Be Honest. Do You Still Enjoy Life?

With or without tinnitus, sometimes our life is hell, sometimes it's heavenly.

Whichever spectrum one is currently on, rest assured it will change. Maybe going to a forum like this may not be good for some people if they do it too often. I went to a few tinnitus self-help groups in person before swearing off of them for life. Hearing about it for an hour or an hour and a half just made it worse!

It was the same w/ my drug addiction, which I got away from about a quarter of a century ago. All that talk about it was not helpful, and I didn't agree w/ the whole 12 step philosophy about being powerless. People just made it into a religion. Now, whatever works for someone else is fine, but I had to find my own way. I had gotten myself into that mess, I was going to get myself out of it. Understanding the science of it worked, and that's helpful w/ tinnitus too.

Staying busy doing things we love is really good medicine for just about anything.

 

I can enjoy life in the outdoors and when keeping myself busy, but nights are hell in silence, my tinnitus is so loud that it hurts.

 

I don't enjoy life as I used to. I can still do a lot of things despite tinntus but the experience is not the same. The tinnitus, stress and worry is always there. I would say that I lived before, now I exist.

Even if a treatment is found in the future I still don't think I’ll ever be the same. I’m kind of traumatised by this experience. I hope I’m wrong but I do think that trauma changes us.

 

My quality of life has been seriously challenged not since the tinnitus, but the additional hearing loss I now have. You can still enjoy loud places with tinnitus. But not with hearing loss. It sucks...

 

The landscape of my life changed, as tinnitus came into the scene.

As I reflect on life and my gradual tinnitus progression from very mild (only heard in a very quiet room) to beyond severe, it brings many challenges and victories to mind.

Each day waking up with brutal, loud, odd noises screaming at you can be a challenge.

I pour water and food for my dogs (they smile at me), I smile back at them. They wag their tails at me and show me love, I smile at them and show them love. The ears are going crazy, they keep getting louder and louder.

I continue to do what I have to do. I continue to prepare for my day and do whatever tasks that needs to be done.

My passion for life still exists, it's a difficult life (truly is), but I still have to move forward.

A lot of adjustments have been made to my life, my smile doesn't always come from hearing the beyond loud and severe tinnitus I face. It comes from waking up each day and facing what I face and moving forward!

 

Living day to day, hoping for a miracle.

 

I have suicidal thoughts every day. They occur mostly at night when I'm trying to get to sleep.

During the day, I try to find little things to enjoy or appreciate, and on the days when I can't think of anything, I still try to come up with reasons to live.

 

Do you still work?

 

Hi. When did your ear problems start?

I had it very bad and maybe the same thoughts as you have today but I can tell you, things will get better over time. I don‘t talk about weeks, I mean months or years.

In my case it took long, but at a certain point I got back to life, of course with heavily protecting my ears. I have experienced some more setbacks, some that were not my fault and some were very stupid behavior from my side...

But please try more things that you feel good about. After some time your situation will improve and you will feel better about life again.

 

Thank you @tomytl. My ear problems began only five months ago, but it feels like an eternity because the first four months were so horrible. It wasn't until late December that I started feeling a little better.

It's been comforting to hear that many people like you have had gradual improvements. I hope we all get better, one day at a time.

Reading this particular message thread has been thought-provoking because it made me realize that "enjoying life" is somewhat different from "finding meaning in life." On our worst days, life is neither enjoyable nor meaningful. On better days, we find either trivial joys that help us pass the time, or profound insights about life that give us the will to carry on, even if we can't think of anything to be happy about. On our best days, we can find both joy and meaning without any effort.

Since this nightmare began, I've spent hundreds of hours on this message board and on the websites of various medical journals. I've researched, purchased, and ingested various supplements. I've even taken up exercise, which is a very big deal for a couch potato like me. I am frustrated by the uncertainty of these efforts, but knowing that there is not a single person who has definitively solved the mystery of tinnitus and hyperacusis, I remind myself that I shouldn't beat myself up for not healing faster than I already am.

Near-constant brain fog makes it difficult for me to be productive, so in my present circumstances, I'm unable to find any meaning or sense of achievement in life, just fleeting moments of joy, like when I eat a delicious cookie for thirty seconds or distract myself for two hours by watching a movie. It feels like a hollow and unsatisfying way to live, but I tell myself that there is only so much I can do to accelerate the body's natural healing process and I can't be expected to stay on top of the problem 24 hours a day.

