Cochlear Implant Journey

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Many people have told what it is like to receive a cochlear implant and the miracle of hearing again. But what is it like to live with a cochlear implant on a day to day basis?  Does it really work for everyone who has a cochlear implant?

I was born as a preemie and we do not know if this contributed to my deafness.  As a child I wore hearing aids (the change in hearing aids throughout my lifetime has been incredible!)  As I grew older my parents inform me that my residual hearing that I had, which enabled me to wear aids was getting worse.  By the time I was 9 / 10 years old I was not benefiting from hearing aids as well as I used to.  My parents at this time were told that I have Meniere’s Disease and it will make my loss worse.  So, would my parents consider me having a cochlear implant at the age of 11 years old?  Bearing in mind this was such a new pioneering piece of equipment that had been done in America, but not so much in the UK.  My parents researched the pros and cons of having an implant and came to a discussion that they were not 100% sure if this was the right route for me.  So I continued using a hearing aid as a child. 

As a teenager I struggled with my deafness and hated the barrier it caused in my everyday life, but I perserved and worked really hard in my education with the help of fantastic teachers and teaching assistances in my secondary school despite the hurdles I encountered being the odd one out and the newbie that never belonged.  When I completed my GCSEs I was thinking about what I wanted to do as a profession.  I knew I would love to be a teacher working with deaf children.  But, the big issue for me was I was going to have to do my Teacher’s Training as a mainstream teacher with classes of 30 odd hearing children.  Eeeeek!! How was I going to do that with my hearing loss as by this point I was getting nothing from my aids being profoundly deaf?  I knew I needed something more ‘powerful’ than a hearing aid.  My parents talked to me about the possibility of having a cochlear implant.  With this in mind, I asked for their support to see if this was an option for me. 

I underwent the assessment procedure to see if I was suitable to have a cochlear implant, the assessment procedure is exhaustive and so many routes that you have to work your way through.  In 1994 it was agreed that I was a suitable candidate to have a cochlear implant.  I had the operation after I had completed my A ‘Levels in order to recover before I started University that September.  The operation back then was invasive and this meant I had to have stables in my head and for me, as an 18 year old the worst part was they shaved half of my hair off so this meant I had one half of head with hair and the other half with no hair!  Oh dear … out came the bandanas and head scarves to protect my vanity!!

This is my war wound!

 

Me Smiling as always! :)

 It was soon time for the switch on, now I have to be honest.  I really thought that I would be able to hear so much with the implant.  I had to listen to sounds being transmitted to the implant and this takes a long time to do (especially when you have tinnitus and you cannot distinguish between the beeps or the tinnitus beeps – so frustrating and tiring) after this is done (listening to the quietest beeps you can possibly hear and to the LOUDEST beeps you can tolerate) a map is then created and that is a unique map of what sounds I could receive through the processor.  It was then time for the switch on … I waited … I waited and thought I can’t hear anything!! I could pick up some very quiet sounds that meant nothing to me.  I was gutted.  My audiologist explained to me that everyone response differently to the sounds and I would have to learn the sounds as I am profoundly deaf, my brain has never encountered certain sounds so were not ‘stored’ in order for me to recognise them.  So this was the start of a long journey for me.  I had to go back to hospital every 6 months to have my map redone until I was happy with the sounds.  Since then I have had to ask people around me what certain sounds are in order for me to store them into my memory and this is still something I do now, as there are always new sounds that I have not encountered before. 

This is an x-ray of the internal part of the implant:

 With the cochlear implant, sounds are different from what they were with hearing aids. Hearing with hearing aids is somewhat passive, the sounds are amplified and you hear them. Hearing with a cochlear implant is active; you must learn to hear with the implant. 

When I got my first processor it was a body worn processor and I HATED it because I liked to wear dresses and there was nowhere for me to put the ‘box’.  I had to either tuck it into my knickers or put it in my bra… not nice when it was hot.  I was over the moon when about 5 years later I got a behind the ear processor! 

Body worn processor 

Behind the ear processor 

I have had my implant for 22 years now, and I am due for an upgrade of the external processor and I am really hoping that this will make a difference for me as even with my implant on I am still profoundly deaf.  Yes I can hear peoples’ voices in the room that I am in, but I do not know what the voices are saying, so I have to lip-read them in order to understand what they are saying. 

