The Last Post

Days since activation of implant: 15

Hello Dear Readers.

Today is going to be my last post on this blog.

As far as my cochlear implant journey goes, there isn't really much new to report each day - me telling you about sounds you are familiar with is Not such exciting reading!

I thought I'd sum up the whole experience (to date) so that if any of you are thinking about an implant for yourself or a member of your family you have my opinion - like it or not :)

So here goes!

Before

• Make sure that your audiologist gives you the choice of where you will be treated, and check out your options. I am really pleased I chose Glan Clywd - they have been marvellous, treating me like a human being with thoughts, ideas and feelings at all times.
• Try and find a buddy (if you are lucky like me your hospital will help). Getting to know Carla was really important to me (when if I did come across as having a hair fixation). Know one really understands like someone who has also walked down the same path, wearing the same shoes. I'm lucky now in that I have a friend for life in Carla.
• Talk. What I mean is, don't bottle things up. Even if you just manage to tell people that you feel scared, say it. 
• Make sure that you fully research different implant manufacturers (not all implants are the same). Try and find one that will work for YOU in YOUR life.
• Lean on your friends and family. In my case my wider family just weren't there. My friends have been invaluable - they have shown me such kindness and understanding, even when I was at my most manic.
• My own immediate family - Hubby, Dear Son and Dear Daughter have been, and continue to be amazing.

During (surgery)

• Rest - it's pretty major having your head unzipped. 
• Sleep as much as you can.
• Don't be embarrassed about your bald head - show it off with pride - it's one of the few times you can get away with a really wacky hair do :)

After (switch on)

• Expect the unexpected - everybody's experiences are different. Mine was amusing, some people's emotional.
• Be realistic - it DOES sound very different from anything you have ever heard before.
• Give yourself a break, if you have had years of deafness it WILL take time to get used to using your brain in a different way.
• Don't be embarrassed about wearing your implant - it is cool head gear for special people! AND don't let other people make you feel embarrassed either - they are the one's with the issue.
• Learn relaxation techniques, on the off chance you develop tinnitus - every little helps.

So that's it. It has been a really useful experience for me to blog each day - I can look back on the last two months and feel proud of myself for taking such a big step.

You never know - we might find ourselves back here in the future with Emma's Cochlear Implant Journey - Part Two (but I guess that's another story!!)

Just to let you know that I have opened up the comments section if you want to say hello.

That's all from me Dear Readers,

Emma xxxx

Doldrums

Days since activation of implant: 14

New sounds: Too much new noise

It's been a day of the doldrums today, I think it must be contagious as we all seem to have it at work.

The day started off with a few pointed questions from a fairly 'distant' colleague, who then informed me my voice is changing - though a another Dear Colleague in the background was shaking her head!!!! 

Perhaps I was using my posh voice :)

I was also asked if the magnet was a permanent fixture, or was it detachable, which is kinda funny I suppose. Well actually they do make bone anchored implants, where they make a sort of permanent plug in your head that you then attach a small box too - eeewwww imagine having a 'port' on your head - that is really a step too weird even for me.

I am now well accustomed to actually wearing Ludwig the processor, it is much more comfortable than a hearing aid - the massive plus side is not having my ear bunged up with plastic all the time.

As the doldrums day continued all the new noise started to get a bit too much, my brain is still at the stage where it is trying to take on board everything it hears, its 'not relevant filter' hasn't kicked in yet. 

My Dear Colleague sitting next to me even informed me that I was being too loud, bashing away at my keyboard (I am now aware that I type rather LOUDLY... - whoops, sorry Dear Colleagues)

Sideways glances

Days since activation of implant: 13

New sounds: The door into my workplace really creaks - how can I have possibly have missed that?

A slightly better nights sleep last night, I did manage to SLEEP until 3am, then woke up - so a bit of a back to front night.

Carla my implantee buddy experienced the same after her implant, so hopefully I will grow out of it too - it seems my head has turned into a new born baby!

