Wednesday, 24 December 2008

3 months and counting

It's been more than a month since I've written on here, how I've neglected my poor blog.. I haven't written because I feel not much has changed, I feel I'm not having many "what's that?" moments and because I've been waiting till I felt positive to write on here. Even though I feel the above, things have changed, it has improved and I'm now probably hearing about the same as I was before with two hearing aids. I have been spending a lot of time wearing my H.A together with the C.I in really noisy situations (such as the pub, or a party - there's been lots of those in the lead up to Christmas!) and this helps to keep me sane because I just cannot manage in noisy situations with only my C.I. Music through the C.I has really improved, there's more melody as opposed to when I could just hear the voice of the singer, the beat of the drums and another instrument. It's still better with the hearing aid but it's always changing and I can't keep up with it!

I can hear the birds when I walk out to my car in the morning and I could never hear high pitched birds before, I could only hear the 'coo,coo' sound of pigeons.. Now I'm hearing lots of different birds - my only problem is locating where they are! I turn to the direction I think they're in and they're not there, so I turn to the opposite direction and they're still not there! Half the time I think they're hiding in the bushes to torment me as if to say "we're here but we're not showing you where we are!!"

I still can't really hear my car engine but there is a huge difference between the amplified sound of the car engine I get through my H.A and the quietness I get through my C.I. It's SO noisy through my H.A! So when I'm in the car I'm quite happy to turn my H.A off and have some peace and quiet..

My rehab sessions at the hospital finished about 3-4 weeks ago although I had one last week which was interesting as I hadn't been for what felt like a long time so I was interested to see what the results would be considering I hadn't done any concentrated listening for some time. It took a while for my brain to get into listening mode but once it did, I got some really good results. I can hear most of a sentence in the environment of the soundproofed room and the rehabilitationist read two paragraphs about the country of Bali to me. I picked up two-three important words in a sentence which gave me the gist of the sentence and I was pleased to understand most of what she was saying. Translate this into the real world however, with background noise such as the tv and it doesn't quite work the same way! My boyfriend's voice is still the hardest to listen to, but that's because I don't see him very often and so don't get much opportunity to get used to his deep voice. Everyone else sounds 'normal' though and there's no computerised sound to their voices anymore - I'm pleased to say!

I have my 4 month programming on the 13th January and I can't wait to see how much it changes after this..

Monday, 10 November 2008

I'm now HA free most of the time...

You'll be pleased to hear I've spent the majority of the past week without my Hearing Aid! I can manage in a work situation without it and generally know how loud/quiet I should be speaking. What I don't have is surround sound so I'm looking forward to the time when I can wear the two together and have bilateral sound again. After a discussion with my rehabilitationist I decided I'm going to pursue with just my processor for another couple of weeks and see how it goes day by day. I wear my HA when listening to music as this keeps me sane, I miss music too much to go without it and it just doesn't sound right through the processor yet.

I had a tuning last week which made an incredible difference to how much low sound I can hear. The physicist didn't change much on my map but adjusted the rate that the information is going through to my nerve at.. he increased this twice and after the second adjustment I could hear how deep his voice was. Up until that moment he sounded like any other person but now he sounds like I remember him sounding with a hearing aid. I couldn't cope with all the information that was coming through in the beginning so they had to turn my rate down, but now I've had more experience with listening I can manage the world again! In a rehab appointment after this tuning I was able to hear sentences when I had the context and usually able to grasp a sentence if I had an important word in it. In a more recent rehab appointment I improved even more and was able to hear sentences on at least the first attempt. The rehabilitationist went through all the months in the year to see if I had any difficulties with these but I'm pleased to say I had none. Easy peasy, lemon squeezy!

I've actually just noticed typing on my laptop keyboard for this post that I can hear the lower sounds of my fingers hitting the keys. When I was first switched on I didn't like the sound of typing as it was so high and sounded like a woodpecker going "tt,tt,tt,tt,tt," in my head. Now it sounds more like a soft thudding sound. I was relieved after a conversation that I had with the rehabilitationist that the lower sounds WILL come through eventually, my brain is still getting over the shock of hearing high sounds again that these are dominating the lower sounds. I was starting to worry that I would never hear my car engine properly again but I've just got to give it time.. I have so many quiet realisation moments like the keyboard one above that I can't remember them all to write about them on here. I'm getting used to speech and can't wait for the day when everything sounds balanced and no one sound is more dominant than another.

