2nd day with N6 - in London

Went to a church group social first in a Oxford. Noticed that when I'm on the programme without the noise reducer, can hear sound of people talking further away, but whether they are near or far, I cannot make sense, so carry on lip read with deaf awareness being applied and only talk to people when deaf aware and one to one. 

Then headed to London, I stayed on programme 3 without noise reducer, and I love the environmental sounds of London and the London Underground etc. Could hear a tannoy on the platform but no idea what it said. I then met up with a good hearing friend who can sign BSL to do some light trails photography in Piccadilly Circus which was amazing and good fun. Good to hear the traffic and to hear sirens coming from further away. After our meal later, we then parted to go home. I decided to switch to programme 1, the one with the noise reducer and noooooo I hated it!!! It cut out the sound of my beloved tube trains and beloved London. Kept trying it til I got to Paddington to get my train home. Nope, my environmental sounds I love and enjoy weren't there. It tried to make me hear voices of people near me which were dead quiet and absolutely meaningless!! So strapped that... back to programme 3 without the noise reducer - ahhh that's better - hello environmental sounds of my beloved London!!!

Cochlear N6 Upgrade!!!

Hi all, today was the big day!!  I got my cochlear implant upgrade from the Cochlear Freedom to the Cochlear N6 their latest model.

So off I went to the CI centre at the hospital with all the bits and pieces that I received when I got my Cochlear Freedom implant on 3rd March 2008!!  It was weird walking in there with the kit bag.

I arrived into the room to receive my new CI and I saw black suitcase on the table next to my chair where I sit for the tuning.  When my CI tuner told me that it was my new box of bits for my new CI, I couldn't believe it!!  Well last time I did get a big cardboard box of bits but this time we get a suitcase of bits which was bigger than the box from last time!!!

Today my upgrade brought back alot of memories of my switch on, but this time I came along with experience!!

My CI tuner had already loaded my existing map (which was one of the best maps that I have had with my Cochlear Freedom) onto my new N6 CI.  then she handed it to me so that I could check it when it was still connected to the computer in case I needed any further tuning.  She switched it on and to me it sounded fine.

Then my CI tuner explained to me all the controls and the programmes on the new processor and how to use the remote and explained all the different accessories that were in the box.  Apparently, I can go swimming with this CI!!! but not in the sea!!

It was on programme 1 when I left the hospital which has the background noise reducer.  It cut out the sound of traffic and made music in a car sound like as though it was increasing and decreasing its volume which I didn't like very much so when I got home I tried programme 3 which has the background noise reducer switched OFF!!  On my Freedom CI, I always had the auto sensitivity (background noise reducer) switched off as I hated it!!

I was born profoundly Deaf and have worn for the majority of my life the highest powered Phonak Superfront analogue hearing aids which everything was really turned up to try and give me some sound as I couldnt hear much.  Modern day digital hearing aid / cochlear implant technology have this feature that reduces background noise.  I absolutely detest the background noise being reduced cos that the very thing we like our hearing aids or cochlear implants for as we don't understand speech comprehension as we could never access it earlier in our lives. I, therefore switched to programme 3.

And yes, there was some new developments when I got home...

My new CI is BETTER than my Freedom cos, with my Freedom, I could never hear sounds in the next room.  So I had gained new sounds already in the 1st hour of being home!!  They were.. hearing the kettle boiling from upstairs, hearing the clock ticking in the kitchen from inside my living room and i could hear a phone ringing at the recipent's end when my interpreter was making a call on her iphone with it held to her head!!!  Also with my Freedom, I was very sensitive to sound, alot of sound used to give me that nail scratching down the blackboard effect, but this has stopped with my N6!!  As lots of my born Deaf BSL using friends who were cochlear implanted in the last few years as adults could hear sounds in the next room and I couldn't and no one had that nail scratching down the blackboard effect except me.  It did made me wonder whether the problem I had with my Freedom CI a week after I was switched on was never fixed properly / resolved?????  I did suffer alot of discomfort (tingling in arms, made my heart feel like as though it was beating faster etc) with my Freedom CI that I couldn't wear it all the time.  Hopefully as the N6 is better, I will be able to wear it more and with comfort!!

