Juliane

everyday it's like dragging my already dead body around and pretending im not already very much dead inside.

@crescentsky I know.

They hardly even do any research on tinnitus because its not a "disability." Azithromycin is "safe" because it does not cause hearing loss and tinnitus is just a mild annoyance that we don't even need to bother checking or writing down how many people are getting it.

I should also clarify that as "-30db hearing loss." No one cares about hearing loss under 30db because you can still hear orders and do your job.

Mine might be a semi success story. I’ve been bedridden since December due to POTS and I’ve gone awhile without freaking out over T. Seems volume has went down but it finally spiked now

I’ve been able to do things like longer phone calls and listen to music throughout the day on my iPhone speakers without my T spiking

@cyberspace Happy to hear!

I will write tinnitus out in my blood. Multiple copies scatter it all over my house, front and back yard, and on all the walls, on my hardwood floor, everywhere!

@Juliane - sadly we are the only ones that know this truth. I tell my family all the time. @cjbhab said it perfectly. So hard to explain this to loved ones and they just cannot understand. Always pushing pills that would not help or change my situation. Being allergic to sound can make like very difficult. What we are feeling is normal.

@4Grace What you say hits the nail on the head: "What we are feeling is normal" YES! Let's normalize normal. Getting tinnitus is a fate so cruel that it should be recognized as a life threathening disease. Because it is.

@gameover the outlook of having to suffer like this for years i also find an unbearable idea. I know i'm repeating, but that's why hope, and going day by day is my only way

i’m not leaving till they drag me out of the building.

@L along the way The day by day approach stop working once each day is worse than the previous one.

Aw @ZFire ❤️

@Juliane ❤️

Much love to you both.

Only hope that it can get better with time

Do you sleep well? I've had so much troubles with falling asleep... it was rough beyond words.. now i'm using temazepam, and i can at least sleep. I tell myself that things can get better by plenty of resting & healthy living, and time... because a life with t not getting better.. pffft i find that an unbearable outlook... i hope things may improve for us all

My progress is hardly a progress. T is louder, H is barely better, Nox creeps in more frequently. Life is there but I am watching from a distance. This is not a way to live.

T is a disease that keeps on giving. At first I thought oh will get better in 3 months...6 months...12 months...18 months...

I hope you will. I really like your plan, @Juliane (and you).

@gameover I like you too! A whole lot!

If you write that book, I'll buy multiple copies! The world needs to know how awful this is, even though it doesn't kill anybody the way cancer or heart disease would.

100000000000%

I am working towards it, but also wondering if I can handle the move. Also we already live in rural area, just not as quiet/nice as I would like.

I would move to the countryside, but then I would be in the place I dislike most: the countryside.
It's probably better for me, but my favorite spaces are urban.

I need to move away as well with acres of land. I didn't realized how loud this world was until T assaulted me. My neighbor is doing some crazy landscaping (that is not even needed) as I type this. The whole block is shaking.

It really is harsh that we have to suffer through this. Hope you feel better

Thank you! I cannot take it much longer unfortunately. Suffering too inhuman. No help. I don't want to live like this

Hope you feel better too!

Indeed. Fucking mild maskable T should not be called the same thing. Completely different ball game.

others have meds while we have the magical powers of exercising our brain...wooohooo

@julian - so true. I walk and bike. Exercise daily. It’s all I got left. The wind noise is making me worse even with some protection.

it's complete shit. can't even have some peace and quiet after a long day.

It is the worst. Just torture basically. Non stop.

Dear @MadeleineHope. It made me so happy to see you back and doing better! No less than a miracle

I am not doing great atm. Trying to hang in but so hard

Hope you’re doing alright dear @Juliane the forums a worse place without your kindness.

@Cmspgran thanks for your kind words! You are one of my TT stars! I am struggling

At least I got about 11-12 almost T free years where I only spiked or thought about my T after a loud party or going to the cinema etc.

@Juliane thanks for sharing. I really hope we can get through this hell.

@MiaVIL I hope so too. It is beyond evil.

Sorry to hear @HearingKoala. This community offers a lot of understanding and support when the world and family members do not. All the best!

@Juliane - never feel the need to respond. Im sorry. I can be a bother. Same questions all the time. We are running out of words I know. I understand. I more then understand. We love you. This is hard.

@4Grace I never replied to your kind message. Appreciate your always kind and loving words. I sense that you are a very good and kind soul ❤️

❤️

Her house was a storehouse of cocaine. Loneliness. Isolation. She kept her dignity though. @Grace I like your name.

My friend did a lot of mental health work with me in an imaginary place called healing temple. Dr Jack Kornfield style. The mind is very powerful.

My friend's pain was intervertebral disc. Crushing unimaginable, what we have is serious, but actual pain pain, reach for cocaine.

Thank you @kingsfan

You're welcome. I hope you feel better soon.

Thank you:-)

So I'm on like 6+ meds, and so what if I have music and restful rain soundtrack all night. So I can't get to sleep, all the time. It hasn't killed me yet.

The meds are not the best thing to be on, they have side effects, but I'll wait it out. My life is shitty. ok. but so what. what else is new.

@Juliane - I am so sorry to hear this. Honest to God. When you are carful and still worsen. We love you and wish you better days. I feel that if all my pain goes away I might have a chance at a smile. I wish you well.