36. Having To Face Reality ~ 7th July

I'm having a massive, long overdue clear out in the house. I've had to make the difficult decision to get rid of every CD I own. What's the point of keeping them if I can't hear them? I look at the song list on the back of the cases, most songs bringing back a wonderful memory. I have a lump in my throat and my eyes fill up as I know I will never hear them again. I wish I could hear enough to play them just once more. I scoop them all up into a bag ready to take to the charity shop. My stereo and iPod will be in the next bag.

35. The Eventful Journey Back ~ 5th July

Again I asked the guard before the train left if he would alert me as to when I was approaching my destination and whilst he said he would I was far from convinced! I didn't know what to expect on my return train journey and the thought of the train breaking down not once but five times had not crossed my mind! I had to embarrass myself (I still get very embarrassed by my hearing) by saying to another passenger "I'm really sorry to bother you but I'm deaf (I then get the surprised but pitiful look) and therefore I can't hear whether any announcements have been made as to what's happening". The first gentleman said "oh, I haven't been listening!", but the man behind me tapped my shoulder and told me what had been said. Very kindly he kept tapping my shoulder to update me which was brilliant until he got off at his destination leaving me back at square one.

The guard did not forget about me after all and when approaching my station he came running down the packed carriage (with passengers blocking the aisle due to them standing up to get off the train), pushing people over whilst repeatedly yelling "I need to get to that girl, you'll have to move out of the way, I need to get to that girl"...it was very amusing!

Walking along the platform, I suddenly realised the bags I was carrying were very light. A few bad words entered my head as I realised that I had left one of my bags on the train. I sprinted along the platform which must have been a very amusing sight what with me carrying a large overnight bag, 2 full carrier bags, my handbag and me completely out of breath with my hair all over the place! I think he took pity on me because of me being deaf and he stopped the train whilst he dashed to where I had been sitting and found my bag! What a day!

34. I Cannot Hear! ~ 4th July

Today I went on the train by myself for the first time since going deaf. I must admit that I was a bit apprehensive knowing I would not be able to hear announcements.

I said to one member of the staff on the train "I am deaf and cannot hear announcements made on the train, so could someone please inform me as we approach Edinburgh station? My seat is 49 in coach M". To which the woman said "when you hear them say that you are in Newcastle then Edinburgh is the next stop"! I had to stop myself from laughing.

33. Stone Deaf ~ 3rd July

As soon as my sister was given tickets for her immediate family to attend her graduation, she contacted the organisers to alert them about both my father and I being hard of hearing to ensure we got seats where we would hear the most. When we went in the building today, it soon became obvious that nothing had been done. Fortunately our parents were coincidently given good seating where our Dad was able to hear. Siblings on the other hand had to sit separately. The best seat they could give me was right behind a stone pillar preventing me from seeing anything and therefore I couldn't even attempt to lipread anyone!

Although where I was seated gave me the opportunity to count the cracks in the pillar (and wonder how on earth I would escape the building should the cracks get worse and the pillar collapse!), I did actually get the best view out of everyone because having been awarded their degrees, the graduates had to walk past the stone pillar where I was seated. On the way back to her seat when my sister reached my stone pillar, she gave me the best smile ever. I am a very proud big sister! 

32. The Blind Lady ~ 2nd July

I met a blind lady today called Julie. I was by myself in the hotel lounge making myself a cup of tea when I saw her sitting by herself. Her guide dog gave it away. I walked over to her and asked her if I could stroke her dog because it had a coat on which said something along the lines of 'working dog, do not distract'. I ended up sitting by the lady and we had a long conversation about all sorts of things. I don't know how it came into conversation, but I revealed I was deaf. She was asking me questions, wanting to know more. I briefly summarised that I had perfect hearing and then unexpectedly lost my hearing within two months earlier this year.

"Do you have those hearing things in your ears?"

"Can you do that thing with your hands?" she asked, imitating sign language with her hands. "Are your parents deaf? Do you just have deaf friends? You're very young to be deaf aren't you?" Her questions went on and on as though she needed to know everything about me. I didn't have the same need to hear about her history, just her dog!

When I first started my blog, you may recall that I wrote about being so thankful to have my sight despite the fact I was losing my hearing and I have never doubted that since. However Julie told me how lucky we both are as we have both had our sight / hearing for a period of our lives (she became blind in her early forties) and I agreed with her. Julie then said that she had already built an image of me in her head and she could only do that because she remembers what things looked like. I am ashamed for feeling this way but I actually felt envious of her because contrary to what she believed I can't remember sounds. I know that a bird makes a 'tweet-tweet' noise but I can't remember the actual noises. She could create an image of me whether accurate or not, whereas I can't create noises in my head. 

Despite me being able to remember things said by close relatives who have passed away, I cannot actually hear their voice. Whist all the hearing people I have spoken to about not remembering sounds and voices have the same problem as I do, there are people who claim to remember the actual noise years later.

Despite meeting Julie just a few hours ago and having just written about her, it has just dawned on me that I can no longer hear her voice anymore.

31. Dialling 999 when you're deaf ~ 30th June

You're with a relative and they suddenly collapse, so you dial 999. You witness a traffic accident, so you dial 999. You see someone's house in flames, so you dial 999. What do you do when you are deaf as you won't be able to hear the emergency services operator?

I picked up a leaflet whilst on my course but I have only just looked at it properly. The leaflet talks about how to register with a text message service run by the emergency services. I am now registered to text 999 in an emergency and provide specific information ie location etc. It took very little time to register and could save not only someone else's life but yours too. If you too are deaf, I urge you to register.

For more information, please click on this link: www.emergencysms.org.uk   

I'm afraid that I don't know whether this service is available in other countries. If any of you know, please let me know.

30. A bit of DIY ~ 28th June

I went back to see the audiologist for the third time this week to sort out my other painful hearing aid. I was surprised to see the electric-sander hadn't been replaced. Inevitably as soon as he turned it on it kept making terrible noises that even I could hear. After a few questions I discovered that the machine isn't even an audiological piece of equipment, but rather something you get from your local hardware store! I thought it looked very similar to the one I have in my garage! I would have brought mine along if I had known! He shaved a bit off both hearing aids, but I cannot tell at the moment whether they are comfortable because of the blisters and cuts they have already caused on my ears.