Up till 10 years ago, I was able to use a hearing aid in my other ear so I was getting sound in both ears and I felt more ‘whole’ and ‘balanced’ if that makes sense.  With the birth of my two amazing daughters my Meniere’s flared up and this meant I was bedridden for a while as I could not walk without falling over and if I looked at walls and ceilings it felt like they were spinning round or had waves in them.  It was horrid and I still have spells every now and then, but I get on with it.  Unfortunately due to those episodes the little hearing I had in my other hear went.  I tried new hearing aids, which were meant to be the best but they did not work for me anymore and no sounds were encountered so I had to give up wearing an aid in that ear.  I was heartbroken and felt that I was not complete and very unbalanced. 

I feel the answer for me would be to have an implant in my other ear, I have asked for one three times and this has been rejected due to my age and funding.  If I were 18 I would have one straight away.  This really upsets me but I cannot do anything about it unless I win the lottery!!

When I had my implant, people assumed that this piece of equipment would make me hearing like ‘hearing’ people, this is not the case.  When my processor comes off I am DEAF DEAF, I cannot hear a thing.  If an ambulance or fire engine was right next to me with the sirens on, I would not hear that at ALL.  I feel vibrations of very loud things (think road digger) but I would not hear it at all. 
. 
When I wake up, I shower and brush my teeth in silence; everything is silent until I put the processor on.  When I speak with the speech processor off, I talk very loudly because I cannot hear myself and cannot modulate my voice.  This is when my family and friends know when my battery has gone and needs replacing!

A vivid memory I have of when I was retuned a few years back.  The audiologists often ask me to go for a walk to familiarise myself with the new map.  I needed to go to the loo.  I sat down and did a wee (too much information?), I thought to myself I can hear a funny noise.  I do not know what it is.  I went back to the clinic and asked what all that was about, for the audiologist to say to me, that was the sound of you doing a wee!! I never knew we made noises when we went to the toilet apart from farts as that’s a vibration! Lol. 

I hope that this was interesting and useful information for you.  As always I love comments and feedback as they encourage me to write more!

Thank you for your time.

Speak soon. F x

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Thank you, speak soon, love F X

Reflection ...

I was thinking about what has happened in the last month or so ... For your info I am sitting in my friends amazing salon having my Christmas hair colour and cut. 

In November I was hurt. I won't go into the details. But I'm still suffering from it even now. If you said to me, "What did you do in November?" My answer would be... November??? Has it come and gone? How did that happen?!  

Unfortunately I slept through most of the month due to the cocktail of drugs I was prescribed from my Doctor. It's actually a horrible feeling knowing I won't get that time back. 

It's gone. 

Time to move on. 

I'm sat here feeling a bit "spaced out" and it's an odd feeling. I knew it wasn't the normal me when I was at the Densist earlier today and I didn't even flinch when I was having my teeth prodded at (all good nothing needs to be done) and I just stared at the light and felt myself being transfixed by it as if it was only me and the light. 

Have any of you ever felt like that (not through recreational drugs I mean! Lol) .... Just for the record! 

I really hope that December isn't like that for me. As I want to feel I have done something. Although I can't do a lot at present. Which is frustrating in itself. I even need help taking off and putting on my clothes. Not good eh?

I have tried to stay upbeat and positive but sometimes it just gets a bit toooooooo much. I just want to collapse in a comforting heap (preferably with feather pillows, duvets, blankets and candles surrounding me. Oh fairy lights too with cake and tea .... Nah? Best keep going I guess!!!

I think I'm gonna continue taking my cocktail of tablets. Ask for a cuddle from my other half and beautiful girls. That'll keep me going. 

For the time being....... 

Any suggestions? For pick me ups and motivational comments are very very welcome!

Speak soon, love F X

December already?!

I'm sitting watching the semi final of Strictly. I have so enjoyed it this year. I love becoming engaged in the beautiful movement people can create and wishing I can dance like that! I'm rooting for Jay or Kellie to win! 

This year has flown by sooooooo quickly that I cannot believe that we are heading into 2016!! I remember the millennium celebrations like it was yesterday and worrying that everything was going to END! Do you remember that? 

It has had its high and lows. We have all come out of the other end thankfully. Unfortunately I am having a rubbish time at the moment. But I am holding my head up high and taking each day as it comes. You have to, don't you? Otherwise you'll or rather I'll go mad. 