Tuesday, 28 October 2008

One month since switch on... I'm feeling good!

I realised yesterday that it's been just over 4 weeks since I've been switched on. I can't believe how slowly time has been going, but I also can't believe how much time has also passed! When I think back to what I was hearing through my processor a month ago and compare it to what I hear now, it's amazing. From "beep, beep, beep" and a bird in my ear to sounds that are becoming increasingly better shaped, if that makes sense! What's even more amazing is that it's my brain doing all the work to change the sounds into what they should sound like - in such a short space of time..

I've been to London today and I was happy to order my train ticket at the station with just my processor, I sat on the train and was really annoyed at having to listen to people's conversations on their mobiles! I can't hear voices clearly but I know they're talking and it's bloody annoying when you've settled down with a good magazine and some nice snacks expecting a quiet journey! I did the same again on the train home and as it was rush hour everyone was tired and so no one was talking - giving me time to enjoy the peace and work out what the occasional noises were. Coughs are becoming clearer, they've been a sharp noise up until now but when I hear it, I know it's a cough, not something that makes me jump out of my seat anymore! The only thing I do struggle with (which is a common problem with implantees and hearing people anyway) is multiple voices in the same room, I can't pick out who's who or focus on one particular voice. My mum tells me this will get easier as I get more used to listening with it and I can hear more sounds.

Time for a funny story.. yesterday mum and I were talking about the credit crunch and she mentioned JCB knickers operators have taken a 50% pay cut to avoid redundancy. However, when she said knickers I realised, "that doesn't sound right, knickers taking a pay cut?" So I said "knickers?" and she replied "no, diggers!". It gave us quite a giggle and I was very pleased I had something silly that I'd misheard that I could put on here! My mum's voice is also starting to sound more like I remembering it sounding. I've already mentioned people are sounding weird, almost mechanical and that I couldn't hear feeling in their voices. Well, I think that is changing.. I can hear which words people are emphasising and accents are beginning to come through. I'm trying to find time to practice with my audiobooks that the Emmeline Centre have given me because I know that this will help with my speech recognition. The man reading the story is so slow though that I get bored with it easily so I'm just doing a chapter at a time - the book is: Three men in a boat.

As you can probably tell, I'm having a positive day and I can't wait for my next tune up on Thursday afternoon. Perserverance is a real key with an implant and just when I'm feeling down about the whole thing my bionic ear gives me a new sound or I realise I can hear a sound in better quality since switch on. I wouldn't go as far to say I love it yet, because I'm still enjoying using my other HA (naughty me) and I like it when I have both on because my processor gives me the higher sounds and my hearing aid gives me the lower sounds and everyone/everything sounds human! I'm also pleased to say that kissing Anthony is a much nicer sound to listen to. It sounds like a kiss instead of a beep or whistle and I can hear all of it clearly. Let's see what my physicist does on Thursday and we'll see how the sound changes even more...

Friday, 24 October 2008

24th October 2008

Very sorry I haven't written in here for a long time, I've not been feeling very positive lately and have been tired everytime I've sat down to write so I decided I would wait until I felt a bit more positive. I won't write a lot today as I'm going through a little period of "can't be bothered" to write on here so I'll just give a quick update.. Speech is becoming a lot clearer, but it's still monotone so everybody sounds the same and we found in a rehab appointment on Thursday that I really struggle to hear the letter 'm' with my processor so this is something for me to work on.

