About 6 years ago, I joined West Midlands Deaf Netball team. Within a year, I was Secretary. We were a bunch of mostly Deaf girls, with a few hearing girls with connections to the Deaf community playing netball in a tournament, having fun.

We had to fold about 3 years ago as four of the most regular members of the team (myself included!!) got pregnant around the same time and couldn’t play or commit the time to the committee. It was a huge shame, but as it’s very hard to find enough Deaf girls in one area, who are committed and interested to keep playing every week, we weren’t able to continue and closed the team down for a while.

However today, we had a reunion at our old stomping ground in Stockland Green, Birmingham for a mini-tournament. Considering most of us were the most unfit we’d been, and two of the team were sporting previous injuries I think we did really well! OK, we didn’t win a single game… but we really didn’t care. We were there for the fun of it but we’ll be back in July to do better!

I’d like to share the picture that was taken of us when we’d just finished our last game. We had such a lovely time, and we all enjoyed a shandy afterwards which was refreshing and an extremely sensible start to our get fit mission before July

We rock, as a team, a bunch of friends and although we had lost a lot of our knack netball skills wise, by the fourth game we were slipping right back into it!

So here we are. Thanks girls, for a ruddy marvellous day. Miss you, and look forward to playing with you again in July with hopefully some more of the extended old crowd!

I’m sorry for not blogging earlier about my progress with the CI. I’m afraid there is none and I have been dreading writing about it.

I have a lot of worries about various situations surrounding the CI and I’m finding myself getting more and more stressed.

The biggest worry is that it’s not worked. But I’ll get onto that in a minute.

The other big worry that is bothering me a lot, is that I don’t think that people really think I’m giving it a proper go. Mostly, it’s because I’m not wearing the CI when they see me. To be fair, I can see why they think that. But the fact that is of utmost importance here is that I simply cannot wear it in social situations. I cannot understand a thing. I rely 100% on lip-reading which is not only hard work, but I’m having to lip-read with the constant babble of noise on top of that distracting my concentration which is soul destroying when I know I can cope better with my hearing aid on its own.

I AM wearing it, but I am not wearing it all day every day like I do with a hearing aid, for the following reasons:

• It is intolerable to wear for long periods of time
• I get a headache after half an hour, let alone for hours at a time, even if it is turned down low
• My Tinnitus is at it’s worst whenever I am wearing it to an extent where even after taking the CI off, it will still be present in my ears for a further couple of hours
• I cannot understand anything anyone says, it takes over any quality I am getting with my hearing aid in the other ear
• All sounds are muffled, warbled and distorted and I can make out no clarity of any sounds which affects my concentration and patience
• Wearing it is exhausting, I get very tired and am easily irritated when wearing it, so while wearing it, it affects my relationship with the most important people to me in the world

On top of this, there are the additional annoyances that I can’t tie my hair up when I am wearing it as the pad just falls off. I can’t even tuck it behind my ear. I have very thick hair and it’s about shoulder length at the moment. The pad has two double strength magnets in it and even then, it falls off quite easily. I don’t suit shorter hair so it’s very hard self image wise to deal with the idea of cutting it short to help. Doing my work or jobs around the house and also dealing with a hair grabbing small child with my hair not tied back is a nightmare. A headband does the job the best it can do, but it’s not ideal.

At my last appointment, the audiologist set the processor with three different programmes. They are all very different and react to different frequencies in different ways. She also lowered the higher frequencies, to try and reduce the shhhh sound I get enveloping everything I hear.

I have made a conscious effort, since this appointment to wear the CI even more, no matter how hard it has been. I have been following a rota on my fridge to wear it at certain times on different days for increasing periods of time. Unfortunately, this has made me rather an unpleasant person to be during those patches of the day. Whilst wearing it, I am irritable and have been snapping at the slightest thing.

At the end of the day, it’s unbearable to wear and 3 months after switch on, it is still no better than it was on the day my CI was activated. I know that 3 months to some people is “nothing” in terms of CI progress, but everyone I have come across, has had some form of progress by now. I have had none.

I am SO sorry for letting people down, the readers of this blog hoping for CI reassurance, the readers who are my friends, wanting the latest news, supporting me every step of the way. I hate having to say this but: I really do not think it is going to work for me.

Please remember, that I did not go through all of this to give up at the first hurdle – I really have tried. The operation just before Christmas, being away from my children for two nights, the dizzyness, not being able to drive and horrid, constant Tinnitus attacks that plagued me for weeks. The bald patch on my head which is still growing back and everything that came with the switch on; all that, has really been one of the hardest times of my life.