I went out earlier this evening to get a couple of things in the city centre and I noticed new sounds which were doors shutting, but I still struggled with the speech side of things even with lip-reading that I had to ask people to write down what they are saying.  As being deaf from birth, it's the environmental sounds and music that's ok with CI and will be focusing on those.  The speech side of things is pointless!!

Tonight I returned home, I have been in my study and I have been playing my Christmas music on my ipod touch and yes, it sounds so much better, clearer and sharper!!  Can these developments carry on.. watch this space.................

Cochlear N6 upgrade

Hi all,

So sorry, I havent posted here for a long while.  Life has been crazy!!!! I have been to the USA in the summer on a FANTASTIC roadtrip holiday with plenty of music whilst driving through Arizona, Utah, Nevada and California!!!  I have become an Auntie and I have gone back to University and NOW I am about to get my CI upgrade from the Cochlear Freedom CI to the Cochlear N6!! So Guys, watch this space.................................

The Cotswolds - St Davids Day 2012

Was it really 2010 the last time I blogged? Ooh dear, I had better keep more up to date.

2011 went with a blur. The highlights of the year were skiing in the Swiss Alps at Wengen beneath the Jungfrau in Winter 2010 / 2011 and going to the USA last summer where I went with a friend to New York City and Washington, DC. Separate blogs will be written for those.

Anyway, my CI journey seem to be more settled. I have stopped wearing it in the places where my CI does not work and where I was 'pressurised' to be 'hearing' when I cannot be as I am profoundly deaf from birth and then get picked on / left out cos I cannot achieve that 'hearing' status which is to understand speech. I only wear my CI in the places and environments where it is ok to still be deaf with CI and where the inability to understand speech does not matter and/or where the person I am with is extremely deaf aware and with lip-reading and CI, I can follow what they say and have opportunity to ask them to repeat where necessary.

Anyway, I am typing today as I had the day off from work (booked annual leave) and with beautiful weather (after fog had lifted), I took an opportunity to explore the Cotswolds!! Despite the fact that I often travel / drive through and they are right on my doorstep, I had not properly stopped there to have a proper look round for many years. I decided to explore by travelling by bus.

My first stop was Northleach, a quaint beautiful old wool and market town in the Cotswolds. Here I had half an hour to change buses. There was not alot to see, as the town was so small, I stayed in the Market Place area close to the bus stop.

The Market Square was surrounded by very traditional shops and old inns, all in that golden coloured brick of the Cotswolds. There was a butchers, a grocers, a post office, a chemist and a bakers. It wasn't market day today so Market Place was used as a car park.

I watched the life that goes on in this quaint little town.

Most of the people who walked about were of the retired type. There was one or two Mothers with a kid in a pushchair but it was mainly older people who were taking their time in the stroll in the Market Square or sat on the bench next to the main road to admire the daffodils that were about to come to life.

It seemed like everyone knew everyone. The body language showed how people always addressed each other or have a joke. I stood there also admiring the 'sounds' of this quaint town. This I had never experienced before and was amazed at how far some sound could travel when there is less urbanised hustle and bustle noise going on. The sounds I picked up was possibly a blackbird as it was a high pitched melodic type, but I could not locate where he was. There was the noise of the odd car passing by or manuoevring in the car park. The old church chimed on the half hour and footsteps of people on the other side of the Market Square could be heard!! Then there was two couples (one couple with a dog) suddenley greeting each other in the car park. They stood there for a good 15 minutes and one thing I noticed was how loud they could be heard. I didnt have to 'strain' my ear or turn up any volume to hear their chatter in the car park within Market Place. Their talking seemed loud and seemed to be amplified by bouncing off the walls of the shops that surround Market Place. There were no other sounds. Their talking was so loud and clear. I could not understand what they were saying but thats due to me having no pathway to understand speech. Had I been able to understand speech, I am sure I would have picked out what they were saying. But I couldnt anyway.

Following Northleach, I visited Bourton on the Water. No CI moment there, and not even heard the ducks... perhaps they were quiet today? However I could hear their flying and flapping their wings in the water though. Following these I went on to Stow on the Wold and Moreton in Marsh. No more CI moments there.

Sunday 24th October 2010 - Evening Church Service

Today, I stayed at home most of the day and only went out to go to church at my Methodist Church where I am a member of, in the city centre. My experience with following church services at my church with my CI has improved more recently although I still need some support. They have had some deaf awareness training.

