Happy New Ear…

So, welcome to 2015.

New Year’s Eve is always a time to reflect on what has gone by and what is yet to come. Last year instead of making New Year resolutions, my friends and I wrote out cards of what we wanted to achieve by the end of 2014… we read them out at our New Year Eve’s celebrations this year. Mine included to start to write a book (well, I am now blogging and have been sharing some of my short stories), to get rid of the clutter (clothes, junk, people), to lose a stone in weight (don’t we all say that lol, I reckon I have put at least one on!), actually go to the gym that I have joined and the hilarity of performing stand up comedy…

This year I have yet to decide as to what I should put down as resolutions, instead I have decided to set myself goals for the year ahead:

1) Keep on blogging, develop my facebook page to get more followers   http://www.facebook.com/defyingdeafdistractions

2) Develop one of my short stories into a book plan, if not write the whole thing

3) Get enviously fit and healthy – or just lose some weight and keep up with the aqua and Pilates, so I can run to the pub without getting out of breath and frankly rather sweaty (deodorant prevents the smelly element I find)

4) Start to ask the universe for help when I feel I need it – love life might need a kick start (it has been a long while!)

5) Become more open to my spirituality and possibility of mediumship development – something I started last year after I was told I was profoundly deaf in my right ear, could be a way of developing opportunities for hearing in other ways and forms

6) Keep it real within work, friendships and expectations of myself

These goals alone could prove interesting blogging as the year goes on…

Let’s hope 2015 is a good one – Happy New Ear to you all!

Christmas – from just one side…

Despite Christmas being a religious festival, it still seems that everyone is more interested in the presents under the tree and trying to out do one another in competition for the biggest, brashest and most ridiculous present ever. Thankfully, this year I went back to basics and had a Christmas that was based around love, friendship and laughter… lots of laughter!

2014 has been a difficult year with my hearing problems, the operation, the ongoing attempts to have some form of aftercare from the hospital and consultants and then the more personal family problems – that I have not discussed here, or on any other form of social media as I don’t think this is the place to air your ‘Jeremy Kyle’ laundry.

Thanks to my wonderful group of friends I have managed to feel blessed this Christmas and for once have not had to worry about competing with anyone else, not had to concern myself as to whether I was going to be the only single at the table, or the only one who took a second helping of Christmas pud. I haven’t had to worry about not being able to hear everything that was said, with people taking their time to make sure I was ok and that I wasn’t in too much pain, or feeling isolated.

This Christmas has been the best that I can remember for a long time, despite the inner sadness – so God bless to all my readers and fellow bloggers. I hope that yours was full of the true spirit of Christmas and love as well.

Doctor Dillemmas

Recently I have been feeling a bit like I just want to fly away with some loud music and a tinny beat. Unfortunately, the reality of the situation is that I have to go to work every day, like the rest of the population, and just dream of sunbathing in warm temperatures with a glistening sea and a marvellous tan developing to make me look and feel much more healthy than reality.

At the weekend, once again I had blood and gunk coming out of my ear. I am not bothered by the ‘gunk’ and can even cope with the pain now – thanks, to a strong pain threshold – but its the bright red blood that is concerning me. Like most GP surgeries, trying to get an appointment is a nightmare these days. Once you get past the receptionist whom you have to get every last detail of your ‘concern’ to – they then say that a GP will call you back. Unfortunately, they can’t confirm the time that the GP can call you back and when you are a working person and you can’t take personal calls that makes it a little tricky to get an appointment. Despite asking for them to call back between 12 and 1 – they didn’t actually call back until around 3pm. The GP that called had a very strong European accent and constantly whispered. Needless to say even on loudspeaker next to my good ear I could not hear her properly. I could however tell that she didn’t want to see me.

I managed to get an appointment for later that afternoon/ early evening.

After getting there early, I still waited for over half an hour past my appointment time. Eventually, I got in there. The woman had not read my notes, and appeared to sigh as she mumbled about my going there too often about ear infections to get just antibiotics. Before even looking in my ears, she said that she did not want to give me any more antibiotic drops. I tried to explain that I didn’t actually think that I had an infection as there was no temperature or pain. It was the fact that it was red blood that was being discharged that was my concern. She looked and surprise!  – there was no infection.

When I asked if she could speak to the hospital to bring my next appointment forward she said that it wasn’t her job to do that, she was too busy. It was down to me. She then sent me away for a blood test to see if I had an infection in my blood or diabetes! I have no symptoms for either, other than telling her that I was becoming extremely tired from concentrating and lip reading since losing my hearing in my right ear – and asking if there was any chance I could have an appointment to see if I could have a hearing aid for my ‘good’ ear. Obviously, that doesn’t come under her remit either.

