I Feel So Weak and Helpless — I Don't Want to Spend My Life Alone

[aot]

I'm losing my mind I think. I don't know what to do.

I've begun a new job at Wal-Mart. My first day, I got exposed for a serious amount of loud noise. (Don't ask why, or how long. I'll just feel like a jackass.) That was about two weeks ago, and I spent all that time terrified that my tinnitus was going to spike or become reactive or something. And while it didn't, it may have well have because while my tinnitus is still at baseline (Moderate, masked by most everyday noise.) I still felt so stupid for letting that happen to me. All my progress could've been just fucked. I can't ignore it as easily as I usually can.

Like most people, I'm social distancing in order to slow the spread of COVID-19. And now I'm starting to realize something: COVID-19 or no COVID-19, I have to keep doing that. It's the only way to keep myself from spiking.
And it's killing me inside.

I can tolerate it now because of COVID-19. I get it. Lives are at stake. But the fact that I have to do this for the foreseeable future, after COVID-19, just fucks me up.

I read all these posts from people spiking from normal everyday socialization and interaction, and it's so scary and sad. With intrusive, unmaskable tinnitus and hyperausis so severe that typing this post would cause them pain. And I don't want to live that way. But I don't want to be alone forever.

Growing up, I was always alone, all the time. No one aside from my family gave a shit about me. None of the other kids wanted anything to do with me. I didn't have any friends until high school, I didn't hang out outside of school until I started working. Finally, after years after isolation, I had friends. I went out like I normal person, people cared about me without familial obligation.

Those years alone took their toll though, and during that time I struggled with feelings of depression, anxiety, and suicidal thoughts. I still struggle with these things sometimes.

I first got tinnitus at 16 or 17. It was bad at first, but over the course of few weeks it faded to near silence, barely anything even in a dead silent room.

All that ended in November of last year. Me and a few friends visited the medieval fair. We saw the jousting contest, which sealed my fate. Everyone was shouting, stomping their feet. One of the actors fired a blank in the air. A few days later, my tinnitus, which for years was nothing more than a fact that appeared in occasional small talk, spiked. It followed me everywhere expect for the shower.

I then got hit with the worst Flu I've ever had. It felt like I got the shit kicked out of me. And it certainly didn't do my tinnitus any favors, spiking it even more.

Fast forward to now: My tinnitus has faded quite a bit, I have mild VS and mild TTTS. And I don't want it to get worse. I can't live like that if it get worse. I don't want to be like Joyce Cohen, or Gaby Olthuis.

But I can't live like a recluse either. I did that already, and it made me feel like a walking corpse. What the hell do I do? Were those briefs years of living instead of just merely being alive just a cruel fucking joke?
The thought of al my friends moving on without me makes me sick to death.

I've told all of this to my therapist (who also has tinnitus due to Meniere's Disease, and is completely habituated.) and she thinks I'm catastrophizing. Is that what I'm doing? Am I just losing it?

There's so many things I've never gotten to do.

I'm sorry for freaking out like this.

TL;DR My life is over at the age of 21. I don't know how to deal with it. (Or am I just being a drama queen?)

 

[FGG]

Hey there,

It's hard, I know. Those of us without supportive families are definitely at a disadvantage in many ways but especially when it comes to trauma.

I don't have an answer other than to say you are young, treatments are coming and you have plenty of time to grow into a fulfilling life

Also, (hug). Loneliness definitely makes things way worse.

 

[Orions Pain]

*hugs*

I'll be completely honest. I have these same exact thoughts, especially living in fear of making things worse and I'm not too much older than you

The only thing that helps me staying positive is appreciating things that I CAN do. Enjoy good food without a feeding tube, go on a walk whenever I feel like it (might be limited with places, but still), watch a good movie, etc. Finding joy in little things. If someone can be bed ridden for years on the end, and still find the will to live, that so can I.

I don't mean this in a "people have it worse than you" sort of way, but rather just being appreciative of little things like a good cup of coffee in the morning and making EACH day as good as you possibly can.
You're definitely not being a drama queen, this stuff sucks and feeling this way is a normal reaction.

If you're worried about friends, perhaps find ones that will be more empathetic. Maybe there are some Facebook groups for people with chronic illnesses in your area who will be more understanding to your condition. Joyce Cohen has severe hyperacusis, but she still finds a way to make life work for her.

I also like to think that in the end, none of it matters. I do have days where I feel like my life is over and I'll never be happy again, but so what, I guess. None of us are guaranteed a happy, full, life. I've been trying to make due with what I have.

I think from a young age we're taught that we have to work hard and we will have good lives. You have this ideal life planned out for yourself. But then something crappy happens and it's so insulting (at least with myself), that you think, wow, this happened to ME? Not to say I've given up on life, but I feel like I've lost all control, and my one goal is just to make it as long as I possibly can. It doesn't feel like I own my life anymore.

I also try not thinking in terms of "I'll be suffering for the next 70 years". Who knows, maybe in 2 months I'll get diagnosed with terminal brain cancer, or get into a fatal car accident. You truly never know, so just do your best to enjoy things once you can. It does feel terrible seeing friends go out and do "normal" things but it helps knowing there are other people who suffer greatly too, we just don't see them because they're stuck indoors or in hospitals.