I have gone though phases of feeling really positive and happy to wear just my processor and other days when I want both my processor and my HA on to give me a bit of "normalness". I have been adjusted once since I last wrote, to get rid of the start up noise, which I'm pleased to say has gone and so it is much more pleasant to put it back on when it falls off! The audiologist also brought my lower thresholds down to try and give me some more lower sounds and I noticed an immediate difference in how many more speech sounds I could hear which was great. I think it's slowly getting quieter and quieter but at the same time the amount of things I'm hearing is increasing which is a bit of an oxymoron but good progress nevertheless! So I'm looking forward to my next tuning which is in a week's time and I'm really looking forward to having my map changed more! Music is becoming clearer, I can hear more of the melody and the lyrics are more obvious, 3 weeks ago they were very quiet and I struggled to hear them. That's all I'm going to write for today, I hope I find some renewed energy for this blog somewhere!

Tuesday, 14 October 2008

I'm in Limbo...

Well I had my 3rd mapping done on Friday last week. She only changed a few of the electrodes so the difference wasn't huge. The reason for this was because I had that emergency mapping done so I'd already been adjusted quite a bit. After the 3rd mapping I hoped I would be able to hear a little bit better or at least be picking up a wider range of sounds. I was disappointed to find that it sounded much the same! However, the more I listen, the more I can tell that there is more sound coming through. I can hear cars whooshing past in my car even when all the windows are closed. And it sounds real too, like a whoosh sound. I heard my mum's cuckoo clock ticking from across the room and I have never heard it before. In tesco today I was dawdling in the cereal aisle and kept turning around when a lady squeaked a dog's toy behind me because I wanted to confirm that's what I had heard. She must have thought I was getting annoyed with her! Speech is still a weird sound, if I have subtitles on the tv or a film what I'm hearing sounds right but if I've no idea what's coming I couldn't tell you what people were saying. It's possible that some sounds are robotic but I really can't tell at the moment, it's still monotone. Plastic, paper and bags are the most annoying sounds at the moment. They're so scratchy and uncomfortable I have stopped swinging my bags! I heard someone's trousers behind me swishing along the floor outside today with a lot of background noise.. I wouldn't have heard this with two hearing aids as the background noise would have drowned it out. I'm still not feeling 100% happy about all of this because I'm being impatient and there's not enough sound coming through all the time to give me the information I want. I.e how loud or quiet should I be talking in a situation, do I need to tread lighter in order not to stamp along school corridors (I have a very heavy tread anyway!) But all those little sounds that I can hear and mentioned above give me a warm good feeling inside that makes me think, well the more of those I have, the more I'll feel I've done the right thing..

I had a rehab appointment at the hospital after the tuning and in this I had to do lots of listening practice which was really hard. It's the first time I've really listened and I was pleased to find that I could follow the speakers voice as they read from a script. I struggled a little with identifying an everyday sound but I was able to hear the rhythm of the noise or say whether it was high or low. I was exhausted after this appointment but pleased as I felt I was making progress. I didn't get told off for wearing my hearing either but they did "encourage" me to spend time with just my processor on to practice listening and as I type this post, I have been wearing just my processor for the past 3 hours so I'm doing good. :o) The reason I'm in Limbo is because it's just over two weeks till my next tuning. I want to be tuned every week and have more and more sound come in during those tunings because I'm impatient to hear well again! However, I have a lot more listening practice to do and so that time will encourage me to work hard. I'm going every week for rehab and the next one is tomorrow so I'll write soon to let you know what happens!

Thursday, 9 October 2008

The day before my 3rd mapping

I'm off to the hospital tomorrow for my third mapping. I wanted to update this before I go so that I have a before and after memoir! I have had some real ups and downs in the past week and a bit. The first few days after switch on were a nightmare. All I could hear was what sounded like birds in my ear all day. "Shh", "ch" and "ss" were the only clear sounds. By Wednesday I was very emotional, hating the implant and all I wanted to do was rip it off and hurl it at the nearest wall! I cried a lot that day and lots of my colleagues witnessed this, but I couldn't pretend I was happy when I clearly wasn't. Because of this state that I got in I really wanted to go back to the Emmeline Centre and change the settings. From talking to others and what I felt personally, I decided that I'd set my comfortably loud sounds too loud and wanted to get them turned down. I also wanted emotional reassurance from professionals that things were going to get better! So I went back to the hospital on Friday and I spent a good hour or so with the Physicist adjusting all the levels and he tried to give me more lower sounds as I could not hear these as yet. I went away from that appointment feeling much happier and the sounds I was hearing didn't give me such a headache. I still reluctantly wore it but over the weekend something happened to my attitude. At a concert on Sunday I fully expected to remove the processor and enjoy the music with just one hearing aid. However, I took it off and felt unbalanced without it! OMG... So I put it back on and wore it for the whole evening, beeps and all! I have continued to wear it with my hearing aid all week and just wearing the processor in the mornings and evenings at home or any other opportunity when it's quiet and I can focus on noises around me. I can hear my very loud kitchen clock ticking from two metres away and couldn't do this with just my hearing aids. I can hear my car indicator ticking and couldn't do this before.

