attachment 21047

Hang in there, I got through my first year of very aggravating T. It has literally been a living nightmare. Before I even wake up properly in the morning... there it is. I get in the car.. there it is. I get into bed.. here it is. I sit in the lounge room or a room... there it is. I sit on my computer, there it is. It's a never ending battle to deal with. My wife has it also, but she has this amazing ability to push it out of her mind. If I could only do this.

 

[valeri]

Hang in there, I got through my first year of very aggravating T. It has literally been a living nightmare. Before I even wake up properly in the morning... there it is. I get in the car.. there it is. I get into bed.. here it is. I sit in the lounge room or a room... there it is. I sit on my computer, there it is. It's a never ending battle to deal with. My wife has it also, but she has this amazing ability to push it out of her mind. If I could only do this.

8 years for me!
So I'm not new to tinnitus to believe "it will get better with time".
It didn't! It got worse.
And your wife probably has an amazingly mild tinnitus rather than amazing skill to ignore it! There is no skill to ignore severe tinnitus!
Thank you for your support!

 

[JohnAdams]

Just interested in how they know if the mice have tinnitus?

they didn't know that they did however know the mice had noise induced hearing loss because they induced it. Poor mice . I would bet my bottom-dollar that they also had tinnitus.

 

[fishbone]

Day in and day out life with intrusive tinnitus for me can be challenging. No single day is easy, each day I wake up and I say "what the hell is this noise". It's brutally loud, it's brutally scary. I still get up and take care of my daily business.

I wish there was a cure, I'd give my life to have a low hiss or low static noise again. I see no cure today for me and I do not know when a cure will be out. I do whatever I can to cope and live my life with this garbage hell that screams at me. TRUST ME it takes a lot strength, to live with such a brutal hidden beast that only we hear. YOU/WE have to have some kind of plan to adjust and live our lives. It's not easy at all, at my demonic level of ringing, it's very hard and I question many things. It is , what It is. I have one life and these ears are ruined and the ringing is hell.

Whether I quit my training, whether I permanently use hearing aids with maskers. Choices need to be made, we must be brave and take a stand against our issues and have a plan. If you have family lean on them. I have 3 dogs (2 semi sick), my drive and motivation.

I use hearing aids, with built in ocean noises to help me out at times(a lot lately). I go to the gym and exercise to help me cope with the hell that screams out my head. You have to be PROACTIVE with tinnitus, you have to think of ways you can help yourself. Only YOU/ME/WE can help ourselves. No matter how good or bad our situation is, we need to take the stand and help ourselves.

Making adjustments for our lives is a must. Including/excluding things in our lives is a must(especially for me). I have cut out many people, who were not supportive of me and my ears. I will avoid holiday gatherings, with loud people. It's a sacrifice. I do this because I cannot further damage my ears. It's a hard life but what other choices do I or WE got?

I wish you the best and do know that we are all in the same boat and we support each other....

 

[John CC]

Hi Valeri I am new to this world of T, and as much as I wish I could offer you saige insights and ideas, with regret all I can over you is my support and understanding. Hold strong, listen to fishbone, and realize as hard as it is, you too can have his strength, and still find some redeeming features in this world. You will always have my support and understanding.
Wishing you the best.

 

[coffee_girl]

I don't know what I would do without fishbone's advice and insight.

 

[Michael B]

Since 2011 for me as well. Not a day goes by that I don't wake up and ask myself "What kind of a day is it going to be today?" I usually have my answer soon enough. Like the previous poster, I use a hearing aid on my really bad days and stream masking sounds. And like the previous poster, I've been using my hearing aid more regularly of late. Just remember you're not alone.
Mike

 

[valeri]

Day in and day out life with intrusive tinnitus for me can be challenging. No single day is easy, each day I wake up and I say "what the hell is this noise". It's brutally loud, it's brutally scary. I still get up and take care of my daily business.

I wish there was a cure, I'd give my life to have a low hiss or low static noise again. I see no cure today for me and I do not know when a cure will be out. I do whatever I can to cope and live my life with this garbage hell that screams at me. TRUST ME it takes a lot strength, to live with such a brutal hidden beast that only we hear. YOU/WE have to have some kind of plan to adjust and live our lives. It's not easy at all, at my demonic level of ringing, it's very hard and I question many things. It is , what It is. I have one life and these ears are ruined and the ringing is hell.

