Comments on: All for nothing? It might be.

By: Andy’s Techie Blog » Blog Archive » 2010 has been a year of….

Fri, 31 Dec 2010 12:13:22 +0000

[...] Unfortunately the operation didn’t work out as expected. While from a clinical perspective the operation went fine, practically it didn’t make any improvements. Bryony persisted with it as long as she could but the implant was actually unbearable to use.(she explains it here) [...]

By: laura J

laura J — Thu, 22 Apr 2010 11:55:31 +0000

Thanks for the reply bryony. it must be incredibly hard getting used to the CI being deaf all of your life. I agree you must put certain priorities ie. your children first in your life. There’s no real rush with the CI if you should choose to wear it or not. if not thats ok too, its not for everyone and i appreciate how hard you have tried with it. its good your audio’s understand that will help. Are you on facebook? if not never mind x

By: BryonyParkes

BryonyParkes — Thu, 22 Apr 2010 11:37:39 +0000

I have been overwhelmed by the response to this post and I thank you all.

Laura, thank you for your message. In answer to your question, I was born deaf and have been profoundly deaf all my life. I have tried to wear the CI 24/7 but due to the reasons I listed in my post, I really genuinely physically cannot. It really is unbearable and as I have two children who need their Mum on board, I need to take this into consideration. My audiologists have been brilliant, trying lots of things.

Vivie, your post was really great to read. Thank you for taking the time to write and a lot of what you say makes sense.

By: Greek_CI

Greek_CI — Wed, 21 Apr 2010 21:23:35 +0000

Hello…

I just read your latest post only , as I’m a newcomer…

Your post struck home for me…

When I first got the CI I felt the same..

Distorted sounds.Anger.Disappointment.I even had the pain on my ear from early activation ( 7 days after op ).

I wore it only when I absolutely had to.I had my heart racing every time I wore it.I was afraid I’d keel over a lot of times.Sometimes I’d cry a lot.And I was so angry and sad with myself that I never blogged about it or let it out.

I made a rule to wear it for speech therapy.two hours a week.After that time I’d usually leave it on till I couldn’t manage it anymore.Sometimes I ripped it off when I was on the way going home.

I used to dread putting on the CI and hearing all the damn clocks tick tocking and put my heart racing.

I tried to not pressure myself.I went with mappings and not a lot of things changed , so I stopped trying with my audie.

But somewhere along the way I noticed I tended to wear it a little more.It was a long battle for me.A big adjustment.Minute by minute increments a week.

It was such an uphill battle with me , that sometimes I don’t know how I pulled along.But I’m still doing it.I don’t wear it as much as everyone else, but in the way I accepted it and I’m ok with that.It’s not a sprint.Its a marathon.I still have a deaf day every few days.

Plus , lipreading ? it is still with me but it’s gotten easier now.But the start ? I used to be confused.My parents were disappointed with me.They were trying to soldier me on and encourage me.

Writing all about it now , 2 years down in the road this may , it seems so distant.And yet fresh as a nightmare.

So don’t pressure yourself.Wear it when you can.When you feel you can’t take it anymore , pop coil off and try again when you feel ready.Everyone’s journey is different.I didn’t have the speedy acclimation like my friends , but it was all right.Just soldier on.And if you can get the audie to bend his ear to your woes ( mine didn’t ) tell him to lower sensitivity.Start over.Do more frequent or less frequent appts.Whatever works for you.

And maybe , just maybe , few years down the road you’ll feel you’re finally climbed uphill and you can smile.

Sorry if I made you feel worse though.I just wanted to share.And show you we’re not all miracle workers.
Wait.We’re all miracle workers! But , some of us , are struggling the long way.

Either way , do anything that works for you.Hugs.a LOT of hugs.I will cheer you every bit of the way, WHATEVER is your decision.

Cheers,

Vivie , from Greece.

By: Dad

Dad — Wed, 21 Apr 2010 21:20:23 +0000

You are letting no one down, quite the opposite. I am full of admiration for the way you continue trying to find optimism, and I know there’s plenty in the rest of your life to take your energy anyway. If you carry on, we’ll keep fingers crossed for you; if you decide enough is enough, that’s fine. We’ll be disappointed for you but not disappointed in you in any way at all.
Have a virtual hug from me.
xxx

By: laura J

laura J — Wed, 21 Apr 2010 20:13:59 +0000

hello im sorry you are having a hard time with the ci. how long have you been deaf? it is quite hard for someone to get a ci and get used to it. i got mine when i was a kid. but it must be a lot harder for an adult getting it. BUT you do need to wear it 24.7 to get totally used to it. and the disorted, muffed sounds DO get clearer as time goes on. maybe its worth talking to your audioligist and tell them your worries about it and maybe they can try and make it eaiser for you? keep at it and if its not for you then dont worry. no one will hate you x

By: Kirsty (Girlypie)

Kirsty (Girlypie) — Tue, 20 Apr 2010 22:38:00 +0000

Gosh B, I cannot imagine how hard this is for you xxxx

By: J

Tue, 20 Apr 2010 20:58:35 +0000

Hi B,
Like a few others have said, you don’t need to apologise, you’ve not let anyone down. It’s not your fault that it hasn’t worked yet. I for one do understand to some extent how you must be feeling.
I’ll still hope that the seemingly impossible happens and it starts working for you very soon. Regardless of the outcome, you’ll come through this a stronger person.

Lots of love and hugs xxx

By: BryonyParkes

BryonyParkes — Tue, 20 Apr 2010 20:57:54 +0000

To everyone who has commented, thank you xx

By: Liz Haydon-Turner (Lowkey)

Liz Haydon-Turner (Lowkey) — Tue, 20 Apr 2010 20:26:29 +0000

Oh gosh so sorry that your journey with the CI is such a tough one. I’ve been reading your blog with interest for a while and I’m amazed at what you’ve gone through. Here’s hoping things improve or if they don’t then you find an equilibrium you’re happy with. Hugs x.