Hitting that year mark

A year since the surgery...

I have recently hit that a year post surgery mark (on the 12th of July). Yup its a big milestone. A year since I had the surgery to give me access to the hearing world again. Soon it will be a year since my switch on which is on the 9th of August. I remember that day like it was yesterday - hearing my mam's laugh sounding like bells, people being daleky sounding and even hearing birds; which still bug the hell out of me. Aye I cannot stand them!

The last few months have been so manic that I haven't had time to update the blog. So many things have happened. For example I have recently gained a job. I still some days cannot believe how wonderful my CI's are - the fact I can hear people in a noisy shop environment whilst serving customers. Yet my hearing have improved even more, with me recently having my CI's tuned at Nottingham on my final tuning post switch on block.

Ropewalk did their normal thing of checking my hearing through all the beeps and buzzes on different frequencies starting quiet then getting louder. After that I had to do a listening test which involved me listening to a voice from speakers dotted around the room. I must say that was the weirdest thing I experienced. Hearing a little girls' voice saying 'Where am I?' 'Can you hear me?' with me then having to figure out where the sound came from.
Going a little off track here but it reminded me of a Doctor Who episode with a little boy going 'Are you my mummy'. That's how strange it was hearing that recording!

During that test I was also trying out a new programme called Scanner, which my audiologist put onto the processors. Basically what Scanner does is automatically adjusting my CI's according to the environmental sounds. So if it hears speech the CI's turn up louder if I cannot hear the person I am focusing on. However it does get it wrong occasionally, for example listening to my heavy rock/ metal music in my room on loud. It thinks I want it to be quieter so it turns down. Slightly annoying but I just switch my processors onto a normal programme now when listening to music so I don't  have this problem.  
Although the Scanner has become amazing at  work when I am listening to different accents and people who mumble. In the case of the accents it tries to balance them out and the mumbling get turns up a heck lot louder!
Just before I left Ropewalk, my audiologist told me that I had one decibel off nearly full hearing range like hearies. I was gobsmacked its better than what I ever had when I was a hearing aid user. This reminds me to the time last year where I was only considering only one CI or even not having it done. So glad I went down the route of having both done, even though that took some convincing. Thanks Mam and my TOD's!


Still pimping the CI's...

Since the sunshine came out I began decorating my CI's for different events I have had. Such as birthdays, weddings and proms. I have noticed it had began to catch on more in my area even old people are doing it!

Rhinestones, nail foils and washi tape are the best for any types of aids as they are easy to put on and remove.

Here are a few I have done:

So what's next on the horizon...

I am counting down to my Switch On birthday and to celebrate it; I am planning to get a big chocolate muffin and stick a candle in it (*singsongy* happy birthday CI's)...
I am also waiting for AS results day in mid August. Hopefully, this extra year I have took because of what happened with me losing my hearing last year affecting my exam results, will have paid off and will be worth it.
Also I have a fab summer with volunteering with NDCS on their summer camps.

Let the madness to begin! 
 

The good, the bad and the ugly - the relationship between me and my radio aids!

 Radio Aid,

We have had our ups and downs haven't we? Over the many years we have been together. There has been times where you have changed shape completely.
Some being good, some being so completely annoying that I have fallen out with you. I think finally me and you are finally coming to a good place. As I no longer have to wear you. Whhooop!

I do think that you are a marvellous piece of technology but after today it was the last straw.  

Before Christmas I began to cut down on my sign support as I wanted to become more independent with my own learning.  So this is where the radio aid comes in. The comfort audio. 

It is a brilliant radio and one of the best that I have had during my time at school and 6th form (when it works). Outside school it works like a dream but once it steps inside the school it seems to want to shut down and decide to take a break. Many times  it didn't get on with my Nucleus 5, even my hearing aids it seemed to have a problem! It turned out that the fault lies with the building as its a new built. So the guy from the company for Audio Comfort comes in and tries his best to solve the problem of interference and intermittent. The sound is dreadful, the best I can describe it as fingernails being scraped down a blackboard or chairs rubbing against the floor repeatedly. When its not that sound its a person voice being purposefully cut out in lessons. It was today that it became the last straw doing all of this and worse I couldn't cope in class. 

During English, I handed over my radio aid to my teacher who has a beard. Its one of those lessons where I can't cope with my CI's solely as the lip pattern is covered. The first few minutes the radio aid was working fine. It puzzled me as it didn't do this before without something happening sound wise. 