Whether I quit my training, whether I permanently use hearing aids with maskers. Choices need to be made, we must be brave and take a stand against our issues and have a plan. If you have family lean on them. I have 3 dogs (2 semi sick), my drive and motivation.

I use hearing aids, with built in ocean noises to help me out at times(a lot lately). I go to the gym and exercise to help me cope with the hell that screams out my head. You have to be PROACTIVE with tinnitus, you have to think of ways you can help yourself. Only YOU/ME/WE can help ourselves. No matter how good or bad our situation is, we need to take the stand and help ourselves.

Making adjustments for our lives is a must. Including/excluding things in our lives is a must(especially for me). I have cut out many people, who were not supportive of me and my ears. I will avoid holiday gatherings, with loud people. It's a sacrifice. I do this because I cannot further damage my ears. It's a hard life but what other choices do I or WE got?

I wish you the best and do know that we are all in the same boat and we support each other....

Hey fish!
I try, I really do!
I'll be 45 soon and I feel my best years have been wasted on this crap.
I lost my job, the only thing that was a resemblance of normal life, gone, all gone!

I've never been a full time mum or housewife, never.
Even though I don't consider myself a workaholic I worked very hard for the position I had, all gone.
And it wouldn't be hard to get another job if my ears aren't so reactive with low frequency noises, even driving is problematic.

This makes me feel STUCK! And this has caused a severe depression.
I see no way out of this situation because things are only getting worse.
I pray to god to take me, every day!

 

[Sleaford Mod]

Valeri, that photo more or less captures the human condition, not just life with tinnitus.

Looking at it and knowing the distress that you are in makes it difficult for me to know what to say. But I'll have a go.

The photo also serves as a reminder of why, personally, I have always found Buddhism to be so intriguing (not that I would describe myself as a Buddhist or know any Buddhists personally, nor is this response an attempt to evangelize on behalf of the faith), because it proceeds from that realization, namely, that life is utterly permeated with suffering that results from the fact that our existence is just so transient, so ephemeral, and not obviously suffused with any kind of meaning. And any stability we achieve is easily blown away when something vicious like tinnitus comes our way.

I am too busy to sustain an ongoing presence here, and so am going to make this quick and simple. My current problems these days are less to do with tinnitus and more to do with intermittent chronic pain that is almost going to involve major surgery at some stage.

To deal with that, I am deepening my mindfulness practice. That's because it helped with tinnitus and I am now hoping that it will eventually help me to manage that pain. Certainly, there's lots of evidence that it can. The problem for me is that - although I have become pretty good at managing severe, intrusive tinnitus - I am hopeless at living with even minimal physical discomfort. I loathe and resent every moment that I have to endure it and have no idea how others cope with debilitating, sometimes crippling physical issues and ailments, particularly those that are far worse than mine. So the hope is that maybe with mindfulness I'll eventually get some insight into how they do that.

In the end, for me, it has come down to following the David Benatar route or the Buddhist path. For anyone who hasn't heard of Benatar, the character Rust Cohle from the wonderful series True Detective pretty much popularised this previously obscure South African philosopher's outlook in the monologues that feature in some episodes. Here's one of them:



And here's the Buddhist blogger Brad Warner explaining why he disagrees with Benatar.

http://hardcorezen.info/is-it-better-to-have-never-been-born/5654

In closing then, that's all I have to offer, the possibility that continuing the struggle is still worth it. In my last post but one I have identified some helpful books and resources for anyone who may want to explore the mindfulness option for themselves.

Valeri, I don't know whether anything I have typed in my last two posts, or anything that Brad Warner says in his blog, resonates with you in any way. In the end, all I can do is describe an outlook and method that has worked to an extent with tinnitus (even though tinnitus still bothers me too from time to time), and that will hopefully help me to manage the other health conditions that have since come to the fore.

 

[valeri]

Valeri, that photo more or less captures the human condition, not just life with tinnitus.

Looking at it and knowing the distress that you are in makes it difficult for me to know what to say. But I'll have a go.