My colleague tested what I could hear using six sounds that are used to test childrens hearing with their implants; ooh, arr, eee, mmm, sss and shh. If there were two sounds to choose from I could discriminate which sound she'd said. If I was choosing one from all six I didn't do as well. I tended to confuse ooh with mmm and sss with eee as these latter sounds are quite high. I was very pleased with these results though and felt good that just over a week after being switched on I'm able to discriminate between these sounds and it can only improve. I might have been able to distinguish these sounds with my two hearing aids but I certainly would have struggled with the higher sounds and these are the sounds I'm now having success hearing again.

Some things are no longer sounding beepy - I scratched a rough velcro strip on Wed after switch on to see what it sounded like and instead of sounding scratchy it sounded like "beep,beep,beep" in very quick succession. Now, things are starting to make sense, paper and plastic are still weird but getting there. Speech is very boring to listen to as the higher frequencies are clearish but the rest is low and monotonous, like a very boring maths teacher droning on at the same frequency. So, if I sing along to music with just my implant I start singing with a low, boring voice and I switch my hearing aid on and realise the music is soaring and my voice should be too! I must be getting used to these higher sounds though as the lower ones are starting to come through. I'm looking forward to tomorrow and seeing how much it changes afterwards!

Wednesday, 1 October 2008

My activated cochlear implant!

My Advanced Bionics Cochlear Implant complete with 'rockets' headcap...

It's all healed apart from a small scab at the top under my hair.. and my hair is an inch long - it's growing quickly!

My scar the day after the op

I haven't washed my ear yet but it all looks great and isn't too sore :o)

Friday 22nd - Home after the op

At home resting on my parent's couch - feeling dizzy and sick and my hair's a mess but I'm home.

Tuesday, 30 September 2008

29th September 2008 - switch on day!

Yesterday I got switched on. The whole process was very nerve wracking and emotional - here's why. My appointment was at 10am and first I had to find the lowest sounds that I could hear with the implant. The first time they sent a sound through my implant into my nerve was extremely strange. It felt like there was an electronic pulse going through my head and it made a kind of "whum" noise. The first few times this happened I twitched my neck and couldn't believe that's what it felt like! Then it turned into sound and the noise was high pitched. The audiologist lowered it and lowered it until I could no longer hear it. This was very difficult and I had to do it again and again with different frequencies. The next exercise I had to find what was "comfortably loud" for all the frequencies. This exercise was even harder than the first because it's impossible to know what volume I can tolerate high pitched noises at for a whole day! I cried during this bit because it was so hard and I was also feeling like "is this what I'm going to be hearing when they switch it on properly? High pitched whistles?. Once I'd got over it we finished this and then they turned it on!