My mother in law has had a tough year. But she is still smiling! She also looks fabulous! She is planning to move into her new pad with her better half in the new year and is going to embrace a new adventure and I wish her all the best!! 

My mummy and her other half moved to the next village from us in January this year and I was and still AM over the moon as I love being able to pop round to see her for a cuppa and a quick chat. They have moved into a twee bungalow which I absolutely love! It looked horrendous and needed a lot of TLC. It looks lovely and cosy now. I love going there and feeling I could just curl up on mum's sofa with a blanket and fall asleep! The most favourite part for me is the garden. It looks incredible now. And I love to go round there while mum is walking the dogs and I wait for her while I sit and have five minutes of nothingness.  Bliss. 

I haven't spent bought time on my hobbies as I haven't seem to have had the time or motivation which is a shame. I have enjoyed my sewing classes with a passion as I have the most amazing sewing teacher who motivates and supports me. I feel I have learnt a lot this year as it was my daddy's 60th and I made him a tailored waistcoat and boy am I proud of it. He looks so handsome in it and gets so many comments from people who can't believe I made it!!! Yes ME!!!! I am planning the next thing to make my dad. I can't wait. 

My two girls have grown some much this year. It has been a real pleasure to see. My eldest will be 13 in February and is doing well in school although she loves to spend her spare time YouTube 'ing' and putting make up on when it's her bedtime. I'm sure I never did that as a teen!! She had joined an athletic club after being one of four selected from 40 to represent the long distance running. I am so proud of her! 

My youngest will be 10 in July next year. She is growing so fast and is a natural comedian. She likes to think she is the next Miranda. I think she probably could be. Watch this space! She has decided to give up trampolining, I do not know who was more devastated, her or me. Me, probably as I used to do it as a youngster right into my early 20s. I Watkins of hoping she would follow my footsteps. My wife is on a mission to get her into rugby but somehow I don't think it'll happen. Sorry, Nat. My youngest is very creative and loves attending her art club. She also would like to take up climbing. So if you know of a local climbing club for kiddies. Please let me know. 😊

We didn't go away abroad this summer holiday and do you know what. I actually enjoyed being at home all summer as it was less stressful and we did our back garden and painted all the out houses and we were chuffed with the end product! 

What have your highs and lows been this year? I'd love to know. Thank you for reading this. 

Speak soon, F x

A Letter to my Family and Friends

To my wonderful family and friends and those who I have yet to meet...

 I have not written for a while, I have lots of thoughts in my head that I need to write down but I do not know where to start! 

There are so many things about each one of you that I am eternally grateful for.  Some of you understand me really well, and have lots of faith in me (which I do not have much of lol) when I struggle to believe in myself.  

Perhaps, without realising it my friends and family are the ones who heal me and help fix all my broken pieces bit by bit.  
My wife is the one who gets me through the tough stuff, she has complete faith in and me is my rock.  

I was left reeling by recent events and I am aware that I have spent years, probably the majority of my life wrestling with feelings of guilt and inadequacy, feeling helplessly trapped inside my destructive thoughts of negativity, anxiety and dare I say it ... depression.  

But you, my wife, children, family and friends have given me the wings I have needed to fly and I am beginning to recognise that I have these wings!  I am slowly becoming accustomed to them and finding the confidence within myself to use them.  

Many of you, without any judgement, have listened to me talk for hours through text messages, whats app, Facebook and even through a cuppa!  My wife has wiped my tears, soothed my fears, and helped me begin to understand that what was so very wrong with me perception of myself stemmed from the past.  

I admit my self esteem is in tattered at times, but through many of you and my wife, words of encouragement have helped me to see some of the truth and love that I should feel for myself.  I am getting there and I will have set backs but its on-wards and upwards...  

I know I have an exciting journey ahead of me with my wife, children and you guys!  How lucky am I to get to share that with you.  

Speak soon, F x 

Poppin' by to say Hi!

 

Hi there,

I have not written for a while because it seems that time has just run away with me!  One minute it is Christmas and I am getting ready for all the festivities and now it is May! 

Work has been busy and it is that time of year when assessments are never ending, exams to be done, reports to be written.  But having said that I am enjoying things at work at the moment, I love being with those kids!

Family life is busy, we had a great Easter in Cambridge then when we came home we threw ourselves into the garden (not literally), making it look presentable and I discovered that I love using the hedge trimmer!  Making trees and scrubs into nice shapes whilst N did all the hard graft.  I can't because of my blasted back but I get involved by telling what N and the girls should do! That is my role!

