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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Shaking Shambles

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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.

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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.

IMG_8283I 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.

 

Spinning records…

Thank you for the music – ABBA

For some reason this classic ABBA tune has been spinning round in my head for the past couple of days, along with the thought of my hospital records that still appear to be spinning around somewhere in deepest Essex.

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This picture shows the graphic breakdown of the ear. The reason for my current profound deafness is that all the bones you see in the picture, along with my ear drum have been removed – the mastoid, the stapes, the cochlear – the full inner and outer ear features. Without my notes, particularly those from the operation, my new consultant is currently unable to see if I can be helped in regaining some of my hearing with further surgery.

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The more I read about how the ear works and the outcome from the operation, that it now appears that I have had, the more I recognise the importance of those operation notes. Having spoken to a solicitor this week, it also seems that until I have those notes and the results of the biopsies taken during the op, I have no case. Meantime, the hospital are taking 14 weeks to send me my notes – that’s 20 weeks since the operation took place! Their website claims to respond in full to all complaints within 4 weeks. Now, my maths is pretty rubbish but even I can recognise that that does not add up.

So it continues with pain, infections and silence.

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Every Day Mantra

I am hopeful that they will find my notes and results so that I can move forward – I will then see if I have a legal case i.e. if they had operated after the first scan in March 2013, would that have resulted in not losing the whole of my inner and middle ear, and therefore not become profoundly deaf?

So in the meantime, as Abba sing ‘Thank you for the music’ (and the song I attempt to sing)…

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'
‘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.