Doesn’t time fly…

 

I was quite shocked to realise that more than three years have passed since my last post, and so much has happened since then that I should have shared with you, and I will, in the style of Game of Thrones by … quests.

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Quest number 1 – My quest for hearing

After being transferred to a different hospital trust, and having been given a new Consultant, I have nothing but praise for the wonderful staff at my new hospital. My first operation with them took four hours longer than expected, as it appeared that the cholesteatoma had been left by the original ‘butchery’ where they removed most of my inner ear (bones, eardrum)  but not the cause of the problem. I then had a second follow up operation the following year where I have now been given the all clear.

Unfortunately, where it had been left, it had attacked the remaining bones in my ear, started to attack my facial nerves, and had been exposed to my brain (explains a lot). I now have a teeny tiny pink (yes, it’s pink) hearing aid in my left ear to aid and support the weakened hearing in my right ear. I am never going to get my full hearing back, as it was left for far too long, but for the time being it’s not going to be getting any worse thanks to the lovely little aid. I still have to ask people to speak up. I still worry about telling people about the fact I am reliant on the little aid behind my ear. I still rely quite a bit on lip reading. But I am now starting to see it in a positive way – at least if I don’t want to hear someone droning on I can just switch it off, or take it out.

Quest number 2 – My quest for an apology

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My second quest has proven to be rather tricky.

All I want is an apology.

Nothing more, nothing less. It seems that the consultant who completed the original operation/ ‘butchery’ has now changed their opinion from the letter she sent saying that I had received a ‘shambles of care’ and the trust are now claiming that they have done, or did, nothing wrong. It would appear that they are of the train of thought that the issue is my fault. That I should have known what was wrong and it was not their fault that they did not consult my medical history, that they scanned and x-rayed the wrong parts of my body (!!), that it’s not their fault that they missed that one of the many that I saw wrote down that he suspected it was cholesteatoma. No. Nothing is their fault and they did nothing wrong for two years prior to, or after, the initial surgery.

I have now moved on from just wanting an apology. I would like a very big and public apology. Not just for me but for all the others that that ‘surgeon’ operated on, all the others that they ignored (and probably still are ignoring), all the others that need to have their voice heard and their notes read… I have a solicitor on the case. We have received back their response and they are rejecting any claim of breach of care despite it being in black and white when presented to them. I am awaiting what action is being taken next. Apparently they do this a lot. They missed numerous deadlines to respond, forward information etc.

And still they claim it is not their fault.

At least I am able to live now, with the support of my pretty pink hearing aid (apparently I was the first adult to ask for that colour), and regular check ups – both for my hearing and to check that the cholesteatoma has not returned, which can happen. Now that I have been given the all clear last summer, after op number 3, I have moved on look at quest number 3.

Quest number 3 – the quest for a life

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The third and final quest is the most exciting. When I was given the all clear on my ear I was in a very stressful new role. I was working at a school that appeared to believe that they owned you – mind, body and soul – if you worked there. The Head actually told me that if she wanted me to work 24/7 then I would have to. All staff were under immense pressure to ‘perform’ – I can use no other word for it. Constant observations, constant learning walks, constant criticism, constant workload.. it was basically killing me. So, I was now in a situation where I could live again thanks to the surgery and aid, yet the job I had was not allowing me any time to do that. Sure I had a fantastic car, and could buy anything I wanted BUT I was not able to live. After another weekend where I had to cancel seeing friends and just stay inside all weekend working on reports, only to be emailed a request for further reports, I decided I was going to quit. I wasn’t sure at first whether to stay in education or to move back into industry and thought of applying for some trainer roles in the automotive trade. Then I was encouraged by a number of people to consider looking at teaching overseas, so I started to look and started to apply.

A week later I collapsed.

I was rushed to hospital for tests and it appeared that I had an infection throughout my body. I was on two antibiotic drips and also being fed and hydrated through another drip. The job had been so consuming I had literally not been able to drink or eat – the head had reprimanded me for drinking water in class – I was ill. Like proper ill. School was texting and messaging me, demanding that I sent in cover work, that I came back to teach. The hospital (not the one of the ear issues), was disgusted. I knew at that point I would only be going back to hand in my notice.

After four days I was released from hospital. I went home to an empty house and a load of missed phone calls from school demanding I return. They had decided to call a mock Ofsted on my department that week. I also had an email asking me to attend a Skype interview for one of the roles I had applied for overseas. I didn’t go back to work for three weeks, I was still very weak and I was now suffering from stress thinking about returning. The only reason I did return when I did was to hand in my notice. The first school that I had interviewed with had given me the job – I was now on my way to a whole new and exciting beginning.

Let the quests begin…

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Happy New Ear…

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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!

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Christmas – from just one side…

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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.

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Doctor Dillemmas

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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.

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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.

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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.

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Isolated Icicles

helplessSometimes 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?).

hedgehog_125965496_333x269One 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.

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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.

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Challenges? What challenges?

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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.

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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.

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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!!

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Bang… Bang… Fireworks in mono

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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…