At first I had a continuous whistle noise in my head/ears which was quite uncomfortable and then gradually within a few minutes it had faded and I was only hearing it every time there was a high pitched speech sound or another sound. However, high pitched speech sounds feature very often in conversation! I ended up hating the word "so" because it really penetrated my head. We then had to adjust my lowest settings as I'd got used listening with it and could actually go lower. They then sent me outside for lunch and I had to return in an hour to pick up everything else and my Advanced Bionics monkey! (Their mascot is a monkey.) I walked outside and I couldn't hear anything. I spent the majority of the time in what felt like silence and only high pitched noises penetrated this "silence". However, when I took it off I knew then it was really silent. Because they've set it so low I can barely hear anything but I know there's constant noise because it's not what it's like when it's off. I absolutely hate it at the moment because I know there's so much more noise I should be hearing but I know there's a lot more tunings and hard work to come. Ant shouted at me really loudly with my back to him and I didn't hear him. Or I might have done but everything's so jumbled at the moment I can't make sense of it. The only time I recognise a sound in this high pitched jungle I'm living in at the moment is if it's a solitary sound that I'm aware is happening. For example, putting a cup down on the table, turning a page, sniffling and so on. The only sounds that sound like they should are the wind and my sniffs! Kissing Ant isn't very pleasant because every kiss is punctuated with a high pitched whistle. I hope it develops as time passes and I don't have to live with this all the time... My next tune isn't till Oct 10th so I've got what feels like a long time to wait!

Tuesday, 23 September 2008

The period in between op and switch on...

I can't believe it's been almost a month since I wrote a new post. I've been going through an intense experience since then. I had a check up with Mr Gray on the 9th September and all was fine, I had an X-ray and got yet another sick note for work! I started back at work on the 16th September and it's been difficult managing with one hearing aid. It took a long time for me to be ready for work as I couldn't drive as this involved turning my head quickly and I couldn't do that without losing focus for a few seconds. Another thing that affected my speedy recovery was my tinnitus. If I overexerted myself or heard a loud sound this would trigger off a noise resembling a plane taking off in my ears or drums beating over and over again. I found it very difficult to be in Tesco in the first few weeks as I couldn't distinguish between all the different sounds - children talking/screaming, people talking, trolleys and general hubbub. Based on this, I knew that a classroom experience was going to be difficult and it was but I have slowly got used to not being able to localise sounds and tried to relax a bit. Apart from now battling a cold I'm feeling almost 100% and it's nearly 5 weeks since the operation. My scar is healing very well and my hair is about 8-10mm long and growing far quicker than I expected it to! I have taken photos but I'm not able to put them up on here, sorry.

My switch on date is 29th September! I had hoped it would be sooner but I just have to be patient. I'm worried I've made the wrong decision but I've done it now so I'm commited - ooops, bit late to decide that! I'm only worried because I've no idea what I'm going to hear when they activate the implant. I hope that people's voices sound normal. That will be the hardest thing to cope with, I think, if people sound different. I'll be patient and I'm not expecting miracles or for it to sound like I expect it to sound like. I'm quietly optimistic about the long term future though, it's so exciting to think I might be able to hear without lip-reading, talk to people through closed doors and maybe even hear on the phone. :o) We'll see.. It's going to be so weird having a magnet on my head (I can feel where it is) and I'm not sure I'm going to be happy with the fact I've chosen a rainbow coloured cap! But as Anthony said, I should be proud of it, not want to hide it... Haha! Watch this space!

Friday, 29 August 2008

8 Days Later...

And I'm almost back to normal! The dizziness slowly improved and I am now able to respond to the sound of my name at normal speed as opposed to turning my head very very slowly in whichever direction needed.. I'm no longer walking like an old woman either and can walk up and down stairs unaided now. I used to go up a stair at a time and had to hold onto the banister! Around about the 3-4 day mark I felt able to do things for myself again. I have been sleeping fine which is nice as it means I'm not tired during the day. I managed to do a trip around Tesco on Tuesday and I walked around Ely on Wednesday which was lovely as it was so nice to get out again. I did feel tired after these things but not overtired. I scratched my scar on the 2nd night whilst sleeping which made it bleed a little and now it looks worse than it should because of all the dried blood but otherwise all is healing well! I put my hearing aid in the implanted ear yesterday and turned it on and could hear... nothing. Absolute zilch. I already knew that I was going to hear nothing though because I couldn't hear Anthony screaming in my ear. This made me very upset and I had a little cry, it was so strange to realise I'm never going to hear naturally again in that ear. It did make me think whether I've done the right thing but now I just have to look forward to switch on date (which I don't have yet) and look forward to better things. I'm going to see Mr Gray on the 9th September for a check up and hopefully switch on should be shortly after that!