29. Rainbow Eyes ~ 26th June

I have to apologise for being behind with my blog, I've been away and also submerged under life's stresses - I'm sure you know the feeling!

I went to the audiology clinic today for an appointment to see if I fit the criteria to be given some equipment to help me lead as normal a life as possible.

The lady almost immediately commented on me having different coloured eyes. All the usual thoughts sprung to mind when someone says "oh my goodness you have different coloured eyes!" such as 'duh..do you think I have never noticed that before?' (of course I didn't actually say that to her!). Rather than the normal "wow, that's so cool" or "that's so unusual" or "they are amazing" or " have they always been like that" or "they are so beautiful", this time was different with the lady saying "interesting". I asked her why they are interesting and she started telling me about a condition called 'Waardenberg Syndrome'. She told me that two of the symptoms of this condition are different coloured eyes with one eye having a different coloured iris eg one of my eyes is blue and the other is a mixture of blue, green and brown. The other symptom I have is being deaf. I looked into the condition when I got home and other than those two traits, I don't have any of the long list of symptoms such as a white lock of hair, premature greying etc, so it has been ruled out).

Then the questions began:

"Can you hear your front door bell ring?

Can you hear the telephone ring?

Can you hear the person at the other end of the line when you're on the telephone?

Can you hear the television?

Can you hear someone shouting from downstairs to you upstairs?

Can you hear the fire alarm ring?

Can you hear your alarm clock?"

........ The questions carried on and on. 

She said that I met all the strict criteria and in a few weeks time a man will come to my house with lots of goodies and gadgets. I wanted to jump up and down, finding it hard to contain my excitement knowing this will be life changing for me.

28. The old man ~ 25th June

An old man who had suffered for years with severe hearing loss decided he had had enough and needed to get help with his hearing. He went to the audiology clinic and the audiologist provided him with hearing aids that gave him perfect hearing. A few weeks later he went back to see the audiologist. Having examined the old mans ears, the audiologist congratulated the man for his progress and said "your family must be overjoyed and amazed  since you are no longer deaf". The old man replied "I've got no intention of telling them yet. I pretend I'm deaf still, but I secretly listen to their conversations. I've already changed my will four times!"

27. A quick shave ~ 25th June

It's only two days since I got the new hearing aid moulds and I am already back at the audiologists because the moulds are so painful.

You know the discomfort of wearing a brand new pair of shoes for the the first time and they give you a horrible, painful blister? Well that's what's happened with my ears. The bit of the mould which goes inside my ear is fine and a much tighter fit than the first pair which is great. However the outside part of the mould is rubbing under one of the folds in both ears.

With a sanding machine the audiologist shaved the bit of the mould which had been hurting me so much. When examining it he said that it had been bleeding hence why it's been so sore. Just as he started to shave the second hearing aid, the machine overheated and decided to stop working...typical! I have to go back on Saturday by which time the machine will have been replaced. 

26. Collecting mould ~ 23rd June

I've just collected the new moulds for my hearing aids. They are made out of silicone as opposed to my old ones which are made of vinyl. They aren't as soft but they appear to be a better fit because they go deeper into my ears.

25. Day 4: Thinking ahead ~ 20th June

This morning we were given an interesting talk about cochlear implants. 'Surgery Encyclopedia' says "A cochlear implant is a small, complex electronic device used to treat severe to profound hearing loss. It is surgically implanted underneath the skin behind the patient's ear" (quoted from 'encyclopedia of surgery'). I am not going into any detail about cochlear implants because they are such an incredible and complex invention that they warrant their own entry on my blog.

It was then time to say goodbye. It was really difficult to leave the course. Whilst saying goodbye to my fellow students was sad, leaving the actual course was the worst. Leaving the things which I had never imagined I would experience. I went on the course for four reasons: 

1. learn more about being deaf, 
2. meet other deaf people, 
3. get some support for my family, 
4. use the hotels swimming pool. 

Other than that, I wasn't expecting a thing.

What did I gain from the course? Not only was the course content educational, it was supportive for my family, it provided me with a wealth of information, I received support from experienced staff, I gained courage, strength and I'm emotionally stronger than I was before. I am grateful for what I've got compared to those less able to use technology for example the much older students on the course. I was made to feel normal, spending time away to reflect, knowing that there are things available to help me lead the best quality of life I'm able to. I was given hope, allowed to talk openly, we shared experiences, gained tips from each other and I never felt alone. I have been given so many suggestions of things to look up when I'm home. I have learnt things in preparation for my future but being realistic at the same time, knowing that there are challenges ahead but also knowing that I'm normal and that I'm still the same person I was before going deaf.

Thank you NHS for funding the course and thank you Hearing Link for an amazing few days!

24. Day 3: Yogi Alarm ~ 19th June

For me, the first session was one of the most important topics of the course. A man talked to us about different sorts of equipment available for those hard of hearing. After talking to us he showed us some of them and we were allowed to touch them, feel the weight of them and generally have a fiddle around with them and to get the general feel to see whether they could help us or not. There were different types of amplified telephones, alarm clocks, door bells, pagers, fire alarms etc. I asked the man if he could let me hear how loud the fire alarm is to see if I could hear it (I can no longer hear our two fire alarms at home which were fitted by the fire brigade...that's another story!). The man pressed the button on the alarm. Can you remember me telling you in my last post about Yogi the hearing dog? Yogi is trained to react to particular sounds ie a particular doorbell, fire alarm etc. As soon as the man pressed the alarm button, Yogi bounded over to Steve (his master) and firmly put his paw on Steves leg to get his attention and then lay completely flat on the floor. This is Yogis way of alerting Steve that a fire alarm is ringing. That wasn't even the fire alarm which Yogi had been trained to respond to....a highly intelligent and amazing animal.

To see how Yogi has helped change Steve's life, please watch this short video (he is on at the start of the clip)  Click here.