Deaf awareness training truely makes a MASSIVE difference!

The Minister, my friends and some of the stewards at the church are brilliant in meeting my needs. They are extremely deaf aware and integrate me into church's life. At church, I use my FM system as that gives me more power of sound than the loop system. My Minister is excellent with wearing the transmitter, and he is aware that I still have limitations with following, that he gives me his notes which are a great help. Another great help is that my friends also help with writing down whats being said of the bits I cannot follow. I have also noticed that more and more stuff in the church service are on powerpoint, that helps alot too. I have problem joining in with the hymns, so I sign them in British Sign Language. Everyone's used to that now :-) and they help me follow the hymns. Also, when we have Communion and we are kneeling at the altar, when our Minister says the prayer before we return to our seats, I look up to lip-read him and hes very good at making sure that I can see to lip-read him.

Deaf awareness really does make a difference.

Saturday 23rd October 2010 - Cambridge and BSL CIusers

Had a wonderful day today in Cambridge where I met two Deaf friends who also have Cochlear Implant (CI). Like me, they were both born profoundly deaf and brought up with British Sign Language (BSL) and in the Deaf World. They too, like me, objected to CI in the past as we saw them as a threat to the Deaf Community and our Deaf identities. Having seen more members of the Deaf Community who use BSL and have strong Deaf identities like me getting Cochlear Implants, our views are changing. We realised that with being cochlear implanted as adults, we don't change and there is no threat to BSL. We are still Deaf and although we can now hear environmental sounds and music, we still cannot follow speech except lip-reading 1 to 1 with a very Deaf aware hearing person. Due to the lack of our auditory experience growing up and being too deaf at the time our brains develop these auditory pathways for the comprehension of speech, despite the said benefits with environmental sounds and music, we still have alot more limitations with speech comprehension than those who were implanted very young or was hearing who became deafened and got cochlear implant. I must stress to you and remind you that the environmental sounds are not always identifable and due to being implanted and only hearing from one side only, the location of the sound source is impossible.

As BSL and the Deaf identity has not been threatened by born Deaf adults getting implanted, more and more BSL users Deafies are getting cochlear implants. I am amazed by how fast cochlear implants are spreading within the Deaf World and also how cochlear implants are becoming more and more accepted.

It was brilliant to meet my Deaf friends in Cambridge today as we have extremely similar experiences with our hearing experiences with the CI and dealing with similar attitude and expectations of hearing people. One of my friends had her implant for 6 months and she was concerned about her lack of progress and when I told her what I went through, she felt much better as I went through the same and that it was normal for us. The other friend only had his CI op last week, but meeting us and listening to our experiences will help him what to expect and what not to expect.

What a great time that I didnt get home until 2am!!

Apple's delight

And...following my last blog date in March this year - I can glady say that I have just upgraded my mobile to Apple's iPhone 4. What a Godsend!!! All the information I need on my fingertips and no need for the text relay service. The iPhone along with my Nokia Communicators is the best mobile and most accessible mobile I have had. I got rid of my BlackBerry the day after I got the iPhone :-)

Long time no hear!

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!!

New 32GB Ipod touch

Today, I also bought a brand new Apple ipod touch (2nd generation) and 32GB. It is amazing gadget and how now I really wish I have an iphone and not my current BlackBerry!! Roll on October to my mobile upgrade date!!

Currently now uploading the lyrics onto itunes for all of my songs in my itunes library so that it can be synced to my ipod and at least I finally have the words!!!! With my CI, music is amazing, and now with sound and words available via the written lyrics showing up on my ipod, I have alot of learning to do!!!

Conference speaking!!

Today, I spoke at the CI conference in London "Advancing technologies" and spoke to hearing and audiology professionals about the BSL user perspectives of their experience of having a CI. As I am a proud BSL user from a Deaf background, I decided to use BSL to present my presentation and used the interpreters to voice over for me. It was brilliant despite my nerves when I was sat there on the Northern Line tube train (which deliberately decided to have delays) especially when I wanted my presentation over and done with. I kept thinking "Oh I'm gonna forget to mention this and that etc"! But despite the delays on the Northern Line, I still got there on time as I made sure I allowed for delays!!