The photo also serves as a reminder of why, personally, I have always found Buddhism to be so intriguing (not that I would describe myself as a Buddhist or know any Buddhists personally, nor is this response an attempt to evangelize on behalf of the faith), because it proceeds from that realization, namely, that life is utterly permeated with suffering that results from the fact that our existence is just so transient, so ephemeral, and not obviously suffused with any kind of meaning. And any stability we achieve is easily blown away when something vicious like tinnitus comes our way.

I am too busy to sustain an ongoing presence here, and so am going to make this quick and simple. My current problems these days are less to do with tinnitus and more to do with intermittent chronic pain that is almost going to involve major surgery at some stage.

To deal with that, I am deepening my mindfulness practice. That's because it helped with tinnitus and I am now hoping that it will eventually help me to manage that pain. Certainly, there's lots of evidence that it can. The problem for me is that - although I have become pretty good at managing severe, intrusive tinnitus - I am hopeless at living with even minimal physical discomfort. I loathe and resent every moment that I have to endure it and have no idea how others cope with debilitating, sometimes crippling physical issues and ailments, particularly those that are far worse than mine. So the hope is that maybe with mindfulness I'll eventually get some insight into how they do that.

In the end, for me, it has come down to following the David Benatar route or the Buddhist path. For anyone who hasn't heard of Benatar, the character Rust Cohle from the wonderful series True Detective pretty much popularised this previously obscure South African philosopher's outlook in the monologues that feature in some episodes. Here's one of them:



And here's the Buddhist blogger Brad Warner explaining why he disagrees with Benatar.

http://hardcorezen.info/is-it-better-to-have-never-been-born/5654

In closing then, that's all I have to offer, the possibility that continuing the struggle is still worth it. In my last post but one I have identified some helpful books and resources for anyone who may want to explore the mindfulness option for themselves.

Valeri, I don't know whether anything I have typed in my last two posts, or anything that Brad Warner says in his blog, resonates with you in any way. In the end, all I can do is describe an outlook and method that has worked to an extent with tinnitus (even though tinnitus still bothers me too from time to time), and that will hopefully help me to manage the other health conditions that have since come to the fore.

Thank you!
I will have to re read your post few more times.
Before you leave are you able just to give me details of the mindfulness course you did? Is that the one that has 4-5 cd's or you just folllowed one meditation?

 

[Sleaford Mod]

Hi Valeri, I'll have a think about which resources have proved to be most helpful down the years and then I'll get back to you.

The only problem is that I can't do this today as I am quite busy. But by this time tomorrow, I will have posted some suggestions.

I am not intending to leave the forum, by the way. It's just that I get very busy with work and so am unable to maintain a consistent presence here. Six day weeks of up to 55 to 60 hours of work tend to be the norm for the job that I do for a substantial part of the year. Plus, I have long journey to and from work. That's the reason.

 

[MartinH]

Are you aware of this drug that's in phase 2 clinical trials called fx-322? It might be the cure we all desperately need. I just tried to get in the trial but I'm not eligible. It regrows the damaged parts of our inner ears. Already shown to work in mice and humans. Sucks we have to wait until December to find out the results of this trial. We are all with you in this. Please have hope.

Wonder how long the FDA is going to delay it...

 

[DebInAustralia]

Hey fish!
I try, I really do!
I'll be 45 soon and I feel my best years have been wasted on this crap.
I lost my job, the only thing that was a resemblance of normal life, gone, all gone!

I've never been a full time mum or housewife, never.
Even though I don't consider myself a workaholic I worked very hard for the position I had, all gone.
And it wouldn't be hard to get another job if my ears aren't so reactive with low frequency noises, even driving is problematic.

This makes me feel STUCK! And this has caused a severe depression.
I see no way out of this situation because things are only getting worse.
I pray to god to take me, every day!

Val,

my reactivity has significantly decreased along with my spikes, since having the stems last year. One of my noises too has disappeared (engine noise).

What have you got to lose?