Wednesday, 27 August 2008

Friday 22nd August - my birthday!

I didn't eat anything at all yesterday, didn't fancy anything. I ate a few bites of cucumber from my sandwich as it had lots of moisture.. My mum ate my dinner for me! I got woken up today by the catering lady at 7:30am for breakfast and I'd ordered a croissant, yoghurt and special k cereal so this is what was put in front of me. I only ate the yoghurt and drank the orange juice. I wanted the croissant but couldn't face chewing it! Mr Gray came in about 8:30am and removed my bandage. This didn't hurt at all, I expected it to. He was very happy with the wound and said that the operation had gone very well, it was just under 2 hours long. He managed to get all the electrodes in and all the way into the cochlear so that's great. My hair was all over the place and had dried blood in it so I was not looking good! He also took off more hair than I was expecting him to but 'ce la vie'... I couldn't face brushing the tangled mess and I was still suffering from dizziness so I left it and walked out of the Nuffield with my mum and boyfriend - still wearing my pyjamas - at 10:50am. I made Anthony drive like an old woman on the way home as I was still trying to gain complete control of my stomach! I turned 23 today but didn't feel like celebrating it. I share my birthday with my younger brother who's 4 years younger than me and this evening he had friends round in the garden and they were drinking and having a good time. Unfortunately I couldn't join them! I'm staying at my parents for a few days as my mum wants to look after me which is nice. I've got purified water with a straw and anything I want at the drop of a hat! :o) Still not eating much and my tongue is numb all down the right side but I'd rather have this than a dropped face or one of the other possible side effects! I'm very lucky really..

Thursday 21st August - Operation Day!

As expected, I didn't sleep very well last night and was so glad when at 6am my alarm went off because I could finally get out of bed and get on with things! I didn't feel too nervous and packed all my stuff up and went to pick my Mum up with my boyfriend. We were a bit late arriving at the Nuffield at 7:30am but all was fine and I was taken to my own room very quickly and we settled in to wait for Mr Gray. I changed into my gown immediately and was given some anti-thrombosis socks which kept my legs warm! Mr Gray came around and said that he had two children to operate on first *groan* but they were simple operations so he hoped to have me in the theatre about 11:30am. That was quite a wait! We passed the time by watching the Olympics, laughing at the people on Jeremy Kyle and reading magazines and doing puzzles. What fun(!) 11:30am came and went and we joked about how Mr Gray is optimistic.. 12pm and the nurse came into my room and said "they were ready for me in theatre" ARRGGGHHH!! The moment of truth had finally arrived and I didn't run for the hills.. I wasn't allowed to have anyone come down to theatre with me so I hugged my boyfriend and my mum and said "see ya later"... Being put under was not a pleasant experience, two men pinned me down and put an IV into my left arm and then one of them said something which I didn't hear. The last thing I remember is saying "tens?" and a funny chemical feeling passing up into my head, making me feel sick. I think I went under with my eyes still open because I don't remember closing them! I was also crying at this point because I was alone.
Two hours later I came round in Recovery and couldn't see out of the bandage around my forehead. I panicked and the nurse wouldn't let me move it so I could see what she was saying and I felt sick anyway so I promptly threw up all over the side of the bed and probably hit the nurse with it all! Whoops... They decided to move me back to my room about half past two and I wasn't looking forward to this because I couldn't control the movement and lo and behold I was sick again into a kidney shaped bowl on the way to my room which was only 150 yards away! They stabbed me in the leg/bottom to inject anti sickness medication (despite the fact I had an IV line in!!) and this didn't work and they gave me two little painkiller tablets which I promptly threw up! I said to mum (who's got an implant too, implanted nine years ago) "You didn't tell me it would hurt THIS much!" as I was in quite a bit of pain around the scar. I was sick many times over the course of 4 hours, finally regaining control of my stomach around 6pm. I slept after each throw up bout and the rest of the day was as follows sleep/wake up and talk briefly/sleep until everyone left about 8pm and I slept well for the first night.

Wednesday, 20 August 2008

The night before...