I went for the blood test today – let’s see what the results are…

I also called my new Consultant’s secretary, they still have not received the operation notes, biopsy results or any communication from the original trust. It has been over a month since they requested them directly and 12 weeks since requested them. I am expecting them this week – but not holding my breath. The reason my appointment to see my new Consultant is not until February, is because that is when they suspect they will finally get the information that they need. This will be 2 years since my first appointment! Who on earth calls these people to account?

Incompetence and negligence are two words that I never thought I would say about the NHS but they seem to be regularly bounced around now. I would also say that none of the contacts I have had, either at the original hospital trust or  my GP surgery have been English trained. Most have been European and locums.

Well, Friday seems to be the day of reckoning – for results and hopefully, the opportunity to understand what has happened to me and why. Let’s hope at last someone will be held accountable and explain. An apology would be nice.

Meantime, look forward to flying along on the icy streets tomorrow.

 

Isolated Icicles

Sometimes lately I have been feeling down. Really down. Way down. I am finding it difficult to keep positive in the face of adversity and for those that know me and are following this blog, they will know that this is not the usual me. The clocks changing always bring me into believing that I suffer from SAD – it’s the thought of getting up and going to work in the dark and then by the time that the working day is over, its back to the dark again. In a desperate ploy to fight this battle with the winter darkness, I have now invested in a Lumie Bodyclock – which is supposed to wake me up with gentle rising sunlight and help me to fall asleep with a beautiful sunset. As I am also convinced my hideous sleeping pattern is partly due to my constant concern that I won’t hear my alarm if I am asleep on my ‘good’ side – I am hopeful that this will help all round.

So, as the nights get darker they also seem to be getting a hell of a lot colder. Dancing on the spot isn’t even working in these conditions – so I am thinking perhaps I should just hibernate (it could also help in losing weight, surely not eating for months can only a good thing?).

One thing that I have really noticed these past few weeks is how tired I am. Now, I have never been one to sleep a lot – five hours is a good night for me – and yet, I am now getting more sleep, albeit staggered, and feeling more tired than I have ever felt before. I have been trying to work out what is causing the tiredness and lack of general va-va-voom! and can only conclude that it must be down to lip-reading.

Since taking the ‘accessory’ out after finding it longer works following the operation, I have been (1) profoundly deaf in my right ear and partially deaf in my left ear (2) having to rely on shouty people or lip-reading. Now, lip-reading is a full on task anyway but with the addition of being a teacher with between 25-30 voices crying for your attention in a room, it becomes the task of a superhero. I seriously need to achieve a special power to help at times. I am not sure if its the focus, the attempt to hear some form of sound, the need for a volume switch, the frustration of not just being able to hear without saying ‘Pardon..’ or ‘Can you say that again..’ numerous times … it’s never ending.

So this week I have decided that I will do something about this frustration and contact the GP and my new Consultant in hope that they might be able to help me out of the doldrums and back into the festive fun. I am hoping perhaps something to aid my partial deafness  left ear, whilst we still wait to hear back results and operation notes – I still do not know why they removed the whole of my ear. I also  to seek some advice about the blood that keeps discharging from that ear, as this too is starting to become a concern. The deadline for the original hospital finding my notes is in 10 days time – fingers crossed.

Meantime, I have just purchased a new CD so will be playing that loud, dancing on the spot, singing in a tuneless voice and smiling outwards, whilst inside I sob my heart out.

Challenges? What challenges?

This week I haven’t been feeling all that great to be honest.

It’s been a combination of pain, tiredness and just feeling pretty low.

As a rule, I try not to let this ‘negativity’ affect me but for some reason the last couple of days it seems that my usual strong armour has chinked a little and allowed some of the ‘yuk’ to get in. I’m taking anti-inflammatory tabs and pain killers like they are going out of fashion and yet the pain is still there. I am constantly feeling in a state of mouth wide open yawn – not the most attractive of looks – no wonder its still the single status box ticked. And, I’m sure it’s the effect of those pesky clocks going back and causing the never ending dark days and nights, that is contributing towards my negative and feeling low persona.

Weekends should be a time for re-charging batteries and the sound of echoing laughter vibrating around your head so much so that you get a headache from even thinking about a smirk becoming a giggle, and then the giggle becoming a full on belly huting laugh.  I am hoping that the next week will start to see a new improved me, so that this in-the-head-laughter will start to echo once more. I can’t always hear the joke nowadays, so a pretend laugh, or haha, at what I believe to be the punchline is becoming more of the norm – I just hope that the laugh isn’t on me for my poor timing of a giggle.

I am planning a new regime, brighter lights, actual visits to the gym (not just putting the gear in the boot) and a whole new healthy diet – fruit and veg. I am hoping that this new approach will help me start to feel more positive about the inside and outside of me.