I really have, and AM trying my very best. I really wanted this to work. It was going to change my life for the better in so many ways. My heart has broken, that it hasn’t done what I dreamed of. I’m not sure if everyone will understand where I am coming from, but I hope you do, or will try to.

I still believe in the CI. I have met too many people where it was the best thing in the world for them, not to. I also think, that if the CI was in the other ear, where I currently don’t have any distortion with my hearing aid, the CI would work wonders. But it’s too precious to me, I daren’t risk it.

If you have approached this blog to get information on CI’s and how they can work for people, please do not be put off. I have many contacts on my blog roll that I can pass on to you. I am the only person I know, that it has not worked for.

Perhaps I should put a little star next to the last word on that sentence and link it to the next paragraph.

*The journey isn’t over just yet. This blog post may be premature and I dearly, dearly hope so. They are still rooting for me at the hospital and keep telling me to persevere. They seem to think there is hope left, even if I am only clinging to that hope with the shreds of my fingernails. However there comes a point in everyone’s lives, where the limit with anything hard going, has to be reached and said “You know what? I think this is as far as I can go” and I think this may be coming soon, for me.

Perhaps, if I wore the CI every day for 2 years, maybe then one day, it would suddenly work for me. Or perhaps once the girls are older, my life is less stressful in other areas it’d work eventually then – you never know. But I know that I can’t put myself through this on a daily basis until that happened, knowing it is only ever an “IF”.

I’m so sorry, but my sanity just cannot take it much longer.

Bx

Tomorrow I have an appointment with the CI clinic, to look at progress (which is none) and perhaps work out where I go from here (hopefully forward).

I have some plans to ask them to try. One idea is that as the distortion I get is primarily dominated by high pitched whispering hushes enveloping every sounds I am “hearing” I wondered about re-programming the processor to start from scratch and only activating the lower frequencies for the time being. Perhaps, this’ll make it that bit clearer, and then I’ll work my way up wards. I don’t know if I’m thinking along the right lines, but it’s better than no plan isn’t it! I’ll update you tomorrow!

In the meantime, I’ve noticed that I get quite a few reads on this blog now. Initially I started this blog up to get all the ramblings in my head, down on paper as it were, and share my thoughts and experiences with anyone who might stumble across this page. I love that there seem to be regulars now, and I’d love to get to know you a bit more.

I challenge you to comment on this page and tell me 3 things about yourself, which can be ANTHING plus how you came across this blog. It would also really help me as a blogger, to get to know the type of people (apart from the fact that you’re all lovely of course – I already know that!) that are interested in my, as far as I know, rambled dull witterings!

I’ll tell you three things about me to get started:

• I am a regular writer for the fabulous newspaper the Hearing Times
• I always eat the foam eggs first, from a pack of Haribo
• I am due back at work in 8 days, after 16 months off and am petrified!

Your turn x

You may know that I have two little girls. Something has been on my mind an awful lot lately, and that’s been not just my role as a Mum, but as a deaf Mum.

My oldest is almost four. She’s practically four, she has the speech, understanding and mobility of a four old, so she may as well be four so from this point on will be known as the “four year old”. My youngest is one. She is very much the baby of the family, still keeping in her little baby ways and has very little speech but can sign “Duck” with pride and has a wicked smile. She only turned one in January and it’s almost her month anniversary, so she’ll be known as the “14 month old”.

My four year old, is the funniest little thing. She comes out with the cutest of remarks and very cleverly put together sentences, for a four year old. This evening, she declared that when she’s bigger and older, she is going to be a princess and her little sister could be the fairy. I asked her how old was old, and she announced “Twenty”. You can only laugh can’t you?

As much as I absolutely adore my children, I find them quite hard work at times, like any parent. However, additionally to the usual parenting woes, I have found that as my four year old gets very frustrated when I can’t understand things she’s said. At first I thought she was picking up reactions from others to me, so using a tone of impatience in her voice when having to repeat things time and time again that perhaps she’d heard someone else use. But then I realised that there are hardly any situations when people are like that with me on a regular basis when she’s around. My husband doesn’t, my parents and my sister certainly don’t. The only time I can really think of, is when I’m out shopping, or perhaps with someone who doesn’t know me very well. Some people do it without thinking, if they’re having a bad day, others do it because of a lack of awareness or plain ignorance. In fact, the tone of impatience makes me fluster and I struggle even more to pick up what is being said. I can’t actually hear the tone particularly well with the hearing aid, but I hear the tone nonetheless through lip-reading and facial expressions.

I think, it’s therefore become a bit of a natural thing to do for her as she’s now at a stage of development to realise just how different I can be to other people. She doesn’t have to repeat what she’s saying all the time to other people, and she knows how much easier that is. My guilt involved in this is as follows:

“Mummy, can I have a drink please?” She’ll ask very nicely.

