Big Hello to all

I’m back, I’ve been AWOL. My last post hopefully explained in advance. Moving house has been one of the most stressful times of my life. We were without internet until a few days ago as well, hence blogging actions on all accounts been lacking.

But we’re here now, and I’m back to blogging and really looking forward to it. I’ve been keeping up with my column at the www.hearingtimes.co.uk which has hopefully kept some people going to some extent!

I’ve got a few posts to work on, I’ll slowly ease them in one by one. I’ve been busy setting up my own photography business as well, you can see where I’m at here: www.bryonyclairephotography.co.uk. Its been very hard work, but I’m getting there slowly and learning more and more about the art of photography every single day. Being a deaf businesswoman has it’s obstacles, but I’m getting over them one by one.

See you very soon!

xx

I haven’t blogged for ages. I’m not sure why. I got out of sync I think. I forgot how to blog, I couldn’t be bothered. I also had a lot of other things taking up brain space.

I also found myself wanting to be private for a bit while I get used to my new hearing levels.

I’m not back to normal, but I am doing ok. Just OK.

The CI isn’t improving either – they even flew a guy from the USA out to try a few things with me, but as much as I felt awful saying, it didn’t make much difference.

In terms of my right ear, the one that went kaput, well, it slowly got better over a period of time. The tinnitus quietened down, the hearing got better. It’s not back to how it was, but I’m not complaining. What I have now is even more precious than I ever had before – and I’m scared it’ll go again. Those 2-3 months when I had nothing at all, scored extremely highly in the hardest weeks of my life.

But what I’m interested in gaining back now is not the rest of the hearing I had – it’s my confidence. In terms with dealing with the public, I’m still finding it very hard. The lack of clarity means I’m relying on lipreading so much more, and it’s exhausting. So many people have very hard lip patterns to follow.

My children are wonderful, my biggest one has been teaching my little one signs unprompted. It’s such a special thing to see. Sign language is a huge part of my life – it always was, but it’s even more prominent now.

I’ll try and write again sooner rather than later. I’ve missed blogging, it was always a good way to get things out of my system. So hopefully, The Deaf One is back x

Huge apologies for not blogging for, um, ages.

Thanks to the kind and very dear Ruth for prompting me to write.

The last couple of months have been crazy. We’ve finally sold our house (yay!) had lots of problems getting mortgage sorted for new house (boo) but I think we’re finally getting there and despite having to find a new house and compromising somewhere, we’ll be in a new house by the end of the year fingers crossed.

Hearing wise, I’ve come to adapt and accept my situation. I will write again soon to update in more detail when it’s not late, and I haven’t got houses on the brain!

x

Over the last couple of weeks, I’ve really been able to listen to my Tinnitus properly seeing as no hearing aid or CI has been used to drown it out. I never knew there were so many different sounds!

Let me see…

The Foghorn – a long continuous one pitched sound, sometimes high and wailing, sometimes low and bellowing otherwise known as the “pole noise” as stated by 10 year old me.

The Car engine – A low roar, sometimes accompanied by an ascending vroom but mostly the sort of rhumble you hear on modified cars with exhausts a football could fit inside.

The Organ – Different tones in various volumes and length mostly low in pitch – my favourite although wrecks havoc with my senses when trying to do a hearing test!

The Siren – Neenaw neenaw neenaw. Nuff said.

The Intense Music – Akin to melodies heard on programmes and mostly triggered by a jump in me.

The paper crunch – As it says on the tin, but continuous.

The Bells – The most popular with the general public, little twinkle bells being run furiously right outside my ear.

If you have Tinnitus, can you add to the list? If so, drop me a line and let me know! We can Tinniterize together!

My best friend posted on Facebook last night, something that made me really smile. It’s so true!

“Being deaf sucks but there are small mercies occasionally. The dog is snoring and snuffling like a good un, just like the husband really..! And I’m about to sleep through it all!”

I can only but agree! As expected of the humour of my friend’s husband, friends and family, the comment thread reached pages long and added to the morning’s entertainment. But I had post about the original status and emphasise really that sleep SO rocks when you’re deaf! 😀

Following my last post, (A life of complete silence) I’ve decided to write a bit more about how my life has changed in recent weeks. Its been a very frustrating time, and there have been many moments of where I’ve not been able to see the light at the end of this particular tunnel. There are a few other difficult times going on at the moment, we are having the worst luck trying to sell our house. We are desperate to move, and have been for some time. We outgrew this house when I was pregnant with our second child. Said child is nearly a year and a half now, and as a family of four, we are squeezed into this little end terrace, along with much of our stuff, in a house that also needs a lot of work doing to it. They say that moving house ranks very highly in the most stressful times anyone can go through – do you think that losing a limb, or a sense is also up there? If it isn’t, it should be.