So sideways glances - I happened to notice some sideways glances from people today, obviously trying to work out what it is I have stuck to my head. It seems that people are splitting into two groups - those who seem really interested about the implant, wanting to know how it works etc; and those who freak out at the sight of the implant (my TWIN brother was one of those, when he first looked at the implant he grimaced, like he was looking at a rancid, gaping wound).

No respite

Days since activation of implant: 12

New sounds: Announcements on the train

Today feels like it has been a t least three weeks long.

I went to bed early last night as I knew I would have a busy day today working in Manchester.

In order to distract myself from the horrid white noise I read for a while, well until I was doing the thing when your book keeps falling out of your hands but you carry on reading regardless.

Things were looking good - I had a quick chat to Hubby (no implant and no hearing aids either, I'm pretty good at lip reading him!) and turned the light off quickly - it was 10.30pm.

Then the noise started, the second my brain stopped concentrating on anything. For half an hour I lay in bed, trying just about every relaxation exercise I know - but it didn't work, so I got up and made hot chocolate and had an extra happy pill for relaxation purposes (I'm desperate OK).

After watching a bit of TV I felt a bit drowsy so I went back to bed quickly - only to find the minute I lay down the noise re-started. (Mid-nightish by now). In total exasperation I got up and put my implant back on - but the noise continued and merrily amplified the ticking of my clock, so Ludwig was sent to solitary confinement in the drying box. 

I then watched Shameless (fab) and Homes Under the Hammer (!!!!) before eventually nodding off at 3am.

I was up again at 6am, desperate not to miss my train into Manchester.

This whole tinnitus business is a real massive downside to the implant, which I'm becoming increasing fond of.

Slowly rejoining the human race... kinda

Days since activation of implant: 11
New sounds: Trying to keep up with multiple voices

Here is a picture of the people at the meeting, ha ha!!

A real back to reality day today, with three work meetings, one after the other.

It is the first time I have been involved with a large meeting since I returned last week, so keeping up with the Dalek voices was a little unusual to say the least! Weirdly my brain keep fluctuating between implant and hearing aid - it couldn't seem to make its mind up which was it was going to concentrate on. Anyway, it was good to feel involved and it was nice to be welcomed back - crikey, have I actually been missed??!!

Reaching out to some forgotten sounds

Days since activation of implant: 10
New sounds: Metallica at Milton Keynes Bowl, circa 1993, courtesy of Youtube

Me and Hubby have been having a blast from the past today and have been busy searching out concert footage, from when we were kids - well kids with kids!

Bizarrely my implant picks up quite well from my PC speakers, so we have been reliving the greats of Metallica, Megadeath, The Almighty, Diamond Head, Guns and Roses and The Cult.

In case anyone is wondering, no my hearing loss wasn't caused by listening to loud music at concerts...

It has been good to have some access to sounds from my past, it's things like that which help to reinforce my identity - who I was then, who I am now etc.

Like a good scout - be prepared

Days since activation of implant: 9

New sounds: My daughter's voice (we've not seen each other since Christmas, so it was the first time I had heard her voice using the implant)

Today was a lesson that I need to be more prepared.

I met up with my Dear Daughter to go shopping for a new guinea pig today (for her not me - I don't have space for another cage!!) and we had a lovely afternoon mooching around the shops and eventually choosing a new piggy.

We then collected Hubby and returned to Sale to drop off Dear Daughter and piggy (plus various piggy goodies).

After 10 minutes or so of chatting, I got the series of dreaded bleeps telling me that my battery was about to go flat. Unfortunately I didn't have a spare with me, so had to switch off - well actually I got a series of very indignant bleeps and the processor switched itself off!

Immediately I was shunted straight back outside the bubble - although DD and Hubby didn't exclude me, I could no longer keep up with the conversation (which goes to show how quickly I am becoming reliant on Ludwig).

