How My Life Has Changed

Hi Folks,

I was driving to the market and thought about some stuff and I was like "WOW, this tinnitus is super loud and my hearing is a total mess". I also thought about "How my life has changed and things are so different in my life compared to other people"

I just got home and I wanted to write a post of encouragement for those that have had their life change because of the tinnitus or hearing loss.

You see folks, I am an active guy and very social. I make friends in the gym, I train newcomers in the gym and advise them on lifting weights. I advise newcomers in my martial arts and teach them to be better artists. I come here and I advise you folks on how life can be managed with tinnitus and how to help protect your ears.

So, I can make friends and can fit in very well. The issue that I face and many of you do as well is that my tinnitus has changed my life. My ringing is super loud and my hearing is beyond horrible. I'd love to meet more people and socialize but this ringing is a nightmare or it can be.

I have come across not too many people (outside this forum), that truly understand the HELL we live with. People will NEVER get it until tinnitus affliction hits them. We cannot convince many people to understand and feel our pains.

I think to myself at times just how lucky I am to be single and to be able to call my own shots in life. We have a life that is very different from other people. Our ears can be affected by many things and very easily too. I was thinking to myself that it's ok to have tinnitus. It's ok to be ME/YOU/US. It's ok to try to protect your ears and show yourself extra love/care. IT'S OK, it really is.

I want all of you to show yourselves as much love as possible. YOU FOLKS are the priorities in your life. NOT the world and the expectations that society can put on us. Not the family members that don't understand. Not the friends that don't understand.

I want all of you to love yourselves, like there is no tomorrow. I want all of you to be proud of the life you live. YOU/WE/US live with an invisible monster 24/7. You folks are the strongest people I know, tinnitus is a life changer/game changer and you guys are rising to the top and this forum is your place of love.

Yes, life is different now. Yes, things have changed. but IT'S OK. we can slowly change and adapt too. We can create new activities that are safe and supportive of our tinnitus. As I always say in my posts, we need a new strategy in life now.

Everyday I try new things to make my life better. It's small step, new ideas, small implementations. Just doing something each day can have a great impact on our lives. Creating new habits is never easy, but if we stick to it, it can eventually get us somewhere.

I write this post because I know MANY of you good people are struggling and it's a brutal life for me as well. We just need to keep that fire/passion/desire burning inside us. All of us will move forward. Some may move faster than others, but all of us can move forward and adjust to the tinnitus.

I am very proud of who I am and I am proud of you folks. Don't ever let ANYONE make you feel less. Most would never make it with the ordeals we live with.

Life has changed, but we can create new habits, love ourselves more and never let tinnitus hold us back.

Bless all of you and I hope my message gives you folks hope/courage......

 

You should be very proud of the person you are fishbone. You are a wonderful, caring person who is such a valuable member of this community.

Your messages do more than give us hope and courage, they show us how not to give up and give in to tinnitus. This is our new reality and we have no other choice than to live with it, the best way that we can.

Thanks for yet another positive post, fishbone.

 

I believe that my afflictions and suffering are the greatest gifts, I have gotten in this life. I use these gifts to help those that suffer. I use those gifts to have the ultimate empathy and love for those that suffer. I am grateful for my life and how I can help and love those that suffer

 

For you fishbone......

you are a river.

the rocks will
break you.

the valleys will bend you.
but you will never
stop.

because that is what you do.
you flow.

 

Dear dear fishbone,
you truly are such a gem of a guy.
You are clearly suffering harder than ever, and your very next thought is for all of us struggling so hard also.
I love you like a brother. xxx

My day is hard - So noisy today.
In reality every day is the same of course.
Tonight I am leaving the house in Surrey, England, to take my two precious grandsons who are 19 and 17 up to Holland for a break.

Their mum (our daughter Michelle) died of breast cancer 10 years ago aged 36, and their dad Rob died of oesophageal cancer in November past at 48.
They are lovely boys, and are struggling with their loss.
We leave at 10:30pm this evening, put the car on the Eurotunnel train to Calais, then from 3:00am we drive up through France and Belgium into Holland, for a week in a rented bungalow.

Obviously I wish I was 100% fit, but I need to give them a lovely break with my Sweetheart Sylvie and myself, and will do my level best!