I’m likening some of my experiences to be similar to when people have been hearing and then gone hard of hearing, or deaf later on in life. You get used to whatever you’ve got and when it changes, regardless of what level you were at the beginning, it has a huge impact on your life and emotions. My experience is just at the other end of the spectrum in terms of what has been lost, but I imagine it has a pretty similar.

I feel quite lost at the moment. I’m finding myself holed up more and more at home preferring to spend time alone with my children, or on the computer where it’s far easier to communicate with my friends. I feel like I’m having to learn how to adapt which to me, is annoying. Consciously having to change the way you do many things when you’ve been used to another way since birth, is definitely annoying.

The last three weeks have possibly been the hardest three weeks of my life. There has been no time to get to grips with my new situation at my own pace, life has still had to go on. I’ve still had to be a mother to my two girls, I’ve still had to go to work and earn my pennies. I’ve still had to shop for food, deal with surveyors coming to look at my house and get my train tickets from the station. It hasn’t been just the practical side of things though, its also been the realisation that this is possibly how it’s going to be for the rest of my life. My youngest daughter isn’t talking yet other than the odd “byebye” and “book”, so it breaks my heart that I won’t ever hear her talk. The memory of the sound of my oldest daughter talking is fading fast, although I’ve been rather fascinated with the fact that I can actually lip-read accents. I never knew how good my lip-reading skills were.

I’ve never used my eyes more than I have done in the last 3 weeks. I have been so tired, constantly watching out for things and lip-reading every single person more intently than I did before. My ears were pretty useless before, but now they are redundant, I realise just how much I relied on that little bit of hearing, a hearing aid was able to assist with.

I am extremely lucky in that my colleagues and my boss (who is ace by the way) have been so accommodating. My normal day to day job, requires speaking with the general public and taking down information that legally has to be absolutely correct. As I work in a small office, with a very good solid door, the surroundings are almost perfect for working on a one-on-one basis to do my job when you can’t hear very well. It can be a bit of a pain in the summer, when it’s warm and you want the window open – passing cars create very irritating distractions! But on the whole, it is quiet in my office and I always managed quite well, using pen and paper for those “I am just not getting this” moments.

With no hearing at all, I cannot deal with the public full stop. Even if it wouldn’t be seen as rather unprofessional to conduct every single interview with pen and paper (not to mention time consuming), I can’t see the general public being extremely tolerant of it and anyway, my confidence has been lost altogether. Birmingham is an amazing city. The ethnic race is hugely vast with people from all over the world settling here and consequently having babies, getting married and passing away. As much as I love meeting people from all walks of life, it did mean it was much harder for me to catch on to the names and accents. With no hearing aid to assist me now, I have no “back up”. I cannot simply pick and choose who walks through my door, I cannot do my job.

I have been given lots of work to do that is normally spread out to the staff working in my department. I am dealing with the post, creating spreadsheets and sorting out paperwork. It’s fantastic that my bosses are finding me work to do, and being very understanding about the whole thing. But I’m not happy about the prospect of doing this long term – always having to ask for work once my last job was finished. I like to think I am a quick worker, I’ve always thrived being a working woman. Sure I get days when I really don’t want to go into work and would rather have a duvet day – doesn’t everyone? But ultimately I am a working woman, and I enjoy earning my pennies. The idea of not doing the job I applied for and was offered, the job I have been doing for the last 3 years – is quite frankly going to get me down after a while. I feel really trapped – what am I going to do?

We had a meeting last week. I think I might be the only person on earth who likes meetings. I love the idea of sitting around one large table, and being given a chance to discuss current issues within our working environment and the jobs we do. Last week, I sat for a whole hour – I tried to follow but I didn’t get a word. My boss very helpfully sent me an e mail afterwards detailing the matters that had been discussed, but it’s not the same is it? I am going to need a note taker I think.

I don’t feel like I’m part of the office anymore, socially they are still lovely people but if I’m not doing my job properly – am I really part of the team? I know people understand, but that won’t stop them from potentially getting a bit annoyed on a very busy day, about the fact that there is someone being paid to do a job, but isn’t actually doing it. This is my biggest worry.