We returned home and I have put everything to charge once again. I'm definitely going to have to be better prepared and carry around a charged up spare, or the kit which allows me to use some disposables (sounds like I am going to need a bigger bag...).

Have a break, have an implant break

Days since activation of implant: 8

New sounds: The telephone ringing in my hall

Well somehow I survived the week - discovered some new stuff, been reminded of the old stuff. It's been a week of odd reactions to say the least...

I can certainly tell a difference between the sound maps, and it does feels I have maybe taken a step backwards in the learning process today. 

I DO think that I and everyone around me need to remember that having the cochlear implant is NOT a cure for deafness, it's just like having a hearing aid embedded in your head (Carla my implantee buddy's words - not mine, she has got her head around things much better than me).

Obviously the long-term hope is that things like lip reading will become easier and less tiring. As Elaine the hearing therapist said yesterday, it's only been 7 days out of a life time; give yourself a break.

Well I'm having a break at the moment as Hubby and Dear Son are having a jamming session. Since I had a horrendous bout of tinnitus which sounded like garbled guitars I am sitting here minus my hearing devices - which feels like I have switched my brain off too!

A new sound map and an afternoon of tests

Days since activation of implant: 7

New sounds: Perfume squirting, prfft

Good job I had requested annual leave for this morning (before my 2nd mapping appointment) as I woke up to see Dear Son off to school then promptly fell asleep for another two hours - all the extra brain activity is wearing me out. Still feeling rather 'winded' after yesterday, even Hubby noticed that I seem to have gone backwards...

Anyway, it was quite a relief to go back to Glan Clywd as it feels kinda safe there; with people who make me feel normal and accepted.

My first appointment was with Elaine the hearing therapist who did some tests on my consonant recognition. Consonant recognition is more difficult than vowel recognition as they often don't have a 'sound' associated with them (practice saying 'a' - ahhh, then saying 'p' - puh).
I pleased to say I did well. Elaine said that I am continuing to make her job easier as I don't really need any rehab from her, just to go about my normal day to day stuff and let the sounds sink in.

After a short break (yes, the sessions include breaks as they are pretty exhausting), I met with Dr. Marie who did some speech recognition tests, to check my progress at week one. The speech tests involve listening to a round of 25 sentences, first with just the implant, then both hearing aid and implant together. This is then followed by individual word discrimination. The sentences are really random, so you can't guess as them, things like: the girl argues with her sister and the strawberry jam is very sweet.

My scores:

Pre-implant, left ear (which is now implanted ear) - 49% on sentence recognition

Post-implant, left side - 77% on sentence recognition

Post implant, using both implant and hearing aid - 85% on sentence recognition

Pre-implant, left ear - 0% on individual word recognition

Post-implant, left side - 27% on individual word recognition

All in all this is really outstanding after just a week! I was so pleased so get such good results as it feels like I'm giving something back to those who have invested their time and energy in me. Dr. Marie was also kind enough to say how everyone has enjoyed working with me as I try so hard and am good at following the rather extensive instructions!

Dr. Marie also did another sound map with me, checking my thresholds and the like - so in effect it's like my brain has been given a new road map to follow, just when it was beginning to find it's way with the old one (well it should make for an interesting bout of tinnitus later).

Tesco throws me a few crumbs of comfort

You know what it's like, you are having a lousy day - wondering why you bothered getting out of bed...

It seems that Tesco is now my number one provider of entertainment :) Yes, that's a smile - first one today.

I popped in to buy a few bits and bobs and made my way to the self-service till to pay (easier than having to deal with checkout staff....) 

Anyway, I put my goods through, bleep bleep bleep, then pressed 'finish and pay'. 

Then instead of the usual deep and sultry tones of, 'please swipe your clubcard,' it was a squeaky high-pitched Minnie Mouse version, 'please swipe your clubcard'!!!

Cue Emma looking around to see if anyone else was finding the voice as funny as me!!!