Then the teacher was getting into full flow of lecturing, the thing I was dreading kicked in. The voice was cutting out every few seconds, I couldn't hear my peers without switching my T-Loop system off which means a few more seconds delay. I was missing vital information. Which lead to me asking my note taker and teacher to repeat everything. It was getting to the point where it was every sentence I had to interrupt him to get it repeated. After what must have been the 20th time I become frustrated and it was becoming embarrassing! 

It lead to me leaving my class upset, claiming that I was going to do independent revision. 

My CSW came in shortly afterwards and I relayed everything which happened in class. She immediately rang some of the T's of D to ask what they recommended the best course of action was.

I was offered another piece of equipment called the sound field system which apparent helps not only deafies but hearies as well. Great eh? 

Well unfortunately I didn't get that and ended up with something called a desk mate. 

I trialed this the next day and oh boy I loved it. It was so much clearer than a radio aid. The best way to describe what it look like is this: it has a speaker and head mike set. The speaker would sit on my desk or in front of me (a volume setting that I could turn up or down when I wanted) and the head mike would be around the person head. It reminds me of a person teaching aerobics at the gym. It's a funny sight and for once its not the deafie being conscious of having the equipment and standing out. Its the teacher. 

One teacher was freaked out by his voice, the fact that his beard has never helped me; this tech was a huge benefit! No longer the days of trying to make out what he was saying through the mumbles and the hair that covered his lip pattern. 

Another teacher thought it reminded her of Madonna singing in the 90's or something like that.  She kept wanting to burst out into song. 

Whilst that sounds all well and good that the desk mate is actually benefitting me. I am still having problems working out what my fellow peers are saying. The desk mate gives me directly what the teacher is saying but it doesn't help when someone at the other end of the room is saying something. I am back to square one on that problem....

This I have relayed to one of my T of D's and she said that "I just need to work on my listening. However, I shouldn't have to do that as I now have 'normal' hearing." 

This statement came about from one of the recent test I did with the T of D from Nottingham. The test involved me listening to the TOD read out a passage and I had to repeat what was said. I did this brilliantly according to her and was getting 100 words per minute, apparently this is was hearies should be getting. So I was please that I was achieving my best. I will point out that this test was done in a quiet environment with just me and her. 

This is what the local TOD couldn't grasp no matter how many times I said it.  I no longer felt I needed to do auditory training. 

What I needed was somehow solve the problem of not hearing my peers from a distance. Having a CSW did this interpreting anything I missed, but this had been pulled as I was seen that I no longer needed this kind support. 

Having CI's doesn't give me 100% hearing, I am always going to have off days where I don't want to wear my CI's due to listening fatigue or if it was being 'robotic' again like it is every time I go for a tunning.

Guess what the genius piece advice I was given by someone "maybe take the processors off" well slight problem there, no processors means no sound and I thought the whole point of me having the operation was to hear. Hmmmm... 

So come monday is a another week of 6th form and hopefully some miracle come out of it, some how I can hear my peers or my note takers develop the speed of lightening to write down what my peers are saying during discussion. 

That I will continue to like the deskmate. The only thing I am looking forward to is seeing my teachers expressions when I tell them that they have to wear the headmike. 

Annnndddd rant over! 

A year since...

A year since...

Almost anyone who knows me, wouldn't believe its been a year since my hearing 'packed up and left the building.'
Even I can't believe how much has changed!

A year ago at the start of January my hearing went, I wouldn't believe where I am now. A person who has bionic hearing, who can control my ears to what levels I want to hear. Even the hearies of my family are well jealous, I think hearing my sister play out a squeaky pop boy band is enough to drive anyone batty. Thank god for the remote that I have that came with my new Nucleus 6 that I received two weeks ago.

Oh yes! I finally got my Nucleus 6 after a long wait. However, the journey to getting them was a so not fun. Me and my mam got stuck on the motorway for 3 hours which eventually lead to me missing my appointment. But with my CI centre being such a lovely group of people I finally got them. It turned out I wasn't the only person to missed their appointment that day due to the horrid journey on the motorway. Thank goodness my audiologist was willing to programme them. Thank you my Audiologist C! 

'pimped' pink ci's

Whilst programming the CI's I noticed that they were so much lighter. So light that I couldn't feel them on my ears. It was so weird. Even now after getting use to them for a few weeks I can tell the weight is there but isn't as heavy as a my hearing aids or the Nucleus 5 was. In terms of size and shape they are defiantly a lot sleeker.
The colour of the CI's were slightly darker than my N5's were but I could solve this by 'pimping' them. As when I entered the room. My audiologist C, noticed that they were jazzed up with an shiny bright pink which caught her eye immediately. She asked if they were Skinits. I told her they were done with nail foils and this amazed her. So the 'pimping' effect is being spread further ha-ha! 

After the appointment...