I feel such love for all of us who suffer so much.
Thinking of all you lovely guys and gals,
you truly are a lovely bunch of people.
Jazzer
Dave
xxxx

The family before the devastation


Sammy and Aaron


Sylvie and Sammy


My beautiful wife Sylvie
who is a surrogate mum to the boys

 

@Jazzer,
What lovely grandsons you have and so young to loose both parent's and the struggle it must be for them and your loss of your beautiful daughter and son in law.
Enjoy your holiday with your presious grandsons and Your wife whom are their rock and your both lovely people .
Have a lovely time Dave you deserve it.
love glynis x

 

Dave, I am at a complete loss for any words, what does one say? Enjoy your trip, you all deserve this time together. Your grandsons will never, ever forget you and Sylvie, you will live on in their memories for their entire lives. The true legacy we leave behind is how much we were loved and admired.

 

Lovely photos Dave, I’m sorry for your losses. I hope you enjoy your holiday with your loved ones. What an adventure, it sounds very exciting.
@Jazzer

 

Dave, wish I could give you a big manly hug, don’t want to get soppy with you of course..... you are a star my man I really mean that you’re such a gent. Your grandchildren will wether the storm and with people like you and Sylvie to guide them they will be all the better for it.

“No person is ever truly alone. Those who live no more, whom we loved, echo still within our thoughts, our words, our hearts”

 

Hey nanny chocolate, how are things?

 

@Jazzer
Have a wonderful holiday. You're an inspiration.

 

Hi how are you?
Things have been ok, had some better days.
T turned nasty again yesterday, the brute.
On very tired days it’s hard to manage but that’s common for all of us.
Let’s see what this week will bring for all of us x
@Jcb

 

I’m ok thank you, lovely weather so always brightens the mood. Oh no, I’m sorry, that’s the problem T is so unpredictable and just when you think you may be getting over that bump, it comes back with intensity to say hello old friend. Yes I agree let’s see if this week will be enjoyable.

 

Lovely words and thoughts Ema,
thank you so much,
Dave
xx

 

“I have to tell all of you guys and gals,
T.T. mates are just the best......xxx”

 

@Jazzer you are such a beautiful soul. And so is your wife. Your grandkids are so handsome and I hope you all enjoy the holiday together. So sorry for the loss of their parents at such a young age.

I love the photos you shared with us!!!

I love what @Jcb wrote. And so many others.

I hope I am not on your ignore list. But, those words are so true. Finding small steps to just improve our lives and those around us.

 

Star - you have been truly special to me from your very first words a couple of years ago.
“Ignore you.......NEVER!”

There’s quite a handfull of us who I believe suffer severely. No strangers to pain and disappointment, we make tremendous efforts to sustain each other.
Almost a club within a club, we seem to share a common philosophy that love, support and kindness might even help others to heal.

In a very real sense ‘we have each other’s backs.’

Love all you guys,
Jazzer
Dave
xxx

 

@Starthrower why would I ignore you? You have been kind to me

It takes a lot for me to ignore someone. Some folks have earned it, but you for sure are not ignored....

 

hello friend,
I have read many of your texts here, always with a positive mentality and encouraging all the people who suffer, especially the new ones, I do not know you but I know you are a great person with a great heart, I admire your courage and determination, always victorious in each day, thanks to this forum for having people like you, who will never give up and help, is it true, we are another class of people, with a noise that is part of our life, and who cares?
When the fear of tomorrow has been lost, we will fully live our lives, perhaps different,
for example I was a great athlete and I can not do that activity anymore,
I am astonished by many people recommending practicing sports of any kind, if it is of high intensity to my is horrible, I recommend not doing it to people,
I think they get worse with the practice of intense sport, so has been my experience,
soft sport if I recommend.

 

Thank you for the kind words. In life I always believe in helping others and paying it forward as much as I can. These ears and this tinnitus are horrible. I accept what I face each day and do my best to never let anything hold me back. Sports/athletics and my faith have saved my life. each day I involve it and I cherish it. I gave up sports/lifting/martial arts for many years after my fibromyalgia started. It brought on LOTS of depression for me. As I was my parents caretaker and nanny, I used sports and my faith to escape the horror I faced each day. I have probably been in the ICU/ER of the hospital over 100 times. I have had a very challenging life from the very beginning.

In regards to sports, I am in the gym 4-5 days a week and I train in my martial arts about 4-6 times a week. My hearing is poor and the tinnitus is loud/intrusive. I accept it and do not fight it. I love my sports/martial arts and will not let tinnitus stop me from training. I do feel that my tinnitus and hearing has gotten a tad bit worst since doing my martial arts, and that's ok. I am not saying for you folks to do this, but I love my martial arts and fitness routines too much and will never give it up.