 

[Bill Bauer]

That was about two weeks ago, and I spent all that time terrified that my tinnitus was going to spike

Normally if it doesn't spike the day of the event or the next morning, one is in the clear.

COVID-19 or no COVID-19, I have to keep doing that. It's the only way to keep myself from spiking.
And it's killing me inside.

During this time of healing (first 1-3 years) you are vulnerable. Eventually you will be a lot more resilient, and then you will just need to stay away from concerts and other loud places, but you will be able to handle most things.

My life is over at the age of 21.

C'mon.

Loneliness definitely makes things way worse.

Speak for yourself!

 

[Contrast]

I don't want to be like Joyce Cohen

why not... she's awesome at raising awareness. Her and Byran pioneered the meta for pain hyperacusis.

 

[zombiechick]

I'm losing my mind I think. I don't know what to do.

I've begun a new job at Wal-Mart. My first day, I got exposed for a serious amount of loud noise. (Don't ask why, or how long. I'll just feel like a jackass.) That was about two weeks ago, and I spent all that time terrified that my tinnitus was going to spike or become reactive or something. And while it didn't, it may have well have because while my tinnitus is still at baseline (Moderate, masked by most everyday noise.) I still felt so stupid for letting that happen to me. All my progress could've been just fucked. I can't ignore it as easily as I usually can.

Like most people, I'm social distancing in order to slow the spread of COVID-19. And now I'm starting to realize something: COVID-19 or no COVID-19, I have to keep doing that. It's the only way to keep myself from spiking.
And it's killing me inside.

I can tolerate it now because of COVID-19. I get it. Lives are at stake. But the fact that I have to do this for the foreseeable future, after COVID-19, just fucks me up.

I read all these posts from people spiking from normal everyday socialization and interaction, and it's so scary and sad. With intrusive, unmaskable tinnitus and hyperausis so severe that typing this post would cause them pain. And I don't want to live that way. But I don't want to be alone forever.

Growing up, I was always alone, all the time. No one aside from my family gave a shit about me. None of the other kids wanted anything to do with me. I didn't have any friends until high school, I didn't hang out outside of school until I started working. Finally, after years after isolation, I had friends. I went out like I normal person, people cared about me without familial obligation.

Those years alone took their toll though, and during that time I struggled with feelings of depression, anxiety, and suicidal thoughts. I still struggle with these things sometimes.

I first got tinnitus at 16 or 17. It was bad at first, but over the course of few weeks it faded to near silence, barely anything even in a dead silent room.

All that ended in November of last year. Me and a few friends visited the medieval fair. We saw the jousting contest, which sealed my fate. Everyone was shouting, stomping their feet. One of the actors fired a blank in the air. A few days later, my tinnitus, which for years was nothing more than a fact that appeared in occasional small talk, spiked. It followed me everywhere expect for the shower.

I then got hit with the worst Flu I've ever had. It felt like I got the shit kicked out of me. And it certainly didn't do my tinnitus any favors, spiking it even more.

Fast forward to now: My tinnitus has faded quite a bit, I have mild VS and mild TTTS. And I don't want it to get worse. I can't live like that if it get worse. I don't want to be like Joyce Cohen, or Gaby Olthuis.

But I can't live like a recluse either. I did that already, and it made me feel like a walking corpse. What the hell do I do? Were those briefs years of living instead of just merely being alive just a cruel fucking joke?
The thought of al my friends moving on without me makes me sick to death.

I've told all of this to my therapist (who also has tinnitus due to Meniere's Disease, and is completely habituated.) and she thinks I'm catastrophizing. Is that what I'm doing? Am I just losing it?

There's so many things I've never gotten to do.

I'm sorry for freaking out like this.

TL;DR My life is over at the age of 21. I don't know how to deal with it. (Or am I just being a drama queen?)

I truly understand. I walk around with that fear a ton. Actually, before I found this forum I had no idea it could get louder. As for hyperacusis, its very rare and can get worse when people hide away from the world and can be treated. You have to continue living. When I'm not anxious, my tinnitus is not reactive and I don't have spikes. That's why I'm going back in zoloft. I get obsessive thoughts and it can be debilitating to my state of mind. I wish my T was that low but it isn't and I work through it. I'm not always working through it with my wits about me but I try and push through. I need to push through for my family. For myself. I'm only 35. I'm scared. So damn scared. But I keep pushing. And I do believe they will come up with treatment that works. Hopefully soon. Until then, keep working, and I keep living. Just one day at a time.

 

[Tweedleman]

Wow, it's incredibly shitty that a visit to a medieval fair did this to you, I would never have expected it. I went to a death metal gig with no ear protection, so in my case I kinda asked for it I guess.

I completely identify with how you're feeling. I had low selfesteem for years, few friends, missed out on a lot all the way up to university. Ironically this started to change when I dropped out and went to work at Wal-Mart around your age.