The cochlear implant changes the voice of ANYTHING which has a voice!!

I can see that Ludwig and the self-service checkout are going to become firm friends :)

One step forwards, 3 miles back

Days since activation of implant: 6

New sounds: Fire alarm at work

Today has not been a great success - reminders of why I don't belong. I'm a freak and a fool to think I did. The cochlear implant has succeeded in changing me, but not changing a thing.

Quote from Helen Keller ~

The problems of deafness are deeper and more complex, if not more important than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus-- the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man.

Blindness separates us from things but deafness separates us from people. 

I hope, dear readers that you have had a better day.

Why won't it stop.......... :(

I think I'm losing my mind....

I decided to take Ludwig off a little earlier today as it has been a big day and I've had lots of new sounds to deal with (I also ended up having to charge everything up this afternoon too - flashing lights and bleeps a plenty telling me to take action).

I also had an ulterior motive that by taking the processor off earlier, then the white noise might stop earlier too.

IT'S NOT BLINKING WELL WORKED :(

The more I try to ignore it, the louder it gets, hiss hiss hiss, twang twang twang, then a power drill kind of noise....

My choices:

• Scream and try and drown out the noise
• Rant - but no one's home only me (well I could rant here...)
• Put the bloody processor back on again... nooooo... 
• Rummage in cupboards to see if we have any Kalms, Nytol and take the blinking lot...

It's going to be a long night....

Back to reality?

Days since activation of implant: 5

New sounds: Arghhhh... keyboards

It's pretty difficult knowing what to say today...

Anyway, it's my first day (or to be accurate, part day) back at work - I feel like my head has been replaced by a cabbage.

It was so easy to slip back into the routine of being 'positive me' - even when I am feeling pretty void inside.

Weirdly, I have got used to wearing Ludwig the processor and have accepted the benefits of the implant (heck, I'm even happy that I have had the operation done), but when I go back into a regular domain, like my workplace I feel a bit like a freak (hmmm... seems like I still have some work to do).

Thankfully my return to work is a phased one - which I need more than I thought I did - 5 hours today felt like a marathon (or maybe it was the never ending stream of emails to go through). Hopefully it will get easier.

Even though it was a quiet day at the office today, there were lots of new sounds for me... I never realised typing on keyboards was so loud - I always thought they were silent :) The sandwich vans, which visit our workplace, also have loud horns/tunes when they arrive - I have wondered in the past why people all seemed to get up together and disappear!

White Noise - Part two

Days since activation of implant: 4

New sounds: Dear Son chattering on his mobile in the kitchen, where he thinks I can't hear him (no more hiding from Mummy, ha ha!!)

I'm going to apologise before I continue, as this one is going to get pretty graphic. In fairness to the cochlear implant journey I am going to have to detail the nocturnal events which are happening.

As mentioned previously, Ludwig my processor gets switched off and put into it's drying case for the evening. Last night I fancied a bit of a read, so took a book up to bed with me. After an hour or so I felt tired, so put my book down and turned off the lights (Hubby was dozing away merrily at this point).

Anyway, I switched off the light and got back into bed (this was about midnight), then it started - the white noise. 

This noise is a new take on tinnitus (I have suffered from tinnitus for years, but this is really something else). The minute I try to relax and go to sleep the noise begins. Last night it sounded like the warbled sounds of a guitar playing (was it my brain trying to keep a grasp of what it had heard in the day??). It then turned to screeches and the hiss of white noise. Believe me, it sounds so loud to me I want to YELL loudly for it to SHUT UP. Part of me wanted to smash my head against the wall to make the sounds stop, it was pure torture.

For then next FOUR hours, I tossed, turned, sat up, lay back down, put my head under the pillow, propped my head up with more pillows to try and make it go away. In seriousness I considered getting up and swigging a bottle of Night Nurse or something to knock myself out.The last tine I looked at my clock it was 4.31am...