The plan is to lose a stone by Christmas – I have noticed that the weight has crept on this year, thanks to medication and doctors constantly telling me not to go to the gym due to my balance and low blood pressure issues. I also want to set myself a fitness challenge, like an impossible walk or climb, or even (the who know me will recognise the horror in this) a run – a half marathon. I will keep you updated with the task… and hopefully, results.

So, here’s to a more positive, slimmer, fitter, more challenging me! Why should a little thing like deafness and pain stop me?

Cheers!!

Bang… Bang… Fireworks in mono

Fireworks are rather ironic really – celebrating an attempted blow up of Parliament with a massive (expensive) display of colour and sound – along with rather a lot of ‘ooooohs’ and ‘arrrrrs’.

I didn’t go to any fireworks displays this year, staying at home with marking, shivering and wearing my coat indoors instead. But, I could still hear the local display.  It was very strange as when I realised that the fireworks were actually loud (not their usual really loud) and I was only hearing them from one side. Fireworks in mono, not stereo…

 

Shaking Shambles

Finally, I have started to get some idea of the mess that the summer operation has left behind. Unfortunately, until the hospital finds my notes, I am unable to move on and accept why I now find myself profoundly deaf in one ear – when I had expected to be of the same quality, or better, hearing after the operation.

I can’t even use my hearing aid any more – when I was just getting used to it and feeling ‘normal’ again.

It seems that Consultant is now admitting a ‘shambles of care’ in a letter I have now received. Although this is a horrific admission, it actually makes me realise that I am not going mad and I am looking forward to getting the final report in another 5 weeks time – the hospital website claims I should have had my complaint dealt with fully within 4 weeks, I am currently at 14 weeks from complaint and 16 weeks from operation. It is looking like they have definitely lost those op notes.

In the meantime, I still wait to find out what the actual major disease was that I had in my ear to cause the removal of the entire content of my ear – bones, eardrum –  completely hollow. I wait to see if there was a disease there that could spread to other bones within my body. I wait to see if there is anything that could have been done earlier, like during the two years that it took for them to do the operation.

Today I am in a lot of pain. Sometimes the pain feels as though it is vibrating through my ear, this makes me hopeful that there are some nerves that have been left behind, somewhere in there. The pain often makes me feel sick. The sickness and pain together make me feel giddy and almost in loss of control of my balance, like I need to hold the wall when I walk or perhaps just stay sitting down.

I am hopeful that tomorrow there will be less pain. I wish that tomorrow I might hear a little sound. I will try tomorrow without taking tablets. I am determined to stay positive and strong – and of course, hopeful.

 

Halloween Happies

Halloween is definitely one of my favourite times of the year – being a lover of horror and all that goes bump in the night. I think the whole idea of not being able to actually hear something creep up behind me, not knowing until it taps me on the shoulder, is maybe one of the more spooky things that will happen this year, as I make my way to the London Dungeons and all those haunted ‘dead’ (rather than deaf).

This half term has been a rather eventful one, and a heartfelt thanks to all my friends who have kept me sane throughout. A highlight was seeing the original script of Frankenstein, along with margin notes for improvement, at the Gothic Exhibition in the British Library. I think I discovered a whole additional bunch of books to download to my Kindle that I have not yet read, to send some shivers down my spine through the winter months ahead. Oh, the beauty of the written word.

The Gothic genre, and horror in general, is based around the unknown. Working on people’s fears. A Scarefest. Hollow darkness. The what ifs… With the loss of sound, the fear is then heightened around the images, the smells, the touch, the tastes… I may try to write a short story without sound being mentioned, to see how the other senses could be heightened in order to develop a sense of fear for the characters.

I think of my own initial fear when the consultant told me that I was now profoundly deaf in my right ear and how I have, so far, managed to face that fear. I am hopeful that I will be able to battle with the darkness, the evil of the unknown, the fear of not knowing what I am missing out on. I think of the surgery as a vampire bite that has taken some but not all of my life blood. I intend to devise that vampire hunters kit and take control..

I will bite back!

Accessorising the issue

Back in March this year, I finally managed to see a Consultant who appeared willing to help rather than just send me for more brain scans. Despite my numerous qualifications, it would seem that my ‘scattiness’ over took on the possibility of my brain causing my sudden loss of hearing, constant pain and infections rather than a problem within my ear.

She suggested an operation called a Mastoidectomy, where they open your ear from behind and remove the small mastoid bones that may have been diseased with Mastoiditus. These bones connect to your brain and if the disease moves up them, it can actually cause that side of your face to become paralysed. I was told that this operation would improve, or at least keep the current level of hearing that I had in my right ear, and would prevent any further infections or pain. Of course I jumped at the chance for an end to the pain that was at this point virtually a permanent state.

