Hello, sorry to have been so long. I have been having a very rocky journey with my CI, that I have actually began to wear it less and less. The problem that causes this is the attitude and high expectations of some hearing people. Life has also been pretty stressful with the fact that I have had to deal with so many things go wrong at home by problems caused by other people making careless mistakes. One of which was that I could not see out of my right eye for 5 months leading me to really struggle and was told by the opticians "there is nothing more we can do about it!" Being profoundly deaf and relying on British Sign Language to communicate, this was an absolutely horrific thing to say. Luckily, I discovered exactly where the error was! It wasnt my eye, it was the stupid optician. He had given me the WRONG prescription and didnt even bother to check that when I went back to try and sort it out. I was given a + prescription for my right eye was it was supposed to be a - prescription. I then went to a different optician near my work in May and he confirmed that I was right and that the other optician was wrong. I have now had the correct prescription since May and my right eye has been perfect vision again since!
I had pulled out of table table club cos they excluded me from conversations as they expected my CI to tell me what they are saying. No matter how I tried to explain to them, they didnt listen and they destroyed my confidence in me making a real effort to try to integrate in hearing world without sign language interpreters. I have been to afraid to try to meet groups of hearing people without sign language interpreters since. I really want to join the local Badminton club but am so nervous that I would have the same bad experience again. I thought the whole point of CI was to improve my chances of taking part in hearing world socially without interpreters. That's not working - I still need people to be Deaf aware or use British Sign Language. I might try join the Badminton Club, but I am NOT going to wearing CI. Luckily for me, my social life is already in the Deafworld where I have been since my early teens, where I can communicate freely and at ease using BSL. I am delighted to hear that there is a Deaf tennis club which I am quite interested in going along to.
I still have massive ups and downs with CI. I have accepted the limitations with it, and I dont expect miracles from it anymore. The hearing people who expect miracles need to be told that this is never going to happen and need to accept my deafness limitations as it is..
I now dont wear my CI all the time as it is not worth wearing it in the situations where I have the wrong people around me (non deaf aware), in hearing groups where people dont adapt to ensure I'm following conversation live (why should I have to accept a summary at the end? I might have something useful to say or have a good idea to contribute too! by the time I have a chance - it's too late!! grrr!!), at my house on my own (cos any strange noise, I will NOT have a clue where from, what it is and no one to advise me - it would just freak me out). Sometimes this is so stressful, and makes me so angry that many times I have felt like quitting that implant, or throwing it in the wheelie bin and never to wear it again. I daren't due to the expense of it. Then I realise, yes the CI is only an aid, I have been warned by the CI cedntre that it would never give me normal hearing and I would never develop the pathways that enable you to comprehend speech auditorally. So with my lack of auditory experience, there is a limit that the implant can do. I now realise that the love hate relationship that I have with my implant is greatly determined by the awareness and understanding of cochlear implant limitations from people around me and the efforts they make to make sure that I am integrated. I cannot do anymore than that.
Currently my hearing aid is broken - not that I hear much out of it in the first place!- so am back to CI alone. What strikes me is that the quietest sounds I now hear with CI is 40dB! Last year when I didnt wear hearing aid in other ear where just wore implant alone, my quietest hearing levels went up to 15dB! That doesnt mean I can understand speech, I can never understand speech - all mumbo jumbo!! I have noticed alot of sounds are missing - hearing water starting to boil in a pan in the kitchen, the click from my oven when the required cooking temperature has been reached!! I didnt realised! Now going back to CI centre on 1st Nov in time for bonfire night. I am also needing to consider again whether its worth wearing hearing aid again -I have the most powerful one you can ever get - Phonak Naida.
Listening through a CI is such hard work especially when you are so used to silence for 33 years, that I still need CI free days, to enable my brain to take a rest. This can occur on any day of the week and anywhere. Thanks goodness for British Sign Language!!