Home life has changed in quite a big way. I am getting fed up of not being able to understand the Big One. She is such a dear little girl, her sign language is improving every day but she’s only four – she doesn’t quite understand change in the way that I need her to and she talks like a four year old does with the patience of a four year old. I am so proud of her being my little helper though. She tells me when the Small One has woken up from her nap, she also tells me if someone has knocked the door (why they don’t ring the doorbell which then flashes my lights I do not know) and she tells me when the toast has popped up – however this may be because she’s ready for toast, rather than the actual letting me know the toaster made a noise 😉

What worries me, or perhaps scares me, the most is their safety. Deaf people, with no hearing at all, or who choose and prefer not to wear hearing aids, have children all over the world and are amazing parents so why am I so worried? I feel like my safety net has been pulled from beneath me and I am exhausted with constantly checking on them, checking they’re not talking to me (I am getting rather a lot of bruises on my arm however, from the Big One tapping me on the shoulder every 2 minutes!!) or they’re upset. I felt awful when the Small One had apparently tripped over and banged her head and was crying and I didn’t know. She came up to me in tears, and I was so cross that I hadn’t been alerted earlier – the hearing aid would have picked it up – perhaps not as it happened, but definitely earlier. I gave her the biggest cuddle, mother’s guilt is such a horrible thing.

I did a good thing today that I must write about – think of the positive things, even if the negative things feel like they outweigh. Despite all my worries and scares about facing the big wide world with no hearing, this morning I met a very good and old family friend in the local park. After a short wander around, we popped into the cafe. My friend needed the toilet, and I was very tempted to say “so do I”. I didn’t need to go, but I didn’t want to be alone in the cafe on my own with the girls in case some one spoke to me. Instead, I swallowed and said that I would order while she was away and what did she want. And I did just that. I ordered a coke, an apple juice, a pot of tea. Plus a slice of carrot cake and Victoria sponge (carrot cake for me, oh yes). The man said something. I didn’t understand – I simply repeated what I had ordered – in hoping that he’d find the answer to his question in there somewhere. I think it worked as he nodded in response. I then said something that I’ve never really wanted to say before – its not because I’m ashamed, far from it. I just hate the awkwardness that can sometimes come with it, and I hate the uncomfortable feeling of “announcing” that then often makes the other person think “o…….k…….?” but today I said it and he accepted what I said with a smile and I lip-read him say “don’t worry”. All I said was “Sorry, I’m Deaf, I can’t hear at all”.

I fear I am rambling again, not really making much sense or keeping to the topic on hand. I can see that I am writing paragraphs and paragraphs about one little thing and not really being very informative or explanatory. I do apologise, but it helps me to just let my mind wander and type as I go.

I’ve written to the Guardian by the way, I love to write and I want to write in a more formal way – about life as a Deaf person and a Deaf parent. I haven’t heard back yet, but I really hope I do. I hope that my last few rather, emotive posts, don’t put them off. But I know I could do it and write engaging articles that could open the general public’s eyes on life in silence – and how good we can be at it. Or at least I think I could. Worth a try eh? 🙂

I have always been Deaf.

However a hearing aid has always benefitted me to an extent that I could communicate moderately easily with people, talk on the telephone once upon a time, hear my children shouting for my attention if they were nearby and even play and enjoy music. The hearing aid aided my lip-reading. Although I could often hear sounds, I rarely knew what they were unless I was facing the sound. I still relied on subtitles, I still relied on a lot of communication support when studying, but you know what? I think I did pretty well.

Without my hearing aid, I cannot hear anything. So what happens when even a hearing aid doesn’t give me anything?

If you read my last post (scared is not the word) then you’ll know that something has happened to my very precious right ear. All of a sudden, the hearing went and the Tinnitus started roaring.

I had hoped it was due to a sniffle. That sniffle came and went. I then hoped it was due to a blockage the audiologist found in there. That has now been cleared and there is no change. I’ve run out of ideas for why it might be temporary. Of course the hearing aid could be broken? I tried an old hearing aid and it was just the same.

I don’t know what happens next, but I have been thinking a lot about how life is going to change if this is indeed permanent.

The things you take for granted such as popping popcorn. I love popcorn, I often get the bags which you put in the microwave (salt overload, I know I know) and consider it a real treat to have some. I’ve always had to stand close to the microwave, to listen for when the pops were a second apart, and therefore the bag was ready to be opened. I had to listen very hard and sometimes they were a little bit scorched, but I could do it.

I tried to make myself some popcorn last night while my husband was out at a show. I kept my hand on the microwave as I couldn’t hear the pops, feeling for the little thuds of the kennels popping. But the little thuds are little. They’re not very strong, so when I thought it was done, the thuds were a second apart, turned out I had a lot of spare kennels in the bottom of the bag and only three quarters of a bowl full of popcorn.