“Sorry, what did you say?”

“Can I have a drink?”

“Pardon?”

“Drink! I want one!”

“Don’t be rude, where are your manners?”

And I wonder why she gets annoyed with me. I struggle to remember that she’s only four, she is normally a lovely polite little girl, but she struggles to get my attention sometimes, and I sometimes have told her off for something that wouldn’t have been necessary had I heard her the first time.

Mother’s guilt is such a terrible thing. I’ve mentioned it before, in an early post when I first started this blog (here) and it still haunts me. I wish I had been more consistent with her signing, if she had signed to me in the first instance, I’d have got it right away. But I suppose I got lazy. She can sign, she knows many words and can ask for a drink, or to watch the telly, or to play in the garden beautifully – but she doesn’t do it automatically. Only if I ask her to. I need to change this, otherwise she’ll get more and more frustrated with me.

I do explain to her by the way, the implications of me not being able to hear. She does understand, but she’s only four after all. She’s already got quite a lot of responsibility on her shoulders to tell me if the baby is crying, or if there was a knock at the door. She surprises me sometimes, with her mature head in the way she’s realised that she needed to tell me something I might not have heard.

I hate that I miss out on the best conversations. My friend e mailed me one night after dropping my daughter home one evening after we’d been to a show and I had gone on to college afterwards. She told me what her daughter, the same age as my four year old and mine had been discussing all the way home. How I loved to hear about it, the best conversations with children, can be in the car. Mine consist of:

“Oooh, did you see that tractor?”

“Yes!” She’ll say excitedly, and then she’ll say something else……

“Sorry darling, I’m driving at the moment so can’t see what you’re saying… tell me when we’ve stopped”

And then that’s it and the car returns to the sound of nothing

I’ve got to share with you the e mail that my friend sent me. I really felt I was there after reading it, I felt I hadn’t missed out on it quite so much. But I was sad, that if it had been me driving, I wouldn’t have been able to share the same conversation with my friend.

It’ll make you smile though, I can guarantee that, aren’t four year olds amazing?

A – Sometimes I go to see my Daddy at his work
I – Me too, I visit Uncle Greggy there too but not very often.
A – I haven’t been to your Daddy’s work.
I – I haven’t been to your Daddy’s work either.
A – No I haven’t either…oooooooh MACDONALDS! I can see the ‘M’!
I -  I like MacDonalds, it’s yellow.
A – Me too, Old Macdonald had a farm, e i e i ohhhhhhhh!
I joins in.
A – I like Kinder eggs too.
I – What’s a Kinder eggs?
A – They have yummy chocolate and toys inside them.
I – I like Happy Meal toys, they’re Scooby Doo
A – I like being happy.

Writing this blog post has been more about me letting off a bit of steam, but it also has helped me realise what I need to do. That is to sign more often with my children. OK, we won’t be able to have a conversation in the car, or walk and talk easily, but perhaps the friction that is sometimes caused by my inability to catch what she’s saying will be eased.

She’s a stunner you know, and the 14 month old. I’m so lucky. I’ll share a picture of my four year old signing something to me tonight, can you work out what she’s saying?

A quick CI update is that I turned up last week at my appointment only to find that there had been a mix up with dates on my part and actually, my appointment had been the week before. The next appointment they had was 1st April, so I’ll update after then.

In the meantime, enjoy your children and cherish every word they say. They are special x

I’m in a huff.

A seriously bad mood, don’t cross me.

I love the cinema. I love the atmosphere, the feeling of going out, having a treat. The open tubs of warm popcorn, the watered down coke and the padded seats you have to hold down before you sit on them.

However, I hardly go because the films have to be subtitled.

When I first met my husband, the second date he took me on was to the cinema to see the very first Lord of the Rings film. It was over 3 hours long but thankfully was very visual so I really enjoyed it. The second film we saw together was Dog Soldiers and I found it very hard to hide my boredom as I did not have a clue what the story line was, who the characters were. It was very dark film of soldiers in a forrest and some creature was chasing them I gathered that much. It became apparent afterwards, that as well as words you needed to hear, the sound effects were pretty important too.

Said now husband, vowed never to take me to the cinema again, unless they started releasing subtitled films. DVDs and bagged popcorn were the way forward.

Then subtitled films slowly crept in. Next, www.yourlocalcinema.com, a website devoted to the cause of collecting dates and times of subtitled films in cinemas all around the UK, was up and running, whoop whoop! I lived in London at the time, there was always a film on subtitled in the surrounding areas. Leicester Square in particular was good at showing them.