My ears have been ringing louder than usual, so I make use of my hearing aids with the built in ocean noise. It lets the brain hear another noise that tranquil and It works great and refreshes the mind. In life its all about making sacrifices. Only YOU will know which ones are worth making. As I am growing older, I feel like the complex puzzles of life are slowly being solved now. It has taken so so long to figure out this difficult life, but each day we can get closer to our goals and dreams.

We just need to NOT stop and keep working at our goals. Keep working at our dreams. Do not let the ringing throw you off the track and stop you from moving forward. I been in all of your shoes before and know your challenges. I been there and I truly can say that "things can work out". It may take time, but life is going to be ok. Believe in yourself, push yourself to greatness. It is all possible, we can make our dreams come true......

NEVER GIVE UP!

PS- Being good to people and helping only brings back goodness and good karma. I was in the gym and I usually make friends with all the bodybuilders and elite athletes. One of my new friends was telling me about his niece being sick and overweight. She's 8 years old and is overweight and has tons of medical issues. My heart broke and I told him and advised him on a diet for her. I told him if I can help in any ways, please let me know.

We need more people helping others. Loving others. You do good, you get rewarded. I truly believe that!

 

Thank you very much. I’m struggling today and your post helped me.

 

Hi @fishbone,

Thanks for all your posts encouraging others to "keep the faith"--so to speak. I fully agree with you that it's important to help others on their own life's journey in whatever way we can. In that regard, I truly believe that even when we think we're are so down and out that we couldn't possibly have anything beneficial to share with another, that that's almost NEVER the case.
-
I'd like to turn to an area that you seem to have an expertise in, or at least some positive experience with--TRT. Even though I've heard it mentioned numerous times, I still don't have a clear idea on what it does, how it works, how one would go about delving into it further, etc. Because I don't handle stress very well, I've tended to stay away from the threads and posts where there's a great deal of intense disagreement on it.

The main reason I haven't followed up on it however, is because it's been my impression you need to go through some kind of professional, and pay fairly large amounts of money, using some fairly sophisiticated "accessories" to see it through to the end--perhaps many months or longer.

Then, just this morning, I ran across a post by a man on a ME/CFS forum I often visit. His post gave me some new insights into TRT, which makes me think it might be FAR easier to delve into and experiment with than I had thought possible. I'll paste his post below, and would appreciate any comments you may have on it. -- Thanks for any input! -- P.S. People with CFS have generalized sensory processing disorders, and many of them having extreme sound sensitivities. I didn't know for years my extreme sound sensitivity was called hyperacusis. -- @Michael Leigh

Here's THE POST:

TINNITUS RETRAINING THERAPY. I had HORRIBLE sensitivity to sound, and tinnitus retraining therapy SAVED me. The sensitivity was so bad that I was literally on the verge of ending it all, I thought there was no hope, I thought there was no chance it would work, but I had to give it a shot, and it WORKED. I highly, highly, highly recommend it to all CFS patients suffering with sound sensitivity (hyperacusis). It works for all types of sound sensitivity, no matter the cause. It is the only CFS symptom that I have ever been able to improve. If sound sensitivity is something you are struggling with, please please please try tinnitus retraining therapy. I did it without spending a dollar. All I did was listen to this video

ruido rosa atenuado con ruido marrón...

in headphones at a level so low that if I turned it any lower it would not be audible. And I listened to that for every moment of the day that I could, and then when I would get used to it and forget I was even listening to it, I would turn that up one, and I just continued that process, but then when I was up to a reasonable volume on that video, I switched over to this video

pink softened noise severe hyperacusis sound...

and did the same thing with that video, starting from a barely audible volume and working my way up. I spoke with an audiologist about this, and she said that it is all about retraining the brain's involuntary emotional response to sound. We need to re-teach our brains what a normal level of sound is, and this is how we do it. The more noise you can expose yourself to without freaking out, the better. My rule was that I would spend as little time in silence every day as humanly possible. The more time you spend in silence, the more you allow it to progress. I was so severe that I couldn't tolerate the low, barely audible whirr of the AC in my place. Now I am pretty much back to normal.

If you have any questions, please ask me, I would love to help in any way I can.​

 

Thanks for your post, appreciate it. I probably had hyperacusis for 3-4 years before I knew what it was. i'd have pain in my ears and I was very sensitive to noise. Even noise that wasn't loud would bother my ears. The pain was terrible and it was a mess. I found an audiologist that was reputable and he told me that I had hyperacusis and explained what it was. He suggested that I try TRT and I did. TRT can be expensive and it can take 9-12 months for it to work.