I am on a mission to get back into my crafting and I have seemed to lost my mojo and cannot be bothered to do it.  I need to make time to do it.  I also need to be healthier ... I am currently detoxing and I am enjoying it and I feel better (although I still crave cake and chocolate!) I am going to try (try!) to do this till the end of the summer term.  (Watch this space!! lol)

I have also been doing a taster signing class at school once a week and I have really enjoyed it and it made me realise that I have missed teaching signing to adults.  So I am going to think seriously about offering signing to adults as a course to gain a qualification in B.S.L which is equivalent to a GCSE.

I will also try to put posts on here about signing and deafness, as a lot of people stated that they found it interesting and useful.

At the moment I am not really watching anything on television, but I did get into the series called POLDARK!  It was awesome.  I cannot believe it is finished now.  The best thing is, I found out that my Nanny loved the Poldark books, so I am going to buy them and read them.

At the moment I am reading the Sophie Kinsella books (the Shopaholic series).  They are such an easy read. I found them at my visit to Hearing Dogs for the Deaf.  I am enjoying reading at the moment and there is so much I want to read, but there is no time to do it as I always seem to be too tired at the end of the day!  Solution, go to bed earlier and a drink and have some reading time!

I hope that you are all well, I would love to know what you have been up to, what have you been watching on television, what have you been reading?  Suggestions are welcome too!!

Take care, speak soon.  Love F x

A little of what you fancy does you good - Cake!

This is going to be my Baking Blog.  I am not 100% sure how these blog pages work.  I would like to create this to be my Baking post and then when I do more baking I will add more to this actual blog... think of it as a little experiment!

For me baking is a real tonic.  I like good food and I have to admit as a working mother some days I cannot be bothered to cook and go for the quick and easy route.  As a family we are very lucky we have fresh produce everyday and we tend to cook from scratch.  Nat and I enjoy our time in the kitchen.  Often it is Nat that puts music on and dances whilst I am pulling serious faces at her and she tries to get me to dance with her in the kitchen which means a simple meal can end up taking 3 hours to cook!

It is known that baking and cooking lifts depression and eases stress levels ... for some that is not the case, which is a shame.  I know when I have time and I fancy being creative, this is a great thing to do!!

Baking is an experience we can enjoy and it encourages us to get back in touch with our senses – and in particular with the sense of smell – can reawaken happy memories of early childhood, of feeling looked after, cared for and safe. Smell is the first way we recognised our loved ones, so a particular smell may even bring to mind memories that were embedded before we knew language; memories we didn’t realise we possessed.

I have very fond memories of baking.  I used to go and stay with my Nanny for odd weekends while my parents worked.  My Nanny was a phenomenal baker, I often tell people about what she used to make and how she would not use bowls or measuring equipment.  Before I went home on a Sunday morning, Nanny and I would make some shortbread for my mum and we would mirror each other.  I would work on one counter and she would work on another and I would copy her.  She would make the shortbread on the worktop itself and I remember being fascinated by this.   The shortbread would come out of the oven and she would send me to Tesco to get some fromage frais to have with it so I could take it home for my mum.  My Nanny also used to make danish pastries, apple pies, blackberry jam, biscuits (that she would post to me right up to a few years ago).  She would also make the most amazing roast beef, Sheppard pie, cauliflower cheese and lentil soup with homemade rolls.  When I think about this.  I realise how lucky I am to have memories like this.  Not everyone does.

My lovely Nanny on the left with my Mum and my daughter X

I am lucky that my two daughters like baking too.  We often make cookies or cakes on a weekend afternoon ... Miss F enjoys the measuring and making process and Miss L prefers the decorating part. I enjoy these moment as these are moments that my daughters will remember  ... and take into their adulthood.  The exciting part is Miss F wants to be more independent in her cooking and has started baking by herself and will cook simple meals for the family such as spag bol (veggie of course).  

The act of baking is a process.  It takes time to read a recipe, gather the ingredients, mix the dough, let it rise, shape it, and then bake what we’ve created. That’s how humans are designed to operate – to understand what they’re doing, step by step and creating something from a few ingredients.  I do this by going onto Pinterest and looking at what is on there and creating boards for me to refer back to when I want to try something new.

Thanks again for reading this.  Speak soon, Love F x