And talking of my husband being out. I couldn’t find the baby monitor. The baby is a toddler now, the monitor was packed away in a bit of a decluttering panic I had a few weeks ago. I don’t know where it is, do you? But it did mean that I was a bit stuck for a device to let me know whether the small one had woken up, she doesn’t normally, but you can’t be too careful can you? Once she was sleeping through, I didn’t need the monitor anymore if my husband was on a very rare evening out. I could just sit on the computer doing my photography work, with no telly on, hearing aid on the loudest setting and all the doors open and if she woke, she’d shout so loud that I could often work out a noise was coming from upstairs. My house is tiny and the computer is right by our stairs.

Without the hearing aid, what do I do? I ended up camping out in my bedroom with the telly and my husband’s netbook and checking on her every 10-15 mins. Not the most relaxing way an evening, but at least it didn’t take long each time I checked her.

There have been two big issues with this whole not-hearing-anything-at-all situation. My children, and work.

My big one has been so sweet, she has picked up her signing remarkably well, remembering all that she’s learnt in the last 4 years and improvising for signs she doesn’t know. She behaved impeccably whilst I was with the nurse this morning, sitting on a chair quietly and did not move an inch. I told her how proud I was of her, and she gave me the biggest smile that would melt the coldest of hearts. My youngest doesn’t understand, but helps by being the most affectionate and cutest 15 month old you’ll ever know. It has been so hard, taking them out and about, crossing roads and having to be extra careful of looking out for cars. Being extra alert in the supermarket, asking Alice to listen out for the smoke alarm when I burnt the sausages amongst many other things. I am so worried that I’m going to become a bit of a social recluse as well, as already, I am preferring to keep to myself when there is more than two other people in the room. Its not personal, I’m just finding it too hard to follow. I am truly very blessed to have the most wonderful children, anyone could ask for, I hope I can find a way around this, and make sure they don’t miss out.

I am going to talk about work in another post. As I fear this is getting too long and talking about work, may even deserve its own post altogether. I also need to take a break and take my girls to buy some cake. I think Victoria sponge.

Before I go, I’d like to say a HUGE thank you to my wonderful Mum. Along with my fantastic husband, and the wonderful support I’ve had from other immediate family members such as Dollar, Hannah, Dad and Ailsa and my lovely inlaws not forgetting my lovely friends, online and off and of course colleagues, my Mum has been utterly fabulous during the last couple of weeks. Heck, she’s utterly fabulous all of the time, but has particularly been so in recent times. I think my Mum understands my ears better than even I do 🙂 Mum – I understand that my blog can sometimes be hard to read, if it was one of my own daughters writing such emotional posts, I would be the same. Thank you for everything xx

I had a very slight cold last week. Just a runny nose, nothing more to it than that.

Usually when I have a cold my hearing drops slightly. Just makes it a bit quieter, nothing more to it than that.

Normally, it only lasts a couple of days and then returns back to normal, nothing more to it than that.

This time its different and I’m scared.

Its not just quiet, it’s extremely muffly and distorted and my Tinnitus is raging beyond belief. It is almost as bad as it was immediately after I had my CI operation. It is remarkably similar to something. My left ear.

We are trying one more thing on Wednesday, CI wise. If that doesn’t work, it looks like even the wonderful people at audiology will accept there’s nothing more we can try and we’ll work out my next step.

If indeed we all agree, the CI hasn’t worked for me that means my left ear will remain useless.

If it is not due to the cold, it looks like my right ear has gone the same way. It is very possible, it’s been four days now and its not just quiet, there’s more to it than that.

I am relying 100% on lip reading at the moment. Lip reading my daughter is such hard work, she’s having to sign to me so I can understand what she’s saying. Strangers? Impossible.

Where does this leave me, if this is permanent, with work? What am I going to do? I have been really stressed this week. My head is all over the place. I’ve been irritable and easily upset, I forgot my purse every time I went somewhere. I even forgot to send my Dad’s birthday card and his present hasn’t even been ordered yet when his birthday was last Wednesday (so sorry Dad).  Everything is an uphill struggle. I’m so tired.

Ironically it’s Deaf Awareness week this week. I’ll be taking a photo later to represent the NDCS’s “Look at Me” theme. I need everyone to look at me, I always have, but at the moment, more than ever.

I’ve always been a hearing aid user. I have relied on them so much. For the last ten years its only been the one hearing aid. If I have to go down to none, I’m not sure how I’ll manage. I guess I just will. But am so scared that I may have to just manage. Please let it just be due to the sniffly nose I had. Please.

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