There's an hour and a half to go before I'm not allowed to eat anything until after my operation. I plan to go and drink a gallon of orange juice or something sweet and I'll savour it hee hee! I can't believe Thursday morning is coming around so fast but I'm glad the waiting is nearly over. I'm still employing my favourite tactic which is to not think about it at all and I'm fine. Tomorrow morning when I walk into the Nuffield I'll feel very different. I've told Ant to take some photos so I can put them on here afterwards :o) I can't think of anything else to write!
Well that's all for now folks.. watch this space!

Thursday, 7 August 2008

Two weeks to go..

This time in two weeks I'll be sleeping off the anaesthetic in my own room in hospital.. The thought of that does not make me want to run for the hills like it did the day I filled out the health questionnaire. I had an appointment at Nuffield on the 5th July to have an MRSA swab and I met the nurse who will be on the ward on the 21st and she answered lots of questions that I had about the day. What I need to bring with me, what I can wear into the theatre (nothing but my own cotton knickers!! And a hosp gown of course..), why we have to go in so early at 7:15am (so that Mr Gray can walk around and see everyone he will operate on that day.) Whether anyone can stay overnight (I'll probably be on my own.. ooh err.) and so on and so on. For some reason this chat with the nurse has really allayed my fears and I'm now feeling a mixture of tiny bits of excitement, quite a lot of nervousness but also a curious anticipation! This may change, of course, so just watch this space... :o)

Sunday, 27 July 2008

My first panic about everything

27th July 2008: I had to fill out a health questionnaire sent to me by Nuffield Hospital (I’m having my operation there) and this opened the floodgates of fear and worry. I am absolutely terrified (this isn’t a good enough word for what I feel) of the operation and what is going to happen afterwards. I’m dreading going into hospital as I’ve never had an operation before and I’m dreading being put to sleep and letting Mr Gray loose on my head to shave some hair off and go close to my facial nerves during the operation! I wish my boyfriend was around to help allay my fears but he’s on holiday until the 11th August. My own family are going away tomorrow so I’m going to be left alone with my fears until Anthony comes back. I don’t want to talk to my friends because I know that it’s not going to help. I just want to be held until it’s time to go in and have it done. What has helped me today is researching people who have had it done, it all seems to be so positive. I know that I will be ok and I will come out the other side. What I’m scared of is a fear of the unknown because I’ve no idea what I’ll be able to hear after the switch on. I’m scared of everything sounding different and not liking it and wanting to go back to hearing aids. The problem is, I won’t be able to do this in the ear that I’ll have been implanted in! I also know it’s going to be a lot of hard work, learning to listen again and make sense of sounds. So I’ve just got to keep reminding myself that it’ll be ok, I’ll hopefully be able to hear better and I won’t regret it when all the hard work’s over. One side of me keeps saying “Why are you doing this? You’re saying goodbye to everything you’ve ever known for 18 years.” Because, even though I know I miss out on the higher frequencies of sounds and quite a lot of other things, I still think I’m a hearing persona and nothing needs to be changed. But then, having one way conversations on the phone with my boyfriend does not make me happy. The prospect of possibly hearing his voice a bit clearer does. The prospect of hearing my friends talk to me without straining my eyes and my neck all the time does. Hearing myself say the letter ‘s’ does. I can only feel myself saying it and having to repeat my own name which begins with the letter ‘s’ to strangers is getting very annoying. My policy from now until 21st August (my operation date) is not to think about it and try to look forward to it. :D

Final appointment at Emmeline Centre

10th July 2008: I had my final appointment today to fill out a questionnaire based on my current hearing levels and what I expect from having a cochlear implant. Then they did another baseline test of my hearing using the “screen test”. This is a man on a tv screen with a blue background and he says sentences which you have to lip-read and repeat back to the audiologist/ speech therapist what you heard/lip-read. They do this test with no sound and lip-reading, then with one ear listening and lip-reading, then the other ear, then both and finally I did some listening of sentences coming out of speakers. They found that my lip-reading is excellent and that I did even better when I had sound to back up what I was seeing. They also said I am making excellent use of my language and visual skills to help put together all the pieces of the jigsaw puzzle that is sound. My right ear tended to be better at listening independently than my left but both ears together was better than one. I was able to pick up single words, perhaps two in a sentence. I was usually able to tell the intonation of a word or sentence but would not have enough information from listening alone to know what a sentence contained.