During the morning, I learnt that there really are things available to help me lead as normal a life as possible. The only problem is that sadly the majority of all these things are very expensive.

We discussed 'tinnitus' this afternoon. I already know a bit about tinnitus as I have it. Most tinnitus sufferers have a very high pitched ringing in their ears. I find the louder the background noise and also being very tired being makes the ringing sound worse. I have had it several years. Since wearing hearing aids I have found that they have stopped the ringing in my ears, however the moment I take my hearing aids out, it comes back with a vengeance. I have a love hate relationship with tinnitus because whilst I hate the tiring, annoying, monotonous ringing, it makes me grateful that I am able to hear something.

As soon as the session had finished, I drove to a nearby shop to buy a present for Yogi after all, he deserved it.

             

We finished the evening by watching The World Cup...Maybe I should avoid that subject!

23. Day 2: The Crown Jewels and Paw Yogi ~ 18th June

This morning we discussed lip reading and we practiced various sentences such as "I went to London to visit Buckingham Palace to see the Crown Jewels". We lipread where each of us lives i.e. Leatherhead, Staines, Ashtead, Farnham, Guildford and Shepperton. We used words that sound similar to each other ie pad, bad, mad. We also talked about certain numbers i.e. 13 & 30, 14 & 40, 15 & 50, 16 & 60, 17 & 70, 18 & 80, 19 & 90 - stand in front of a mirror and notice how similar the lips look like for each pair of numbers. The hearing people were told that using their fingers to indicate the number. The lady came over to me and suggested I learn sign language as she thought it would be more beneficial to me than the older students, so she kindly said she'll look into it for me. We also talked about assertiveness and asking people to stand in good lighting, ask them to repeat what they have said, ask them to speak up and for us to keep asking until we achieve what we set out to get. When you ask a hearing person to repeat something, they will say it exactly the same way as before. We were told to ask people to speak slower (not necessary louder because the person will shout and this alters their lip movements, making it even harder to lipread), ask them to face me, ask them to use different words, ask them to keep their hands away from their mouth and if necessary ask them to write it down (I haven't had to use it yet but I now always carry a small notebook with me). I have found that with significant hearing loss you have to be more assertive as well as confident, which I am struggling with. When you can't hear someone behind a counter for example, it is too easy to look at the person you are with to get them to repeat it to you. The thing I find the hardest is going into a noisy restaurant, cafe, bar etc and asking them to turn the music down. I have never had the confidence to ask yet as I have always asked someone to do it for me.

The hearing people were given headphones to wear which were attached to a MP3 player playing white music and then huge builders headphones on top. Those who managed to keep them on for the duration of the break, the rest of the session and lunch, reported how tired, confused and isolated they felt. Whilst I would never wish for anyone to feel like that, it was a good exercise to allow hearing people to experience a taster of being hard of hearing. The big difference of course is that they were able to remove the headphones, either when they couldn't hear what somebody was saying to them or when they had simply had enough. We (the hard of hearing) were told that we should always make time for regular non-concentration breaks to stop us getting so tired. A snooze every afternoon does sound appealing don't yo think?!

A lady from an audiology unit of a nearby hospital talked about hearing aids, what they do, whether private hearing aids are better than NHS hearing aids and so on.

She said that all hearing aids do is make things louder and whilst she's the expert, I disagree. It is true that hearing aids amplify sounds, but it is not a case of making peoples voices louder. Background noise become louder, music becomes louder, building work becomes louder. Do individual voices become louder? For me the answer is no. Even with my fancy hearing aids which are meant to minimise background noise, these other noises can overpower the sounds I want to hear making them hurt my ears and making me tired. My reason for disagreeing with the lady is because the hearing aids don't just amplify noises but make them sound different to the way I used to hear them when my hearing was good. A lot of noises sound 'tinny', some people sound as though they don't have any teeth(!) etc. I will write more about this topic in a future post.

I noticed yesterday that there were two people at the course along with a dog which had a coat on it saying it was a hearing dog. The couple, Steve and Chris, were in fact volunteers. Chris has good hearing whilst her husband Steve can hardly hear a thing. This is where Yogi comes in. Yogi, a soft gentle and placid dog, hadn't had the best start to his life, but things changed when the charity 'hearing dogs' found him. After a very long period of training he was found to be a suitable match for Steve. Steve said that Yogi had changed his life for the better. I've got a few questions lined up for Steve and Yogi tomorrow as I want to know more!

              

We had a social event in the evening. Our "classroom" had been transformed by the staff; all the tables had been moved around and were beautifully set. We had been told that there would be evening entertainment....a magician. I automatically had visions of a clown prancing around, not my idea of fun (sorry if there are any clowns reading this!). Therefore I was relieved to see a man in a suit with no face paint in sight. The evening turned out to be great fun with the magician going from table to table. With a lot of persistence I succeeded in getting the magician to reveal some of his tricks to me! He even told me his biggest secret which is.....I suppose I shouldn't reveal all to you in my post though! The evening made me realise that I must never have a career as a magician. I was worse than awful!

22. Day one of the residential course ~ 17th July

The course started yesterday so I sadly missed the first day. I was hoping there would be someone close to my age, on the course but when I opened the door I must admit that I was disappointed. The person closest in age to me was 20 years my senior, but the majority of people were in their seventies.

We started the day discussing 'practical communication'. We talked about problems with some loop systems. My very basic description of a loop is: most modern hearing aids have a button which you can change to go on a 'loop' programme. In places such as some theatres, some banks (usually only at the desk), some post offices (usually just at the counter), some supermarkets (only at where you pay), some churches/cathedrals etc they have a machine called a loop which enables those with hearing aids to wirelessly connect to their machine and supposedly make it easier for the hearing aid user to hear. You may have noticed that I used the word "supposedly", which is because I've often found that it has made no or little difference. My audiologist explained that this is usually because of three things: either the 'building' have not turned their system on, they have not set-up the system correctly, or it is a very cheap system which they have bought! We were taught that if we make an appointment at somewhere such as a bank, we can request that they provide a note-taker which they should pay for.

