Juliane

Juliane

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  • Juliane
    I told a friend with another (treatable) disease that she should be happy it's not chronic and consider herself lucky. Think I lost a friend
    View previous comments…
    Varda
    You're spending too much time on this forum. Real friends in the real world don't gaslight each other that they have a "mild case" like they do here.
    Juliane
    @Varda; while I do believe all things are relative, I also know for a fact that it helped me in the past when I suffered from mild T to learn from others who objectively had it a lot worse than I to come out of my depression. Tough love can also be love. And helpful. Today, I would be so happy if I had mild T. Not saying you or anyone else here has mild T. But I know I did, before it became worse
    Juliane
    And while I would never minimize anyone's pain or suffering, I honestly believe that having treatment available that WORKS or even gives temporary relief means being in a much better place than tinnitus sufferers for whom there is no treatment, not even temporarily. My friend who I referred to will be given treatment for something that is temporary. I don't think that is the same level of tragedy as chronic tinnitus
    Juliane
    2/2 And then I think of course not. Our conditions ARE our lives. I am fucked.
    weehiru
    I empathise, so much. It's why I have reframed my mind in considering life being the experiences, the connections and the memories I'm making alone, rather than the conditions I'm facing. Turning it away from just myself as a means to cope. But it's hard. Extremely. Giving you strength today and tomorrow Juliane.
    Tryn2BHopeful
    I said those words to myself today... but then will turn around and say I can do this. I think I am T bipolar...
    Juliane
    1/2 When optimistic I think: if life conditions have become unbearable can life still be good? Can we separate the two (life and conditions)
    L along the way
    How to say.. i just find this very profound statement. I have a tendency to be too philosophical about things maybe, well this statement.. i dunno.. i feel it. To me it's also about the physiology and psychology of it all. In the end to be honest, it's a big question mark how it all works, but i do feel that definitely we gotta try to make our life conditions as beneficial and natural as possible..
    L along the way
    The search for psychological ease with painful t has been a harsh difficult ride here.. i think for most of us here. Maybe i gotta try to analyse less.. remind myself to not analyse things too much.. but just trying to improve the life conditions that we can improve, and live a natural and healthy lifestyle. I hope that with time things can improve.
    Juliane
    This will be my last year unless something dramatically improves
    View previous comments…
    Juliane
    @Andrei88 Thank you. I appreciate your words a lot. But how do we know if our T is even similar? These things are so hard to compare. I fear I can never adapt to such horrific life conditions.
    Andrei88
    For sure! I have very bad days still, but you get used to the fact that things to get better again, that helps you to endure.
    gameover
    4Grace
    Hey Julian, sorry to bother no need to respond. Just saying hello, hope you are doing a little better these days. I think of you now and then…. Wish you all the best always. You're like an old friend I have not spoken to in a while. :)
    Juliane
    @4Grace You never bother me. I consider you a friend too. A friend I hope will soon feel better :-)
    Juliane
    I have a feeling that we would all heal a lot easier if there was peace and harmony in the world. F... war-makers!
    View previous comments…
    Juliane
    No did not cause mine either but no one needs all these multiple stressors from war, conflict and idiocy.
    L along the way
    @Juliane i completely agree.. what a world this is.. for me personally, i have to think about.. when i started eating a plant based diet for health reasons, i've later seen a lot of footage of factory farming.. what the animals have to endure.. i hope people get more awareness on this, so we can make better informed choices..
    L along the way
    The thing for me is.. the wars i can not fix.. but i can choose what i eat, so i try to focus more on own lifestyle choices, than on what's going on out there what we have no control over.
    Juliane
    I am ready to retire. I would not even be sad about giving up any ambitions of a work life. Only relief would be felt.
    crescentsky
    +1 only other thing is I don't have enough savings to last lol. Sometimes I wonder if T would be easier if we got it in our 80s, where we would have lived out most of our lives already and have done probably most of the things we need to do or accomplish. And living with it for 5 years is less daunting than say 40+ years.
    Juliane
    I agree. I think getting T would always be a nightmare but less time to have to live with it when you are a senior.
    Juliane
    I have lost all hope
    SumGuy
    :( not sure what to do to help but I truely hope you find some relief soon
    L along the way
    I symphatize with you dear one.. can i just share.. i've had moments where i lost all hope.. lying in bed without being able to sleep, and just repeating to myself "let it all be over".. and such.. and then sometimes some days later.. i feel a bit better, and there is some form of relief, inspiration and hope again.. so for myself, i notice it fluctuates
    Juliane
    My therapist said "But you ARE already living with this condition". As some sort of epiphany. Well, I beg to differ. This is not living.
    Juliane
    Either you can live with this condition or you cannot. There is no habituation. Not for me. As a lover of silence, the odds are bad.
    Juliane
    I'm never going to give in to gasligthing and normalize this degenerative disease as a minor nuisance. For a year+ it has made my life hell
    Varda
    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.
    Varda
    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.
    Juliane
    I need to very soon read a genuine success story from one of the struggling members on here. Something's gotta give!
    View previous comments…
    cyberspace
    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
    cyberspace
    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
    Juliane
    Juliane
    I so hate knowing that if I did in fact end things people would call it depression even if I left a note blaming T. T never gets the blame!
    View previous comments…
    crescentsky
    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!
    4Grace
    @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.
    Juliane
    @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.
    Juliane
    I almost feel that it is wrong not to give up. I should call in sick and wait to get fired. Would that not be the best thing?
    Juliane
    More than a year since my worsening and no progress. As in none at all. Life officially sucks. Don't care anymore
    View previous comments…
    L along the way
    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
    gameover
    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.
    crescentsky
    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...
    Juliane
    If I ever heal, I will write a book about this. I will do my best to create awareness about this horrible disease so completely ignored
    Juliane
    Whether I eat healthy or not or drink coffee or not, my T does not sod off. Might as well eat and drink as I please
    Juliane
    When my therapist says T is not dangerous I want to slap her! How can something that has made my life nonstop torture NOT be dangerous?
    Juliane
    I have some fantasy about moving to the countryside to heal. Is that Just a stupid dream? Moving would be horribly stressful in itself
    gameover
    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.
    Pinhead
    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.
    crescentsky
    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.
    Juliane
    All of the insane shit going on in the world is making it impossible for nervous systems to heal. Part of the reason too I believe
    Juliane
    Sorry if I sound insane, but I believe this could be some kind of attack on us. Why are we suffering so badly? Havana syndrome?
    SumGuy
    It really is harsh that we have to suffer through this. Hope you feel better
    Juliane
    Thank you! I cannot take it much longer unfortunately. Suffering too inhuman. No help. I don't want to live like this
    Juliane
    Hope you feel better too!
    Juliane
    That is where the true evil of this condition comes in. Nothing to "do" to ease the suffering. All about enduring. For what purpose?
    gameover
    Indeed. Fucking mild maskable T should not be called the same thing. Completely different ball game.
    Juliane
    People who talk about fighting disease don't know anything. With T, fight makes everything worse! All we can do is pause life and suffer
    crescentsky
    others have meds while we have the magical powers of exercising our brain...wooohooo
    4Grace
    @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.
    Juliane
    I seriously believe T is on the top 3 of worst diseases on the planet. Someone "up there" must really hate me badly
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