 

[glynis]

@valeri ,
Life is tough with tinnitus and we all understand and at times we all need a shoulder to cry on or support to lift us up a bit.
We all care for you Valeri so please keep posting and make some friends on here and have support and can give support too!
I hope you get to have a lovely weekend xxx

 

[glynis]

@DebInAustralia ,
Great to hear your Stem cell treatment helped you and hope your breathing is better too..
love glynis x

 

[valeri]

Val,

my reactivity has significantly decreased along with my spikes, since having the stems last year. One of my noises too has disappeared (engine noise).

What have you got to lose?

Deb I really would not mind stem therapy but traveling for me is out of question.
Even a short car drive to a local store leaves me in agony.
I'm happy to hear it helped you, that's really good!
Thanks for your support!

 

[Wolfears]

Are you aware of this drug that's in phase 2 clinical trials called fx-322? It might be the cure we all desperately need. I just tried to get in the trial but I'm not eligible. It regrows the damaged parts of our inner ears. Already shown to work in mice and humans. Sucks we have to wait until December to find out the results of this trial. We are all with you in this. Please have hope.

I would be very careful with offering any hopes like this, because it is human nature to desperately cling to anything that could possibly end their suffering.
I have read many posts in which members made it very clear, that if such and such trial fails, they will be moving towards a permanent solution.

 

[MBH]

Hello valeri Sorry to hear you are in bad thoughts and I wish I could spread the cheer so that you can jump to better understanding of this crazy tinnitus. The harsh realization of the whole process going forward is unimaginable. But I like to believe and do believe in one's inner strength to pull through and you have it. In the maze of life inch your way back around and head another way. And in that way find little stones to a good path. I only think three months out only.

Anyway, please readjust yourself to feeling better.

 

[Sleaford Mod]

Valeri, I didn't think I'd get a chance to sit in front of a computer for the rest of the day and so am taking advantage of an unexpected opportunity to do so.

As far as following an 8 week programme to establish a mindfulness practice is concerned, I followed the one described in John Kabat-Zinn's book Full Catastrophe Living.

But I didn't bother with acquiring any CD's with guided meditations. I just did it without them.

I also didn't make it through the eight weeks the first time around. I gave up, as it didn't seem to be having an impact and the fluctuating, overpowering tinnitus I have was still calling the shots.

But I managed it second time through. The book itself makes a lot of a thing called the Body Scan meditation. But I just did straightforward sitting meditation for about thirty to forty minutes a day.

There's a very good chance that there are now YouTube videos featuring Kabat-Zinn and maybe online descriptions of the Body Scan and other methods that he advocates. But I haven't checked to see.

But there's a second option, one that I'll possibly be taking too. There's a book called Mindfulness for Health that is co-authored by Vidyamala Burch and Danny Penman. Their protocol s designed for people with conditions that cause chronic pain. But all you have to do is substitute the word 'tinnitus' for 'pain' if you decide to read it. Their approach is equally applicable for tinnitus sufferers.

It's possible to preview this book online at the usual website named after the rainforest. I was quite impressed by it and purchased a copy. The accompanying CD walks the listener through several guided meditations, including the Body Scan. I read the book but didn't follow the 8 week course described in it because my own practice was going fairly well by then. So I'm saving it as a fall-back resource if the chronic pain I have becomes less intermittent.

Out of the two books, I have a preference for Burch and Penman.

I haven't watched anything all the way through, but definitely saw Burch talking about how she deals with her health issues on YouTube. Plus, there may even be a Breathworks programme or Counsellor in your part of the world if you need additional support from someone within this organisation (that I think Burch set up). A lot of people who are affiliated with Breathworks have chronic health issues as far as I know. But I am a bit of a Lone Wolf and have never had any dealings with them. Here's a link to the relevant website:

https://www.breathworks-mindfulness.org.uk/

Anyway, I hope this helps. I do recommend that you look into this whole business with a sceptical attitude before you take the plunge. For example, I am put off by people with New Agey sounding names like 'Vidyamala'. Plus, I have no time for the bells and whistles that go with the territory. By that I mean things like reincarnation.

But the above authors don't go on about any of that anyway, fortunately.