I told them about my recent incident whilst visiting the dentist. I was told that in the future I should ask the nurse (who is always present during the appointment) to look at me and repeat everything the dentist has said during the appointment. What an obvious thing to do but I had never thought of doing it. It was great to get tips off other people who had 'been there, done that, got the T-shirt'.

The session over ran so we weren't able to do the last bit of the morning. It was a shame as I am frequently told I am talking too quietly which is because my Dad has shouted since he started to lose his hearing and I have been so determined to not do the same that I have ended up doing the opposite. When you lose your hearing, you have no idea of what volume you are talking at.

After lunch we had an introduction to sign language and also finger spelling which was fun. I found that when lipreading it can be really helpful when someone finger spells the first letter of a difficult word.

Copied with kind permission by BSL Communication (www.bslcommunication.com)

This wasn't discussed on the course but do you know how many versions of finger spelling there are? According to the website 'Ethnologue' (http://www.ethnologue.com/subgroups/deaf-sign-language) there are a total of 130 types of finger spelling alphabets eg British Sign Language, American Sign Language, Australian Sign Language, Kenyan Sign Language etc. I have also read  that there are several thousand versions throughout the world. Whatever the exact figure, you can see that there are a lot. Unfortunately it is not a universal language which makes communication even harder for a deaf person whilst they are travelling.

Having had afternoon tea (which was always yummy!) we had a 'relaxation technique' session which if I'm honest I didn't enjoy. I love relaxation (who doesn't?), however in the past I have been taught far more effective and more advanced techniques. Rather than relaxing, I kept thinking about all the other things I would like to do or should be doing instead (like a nice swim in the hotel pool, writing to you on my blog, catching up on e.mails etc). I also found it hard not to laugh as I heard a few snores from fellow pupils! However it seemed a very successful event for most people and had the desired effect intended which was good.  

After all that learning I had a good nights sleep!

21. My listening feet ~ 14th June

At this very moment, I am sitting outside at a huge outdoor concert with an audience of 6000. There are some famous singers and a well known orchestra........... What a noise! However whilst all of the audience have smiles on their faces, I want to stick my fingers in my ears. 

Try turning your television to the loudest volume it will go to and listen to how distorted it sounds. Now also turn the volume up as loud as it will go on your radio and change the channel between one programme and another until you hear really loud crackling noises. Probably a better description is when you listen to music coming through massive speakers (ie at parties, concerts etc) when there is a sudden deafening, screeching noise. The sound is painful in my ear. For a second I wish I am completely deaf in both ears but then realise what I have just thought and immediately tell myself off. 

Although some of the performers are clearer than others, I've decided to take my hearing aids out. I can't hear a lot of the music now despite being fairly near the front, but I am relieved to not have the pain in my ear anymore. I am reminded of when I went to Mamma Mia a few weeks ago when I felt the vibrations of the music through the floor. Here the music is obviously loud as I can feel the strong vibrations go up my entire body. Unfortunately the difference is that I know Abba music far better than I do Aled Jones (unless he had sung "The Snowman", which he surprisingly didn't!) for example, which does help!

As you can tell, I've given up. I've got my phone out and I am writing this post for my blog.

Later in the evening, everyone starts waving their Union Jack flags (given out at the start of the evening). I realise what is being sung and quickly pick up the vibrations of "Rule Britannia" through my feet. I immediately put my hearing aids back on. I immerse myself back into the concert. Just as the orchestra stops playing, my feet reveal the "Sailor's Hornpipe", a favourite of mine which always makes me smile. 

When I was at school I was told that when writing a story, the beginning, middle and end are always the most important parts. Thankfully this evening has been that way too.

20. My Hearing Aids Complaint List ~ 9th June

I've been back to the audiologist for my post two week hearing aid appointment (actually it's been three weeks, oh well!). I went in with my little list:

• Hearing aids are falling out
• The main bit that goes behind my ears falls off when I put my sunglasses on
• I can't hear music without it screeching inside my ears
• I can't hear the other person on the end of the phone (only yesterday I phoned a friend at her work place about a business matter and as soon as she answered the phone I had to pass the phone to someone else to talk to her. If it hadn't been my friend, I would have been very embarrassed)

I was told that other than having thinner arms on my sunglasses, there's nothing else I can do. He altered the sensitivity on my hearing aids. For some of the queries he said he'd ask a colleague for further advice. I had new moulds taken of my ears (as shown below) and this time he put the horrible gunky paste deeper inside my ear so that when they are made they will be more of a snug fitting when I wear them (and hopefully not fall out anymore).

Again I left without a magical cure. I'm to go back in a couple of weeks.

19. Standing Up To The Lying Nurse ~ 27th May

I was admitted into hospital a few days ago and during the night I pressed the bell to ask the nurse for some more pain relief. The senior nurse came into my room and before I had the chance to ask her for the medication she started shouting at me.

Nurse: "Why haven't you had your medicines I left on the table?"

Me: "I didn't know they were there"

Nurse: "I told you they were there"

Me: "I know you are aware that I'm deaf, so did you make sure that I heard you?"

Nurse: "Oh er, actually I put them in your hand"

As her story started to change, I smiled and sarcastically nodded my head. With that she stormed out of the room. I had a long wait until she finally came back with my medicine and guess what? Probably with the fear of repercussions for her job, she couldn't have been any nicer to me.

18. An amazing upbeat day ~ 2nd June

It was my sisters final recital for her music degree today. I was really, really touched as on the back of the programme it said "dedicated to my amazing sister". Alright, the word 'amazing' wasn't printed but I'm sure that's what she meant to say! Why did those four words mean so much to me? I would have been honoured anyway as she could have dedicated it to another family member, a friend or not dedicated it to anyone for that matter. It was the fact that my hearing is so poor and what ever happens in the future, I will always remember that she has given me those sounds and joy. That is the biggest gift she could give me right now. As well as that she was fantastic and I am so proud of her.

Later, someone who I have never met before approached me and said they had been following my blog and how "inspirational" it is. During a difficult period of their life, writing a blog helped them focus on something positive and they couldn't have got through that dreadful period of their life without it. They said that they hoped it would help me in the same way. They ended the conversation by kindly saying two graciously used words "thank you". Again I was overcome.