Once I was finally programmed with three settings to work through like normally. However, I should finally be evening out my hearing levels according to my audiologist and won't need to have much volume as it should now be like 'normal' hearing. My next appointment will be a year since I got switched on and it will an anniversary of bionic hearing that I am eternally grateful for.
Anyways back to after the appointment. The CI's were really weird. It was like being back in August when I got switched on all 'Dalek' sounding. However speaking to some other CI's wearers this shouldn't really happen. Well I suppose its got to happen to someone, typical its me.
It took a whole week for the robotic/Dalek sounding to finally fade and I worked from the first setting to the second as it was sounding very quiet after two days. With having the remote handy, I was able to adjust the volume within the setting/programme.
Now nearly two and a bit weeks on since gaining these CI's I am on the loudest programme and the volume is nearly on full, (even now I am still brain training more than six months on).
I tend to adjust this due to the environments at 6th form. For example being in one class its continuously noisy and I am having to compete with the surrounding noises. Whereas in another it is so different by being so quiet. It also doesn't help when the teacher is softly spoken and has a beard which makes lip-reading difficult. However, I still rely on SSE in some classes such as the one above to cope with the lesson. Whereas in other classes I have relied on my ears more and its paid off!

Hopefully this progress keeps going and eventually I won't have to rely on sign language or lip-reading as much!

Well I'm off to christen my new CI's and pimp them with a bright outrageous colour!

Well where do I start?

Tons of time has passed...

Yeah I know its been a long time since I have wrote anything on my hearing journey. It's been such a crazy last few months; involving my birthday, many tunings, concerts and cramming in my A Level studies.
 
6th Form...

Overall, my CI's have been awesome! I am managing to hold conversations without looking at the person. When my name is called out in class I response straight away, well pretty much straight away.
Even some of my teachers have been left gobsmacked with me responding. I think its to do with the fact I haven't done this in a long time and its always someone waving their hand in my face or prodding me on the arm to get my attention to start with. I am starting to not rely on my interpreters as much, although the odd bearded teacher makes it incredibly hard to lip-read still. (Shave it off dude!)

Anyways its all looking positive in terms of 6th form.
The school have finally set up a T-Loop system and it works! No longer the days where I look clueless in assemblies; having to ask me friends to wrote notes down or relay the information to me afterwards.
I am pleased that even in the lower school kids are starting to become more deaf aware. Having several sign classes set up with myself teaching one; its ace to see them trying to sign at break and lunch.

I have had several tuning since my switch on back in August and each time I am accessing more sound. The couple days after the tuning I have to get use to people voices again. They sound like really robotic like Daleks. It is amusing in classes at 6th form; trying to take a teacher or a guest lecturer seriously.  

In terms of hearing new sounds there haven't been that many recently but back in September my friend zipping up her jacket freaked me out. I ended up getting her to zip it up a couple of times, till it sounded as it should have done through my hearing aids.
Even my history teacher made jump out of my seat when he was writing on the board. He thought that he was talking too loud and said that he couldn't whisper then everyone else wouldn't hear. I had to explain that it was the board pen. The awful squeaking noise that came with it. How the hell do hearing people cope with it. Oh yeah I remember its just 'white noise'. So I have now moved away from the board to avoid this dreaded noise every time he writes. Such peace!

Every week I have been doing some listening tests to see if I can still pick up the phonetics, words and sentences within a noisy background. Its amazing that I can still hear even with all the noises which surrounds me. I would never have been able to do this with my hearing aids and without relying heavily on lip-reading.

Fireworks, Concerts and Cinemas...

Surrounding Bonfire Night the fireworks were so loud, I actually thought a bomb had exploded and was running round the house like a lunatic checking if my siblings were alright. I ended by embarrassed by my hearing sister saying it was just fireworks.
Jeez-Marie! So I eventually ended up going to a firework display and wanted to experience it with the whole noises of 'bang and boom'. I must admit to be glad that I was able to take my CI's off!

I went to my first concert since being switched on. I can say its an experience. Hearing every single words of the songs, even the instruments sound crystal clear though my CI's.
Also visiting the Cinema several times and tried hearing through both the T-Loop system and without. I can't believe the clarity and not having to rely on subtitles either.


Upgrading and 'Pimping' my CI's...