However, as soon I had got up to speak in front of 150+ people, introduced myself, my nerves vanished, I became more relaxed, I remembered my words without looking at the script and just used my powerpoint bullet points as triggers and away I went and I had fun.

It went down extremely well with people. It was a real eye opener for people to be aware of the cultural issues that arise (grown up with Deaf Culture in Deaf World and trying now to understand "hearing culture"). Also that CIs for us are no "quick fix" and that we still rely on BSL for access although one to one is easier PROVIDING the speaker is deaf aware!

However I got challenged at the end.... there was an older man who was obviously born hearing, grown up hearing culture who was deafened later in life. He was asking me "Why did you use BSL when presenting and not use your voice?" I explained that BSL is my natural language and I have a Deaf identity and belong to Deaf World and so I should portray this as that is part of me and where I am from. My voice is not exactly that clear, kinda monotoned and whilst speaking across a hall of 150+ people, I'm not sure if all will understand me nor hear me? How do I know if I am projecting my voice loud and clear enough?

I am pleased to be able to get out there and raise awareness of the experiences of CI with born Deaf, Culturally Deaf BSL users.

Don't Panic!!! I'm still here!!

Hey all,

Sorry long time no speak! Life has been mega hectic and busy, not helped by a problematic laptop. Now I have a new laptop that is much much faster and reliable and therefore more free time available so can update my blog - hopefully more regularly.

What have the going ons been since October?

My implant has continued to be a massive rollercoaster. Environmental sounds and music are very very good through my implant so I am really happy with it there for those things. However, I really hate my implant for voices in groups situations and hearing voices as background noise as they all sound like a shed of chickens that makes no sense at all, even when just trying to follow something being said between two people, especially when no Deaf awareness is applied. Voice through an implant sounds best through an FM system or in quiet rooms where there is NO other sound, but I still need to lip-read and still need the person to be Deaf Aware. I am still unable to understand what is being said on a radio, so those are still out of my life. As for music, cinema and TV, providing I have the lyrics and subtitles in front of me, am able to follow along and with the pace of it quite well. Had a great time seeing Avatar 3D with subtitles recently and it was great to get the full picture thanks to the subtitles.

As a result of having been able to identify the places where I get benefit from my implant and the places / situations where I dont get benefit from my implant, it makes it easier when to call in the interpreter at work. Where I can lipread the person then my interpreters know to let me lip-read and they monitor closely the communication situation and they seem to know immediately when I am lost or start to be lost and they step in to my rescue at the right time. I know the situations (e.g. groups) and the people who I cannot follow, so I automatically go back my old way and use BSL and interpreter 100% for that.

The current biggest battle I am facing at the moment is the attitude of some hearing people outside of work. My work colleagues are excellent in meeting and understanding my needs. However, I am having some real struggles with communication and the attitude of some hearing people outside of work. Some people who known me since before my CI who were Deaf aware before have ditched their deaf awareness since I got my CI and now I find it impossible or extremely hard work tyo communicate with them. I find that quite upsettting and very frustrating. There are also the attitude of some hearing people out there who have discriminated me cos they have expected me to understand what they are saying cos I have implant my speech is good. I feel like I'm hitting my head against a brick wall sometimes and I am so exhausted and fed up with having to remind people that it is not a quick fix and that due to my history of deafness since birth, speech comprehension is very very unlikely and that they STILL need to face me and be DEAF AWARE when they talk to me. Also, I have alot of CONFUSION re hearing culture, and am finding that quite difficult to adapt to. Due to this so much hard work, I don't wear my implant everyday - it takes alot out of me. I wear it most days in the week, but there are a couple of switch off days where I can go back to my old ways.

However, I am delighted to be invited to speak at two forthcoming conferences on CIs where I will be speaking about the born Deaf BSL user perspective on the experience of hearing with a CI.

Finally....at long last!!! Thursday 8th October 2009

Hey Guys, sorry long time no type.. it has been such a manic summer, and it has just flown by!! Anyway, now 18 months into having my CI, I still have ups and downs as I deal with new situations. The good stuff is that music and environment sounds is so plentiful and clearer. Speech is still hard to understand and I find background noise a real hindrance!!