17. Lipreading at the dentist ~ 9th June

Today I went to the dentist, a place which I am sure many of you dread like me. Due to getting myself apprehensive about the pneumatic digger they put in your mouth (it sounds like that anyway if I remember rightly!), I hadn't thought of anything else. When I was called into the room, I lay on the couch. I gazed up at the big, bright light above me which shone on my face. The dentist sat on his stool behind my head and started talking to me as he usually does. As you know, I am finding that learning to lip read is a big enough challenge, however trying to lipread someone who's face is above mine and looking at me the wrong way around, is virtually impossible. If that weren't hard enough, he then covered his mouth with his mask! He put a big thing in my mouth and then he and the nurse left the room. I suddenly realised that I was right in the middle of them taking an x-ray of my teeth, but thanks to my dud ears and my poor lipreading I had never heard them ask me . 

I lay in silence for the rest of the appointment, goodness knows what he was telling me through his green mask; it could have been about a new dental device or even him bungee jumping off the moon for all I know!

Thankfully I managed to avoid all forms of pneumatic drills and diggers!

16. A problem shared is a problem halved ~ 29th May

I was meant to be seeing a wonderful person today whom I am very lucky to have as a close friend. I have unexpectedly been taken in to hospital which sadly means I have had to cancel my day in London with her today.

Miranda and I met in the strangest of situations - we were both inpatients in a hospital and both extremely unwell . From the moment I met her it was as though we had been friends for life. When we do get the chance to see each other there are two things that she and I are very talented at; talking non stop and giggling! Unfortunately I don't get to see her very often, mostly thanks to her huge social diary (as everyone wants to see Miranda!) and also the little thing called studying/work! She has a heart of gold and voluntarily gives up a lot of her free time to assist Ruby Wax, particularly in her work to raise awareness and battle the stigma of mental health. We've supported each other through some difficult times and Miranda has been a huge support to me with my hearing.

Since losing my hearing, she hasn't treated me any differently. She sent me links of websites she knew I would find useful, she helped answer some of technical questions about creating a blog and she also helped promote my blog on her social networking sites when I started it. There was never any awkwardness between us as I had feared.

Miranda also writes a blog. Have a look at her blog (but remember to return to mine afterwards!) http://www.mirandabunting.com

Finally my advice to you? Everyone needs a friend called Miranda.

*Update* she has just finished university and she has passed her degree in nutrition and has achieved fantastic grades. I'm so proud of her.

15. Have you ever named a hearing aid? ~ 25th May

I've decided that I don't want to call my hearing aids 'hearing aids' anymore! What a boring name! I've already achieved the non 'Bridget Jones knickers' look, so maybe I should call them 'Mark Darcy' and 'Daniel Cleaver' - perhaps a little sticker of them should go on both my hearing aids! ...I think 'Ben and Jerry' sounds quite yummy too!

What do you think? Please contact me with other name suggestions for my hearing aids.

**********************

When a deaf person goes to court, do they still call it a 'Hearing'?

14. Does the camera ever lie?! ~ 23rd May

I'm famous, well sort of!! The Surrey Advertiser Newspaper have today printed the article about the hearing event I attended. I searched for the little paragraph and photograph of me, but it's not what I had expected. Instead, there was a big article about me along with a larger photograph than I had thought they would print. It felt as though I had stolen the article as only a few words were mentioned about the event. Of course my parents have bought about six copies (as parents do!).

13. A Tweak Here and A Tweak There ~ 21st May

The moral support came from Dad today, who took me back to the audiologist, to try and improve things with the hearing aids. However what's the point? It's never going to work, I can hear more without them. I had lost all hope that hearing aids would improve life for me and I was ready to take my frustration out on them with the help of a sledgehammer (seeing as I don't own a sledge hammer, driving my car over them would have to do)! Luckily a moment of sanity kicked in as I remembered the cost. Did you know that hearing aids can cost a few thousand pounds?...nor did I, but I do now!

The audiologist sat down at his computer and patiently started tweaking away at my hearing aids. There were a few times when he had to listen to them through a stethoscope (well, it looked like one!) but he couldn't put the ear bits of the stethoscope in his ears as the volume of my hearing aids would damage his ears. It was certainly a 'different' look having the stethoscope ear bits hanging from his cheeks (please don't get a complex Mr Audiologist!).

Everything, and I mean everything sounded so different. The sounds which I wanted to have amplified (such as voices) had either been made worse or had remained the same whilst the strangest of noises became unpleasant with some verging on unbearable. The best noise I can now hear are the birds singing again (I'm grinning from ear to ear!). The worst noise? - Toilet paper being pulled off the roll!!

12. The Dispiriting Switching On Ceremony ~ 20th May

I have spent the last "8 working days" filling up with a mixture of desperation and excitement as I wait (impatiently) for my first pair of hearing aids. I never thought I would use the words 'hearing aids' and 'excitement' in the same sentence, but needs must. I've been reminded not to get too excited as they are not a fix and they will only amplify what I can currently hear, yet I can't help it as the thought of hearing any additional sounds would be amazing. I'm waiting for the phone call to say that the appointment has been canceled or they are still waiting for the delivery.

My mum kindly took me for moral support. The audiologist produced a lovely shiny box (mind you I would have considered a dirty, rusty box or even a supermarket bag as being lovely at that point!) and I waited in anticipation for him to open it. This was the moment, the moment when he would find the box empty, discover it was the wrong order or worse still find they were beige! There they were, two purple hearing aids, much smaller than they looked in the picture and extremely light.

The audiologist put them in and around my ear to make sure the fitting was good. 

I couldn't get over how comfy they were. He started to tweak things on them via his computer. The clarity was awful, I could barely hear what he and Mum were saying. All I could hear was the noise of a train. You know the sound of when you are waiting on a platform and a train goes past you really, really fast? Well that's what I could hear and at that volume too. The audiologist and my mother wondered whether it was due to the noise of the air conditioning system or his printer. We agreed that I would go away and see how I got on.