9 years on and two children later. the cinema is more and more of a novelty to me. Films in my home town that are subtitled are a rarity shown at all, let alone at times that people who work full time can attend. Tuesdays at 2pm? Are you having a laugh? More weekend and evening shows please!

I have been known to travel all around the Midlands for the cinema, but the films seem to be getting fewer and far between, again. Why? I hear that cinemas are fed up with low attendance rates – well you will get low attendance if you mostly show them in week days! Deaf people work too you know!

I was very excited to be seeing the Lovely Bones at the cinema a couple of weeks ago with my parents. Only the small one was quite poorly, so I had to cancel the trip Not to worry, there’s another showing at a cinema a few miles out of town, the week after – we’ll go to that one instead. My leg was in plaster by the end of the weekend.

Now I’m able to get about, and I have a check to see when it’s on next. Can I find anything? Can I heck. There are no showings listed at any cinema within a 30 mile radius of anything out at the moment, let alone Lovely Bones! A hearing person could have just gone to the cinema the next day instead. I have to wait for the DVD.

Hence the huff commenced.

Toby is the youngest son of a special friend of mine. He was born at just 32 weeks gestation and that was after labour had started a whole 8 weeks before. His mum did fantastically well, and somehow she held on.

He was born quite a poorly baby at first and had a lot of treatment in hospital before he could come home. Eventually he was diagnosed profoundly deaf.

When he was first diagnosed, he was issued with standard hearing aids:

(Photo courtesy of Nicola Corazzo)

But before long, it became apparent that they weren’t doing the job. At 16 months old, he was implanted with a cochlear implant of which at first, when initially switched on, looked like this:

2 years later, at 3 and a half years old, he has a processor that looks just like mine, hooks behind his ear, and has stars on the cover. He is an inspiration to me, in just 2 years he has done so well.

Nicola and Toby visited the other weekend, it was at a time that I was feeling particularly low about my CI and was just what I needed. Toby amazed me with how much he had changed since I saw him last. He was so much more grown up, he played happily with my daughters and laughed and smiled and chatted throughout the whole visit. But most of all, the most fantastic thing was – his understanding.

Several times throughout their visit, Nicola would say something when he wasn’t looking and he would repeat it without hesitation. His speech was clear, his sign language fantastic and wow, oh wow, oh wow. He can understand things without lip reading?

I was in shock, I know that this is one of the benefits of a CI, I know there is a high possibility that anyone with a CI can succeed doing this and my hopes are high that I too will be able to – but to see it actually happening, in a child with no previous experience of hearing and so young? Not only did he hear things, but he understood them too. Wow, it will never faze to amaze me, just how miracles can happen and it couldn’t happen to a lovelier little boy.

Its been such a pleasure watching Toby grow up into the handsome adorable young boy he is today after meeting him when he was just months old. At three and a half, he’s got the whole world at his feet. Credit to his wonderful Mum and Dad, and gorgeous older brother Oliver. Such a lovely lovely family.

Here’s to Toby x

(Photo courtesy of Nicola Corazzo)

Said a lovely friend of mine called Rachel.

Thank you, the smallest gestures mean so much. And I won’t, promise x

Link to original photo here

I feel I owe my regular readers an explanation.

I am sorry for not being a regular blogger over the last few weeks. Normally at this time, people who have just had a CI and have a blog, write regularly with their updates and stories, I’ve kept a low profile, passing the time away talking about Tinnitus Awareness week and um, nothing much else.

I feel almost embarrassed to write to be quite honest. And I’m frankly, scared to write too.

I have harped on for months now, about the wonders of the CI and how utterly brilliant it was going to be for me. And my main idea was that anyone who was thinking of a CI for themselves, should they stumble across this blog; would find helpful answers and support towards their decision by reading this my witterings.

I love writing, it would be my dream to make a career out of writing and taking photographs. But I know this is a tad unrealistic – I’m not that good. However I really have, over the last few months enjoyed having my two blogs – this one to write on, and the other to share my photographs to fill in that gap of yearning, just a little bit.

My blogging mojo for both writing and sharing photos, completely disappeared when I felt that I had fallen flat on my face, after struggling to get to grips with the CI. I feel silly about all the good things I wrote – but also worried that I’ll put people off getting a CI. I am also in denial a little bit, and not really wanting to write much about the negatives as it means facing up to them.

The truth is this:

I still have faith in Cochlear Implants. I still have faith in the system, the product, the audiologists, the procedure and the whole idea that is the most fantastic super hearing aid ever. I know too many people where it has been a huge success story for me not to have faith. I have read too many blogs by people who have taken to it really well, to not believe in them and I did enough research prior to my journey, for it not to make sense in my head.

