- Apr 30, 2014
- 533
- Tinnitus Since
- 04/2014 (many increases since then)
- Cause of Tinnitus
- Progressive hearing loss / noise / ETD
How many times have I posted to this thread in the last 10 years?
Another bout of hearing loss and more tinnitus despite protection. It just amazes me that a) I can't go a year without losing hearing and b) normal sounds that are non-damaging seem to cause me hearing loss... Truly it does feel like I was not meant to be here at times. I still struggle to wear my hearing aids cause sometimes the extra noise is just... ugh. I miss being able to hear semi-normal. Everything is so quiet now. Quiet and muffled. I know if I manage to keep myself alive, that I will be a cochlear implant user one day. That scares me and breaks my heart.
Unrelated (or maybe it is?) to the ear struggles, my glaucoma/blind eye is such that I am at the point where my specialists want to remove it altogether. In my heart, I just know this is the correct choice, but it's my eye! I wanted to hold onto it. It's a part of me... But it causes so much pain and struggle.
I also developed dry eye disease in both eyes. No clue what caused it but I went from unbearable pain and laying down with my eyes closed most of the day to manageable most days. I have to take special blood serum drops that cost me or my mother $400+ a month, get my meibomian glands expressed, and use an ointment at night with special oil rubbed across my lids, and special cleansing wipes in the morning...
I also have developed something called Histamine Intolerance which means I can't really enjoy most food anymore. I have to stick to a special, very limited food list, or I get an upset stomach, my Eustachian tubes swell, eczema, itchy skin, more anxiety, insomnia... I've lost 30 pounds in the last 2 months. I am down to one meal a day because I live with my mother and we can't just afford to buy food only for me. I can never again have things like chocolate, cheese, milk (I can have gluten-free oat milk from one specific brand, but it's very expensive), oranges, strawberries, nuts, cakes, cheesecakes, bananas, kiwi, most fish, leftovers of any kind, etc... I really miss food.
And through therapy, which I've been attending for a few years now, I have learned that I have been grossly let down by health professionals since I was born. They didn't inform my mother of the risks of my congenital defect down the line. They knew NOTHING about infant depression/anxiety/trauma in the 90s. My surgery at 10 days old and the recovery period afterward (I had to be held face down for weeks and was not allowed to move from that position for anything and was not allowed to turn my head or tilt it) caused me something known as Pediatric Medical Trauma Stress which turned into C-PTSD, depression, anxiety, and likely triggered my ADHD later in life and set off all the other things wrong with me slowly but surely.
If you're wondering how the hell I am still here, I don't have any other answer than the only thing I seem to be good at and blessed with in this life are friends. And my mother. I have suuuuuch a fraught and complicated relationship with my mother but she's the only parent I've ever had and I know she loves me even if she cannot do emotional displays or empathy very well.
I am 30 years old now. Even seeing the 10-year-old profile picture I have up here makes me sad. I look nothing like that now. I look old and tired and sad. I just wish that I could go back to age 18 and start some things over. Prepare myself for what is to come better. Maybe things could turn out a little bit differently. But I can't and I continue to feel like I was never meant to be here or that I am living on borrowed time. And the painful crux of it all is just how desperately I WANT to LIVE. I want to live so bad. I want to travel, I want to go to musicals, I want to sing and play music, and be in choir again. I want to go to seasonal festivals and Renaissance fairs. I want to swim underwater and go to the cinema. I want to eat a chocolate cake on my birthday surrounded by friends and family singing Happy Birthday enthusiastically. I want to open a music playlist and be able to get so completely lost in the music. I want to be able to have a normal sleep schedule and trust that I will sleep within 15-30 min after shutting my eyes. I want to be able to vacuum instead of hiding in a room with the door shut and my hands over my ears when my mom does it. I want to go to my loved ones' weddings, baby showers, anniversaries, parties, holiday gatherings... I want all of this back!
I so desperately want to live life and live it so well because it's the only one I've got, even if I wasn't supposed to have it. And I know I am not special. There are so many other people who have had life cruelly ripped from them by tinnitus and other health issues. I'm just one of so many. I have so many disabled friends now who struggle (most of them seem to struggle better than me though). It doesn't stop me from wishing that maybe, just maybe, I am special enough to get lucky.