Maybe it's wishful thinking on my part, but do you know what I want for everyone on this board? I want us all to make a complete recovery and also get back the time we lost because of illness. Either the fates allow us to live a little longer and in better health to make up for the time we lost, or we are graced with twice as much good luck and productivity to make up for all the bad luck and bouts of unproductivity.

 

Love my life. My tinnitus is as loud as anyone’s too. I hate the fire alarm in my head, but I decided years ago to just move on. I would not consider myself habituated after 7 or 8 years either. Acceptance that it is permanent was key to me. Staying busy with things I love is also key.

 

What would you consider to be habituation?

 

I would say that it no longer registers on my conscious mind. My mind is all too aware of the screaming in my head, I just don’t care.

 

@Mattv, do you have good days and bad days, or just all the same days?

 

I might have 2 or 3 good days in a year. All the rest are fire-alarm in my head days.

 

It’s the same with me most of the time. I hear the ringing all the time, but I just don’t emotionally react to it as much anymore.

The good days for you would be days where you are not aware of the ringing as much because it’s quiet enough? What do good days look like for you?

I get like maybe 3 or 4 good days a month but good days for me are where I still hear it over everything. Mine can hardly ever be masked but sometimes the ringing will go down to where I can listen to a few songs or have a couple hours where I’m not aware of it because I’m so engrossed in something else but that’s mostly it. I still hear my tinnitus clearly over road noise on good days though because it reacts to white noise sounds for sure.

 

@Ava Lugo, one thing I've learned over the past almost 20 years with tinnitus (and hyperacusis for last 3 years) is that, for me personally, my emotional response towards tinnitus/hyperacusis is a big factor (diet, weather changes, sleep, stress/fatigue are others) to define how my day turns out and whether I can make it a good day or a miserable day.

This is not something I can switch on and off, obviously, but there are mechanisms to use in order to focus on something good every week, if not every day (even though some days are a struggle). What you define as something good is up to you - up to each and every individual.

Personally I find a lot of pleasure in the small things. Enjoying a cup of coffee, listening to the birds on a calm day, photography, or anything that gives me some sort of positive association.

Even though it's reactive, and even though I hear it over most things, my focus can shift to that moment. Moments that brings me "peace". Not in my ears, but calmness within.

 

I actually have days (rare) where I hear almost no noise. These are almost always days when I have been at my off grid cabin for a few days and am very relaxed and in a meditative state of being. I really believe my tinnitus is caused by stress. I have tried to relieve the stress but it's not that easy...

 

Hey @Mattv -- Have you ever considered that being away from electrical currents and other EMFs that are so ubiquitous in urban environments could be contributing to your tinnitus? I recently visited my brother in the woods of Arkansas for a week, and did much better with my tinnitus and hyperacusis while there. My chronic vertigo also improved.

It has me thinking about spending several weeks in the woods to see if it might markedly improve my daily quality of life. Ever had any thoughts about spending more time in your off grid cabin since you seem to do better there?

 

Yes, I have in fact, but I have a business I run and family and I miss them! When I retire, it’s my plan to spend significant time there.

I’ve always wondered about electric lines and general electromagnetic radiation. It’s possible, but I suspect it’s really just stress. The deep forest is truly restorative. Something about trees...

 

Yeah that's pretty much it for me.

 

This is good advice. Thank you.

Yeah, I try to find the good in the small things too.

This might sound a little off topic but i recently have been trying out diamond painting. I’m working on my very first diamond painting kit and I’m having fun with it so far. It’ll probably take me a couple weeks to finish it but yeah, I really like it. I wouldn’t have thought to try out these new hobbies back when I still had mild tinnitus. I have more hobbies now I think compared to back when my tinnitus was mild. I think this diamond painting hobby will also help take my mind off tinnitus. The hobbies I have been doing so far have been adult coloring book (not the dirty kind lol) and jigsaw puzzles and diamond painting. Once I get my Nintendo Switch Lite fixed, I’ll be hopefully doing some video games as well.

The good news about doing those hobbies, is they keep me from sitting in front of a computer screen all day lol. I’m going to be going to the lake with my dad this weekend including on SuperBowl so that’ll be nice too.