But I feel at this stage, that it’s simply not going to work for me.

It may be, that time is still what I need. I hope and hope every day that one day I’ll be reading back on this and laughing at my impatience. It’s “only” been 5 and a half weeks after all, since I was switched on.

But it feels like so much longer than that when every day you hope this’ll be the day you notice that slight improvement.

By now I SHOULD have had SOME improvement, surely? It shouldn’t be like it was on day one STILL should it?

Time and time again, I read articles and blogs, watch videos of documentaries of other people’s experiences, none of them describe it how I do. Most talk of changes within days, or weeks. Not months.

What happens next?

I’ve got to keep trying, I owe it to myself, my family and friends who have supported me so wonderfully. My audiologists and my consultants who have taken such great care of me from their medical perspective. I will keep trying, I will keep wearing it. But it’s so damn hard.

Each day, I force myself to put it on, dreading it. Each day I find myself wearing it less and less. Can I be honest here? There have even been some days when I haven’t worn it at all. I’m just in despair, it’s so hard to tolerate. The distortion drives me crazy and I cannot cope with it on for long. If there had been the slightest improvement, the tiniest hint of clarity, that would be all I needed, to motivate me, to see the light at the end of the tunnel.

But it hasn’t happened. This is getting me down a lot. As you’ll know, I had such high hopes for the CI so I’ve had to reassess a lot of my expectations. I’m due back at work very soon, I’m on annual leave at the moment – but I know for sure that even in a month there is no way I’ll be able to use the CI at work, so that’ll bring my usage down even more.

I’m feeling sheepish, disappointed, angry, embarrassed, upset, frustrated, annoyed and most of all, a bit of a let down. I am not someone who gives up easily, I really am not. I am worried people will think I’m giving up at the first hurdle. I promise you I’m not.

The only thing keeping me going is that I cannot find a single story anywhere, where a Cochlear Implant has failed for someone. It may be that it has happened – in fact it must have happened. But it’s not recorded anywhere I can find online or on paper. So therefore that must give me hope.

x

Just a very quick update. On Monday it will have been 4 weeks since switch on.

There has been no improvement since day one. The distortion is still there, no clarity can be found anywhere amongst the rasping noise that my brain is interpreting.

I am wearing it every day. Some days I manage only 15 minutes. Other days I manage as much as 2 hours. Longer than that, and I struggle with patience, tiredness and general frustration.

I am starting to lose hope, am I going to be one of the very unlucky ones? I am trying to keep clinging onto it has hard as I can – in the long scheme of things – it’s still very early days right?

x

This week is British Tinnitus Awareness week.

I suffer from Tinnitus, and it has steadily got worse throughout my life, especially so since my operation in December. I have had Tinnitus for 20 years. I am only 28 years old.

My friends and I that take part in a Photo A Day project sometimes take a photo to represent an charity day or week and make an effort to try and raise awareness for such charity throughout the Flickr Community.

The British Tinnitus Association who organise Tinnitus Awareness week have a great website. They provide lots of information about Tinnitus, including what it, how you can recognise you have it and what you need to do about it.

Taken from www.tinnitus.org.uk

What is tinnitus?

Tinnitus is the name given to the condition of noises ‘in the ears’ and/or ‘in the head’ with no external source. Tinnitus noises are described variously as ringing, whistling, buzzing and humming.

The noise/s may be heard in one ear, both ears or in the middle of the head or it may be difficult to pinpoint its exact location. The noise may be low, medium or high-pitched. There may be a single noise or two or more components. The noise may be continuous or it may come and go.

What causes tinnitus?

Tinnitus is not a disease or an illness, it is a symptom generated within a person’s own auditory pathways. Although it is often assumed that tinnitus occurs as a result of disease of the ears, this is often not the cause. The precise cause of tinnitus is still not fully understood but is usually associated with some hearing deficits.

Who gets tinnitus?

Experiences of tinnitus are very common in all age groups, especially following exposure to loud noise, however, it is unusual for it to be a major problem. There is a widely held misconception that tinnitus is confined to the elderly, but various studies have shown that it can occur at any age, even quite young children. Mild tinnitus is common – about 10 per cent of the population have it all the time and, in up to one per cent of adults, this may affect the quality of their life.

I hope that you don’t suffer from Tinnitus. But if you do, you’re not alone.

And I’m proud to share some of the photos that my friends took. Mine is first, the rest are credited

by Lily_S Description here

  by Janna78 Description here

by catcat78 Description here

Aren’t they great?

I’ll add more later, as soon as I’ve got permission to blog them! x