My ears felt exhausted. *The only way I can describe that feeling, is if you imagine you are squinting because of staring at the sun, now imagine doing that all day. This would make your eyes sore, so you would stop gazing at the sun. **In the same way (without the sun!) my ears are straining to hear noises, but I can't put my sunnies on my ears!

My first step out of the door was one step too many, it was a cacophony of noise.

I went into a supermarket and I couldn't hear anyone's voices just a continuous unrecognisable, monotonous loud sound. I couldn't get out of the shop soon enough. I had been determined to wear them for the rest of the day for me to start getting used to them, however by the time I reached the car I couldn't stand them any longer and quickly pulled them out. When I got home, everyone wanted to see them so I put them in again and switched them on. The screeching noise (not the same as the whistling noise some hearing aids make) was so loud that everyone in the room immediately covered their ears in pain. It was so unbearable that I had no option but to take them off, unable to tolerate them any longer. I felt so disheartened, depressed (in the true meaning of the word), frustrated, cross with myself for allowing myself to have got so excited, cross with myself for expecting too much, let down by the audiologist for recommending them and saying how good they are and I was even cross with the manufactures for creating them.

*Safety notice: please note I am not endorsing the act of staring at the sun as that would be a ludicrous thing to do! **As for covering your ears with sunnies...!

11. The Sound Of Music ~ 17th May

The suns been out today and there wasn't a cloud in sight, hopefully that's a sign that summers on its way! I had a happy and sad moment today. We've got a blackbird in our garden and we've been watching her build her nest. My Mum was in the garden today and heard little tweets (not the social network kind!) coming from the nest. From a distance we had a a quick peep at the tiny babies. Whilst I dashed inside to grab a camera I suddenly realised that I couldn't hear them like my mum had. When I went outside again I tried listening to all the sounds around me and it then hit me that I can no longer hear any birds. I've always enjoyed listening to the dawn chorus. It's made me really sad, but I just hope I am able to memorise the sound for the rest of my life if that is possible.

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I picked up my sister from the station late last night and I had my music on a lowish volume whilst I waited. I got funny looks when the passengers off her train walked past my car, a look of disgust but I had no idea why. When she got to my car she was desperately indicating for me to turn my music down which I did before she was happy enough to open the door. I was mortified when she said she could hear my music from the other side of the platform. There I was thinking it was fairly quiet. I have decided not to play music again. The only problem is my sister is a professional singer and I want to be able to hear her beautiful voice.

I haven't been able to hear the television recently so I have now resorted to subtitles which I hate. Why put the subtitles in the middle of the picture so we cannot watch it? I can understand with live television, but with pre recorded programmes why can't the subtitle be kept up to date? It's almost a case of seeing 'Joe Bloggs' being born and by the time the subtitles mention his birth he has already died! As for the spelling, don't get me started!

I am extremely embarrassed to admit this, but it must be said..... it has only dawned on me today why I cannot hear anything whilst on the phone. Perhaps putting the phone to my right ear (the completely deaf one) isn't the most intelligent thing to do!

10. Two ticks on my bucket list ~ 15th May

I have been contacted by The Surrey Advertiser newspaper asking if they can interview me about the hearing event I went to and also know a bit about my situation. They also mentioned they want to take my photograph....oh dear! 

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I've ticked two things off my hearing bucket list today. I was taken to London to see 'Mamma Mia' at the theatre by my parents. I couldn't hear most of the talking but through some of the sounds and the vibrations of the music I was able to work out which song was being played. The other thing I've ticked off my bucket list today was clapping. I wanted to hear the noise of the audience going mad, as though they weren't physically able to clap their hands any harder and faster. In the encore my eyes started welling up, knowing that this was probably the last time I would  experience those two things again.

The production was amazing! I saw it when I was about thirteen, as an end of year class trip. That morning at school my tennis friend and I had a phone call from our coach offering us two free tickets to watch Wimbledon on centre court! Desperate to go, our school said no! It turned out however that Mamma Mia was superb and the audience were singing and dancing at the end. A very memorable day, hence why I wanted to see and hear it again. 

9. I'm Not That Old! - 9th May

I went to an event today which was amazing. It was an information and support day for people with hearing loss. There were lots of stalls, either charities showing what they do and how they can help me, another stall informing what help and support I maybe entitled to free of charge, a course my family can go on to learn ways to help me (eg ways to approach me without making me jump) and so much more. As this is so new to me it was really beneficial and the kindness of everyone was overwhelming. One lady game me her personal e.mail address because she wants me to keep her up-to-date with how I am getting on! I got to meet other deaf people. Unfortunately no one my age, but it didn't matter as there were a couple of other people who had lost their hearing at the same age as me and they too experienced/experience the same feelings or problems I have. I came away with a goody bag full of information and lots of biro's handed out from all the different stalls!

Did you know that you can get an alarm clock which has a little device you put under your pillow which vibrates when your alarm goes off? There was me thinking that as I can no longer hear my alarm clock, I could take advantage of lots of lie-ins in the mornings. I wanted to curse the manufacturer for making such a thing. There are alarms which go on doors to alert the deaf person  when someone enters the room (and therefore not giving them a fright) by a watch that vibrates. Flashing doorbells, alerting land line phones, TV amplifiers and amplified mobile phones. There are other things available but not nearly enough. The one thing which is really irritating me is the assumption that because you are deaf, you automatically have poor eyesight and you are also elderly. The mobile phone I've been looking at (which appears to be the best hard of hearing phone on the market) has ginormous buttons and on most of the websites I've seen it states that "due to its simplicity, this phone is perfect for elderly people". I'm not elderly (well, despite feeling it at times!), I have my sight and I want a phone that can do everything my current iPhone can do but which will allow me to hear the person on the other end of the line.