I am due to upgrade my CI's soon after Christmas to the Nucleus 6. I was suppose to have this back in August but my implant centre didn't have it in stock. After researching in depth back in June/July, I didn't originally want this technology as when listening to music it would involve wearing a box around my neck rather than wires, as its apparently wireless.
Great I thought. However I hate wearing things around my neck was refusing a first to have it.
However, Cochlear have released two models of the implant. One being exactly like the Nucleus 5 and I could still plug in my iPod whilst functioning with the wireless system as well. The other just being wireless.
My Teacher for the Deaf came to visit me a few weeks ago and happily informed me that when I was upgraded I would have the model which I could still plug into. I literally jumped out of my seat going 'YES'. A late Christmas present to me would be a new processor system. Yay!

I have begun 'pimping' my CI's after being inspired by a Facebook group 'Pimp My Hearing Aids / Cochlear Implants', which a few of my friends recommended. At first I didn't want my CI's to stand out - partly due the fact that I was getting use to them and the other being I was a little embarrassed but I got over that within the first few weeks.
Now my CI's stand out in their colourful themes. I first started off with gems after being inspired to  have a really girl theme. Now I have a more seasonal theme that is slightly Christmassy, my brother says that they look like wrapping paper. Charming eh?

 (1)

 (2)

  
I am going to match them to an outfit when I go out for  a meal with friends next week, despite it being so fiddly, its worth it!

I think you sound like a dude...

The next few days after the switch on...

It's the next morning and my implant is starting to sound a little more normal. I was also going to my grandparents house later on to show them my implants. Before I went there, my family made a quick stop at the supermarket to pick up some ingredients to make a banana cake. (It was yum I must admit!) Walking through the supermarket was fairly fine, I was on the second programme as the first one seemed too quiet compared to the day before after being switched on. The audiologist did say this would happen.
Up and down each aisle was a weird experience, I could hear the rustle of packaging when people picked them up. Trolley's banging into one another was really loud. It got worse when I was at the checkout. With all the noises of people putting things on the belt and sounds from people talking; got too much. So I ended up just pulling the magnet off my head until we left the shop. Reaching the doors, the magnets clipped back onto my head. I told my mam 'Quiet, finally', she just laughed and said 'This is what hearing people have to put up with regardless.'
Hmmm, sounds fun.

Being at my grandparents house, the noise was just immense. Too many conversational greeting going off at once made me pull a right face at my grandma. Luckily she didn't get offended and just kept laughing when I explained everything was really loud. Switching back to programme one again!
After this we all settled down onto the sofa's and gossip about recent events and what it was like to be switched on. I kept trying to come up with sounds which I knew to describe objects and what they we like to my grandparents as they are really curious.

On the Sunday I decided that I wanted to go swimming as it was a regular activity which I did on a weekend. Since the advice from the Doctors was not to swim 2 weeks before the operation and 4 weeks after I did actually miss the pool. The only nightmare about water was I had to wait for my hair to dry again before I could my implants back on. The peace and quiet was nice though.

Through out the rest of the week, friends and family we coming to see me and my CI's. They kept making noises to see if I could hear it (which I could), but the strange thing was they were no longer sounding the same both genders. They were actually sounding slightly different. Dudes were sounding like dudes and lasses were sounding like lasses. I quickly text my T of D of what had happened. I had finally broken through the barrier of people sounding alike.
Yippeeee!

The SWITCH ON!!!!

Friday 9th August...

My first switch on appointment, I was mega excited! I think anyone who was in my position would be. I knew not to expect much from this out come but from what I have heard so far after being switched on, I would say it is the best decision I have made this year and maybe the best so far in my life!

Setting off from home with my parents we were all going into the unknown, I have been told by many people, professionals and Cochlear Implant wearer, what to expect from the first switch on. Beeps and buzzes are all I will hear. That was ok, but deep down I knew I wasn't going to be satisfied with this. Oh well. My parents have told me that they just wanted me to hear something, anything is better than nothing, which I agreed on. On the way to Nottingham many people were texting me wishing me good luck with the switch on, but as we crept closer to Nottingham my nerves were playing up a little.
My dad was a little bewildered by the building of Ropewalk itself. He commented on it saying it looked like a swimming pool. This is what both me and me mam said on the first time we went.

Heading to the waiting room, there was a poster on the wall by a company which offered Teenagers to tell their story of their hearing loss/journey etc. My mam encouraged me to have ago at it, considering I am already do so, in this blog.
Whilst I was thinking whether to have ago, the audiologist entered the room, a big bubbly attitude and smile on her face. 'Hiding are you... Behind the wall?' Was the first thing out of her. I had to laugh, the waiting room is not exactly the best shape for deaf people to be in, as you cannot see if someone has called your name out as this wall is slap bang in the middle. My excuse was 'All the little kids were round that end of the wall, I wanted to hide.' The last time I went the kids were throwing balls at me, they were cute so I forgave them. Ha-ha!