Background noise at work is unbearable that I find that I have to take the CI off in order to concentrate as background noise is louder than what I want to hear and I dont have any control over that!! and there is one particular sound at work that has an effect on me same as nails stratching down a blackboard!! eugh!! When its quiet in the office then CI is great and clear. When there's noise then everything gets distorted and loud :-(

Newest sounds are: hearing the sauce bubbling in the casserole dish as I took it out of the oven last night.

Sunday 27th September 2009 - St Aubin, Jersey

Today was the first day of my holiday in Jersey and I went with one of my good CI friends. We had a great time.

On the first day we went and had a cup of tea in our B&B garden which was in the sun and had excellent sea views. There was a church nearby and suddenley the bells chimed and it made me jump out of my skin!! I didnt know what it was! Then Abi told me that it was the church bells! Also I have never heard so much screeching, siren like sounds before by the sea side and it was the sea gulls!! Gosh how you hearing people put up with that?? When we went for a walk on the beach later we could hear the waves on the beach and also the sand crunching beneath our feet.. I was amazed :-)

Wednesday 2nd September 2009 - Fizz!

Tonight a friend came round for pizza. I was pouring the coke out of the bottle into a glass and then there was this fisssssssss noise. I had no idea what that was and then it turned out to be the fizz at the top of the coke in the glass. I had no idea they made sounds like that!

Friday 14th August 2009 - U2 concert, Wembley Stadium, London

I had an amazing experience tonight when I went to see my favourite band U2 play live in concert at Wembley. U2 has been my fav band for 19 years and this was the first time I have seen them play live in concert. Also when I was at school, I used to play some of their songs on the electric guitar and in a group, so I know their songs and the chords really well. Anyway, tonight I could hear them really well with my cochlear implant and they were so clear and I could hear all the details except identify what the words were to the songs but I knew them anyway. I also had my hearing aid in the other ear which is the most powerful hearing aid (digital) that is available as I am so profoundly deaf. Anyway, during one of the songs I decided to compare what I could hear of the concert with each ear. I removed the magnet of the CI and lo and behold - the music just went!!! I could not hear the music with my hearing aid!! and it was over 80 dB in the stadium!! That just shows how much I am getting with my CI and how little I get with my hearing aid and what I had to put up with over the years!! Then I put my CI back on and the music came back loud and clear. I switched off the hearing aid and it made no difference to what I was hearing overall as really I was only hearing through my CI. It was a fantastic evening :-)

Thursday 18th June 2009 - Alarms!!

Tonight I was sitting at home at my house with my lap top in the living room. Sudden there was this alarm sounding. I thought perhaps it was inside my house like the smoke alarm or my burglar alarm and as I went to investigate it wasnt that. So I went outside to try and locate the sound. With being able to hear that sound with one ear, it is impossible to locate the sound. Then my neighbour came out too to see what the sound was. They listened for me to try and locate the sound and it turned out to be the burglar alarm of a neighbour's house 2 houses away!! I couldnt believe I could hear that!

Thursday 21st May 2009 - Cochlear Information Evening

Tonight I went to an information evening and this was good as it was present by my cochlear implant manufacture and they gave us more information about our cochlear implant. I met Charlotte and Sarah there and we had a great time. I learnt alittle more about my CI and good to meet other people.

Monday 11th May 2009 - Routine Tuning

Went back to the CI centre today for routine tuning and also to try and solve why I get clicks or crackles sometimes instead of normal beeps during tuning. One of the tech staff from Cochlear was there and we solved the problem... it was cos my skin is too thin and so the distance between the internal and external are too close. I now have an extra piece on my magnet which has solved this problem :-)

Sunday 10th May 2009 - new sound

Went into the city centre today with a friend and I noticed a new sound - church bells - I had never noticed that before in the city centre.

Friday 8th May 2009 - tuning

I have been having problems with my CI that one of the electrodes keeps turning itself up every two weeks then causing me pain :-( I have been going back and forth to the CI centre to have this electrode turned down. Today we have switched that electrode off and so I have 21 on instead of the full 22.

My God - what a difference it made.....much more comfortable and also the sounds sounded better. Today went to the pub at lunchtime with work and providing my colleagues in the group spoke one at a time and looked at me, I was able to follow the conversation for the FIRST time!!