8. Beige Hearing Aids? No Way! - 8th May 2014

I've seen two audiologists today which means I've had two lots of hearing tests (they leave me exhausted). Both audiologists confirmed that I am now completely deaf in one ear (with one of them referring to it as being dead!) whilst I am profoundly deaf in the other. Will it get better? Unfortunately not they confirmed. It's obvious that I'll be 100% deaf sometime soon. It's not just down to the inherited condition they think I have, but the antibiotics I've been taking for the last four months which have had an ortotoxic effect, in other words even coming off the antibiotics won't make it reversible now as the damage has been done. I don't know what my doctor would think about me stopping the antibiotics immediately, but I'm afraid I don't care one iota if it means I could keep my little hearing a bit longer. No tablet tonight!

Now then girls, why do so many of us wear pretty or fun or colourful underwear? Does it make us feel better, more confident or more feminine in comparison to wearing Bridget Jones knickers, even when they are hidden away under clothing? It's taken me a while to get used to the idea of me wearing hearing aids. This is when my knicker idea came into action! Why should I hide my hearing aids due to embarrassment when I could be confident and wear them with pride? I was immediately shown a pair of beige hearing aids....absolutely not! I wanted more colour to show my personality. Purple it is (unfortunately they don't come in my favourite colour pink!)! It is highly unlikely they will be visible under my hair, but why should I wear Bridget Jones knickers? So my new hearing aids have been ordered and I should have them within ten working days! I never thought I'd hear myself say that I can't wait for a pair of hearing aids.   :)

So the cosmetics of the hearing aids is obviously of paramount importance to me, but I guess the insides are important too! Mine are like mini computers due to what they do. They have a feature where both hearing aids communicate with each other! It is so technical that I cannot begin to explain it to you (in other words I don't fully understand!). I have just sent a message to the company asking them to explain it in child language so I can understand! Unfortunately they are very big, but it's evidently because my hearing is so bad. The audiologist said they would significantly improve my quality of life for a while. They do so many things that I'll have to explain these new super powers I have, but that's for another day!

7. The Compassion of Mrs Consultant - 7th May

I'm in the waiting room waiting to see another consultant and I'm terrified. I barely slept last night and I had a nightmare about it the night before. What if she doesn't listen to me? What happens if she doesn't take it seriously? What if she asks me to go back another time for more tests and doesn't do anything today? What do I have to do to show how desperate I am...get on my knees and beg? Burst into tears? Barricade the door so she can't get out until she's done something for me? Maybe I should do all of them.

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I've just been in to see the audiologist and have the hearing tests done yet again. I am now sitting back in the waiting room as I type this, so, so scared. I don't know whether I want this other consultant to hurry up and call my name or not hear her call me at all. I'm shattered already as the hearing tests make me so tired.

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I've just come out of consultants room. One of those people who you know are being charming solely because you are a private patient and probably wouldn't be anything like it when you see her on the NHS. Anyway I had reason to be in a tis-was. For a start she asked me why it was I had come to see her! She obviously hadn't done her homework and looked at my notes! I might be wrong, but it was as though she wasn't bothered by me, just my hearing results and even then it felt like she wasn't listening to me. She said she wants me to have further tests and in the meantime she wants to get some more information from the previous hospital. She showed me her true personality when I asked how long would it be until I have the tests. In a short and unpleasant tone of voice she said "well it's going to take me a day to get all your notes". I don't know whether she was expecting me to be grateful for that and say thank you, but I didn't. I was hoping that she would say that in that case I could have the test in the next two or three days, but no "it will be at least two or three weeks" For once I actually wished that my eyes would well up to make her actually look at me and show how desperate I am to have something done. She handed me her business card on my way out whilst shaking my hand. I already have her secretary's telephone number and the address of the hospital...is she wanting me to give it to a friend or something?! It's now in the depths of my handbag and when things reach the bottom of my bag they are never to be found!

6. The Perks of Having a Deaf Spouse

A couple were staying the night at a hotel. In the middle of the night the deaf husband asked his wife to go to the car to get his heart pills. She hurried to their car, found the pills and was about to rush back to the hotel when she realised that she couldn't remember their room number. She put her hand on the horn until all the bedroom lights came on except one...."that must be our room" she said.

5. There is Always Someone Worse Off Than You

I've been feeling really sorry for myself today and do you know what? I don't care. Who said we shouldn't feel sorry for ourselves? Someone must have instilled that in me as a child although goodness knows who. I'm not suggesting that you wallow in self pity your whole life, but surely it's better to acknowledge your feelings rather than fight to put on a fake smile for the world whilst conning yourself. A psychotherapist I know described losing my hearing as a grieving process and it is important for me to treat it as any other loss. Also what's this saying about "there's always someone worse off than you"? Of course I know that there are people far, far worse off than me in the world and it's desperately sad but that's not helping me this very moment and it also doesn't help them right now.

I managed to put on a fake smile and I went out for lunch with a dear 87 year old man who isn't my uncle but I call him 'Uncle'! I can't have heard more than twenty words he said to me during the meal. I closely observed his eyes, the way his mouth moved, the fine lines on his face and his expressions, examining which expression to respond to, whether to laugh, look sad or look normal. I noticed that every time he looked down or played with the stem of his wine glass that he had finished talking about that particular topic. That was my opportunity to jump in and start my own conversation so it looked as though I was participating throughout the meal. I found the situation very upsetting. He really kindly invited me to go to Austria next year however I am fearful that I won't be able to hear him, that's if I can hear anything at all.

4. Lesson one: Lipreading and Sex - 28th April

This is the day I have been excited about since my last appointment. I have got my first lip reading class! It's also going to be the first time that I will mix with a group of deaf people. I'm excited, nervous and a little unsure. I have thought of not turning up but I know that I won't gain anything by doing so. I'm hoping that finding the place is going to be the biggest challenge!

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As it turned out, finding somewhere to park and locating the building were the hardest challenges, in fact I almost gave up and went home. Despite leaving an extra half hour to find my way, I was late and I don't do late! I walked into a large room where the lovely gentleman chairing the group said "welcome, you must be Louby". All but one chair was taken so I had to weave my way through. There's nothing like making a big entrance! 

There were 25 of us, of whom the majority were in their 70's and 80's, one lady in her 90's and then there was me at 29!