The audiologist then lead me and my parents through a maze of corridors to the room, where I was to be wired up to the computer and be switched on! My right ear was first to be switched on, this was a really weird experience. (If your not a CI person then its going to sound even more strange when I explain.) The audiologist first had to find out the right magnet for my head as number 1 was useless! Eventually she put me on 5/6 magnets for both ears as my hair was so thick. My dad advised me by saying get a Mohawk. 
'HELL TO THE NO!' was my response which made all the adults in the room laugh.
Then the right ear was switched on, the audiologist said I may not hear it at first but after 7 or so clicks with the mouse. It wasn't a beep I heard, it was a crackle. The audiologist kept doing this until all my high frequencies on my right side was turned on. Then my left side was done in the same way with me saying I can hear it etc. Beep, buzz and crackle every time.

Shortly after this I had to see what was the maximum I could listen to in one go, sound-wise. I was handed a scale to point at if the sound was soft, soft but comfortable, comfortable, loud but comfortable, too loud.
After this I was told that one implant at a time was going to be switched on with all the sounds joined together. The left ear was just continuous beeps and buzzes. Then it was turned off, the right go. I could actually hear the audiologist voice. It was high pitch and very squeaky. Like Minnie Mouse or Donald Duck talking, depending on the distance away from me.
Both CI's were turned on together after this. A big shock to my system but awesome. I was told to allow the crackling to settle down for a second. Then I could hear the audiologist speak clearly but very high pitch and squeaky. Then was turn to hear my parents. I haven't hear them for nearly 8 months. I could hear them!
Very high pitch even my Dad was squeaky! I told my mam that I could hear, she laughed. It sounded like bells ringing. I told her that and she laughed even more. 'Bells, bells, bells...'

Afterwards I was told that I had 4 programmes to work through before I was to go back on the 23rd of August. 'Keep brain training' my audiologist told me just as I was to leave.

So me and my parents left to go out for dinner, they kept banging the cutlery about soon as we sat down. It was loud. Testing me on different sounds. I don't like the hand dryer as that gave me a shock, when it went on. Also I didn't realise that my feet had a noise every time I walked. Something new to experience.
As the day went by I experimented with sound, banging on the table, slamming doors. Sticking my head in the fridge to hear the fan noise which my sister says is there. Hmmm haven't heard it yet.

By the time I got to the evening, after showing my mates what my implants look like on and describing what they sounded like. Which gained some laughs along side the comments of EXTERMINATE (as I described one of my friends like a Dalek from Doctor Who) I decided to plug in my IPod as an experiment to see if I could hear anything.
I could *cue the smile plastering across my face*.
Hallelujah!

The CI's Equipment.

Getting the equipment...

Both of my teacher's for the deaf (T of D) came today, one from Nottingham who brought the equipment and the other from my local area.
The Nottingham teacher came bouncing through my doors lugging a huge black which looks like a laptop bag. 'This is your equipment' she said after putting it on the floor. My initial thoughts was all that for my hearing, Jeez-Marie!.
It intrigued my local teacher as being a teenager, who has a bilateral implants at my age is quite rare. Eager to see what the mystery bag held, the Nottingham teacher began by showing me my processors. Very shiny, thin! Slight problem the processor was brown where as the coil and wire was black. It turns out I made a mistake when ticking the box and choose the wrong colour for the coil. Ooops! She then told me I could change them when I go for the switch on, thank god!

Anyway, the T of D proceeded with explaining how the equipment worked and I was rather pleased that the battery usage was both rechargeable as well as hearing aid batteries. Then smaller boxes came out of this bag, with wires for connecting to music and cleaning thing. It was a lot of things just for two small items which allowed me to hear. She then told me that there was an instruction book off how to operate the processors, one look at it and I was like huh? Thank goodness she gave me a simple version of how to do it. Otherwise it would take me ages to figure it out!

So the switch on is on Friday, so both T of D's said they will see me within the next week to see how I am getting on. Excited but I know not to expect much I keep telling myself. So after a cuppa, some biscuits and a chat they left me to fiddle about with the processors as the magnet in the coil wouldn't attach to my head. Luckily I can ask at Nottingham, to change the strength of the magnet in order to attach it to myself.

Later that evening, my parents came home from work and I was bursting to tell them all about what I have learnt today. They themselves were having ago at trying on my processors for the weight, looking at the instruction booklets and threw the same facial expressions as I did. When I saw how many types of flashes of colour to remember and what they symbolised. My mam said 'Oh this is going to be fun, Beth!' I knew what she meant, as I do have a memory of a goldfish sometimes...

Anyways, come tomorrow its two more sleeps till the switch on! Yippee! :D