I have one more question for you. Do you have any other ailments or health issues you deal with on top of reactive tinnitus and hyperacusis?

I get more overwhelmed sometimes about the other ailments I’m starting to get because it adds more stress. I thought maybe severe tinnitus would be my only health issue for a long time til I got old but now it looks like I might be developing pretty bad dry eye. The dry eye is an on and off thing for me but now I have to use eye drops often. I have had thoughts like “I wish severe tinnitus could just be my only health problem”. I get frustrated because it just seems like after I had severe tinnitus for over a year, in 2021, I started getting issues with my eyes. Some eye symptoms can be managed but like the eye floaters worsening in 2021 just felt like an absolute blow to the self-esteem.

Do you ever feel overwhelmed for having to deal with multiple ailments instead of just one?

I’m only 26 but it seems like my body is deteriorating faster than a lot of people my age.

 

That sounds great @Ava Lugo.

When we see things and life differently, new opportunities opens up - just like you've done now with your hobbies.

Feeling overwhelmed at times, yes. That's a natural response for most people. Especially if I have too much stress in my life. I get a lot more fatigued when stressed out and tired, and I get a weakened immune response as well.

I've had other ailments, such as strong nerve pain in my face due to a trauma. It's mostly gone now. And a few other things... But I try to focus on what I can do, and work from there. I could have been dwelling in misery, but luckily I've been able to get through the storms - but not without having been in really dark places at times...

 

I’m in a better place now, but my surgery 2021 took me and opened some doors within myself to darker places... I’m proud to have overcome this but it’s left me with a residue, something I can’t explain. Only those who have experienced similar can truly understand x

Navigating the uncertainty within myself, finding calm and discovering my own pathway to change has been what it’s all about... x

My own personal growth...

 

Yes, it's uncertain. Yes, it's indeed all about finding your own pathway. With all of this, we do grow.

It's the knowledge that we gain, that can possibly help someone else.

Remain strong, and keep moving forward!

 

Hi @Ava Lugo -- Though I think genetics are always a factor in aging, I really think the rate at which we age is highly dependent on our daily habits. The food we eat, the amount of exercise we engage in, the amount of stress in our lives, etc. will almost always (IMHO) be much more important factors than genetics.

I speak as a person who's struggled with some long-term chronic health conditions, and the most significant improvements I've made were a result of lifestyle changes. There's so much conflicting information out there, that a lot of people just throw up their arms in despair, and never start making changes a little bit at a time.

If you have any interest in what I consider a good starting point, here's a link to an 8 minute video by a guy who I feel really knows his stuff. He says in this video that he's made over 2,500 videos, and I've watched many of them on many different health topics. He's become of my favorites on YouTube. -- Take care!

Dr. Berg Healthy Keto® Diet Basics: Step 1 - Intermittent Fasting and Fat Burning

 

Hello @fishbone, like you and many others on the forum, I’ve had tinnitus for most of my life, but we have learnt over the years to live alongside of each other.

But sometimes things change, my hearing changed, and I’ve had to learn new ways to navigate through it. And I have and I’m doing so much better,

I’m even back at work (counselling) two afternoons a week.

I can still do a lot of things, it might take me longer, but I do it.

But most important is to listen to yourself/your body when you feel overwhelmed. It’s about finding a way... and never losing hope.

 

I feel this. I developed reactive tinnitus about 6 weeks ago. The odd thing is, the tinnitus no longer bothers me. It's the thought that I may have or may develop painful hyperacusis.

You wouldn't think reactive tinnitus is something you could habituate to, but I mostly have within about 6 weeks. There was one day that I decided to accept it as a part of my life. I had to decouple my mood from my tinnitus and remind myself that tinnitus can't hurt me. Once I made that breakthrough, habituation happened rapidly.

I don't think habituation is something you can force and I think everyone reaches that point differently. There are days where it gets to me, but many days I can put it to the back of my mind. The reactivity is tricky, because my mood would always go down once my tinnitus started to amp up - I had to focus on decoupling that correlation between my mood and tinnitus spike. It has become more of an acknowledgement that it is spiking and then putting it to the back of my mind again.

I have other fears now that are less to do with tinnitus and more to do with hyperacusis. Perhaps those anxieties have simply eclipsed my anxiety over tinnitus.