I was also introduced to the idea of a hearing aid.

I’m not going to lie – this horrified me.

The thought of wearing a contraption which would make me feel even more ancient than I already did, make me have even less self confidence than that which was rapidly disappearing out of the door, and would potentially make me feel like a freak as I walked along – scared the bejeebers out of me.

A hearing aid was for someone who was retired, living in an old people’s home, knitting and sucking on their false teeth – not for someone who still wanted to party, dance, live, love.

But the thought of a continued life of saying ‘pardon’, ‘what’ or ‘sorry’, was equally unappealing, so I braved it to say yes. Besides, the Consultant gave the impression that it would be temporary, only until the operation had taken place.  After yet another hearing test and having some gunge poured into my ear, I was told that an appointment would be sent through to have it fitted in a few weeks.

Going online, you could be led to believe that you will have a choice of hearing aids. That you could almost have any colour that you want. I thought that to be unique and make a fashion statement I would ask for a really bright one. This could be a way of making a visible statement about disabilities not being something to be afraid of, or embarrassed about, in conversations with my students at school.

I was adamant that I did not want an old biddy style hearing aid. I did not want the humiliation of it. I felt assured by the online information that this would not happen.

Reality was very different.

I arrived a month later to collect my hearing aid, having been told that it would be fitted after a discussion of the most suitable ones and enabling me to select the one that I wanted. My appointment would be an hour long and I was to bring someone with me to help me adjust to the sound.

This is what I was just given – no discussion – no selection – no choice.

Granny bashers for the eardrums.

 

 

‘Accessorise it’

I felt like crying. This was the first step to feeling officially old. The slippery slope towards being humiliated. I felt like the kid at school who knows that when they arrive tomorrow, their friends will say ‘Oh you can’t see it at all…’ and in reality the bullies who are pointing, poking and laughing are the ones who are telling you (and everyone around them) the truth.

Having said that when I put it in, after a bit of a fight, for the first time in a very long time, I could hear without having to lip read. I didn’t have to say, ‘Sorry, could you say that again?’ I could even hear my heels clicking down the corridor – that did make me giggle a bit.

I kept reminding myself that it was only a temporary measure and the operation would mean no more pain, no more sickness, no more hearing aids.

After a while it became known as my ‘accessory’ – I guess I could have added a bit of bling to it, if needed, and it was only temporary.

And best of all… I could hear music in stereo once again. What a beautiful sound that was.

 

Silence is broken…

One of my favourite hymns was (is) Morning has broken. The lyrics define the way in which we enjoy the beauty of nature – through images, colours, symbols and sound. When I received the news – that I was kind of expecting – this week that I am now profoundly deaf in my right ear, at first the whole world and all those images and sounds flashed through my brain, like a kind of ultra bright music video that I enjoyed in the 80s. I couldn’t, or didn’t, really focus on what the Consultant was saying for a few moments; just on the thought that I may not be able to enjoy those images in the same way ever again.

Once I did enable myself to start to listen once again, I had to focus carefully to take in what was being said – my hearing now, as a result of the operation that took place in the summer, in that one ear, was at a point that I was considered profoundly deaf. It is still unclear as to what they actually did in the operation, unclear as to why such a large biopsy was taken from my ear,  why I now have no bones to enable hearing left and what has happened to my notes. I don’t want to write this blog as a sound-off complaining about the doctor, the hospital, the experience that I had – that is something for the solicitors and the legal people. Instead I want to use this as a way to show how positivity can come from adversity and if despite my initial thoughts of panic and despair how I can cope and continue to live my life to the full as much as possible.

I am female.

I am in my 40s.

I am very much single.

I am the mother of a post-teen.

I am a teacher.

I love language, conversations, laughter, music, dancing and my friends.

I am desperate for this to all continue (well, apart from the single bit, if I’m honest)… so I am hoping that by recording my ‘journey’ on this blog, I can meet some like minded people and remind myself of how far I am going.

At the moment I am hopeful that I may have a chance of some form of implant to help give me some hearing back – this is dependent on the op notes and results of the biopsy that were taken – I recognise that this will be a massive op but I think that it is the prospect of this at the moment that is making me feel hopeful for my future. I was dancing last night and thought – ‘God, imagine if I couldn’t hear the music. Imagine if I couldn’t feel the music. I couldn’t hear the laughter and the clinking of glasses and heels… Imagine if I was in a world of total silence.’ I guess its the selfish aspect of me that thinks the negative thoughts, that has nightmares about waking up to a world of pictures but no sound.

In the meantime, I turn it up and shout it out!