There's one other thing: I 'fell off my bike' lots of times when it came to this practice. It was like snakes and ladders for ages before I got anywhere with this method in terms of my mental state, and even then progress was slow, incremental and shaky. Acquiring some sort of stability, a modicum of mental equilibrium, is not to be expected for a while. And I still have bad days (more in connection with pain than tinnitus). But it has definitely been worth it overall.

So bear all that in mind. And good luck if you decide to dip your toes in the water!

 

[Wolfears]

This is what it's like

Day in, day out... I've had enough!

Who would have thought something like this is possible?!

View attachment 21047

That is a very good pic, but the reality of tinnitus is so much worse.
If the rope burns through, it means peace (death).
In reality, the rope is not on fire...the only way out is for that person to cut the rope himself, which is much more horrifying in my opinion.

 

[JohnAdams]

Wonder how long the FDA is going to delay it...

Yeah the FDA..... I hope not. They are doing a combined phase 1 and 2 right now. From what I've read the combined phases are designed to speed things up. Theres huge $$$$ here so I think they want to get it out.

 

[JohnAdams]

After Autifony failed I'm scared to even hope for something else.
That was a hard one to swallow.

Yeah. I understand.

 

[Jazzer]

Reaching any accommodation to Tinnitus seemed a total impossibility for me.
I lost my silence, my peace of mind, my composure, my passion, my career, etc.....

The only thing that I have ever been truly good at was my music, my trombone, my jazz.
I was a natural, on stage in jazz clubs, festivals, cruise ships, for over 50 years.
I loved my music, I enjoyed my ability, and I loved my life.

Now that has all gone, and in its place I have loud, unrelenting noise.
I am nothing it not a realist.
We can never put the clock back.
I understand all the implications.
In essence I hate it.

My mindset very gradually improved only when I came to accept that my lovely old life had gone for ever.
All that was finished.

So what do I have left?
My lovely misus, my family, my friends, my three adorable pussycats, my new found friends on Tinnitus Talk.

So what do I now do with myself?
I do the shopping, the gardening, the ironing, the vacuuming (with plugs in)...etc....
It's not such a glamorous life, of course, but I don't want to just throw it away.
One of my daughters, a school teacher, has constant Tinnitus - I need to be an example.
I would hate to let anybody down.
Acceptance takes time - but for me it was possible.

 

[valeri]

That is a very good pic, but the reality of tinnitus is so much worse.
If the rope burns through, it means peace (death).
In reality, the rope is not on fire...the only way out is for that person to cut the rope himself, which is much more horrifying in my opinion.

Yes, the rope is on fire every day, burning slowly but we still hang on to it hoping something or someone will put the fire out!
Eventually everything comes to an end, and we know what the end looks like.
So sad

 

[valeri]

Reaching any accommodation to Tinnitus seemed a total impossibility for me.
I lost my silence, my peace of mind, my composure, my passion, my career, etc.....

The only thing that I have ever been truly good at was my music, my trombone, my jazz.
I was a natural, on stage in jazz clubs, festivals, cruise ships, for over 50 years.
I loved my music, I enjoyed my ability, and I loved my life.

Now that has all gone, and in its place I have loud, unrelenting noise.
I am nothing it not a realist.
We can never put the clock back.
I understand all the implications.
In essence I hate it.

My mindset very gradually improved only when I came to accept that my lovely old life had gone for ever.
All that was finished.

So what do I have left?
My lovely misus, my family, my friends, my three adorable pussycats, my new found friends on Tinnitus Talk.

So what do I now do with myself?
I do the shopping, the gardening, the ironing, the vacuuming (with plugs in)...etc....
It's not such a glamorous life, of course, but I don't want to just throw it away.
One of my daughters, a school teacher, has constant Tinnitus - I need to be an example.
I would hate to let anybody down.
Acceptance takes time - but for me it was possible.

I understand and also try to accept the harsh reality.

I hope this doesn't come the wrong way but if I was 60 or 70 it would be easier to accept.

But at my age I feel life has given me not much at all.

I didn't live at all!

Things I worked hard for all gone or can't be enjoyed any more.

There's only so much pleasure I can find in house chores while I see people my age traveling, socialising, attending events....

And this is not just about me but my family as well.

Guess who will not be attending daughter's formal coming up in November???

And that breaks me into pieces!!!