I'm increasingly reaching the same place. COVID-19 has nothing to do with it in my case (and hopefully you will feel better when you aren't so isolated from it). I highly doubt you will be sick enough to need a ventilator, please try not to let that add to your worries. The world does look like shit right now, though, doesn't it? At least i can hopefully add comfort by saying your Lenire spike is most likely temporary based on testimonials I have read here. Hang in there.
But i do relate to some of your sentiments and it worries me. There really is no *reason* for me to keep going other than the fact that I want to wait to try regenerative medicine so I can hopefully hear a song again in my lifetime. But with Macrolide ototoxicity that's way more of an unknown than with noise induced (though I'm confident regen medicine will fix my tinnitus).
I missed my chance at life. I missed my chance to have my own family as I married a self-absorbed man with a cruel streak who left when I was no longer able to keep my job (emotionally first and then physically). I know I have talked about this before but he literally disappeared for 3 days when I lost my hearing more or less to punish me for pleading with him to change his drinking plans with his sister and then, eventually, he wouldn't even look at me or sit next to me and would refuse to turn down music or the TV when I had my initial hyperacusis and then filmed me hyperventilating from crying so hard to show people what a "child" I had become. I even heard him once on the phone laughing to his sister about how i probably belonged in an insane asylum. And since I had both hearing and visual symptoms he accused me of lying and/or just being mentally ill because that's just too improbable apparently. I don't think you can ever recover from loving someone and trusting them with all your heart and then having them be so cruel. I will carry those scars for whatever length of life I have. I just can't "unsee" how this world can be anymore and maybe that's the crux of my problem.
I'm 42 now. If I heal from regenerative medicine in a few years, i will still have to start completely over.
I have decimated my retirement account. And in addition to Erik leaving, my father (who would have been so wonderful and supportive right now like he was when I had Lyme 15 years ago) passed away a decade ago. My mother is completely impatient with me and has even had her friend (who is local to me) stop to take some of her heirlooms back since I wasn't going to have grandkids.
Only two of my long time friends have tried to really relate to the new, sadder me but they have small children and have their own lives. I realize there are some people would miss me if I was gone but I think many more would be glad i was suffering anymore. They really don't know what to say to me anymore and I don't blame them.
I read once that a lot of Holocaust victims killed themselves *after* they were freed. They were the ones who lost their whole families and didn't know how to start over.
I feel that. I don't/wouldn't know how to start over. I'm too traumatized at this point. And I also have substantial neck arthritis that will need invasive surgery within the next 5-10 years so i am potentially facing serious additional health problems.
Really, the only thing that could make me see the beauty in life again is music. And that's because more than my ears have been damaged, it feels like who I am is lost forever.
The problem is that macrolide ototoxicity is unique in that in addition to hair cells, it also damages certain ion channels in the auditory brainstem (not the same ones Dr. Thanos is working on) so music might be the thing I have to live without but it's also the thing I can't live without anymore.
I'm not immediately suicidal but I can't help but think often that this would be a good place to get off this ride. This feeling will hopefully pass but it's real and i can't pretend it's not here and maybe that's why we all come here to talk about it.
Member