I never push TRT on anyone, but I will defend it against those people that flame it and never tried it. We all have opinions, BUT to say that it doesn't work since THEY never tried it is pure nonsense. It does cost money and it takes extreme dedication to make it work. I wasn't a huge fan of it honestly as a teen. I did it anyways and I am grateful for it and my ears do not have pain, like that anymore.

It's up to you good folks to try it or not. I never push or suggest it to anyone. If you do try it great, if not that great as well. YOU folks make your choices....

PS- There were many times, that I wanted to quit the training. You have to be positive and be dedicated... if you want any chance for TRT to work for you....

 

Hi @Lane

Although you asked @fishbone a question on TRT you have also mentioned my name in your post. Fishbone and I have had TRT and are veterans to "noise induced tinnitus". I have a lot of respect for his knowledge, expertise and experience with this condition which he freely shares in this forum to help people. I don't think I would be wrong in saying: what he doesn't know about tinnitus, and more specifically, "noise induced tinnitus" would be able to fit on a postage stamp. Therefore, I shan't encroach on this thread for too long.

TRT is a complex treatment and it's not just about using sound therapy as in the video above or using white noise generators alone. A vital and very important part of TRT is the counselling with a Hearing Therapist or Audiologist that's trained in TRT. This must not be overlooked. Although some people may gain some benefit using elements of TRT or a scaled down version of it this is not proper TRT. Please note that it follows a strict protocol which requires a patient to have regular counselling/talk therapy and use sound enrichment, via white noise generators and a sound machine for use at night. This also has to be backed up with reinforcing "positive thinking" and there are various ways of achieving this that I mention in posts on my "started threads" The treatment can last from 12 to 24 months. Anything less is not TRT.

Michael

 

@fishbone, thanks much for your reply. A couple of quick questions...

1) Did it do anything at all for your tinnitus?

2) The description of TRT in the post I pasted earlier sounded like it was fairly simple and at no cost. Do you think that good results could be had just from following his instructions--the ones that seem to have given him so much success?

Thanks again!​

 

Thanks much Michael for your reply. The gist of what you said is what I've tended to think whenever I've run across anything on TRT. Unfortunately, I don't have the wherewithall--physically--to go out of the house very often, and regular sessions covering various aspects of TRT would seem to be out of my reach. That's why I was intrigued by the post by someone else with CFS who was able to apparently get some pretty remarkable results from using just the sounds from the two videos.

At the very least, this latest information/perspective and your input has put TRT squarely upfront on my radar screen. -- Hard to understand why there's so much disparagement of TRT when there are apparently many testimonials by those who say it's worked for them--even miraculously so. But I'm not going to go look up those disparagements--even though I'm a bit curious as to why they're being made.​

 

Just got this reply from the man who posted on his successful use of TRT using just a couple of videos...

Yes, it has certainly helped both my hyperacusis and my tinnitus. The treatment was actually designed for tinnitus, but it was later found to also be effective for hyperacusis, regardless of the cause of the hyperacusis. I can still hear my tinnitus if I intentionally focus on it, but I never find myself accidentally noticing it, whereas before the TRT, it was so loud that I felt like my ears were vibrating and I couldn’t believe that nobody else could hear it.

In my opinion, based on your symptoms, Tinnitus Retraining Therapy is easily the most logical course of action for you. Do not be discouraged if the version I described in my post above does not get you fantastic results, that is my own makeshift version, which worked for me. I recommend doing a google search for audiologist offering TRT for hyperacusis in your area. And if you can’t find anyone, you can simply look at THIS BOOK by the creator of TRT himself, it will tell you everything you need to know about it.​

 

I agree with what @Michael Leigh has posted here. I was saw my audiologist at least every 2 weeks and he did counsel me on certain things. My training took 1 year to complete....

 

The main reason for disparagement from some people towards TRT is the simple fact it is expensive. I will be honest and say that I wouldn't have been able to afford the treatment but got it free on both occasions. The other matter is that some people are looking for a complete cure from their tinnitus using this treatment or CBT. Anything less they believe is failure. Another factor is that it may not work for everyone. If a person goes into this treatment with a total negative mindset then it is unlikely to work. It is for this reason, I advise people not to try TRT or CBT until they have had tinnitus for at least 6 months. Please go to my "started threads" and read my post: when should TRT be started for more information on this.

All the best
Michael.

PS: If you have just recently acquired tinnitus then I don't advise you starting TRT. Perhaps counselling may be helpful, but the best treatment in the early stages is to do nothing. If you are feeling stressed or anxious talk to your Dr. Please read my post: New to tinnitus what to do.
https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/

 

No!, - the main reason for the disparagement of TRT is that it is a talking therapy as good or as bad as psychotherapy.