I don't want to die, I just want the suffering to end.
Another bout of hearing loss and more tinnitus despite protection. It just amazes me that a) I can't go a year without losing hearing and b) normal sounds that are non-damaging seem to cause me hearing loss... Truly it does feel like I was not meant to be here at times. I still struggle to wear my hearing aids cause sometimes the extra noise is just... ugh. I miss being able to hear semi-normal. Everything is so quiet now. Quiet and muffled. I know if I manage to keep myself alive, that I will be a cochlear implant user one day. That scares me and breaks my heart.
Unrelated (or maybe it is?) to the ear struggles, my glaucoma/blind eye is such that I am at the point where my specialists want to remove it altogether. In my heart, I just know this is the correct choice, but it's my eye! I wanted to hold onto it. It's a part of me... But it causes so much pain and struggle.
I also developed dry eye disease in both eyes. No clue what caused it but I went from unbearable pain and laying down with my eyes closed most of the day to manageable most days. I have to take special blood serum drops that cost me or my mother $400+ a month, get my meibomian glands expressed, and use an ointment at night with special oil rubbed across my lids, and special cleansing wipes in the morning...
I also have developed something called Histamine Intolerance which means I can't really enjoy most food anymore. I have to stick to a special, very limited food list, or I get an upset stomach, my Eustachian tubes swell, eczema, itchy skin, more anxiety, insomnia... I've lost 30 pounds in the last 2 months. I am down to one meal a day because I live with my mother and we can't just afford to buy food only for me. I can never again have things like chocolate, cheese, milk (I can have gluten-free oat milk from one specific brand, but it's very expensive), oranges, strawberries, nuts, cakes, cheesecakes, bananas, kiwi, most fish, leftovers of any kind, etc... I really miss food.
And through therapy, which I've been attending for a few years now, I have learned that I have been grossly let down by health professionals since I was born. They didn't inform my mother of the risks of my congenital defect down the line. They knew NOTHING about infant depression/anxiety/trauma in the 90s. My surgery at 10 days old and the recovery period afterward (I had to be held face down for weeks and was not allowed to move from that position for anything and was not allowed to turn my head or tilt it) caused me something known as Pediatric Medical Trauma Stress which turned into C-PTSD, depression, anxiety, and likely triggered my ADHD later in life and set off all the other things wrong with me slowly but surely.
If you're wondering how the hell I am still here, I don't have any other answer than the only thing I seem to be good at and blessed with in this life are friends. And my mother. I have suuuuuch a fraught and complicated relationship with my mother but she's the only parent I've ever had and I know she loves me even if she cannot do emotional displays or empathy very well.
I am 30 years old now. Even seeing the 10-year-old profile picture I have up here makes me sad. I look nothing like that now. I look old and tired and sad. I just wish that I could go back to age 18 and start some things over. Prepare myself for what is to come better. Maybe things could turn out a little bit differently. But I can't and I continue to feel like I was never meant to be here or that I am living on borrowed time. And the painful crux of it all is just how desperately I WANT to LIVE. I want to live so bad. I want to travel, I want to go to musicals, I want to sing and play music, and be in choir again. I want to go to seasonal festivals and Renaissance fairs. I want to swim underwater and go to the cinema. I want to eat a chocolate cake on my birthday surrounded by friends and family singing Happy Birthday enthusiastically. I want to open a music playlist and be able to get so completely lost in the music. I want to be able to have a normal sleep schedule and trust that I will sleep within 15-30 min after shutting my eyes. I want to be able to vacuum instead of hiding in a room with the door shut and my hands over my ears when my mom does it. I want to go to my loved ones' weddings, baby showers, anniversaries, parties, holiday gatherings... I want all of this back!
I so desperately want to live life and live it so well because it's the only one I've got, even if I wasn't supposed to have it. And I know I am not special. There are so many other people who have had life cruelly ripped from them by tinnitus and other health issues. I'm just one of so many. I have so many disabled friends now who struggle (most of them seem to struggle better than me though). It doesn't stop me from wishing that maybe, just maybe, I am special enough to get lucky.
I don't want to die, I just want the suffering to end.