Scared, lost and full of questions

Hi, I'm Louby!

I am in my twenties. I have had brilliant hearing nearly all my life. In the last four years I have been aware that my hearing wasn't as good, but I didn't feel it was worth going to my doctor. I also have tinnitus. Whilst staying with my sibling this last Christmas, we fell out time and time again all because she was frustrated at having to repeat things to me or me "not listening" to her. I promised I'd go to the doctor. I was referred to an audiologist in February/March and I was told I have a degenerative, inherited condition and that I would go profoundly deaf. At that point I was told I had between mild and moderate hearing loss. I went back last week and I was told I now have between severe and profound hearing loss in that short time. I was told that I will lose all hearing from any time now to the next few years if I'm lucky. Everything's so slow, I haven't even had the appointment to have hearing aids yet.

I'm feeling very lost, scared and quite lonely. I already have a history of severe depression and my hearing loss is making my mood wobbly.

For those of you who used to have hearing, what are the sounds you miss the most? I want to try and hear as many different sounds from the world whilst I still can....ideas please?

welcome to AD, some of us has been there!!!! (there's some Naida peeps U may see around all the time)

Welcome to AD!

Since you have been hearing up to this point, have you looked into CI at all ? If not you might want to talk to your audiologist about them.

Hi Louby and welcome to AD. There are many of us here who have had your exact same experience. I lost all of my hearing overnight. No warning, no time to prepare. I would suggest learning ASL (American Sign Language). It is not the end of the world. Things will be fine just different.


Sounds I miss the most are definitely music, daughters playing piano, violin, cello.

This is a great place to meet others in the same situation and also to get amazing information and help. Good luck.

Don't lose hope..technology is changing and improving all the time.

I miss the wind rustling the leaves and hearing the sounds of cars passing in the night....I can still hear but I had a hearing test recently and my hearing is changing again. It's ever so slight but it's still moving and not in the direction I want. It is scary....but you're not alone.

Laura

Laura-good point! (no wonder I still have the old version of Sensei) *might look at Sensei soon or whatever LOL*

hey Louby! my hearing is fading as well. im not completely deaf however there are sounds i can't remember if i heard like rain, wind, birds, flies.....i cant hear my bf whisper. but these things are okay because it worked out for something good.

i love being more apart of the Deaf community

Thank you

Thank you all so much for your welcomes and comments, it is so nice to not feel so alone. I've still got lots of questions...would you mind please answering at least a few as it would help me and reassure me a lot. Thank you.

1. Do you ever feel lonely as a result of being deaf?
2. I'm worried my hearing friends won't want anything to do with me any more, . did this happen to you?
3. Will I be able to play a musical instrument, or is that not a good idea?!
4. Over the years, will my speech be effected?
5. How do you manage when you are sitting at a long table with lots of people?
6. How do you manage to fly / train etc...what happens when announcements are made?
7. I'm in the UK, can anyone over here recommend any courses etc?

Louby said:

Thank you all so much for your welcomes and comments, it is so nice to not feel so alone. I've still got lots of questions...would you mind please answering at least a few as it would help me and reassure me a lot. Thank you.

1. Do you ever feel lonely as a result of being deaf?
2. I'm worried my hearing friends won't want anything to do with me any more, . did this happen to you?
3. Will I be able to play a musical instrument, or is that not a good idea?!
4. Over the years, will my speech be effected?
5. How do you manage when you are sitting at a long table with lots of people?
6. How do you manage to fly / train etc...what happens when announcements are made?
7. I'm in the UK, can anyone over here recommend any courses etc?

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Hi there, I was actually born deaf but I could at least help answer some of your questions.

1. Sometimes I do because as you know, you may not be able to hear everything in a group of people. Also, you have to put in efforts to "listen" which can be exhausting so you would rather just be left alone than putting in so much work to hear everything.
2. If your friends are really your true friends, they will not leave you. They will stay you and help you in whatever way they can. I learned that when I befriend someone and they find that it's "too much" to keep up with a deaf friend, I quit our friendship immediately because they seem "toxins" to me. So if that happens to you, leave these people.
3. Of course you can. I actually used to play a musical instrument when I was younger, not anymore nowadays. You can feel the vibrations through the musical instrument - I think percussions could be helpful because the beats are loud and clear and you can tell them apart whereas playing a tuba or a saxophone mixes all the sounds together into one music. It's totally up to you but you can definitely play a musical instrument.
4. That's a good question but based on what I've spoken to people, the speech seems to be affected in some way after they lose their hearing because they are not hearing themselves speak anymore. I would suggest having an assessment with a speech-language pathologist and see what he/she suggests to help you prevent your speech from deteriorating. As for now, practice a lot with a friend so that you can maintain your speech development. Most likely, it will not be hugely affected since you had hearing in your childhood and speech development is formative in early years but first check with your SLP.
5. I stay quiet. Haha, I never speak to people, even those who sit next to me, at a long table. Sorry for this unhelpful people
6. I have some difficulty hearing announcements on a bus or a train. If that happens, I would suggest asking someone beside you. Most of the time, the strangers are really friendly and can tell you. However, if you can't hear the announcement, how would you know it that you go ask the stranger next to you? If you can't hear anything at all, then I would suggest that you sit near the train conductor or something and see if that person is making an announcement. If that happens, then ask the stranger next to you. I rely on 'visual world' to help me navigate - I commute 16 miles to my school and use this method.

Nonetheless, losing your hearing is definitely hard but trust me, life will get better. I promise you.

welcome to Alldeaf

iscreamncake said:

hey Louby! my hearing is fading as well. im not completely deaf however there are sounds i can't remember if i heard like rain, wind, birds, flies.....i cant hear my bf whisper. but these things are okay because it worked out for something good.

i love being more apart of the Deaf community

Click to expand...

that's funny because I could not hear whispers but now I can thanks to modern tech!

Welcome to all deaf.....learn sign.....sign is the superior technology....no batteries, no computers in a hole in your head, no wires, no false promises or bloated bullshit by white coated doctors wanting to turn you into their pet frankesntiens...
Learn sign