Deciding which bionic ear I wanted

4th July 2008: I had another appointment at the Emmeline Centre to choose which device I would like to have implanted. I had already decided that I liked Advanced Bionics because colleagues had influenced me. The fact that you can change the colour of the BTE and headcap was also a little bit of an influence! The appointment started with someone explaining to me (again! Because I still haven’t learn it..) how a cochlear implant works and then she pushed the three different devices in front of me and attempted to explain the different features that they have. I tried them all on and found that Med-el didn’t sit on my ear very well and I didn’t like the fact that it has a remote control to operate it. What if I temporarily mislaid the remote control (I hardly ever lose things) and couldn’t change the settings or even turn it on?! So I took this one off my list and tried the Cochlear Nucleus one on next. My mother has this brand (has done for 9 years and likes it, is very happy with it) so I wanted to consider it. However, I found it too bulky at the bottom of the BTE, it’s narrow at the top and gets wider as it gets longer so I took this one off the list too! This obviously left me with Advanced Bionics Harmony High Res 120. I tried this one on and it felt very comfortable even if the microphone coming down the front of the ear felt a bit odd. It was also very odd to picture myself with the headcap/magnet at the back of my head. This was the realisation moment for me… I thought “this is what it’s going to look like” and strangely it wasn’t too much of a shock and I felt, for the first time, a little bit of excitement since this whole process began! My only dilemma now was what colour I should have the BTE in. It comes in beige (which is darker than a hearing aid beige, more a light brown), black and silver. I wanted the beige as this is the colour I’ve always had in my hearing aids and it would better match my hair colour. My boyfriend wanted me to have black as he said “I should be proud of it, show it off and black is cooler than BEIGE!”. After much dithering and changing my mind over the next week or so I finally settled on silver. This colour combines everything my boyfriend says but isn’t as obvious as the black or as ugly as the beige. I’ve chosen accent caps that are patterned and can have a rainbow headcap if I want! (I love rainbows, me.)

The day I told everyone I work with

2nd July 2008: Today was the Family Support Group at Mayfield where I was working as a Deaf Support Worker which is my full time job. Only the day after I told everyone that I’d decided to have the implant and the general consensus was of approval and excitement. A few who know me better than others were worried that I was rushing into it and so were anxious for me. It felt good to tell everyone that I was going to have it, as if by telling everyone I was preventing myself from backing out of the whole thing. However, there were a few children at the group today who have implants, some bilateral and that is the inspiring thing for me - the kick up the bottom to have it done! I think it’s amazing when I see one child I work with who has a unilateral implant making noises which is not much more than a screaming garbled mess but that child can hear themselves and that is leading them to make noise. It’s also amazing to see them listen to a sound and then attempt to replicate it with a good degree of success! I can’t wait to watch them grow up and start speaking and hear sounds. The main reason I have decided to have this implant is because I have a progressive hearing loss (which has been stable for about 10 years) and I have noticed I can’t hear old songs as well as I used to be able to. I can see how well children are doing with implants and would like some of that hearing for myself. By deciding to have an implant I can continue to attempt to keep up the pretence that I’m a hearing person!

The day I signed my life away

1st July 2008: I was offered a cochlear implant today! I wasn’t expecting the surgeon Mr Axon to be so direct and so I was totally blown away when I heard “we’d like to offer you a cochlear implant” and he sat there with an expectant look on his face. I couldn’t answer him there and then so I asked him for some thinking time, meaning a day or so. He clearly wasn’t expecting this but accepted it. I left the consultation room and sat in the corridor with my boyfriend. We talked together and also talked to a member of the Emmeline team and after a few tears I finally decided to do it and said yes to the staff member. I felt sick and anxious for the rest of the day and my boyfriend was a huge strength in keeping me up and relaxed about it all. I just have to not think about it and it’s absolutely fine.