I eventually woke up at just before 10am, which doesn't bode well for getting up for work tomorrow. I currently feel like crap. I'm really hoping that at my mapping appointment on Thursday I can be given some useful strategies to manage it :(

White Noise

Days since activation of implant: 3

New sounds: Hubby playing the guitar badly (while he is upstairs and I am downstairs)

My head is still buzzing from all the new information that Ludwig is providing me, it gets a bit much sometimes and I have to yank the damn thing off (carefully, obviously).

Something that I didn't prepare myself for is the new additions to my daily regime.

In the morning I have to switch everything on, then check the battery (which is a rechargeable) to see if it has enough power for the day (more noise requires more battery power as the processor needs to work harder).

I then have to put my other battery to charge on it's recharging dock.

Following this I then switch my remote control (Ludwig 2) on, to alter the hearing environment, if required, and to do the 'is everything working OK' check.

At night the whole process is reversed, but Ludwig has to be placed in the drying out box. I have four different chargers and plugs for all these gadgets...

I came across an Australian blog yesterday of a woman called Katie who has done a similar blog about the process of receiving a cochlear implant. Weirdly we have both written about almost identical things - which makes who feel a little more normal thankfully. 

Katie had also written in depth about the isolation of deafness, personally I don't think those feelings will ever truly go away - at least with the implant it shows that we are willing to try pretty much anything (after all, given the choice would you willingly choose to walk around with a magnet and wires sticking to your head for the rest of your life??) to be accepted and included in the hearing world.

There's now only one day until I am due back at work, which I am dreading. The last four weeks seem to have sapped what confidence I had. While the work won't really have changed to much, I have.

Bring on 2011 :)

Days since activation of implant: 2

New sounds: the clock 'ticks' in my front room

Firstly - a very happy, healthy, kind, motivating, wish fulfilling New Year to you dear readers - if you have ever wanted to do something new, let this be the year that you do it. Without sounding cheesy, every day really does count (and don't forget to wear some sparkles, your best frocks and to burn your fancy candles).

I DO hope that you can continue on this journey with me - it feels a little scary at the moment, so the more riders in the train, the better.

I was reminded yesterday that no matter what, my 'hearing condition' was for life anyway (believe me - it is one 'present' I'd had gladly given back) - so in essence I have replaced one life long condition with something else - the implant - which is still a condition I'll have to work around in some shape or form, plus without the implant I'm now even more profoundly deaf than ever :(

While I might be coming across as a grumpy, ungrateful cow at the moment, I apologise, the whole issue with losing my hearing continues to be an issue for me.

Anyway, I'll slap on my positive face - you'll be glad to know that I lasted pretty much all day with the processor on yesterday, it's not uncomfortable to wear and to be honest I can hardly tell I'm wearing it for most of the time. The magnetic coil is actually quite cosy, though the implant site itself is quite swollen still. 

It is nice not having a load of plastic squished in my ear too. Incidentally the wonderfully kind people at Glan Clywd gave me something called a 'drying box' to take the moisture out of both my processor and hearing aid {it's a bit like a tumble dryer for hearing devices!!}. It is a BRILLIANT gadget, for the first time ever my poor stinky hearing aid has actually felt clean and fresh, which will hopefully reduce the number of ear infections that I get. It does make me wonder why the English NHS don't provide these - think of all the money they would save on antibiotics.

Anyway, when I'm sitting in the quiet of my front room, I can hear my mantle clock ticking, which Hubby tells me is actually very quiet indeed. When others are talking I can't hear it, but then again, people with good hearing wouldn't necessarily hear it either. Environmental sounds are easier to understand than speech so far, as their tones are usually quite deep and in one pitch.

When I went to bed last night, I had the strangest bout of tinnitus ever, it was like two cats screeching at each other. My poor brain was obviously trying to suck sound from somewhere... perhaps it was missing Ludwig!