What position are you doing? I was an overnight stocker and developed a great work ethic and persona there. I actually loved the job and would've moved up in the store if I hadn't let people tell me I needed to go back to school, get a career etc. If you can handle the physical slugging and the general toll of the graveyard shift, it's much quieter than days. You typically work independently stocking your own aisles or departments, and the nights go by fast. We even had a deaf lady on our crew, there wasn't much communication involved. With that being said, the night crew is usually tight knit and you may meet some lifelong friends (I did). The afternoon shift (truck team) would have all the fresh freight pulled to the floor ready to be worked when we came in at 11pm. The goal was to stock the shelves and then inventory (bin) the overstock in the backroom. Our store wasn't 24hrs so there were no screaming customers to deal with.

I don't have a therapist but my Dr. tells me that I'm "catastrophising," too. I had a counselor but she kinda gave up on me after my 2nd session and I didn't bother to book another. People will all give you the same script in different language, the professionals just more eloquently. "Live in the moment" is one I get all the time. The reality is that your fears are very warranted. The majority of people wont be as intimately knowledgeable about tinnitus and hyperacusis and they will just think you're being a hypochondriac, but you're not.

The best advice I can give you here (and I'm still trying to cope with it all too) is to try to position yourself in life in such a way that you can limit the amount of worries and fears that you have. If this means getting a quieter job, do it. I hate being vague but I think it's a matter of finding a niche you can thrive in. It isn't merely "not worrying about the future" like your therapist is telling you, with this condition you're going to do that regardless. It's a matter of setting yourself up so that you can minimize those worries and still enjoy a life.

The worst thing you can do is compare yourself to the image of the normie, ie. what you see other 21 year olds doing on Facebook. Don't do that. It took me years to realize it was all bullshit anyway.

Hit me up if you ever need to vent, I've gone through (and am going through) a lot of the same shit you are. Like @FGG pointed out, you're young and we've got promising meds to look forward to. You're not alone, we'll have our day.

 

[Flamingo1]

@aot Welcome to Tinnitus Talk. You have lots of new friends here!! We are a very supportive community and a lot of us have been on here for years. I moved to a city where I didn't (and still don't) know anyone. Being part of the Tinnitus Talk community has made me feel very connected when real life hasn't. We are here to support you. There are many treatments in development right now for noise induced hearing loss which it sounds like you may have. You are still young. Check out the Frequency Therapeutics research thread. You have many great years ahead of you. Don't give up hope. These are trying times for everyone. Who knows, the love of your life may be working in the next aisle!

 

[serendipity1996]

It's a struggle not to feel this way. I'm around the same age (23) and even though I've seen significant improvement in my hyperacusis I constantly worry about relapsing. I view this condition as essentially chronic even if there are periods of remission. I'm not feeling as abjectly suicidal as I was a few months ago or anything but I'm still focusing on taking things day by day.

I have to say I am really glad Tinnitus Talk exists - it's especially encouraging to keep up with the latest research. I remember when I first joined the forum back in 2016 after my first 'bout' with hyperacusis and there was AM-101 and... not much else haha. Things have really taken off since then and there are so many knowledgeable and smart members here on the forum.

 

[Juan]

TL;DR My life is over at the age of 21. I don't know how to deal with it. (Or am I just being a drama queen?)

The only option is to keep going. There is no other option. Just try to live your life as best as you possibly can, and as normally as you possibly can.

All that requires adapting to the new situation and changing a lot of thing to adapt, find a quiet place to live, adapt to the odd noises around (every place has its thing.. gardening, clearing snow, street cleaning, traffic, airplanes, etc). So you have to adapt to the noise map around you. And find spaces of freedom, the odd restaurant that is quiet, a walk by the seashore, a stroll in the forest, things like that..

Of course anyone with hyperacusis trying to live in New Delhi.. Manhattan, or central London, is going to suffer. So one has to look for other options. The intelligent way consists of adapting, because as of today there is no other choice.

 

[Bartoli]

in my case I kinda asked for it I guess.

Nobody deserves this. Especially so because most people don't know such a thing even exists. How many people wear earplugs? More than in the past, probably, but still a small minority. I have never met anyone who has custom-molded earplugs and hasn't gotten tinnitus before they had them made. Save for some musicians, producers and the people who have them ordered through work.

 

[ASilverLight]

I relate to you so much, @aot.

I was bullied pretty much my whole life, and my family situation hasn't been the best for several reasons. While I did have some friends, they were never close and I'd always end up alone eventually. Throughout my early and middle teens I was completely and utterly alone with the exception of some friends online.

I've dealt with mental health issues for the better part of my life, but over the last two years, things were actually looking up. I was starting to figure things out and become at peace with some things about myself, getting ready to really become who I am and such. 2019 was pretty much my best year of my short life - fun job, great colleagues/friends, lots of travelling etc... I really started to feel hopeful.

2020 comes along, and I get tinnitus.

I know there's treatments coming but as for now I do not know the exact cause of my tinnitus so I'm not sure if they'll help me at all. It sucks knowing I've only had around 2 good years in my life and I'm already having to give up so much at 23.

If you ever want to talk, feel free to drop me a PM.