The session was divided in two, the first half was lipreading and the other half was a 'talk', not forgetting my £1's worth of tea and biscuits in the middle. The ladies were very keen on feeding me more and more and more fig rolls and custard cream biscuits...it would have been rude to have refused wouldn't it?!

I had done some research before hand and there were lots of articles stating how difficult it is to master lipreading. For goodness sake, how hard can it be? The lipreading tutor only spoke when she was explaining something or correcting us, the rest of the time she just mouthed the words. There's no start date to the course so some people were already experts and because of this the tutor was using long sentences rather than individual basic words. In silence she mouthed "I'm sorry I haven't been around for the past few weeks but I went away, came back, then I went away again and I don't even have a tan to show for it". My interpretation of that was "I ate a few tweets e.bay I sent you mail went mail again I e.bay go pour"....was I close?! "Did you tea hover at the shop today, the socks were half" was meant to be "did you see the offer at the shop today? The aubergine and sprouts were half price"....slight progression?!

She talked about different supermarkets, vegetables, fruits and a dog having puppies. When it came to parts of the body I couldn't stop giggling (it was meant to be a silent chuckle although with everyone being deaf I needn't have worried) because a man in his early eighties thought that everything she mouthed was to do with sex! "I am good at sex!" he said. We moved on to talk about brushing your teeth and washing using a flannel in the shower to which the man interrupted and said to the tutor "did you say you want to have sex with me?" We were almost crying with laughter. What I later discovered was this man was a fluent lipreader and knew jolly well what he was saying!

We were trying to work out similar words such as 'fine' and 'vine' and we also discussed some virtually impossible letters and words to read eg a phonetic 'g' sound comes from the throat rather than the lips. You try it, stand in front of a mirror, say the phonetic letter 'g', now mouth the letter without saying it. If that were someone else, would you be able to differentiate what they were saying? I suppose the word 'gargle' is a sort of example.

Will I go again? Deaf-initely!

3. Altering My Bucket List - 13th April 2014

I made a bucket list a little while ago. For those of you who do not know what a bucket list is, it's a list (mine is long!) of all the things you want to do, see, hear etc before you kick the bucket. I had great fun writing mine and I printed little pictures to match the subject. There are too many things on mine to list on here. However a few of them are: fly to Hawaii, be a living donor, write a blog and keep it up to date (I'll let you be the judge of that!), train to become a psychotherapist, take a photo every day for a year,  write a book, become a Samaritan, go to the theatre more to see lots of musicals, go on a silent retreat, watch Michael McIntyre live, take up tennis again, visit an Amish community...... the list goes on.

It's suddenly dawned on me that I don't need to go on a silent retreat anymore as everyday will be silent! (I was told a joke earlier about two deaf men in a pub signing to each other. Man 1 tells the other about him getting home really drunk last night and his wife going mad at him. Man 2 said "what did you do?" Man 1 replies "I stopped listening to her". Man 2 says "how did you manage that?" Man 1 replies "I turned off all the lights"!) There are some things on my bucket list which I won't be able to do soon; I won't be able to hear Michael McIntyre live, I won't be able to hear the musicals, I won't be able to talk to the Amish. So what am I going to do about it?

I've completed the form, clicked the "book now" button and hey presto! Mama Mia here I come in a couple of weeks! I went to see it as a class outing when I was about thirteen and I loved it so much.  Back to my bucket list, is Michael McIntyre by any chance a friend of yours who could give me a ticket?..............



Update - 1st October 2015 - I made it!! I've just been to see Michael McIntyre live at The O2 Arena! I couldn't work out what he was saying most of the time, but I still loved it! Another tick off the bucket list!

2. What if......? 11th April

I got up half an hour ago having only had an hours sleep. I feel so different compared to yesterday. I feel anxious, my heart is pounding and I feel really agitated. I think I'm scared. My mind is racing, full of questions and thoughts.

Won't I feel lonely?
Will my friends give up on me?
Will my friends still want to meet up for coffee/lunch etc or talk to me on the phone?
Will I still be able to tell if I can speak?
What will I do if I can't use the telephone?
Will I still be able to hear myself think?
Will people talk down on me as though I'm as thick as two short planks and treat me like a child?
What will I do if I can't hear a wasp (I'm anaphylactic to them)?
Will anyone love me? I will never hear his voice.
If I have a baby I won't hear the midwife announce whether it's a girl or a boy or hear it's first cry and I also won't hear the first time it says "I love you". 
How can I join in with other peoples conversations and how will I know when I can interrupt them? 
How will I be able to do my line of work? 
Will I ever be able to play the flute again?
Will my speech change?
Will my balance be effected? 
What if I never hear my parents say "I love you" to me or my Mum call me "Bunny" again?
How will I be able to hear announcements ie at the airport or on the train etc?
Will I still be able to drive?
I won't hear my consultants telling me "I'm not giving up on you" when I'm ill. 

I could carry on with this list. Some of these 'what if' questions may sound stupid and obvious to you but I need proof. Only a deaf person who could once hear can give me the proof I need to answer some of my questions. Just a slight problem....I don't know any deaf people and I am not prepared to join the deaf culture.

1. Are you a three chance person? - 10th April 2014

The first time I usually say "pardon?" Then I say "sorry, I missed that" and then I tend to make some excuse for example "I'm really sorry, but it is so noisy in here that I can barely hear you, do you mind repeating that"? That's it. Three chances and I give up. Asking them to repeat what they were saying for a third time is awkward but anything more is both embarrassing and humiliating I find.

I saw an audiologist for the first time on 3rd March this year. The hearing loss scale ranges from normal to mild to moderate to severe to profound. I had all sorts of tests done and at the end of the appointment I was told that I had mild to moderate hearing loss in both ears, I will need hearing aids by the end of the year and I have a degenerative disorder so I will go completely deaf at some point.

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It is almost five weeks since I went to my appointment. Today I have been back to the audiology department for appointment number two. I knew that my hearing had deteriorated a lot in that short space of time but....... From mild to moderate hearing loss five weeks ago, the consultant told me that it is now in between severe and profound in both ears and I will lose all my hearing from anytime now to the next two or three years. He said that I will need hearing aids now and there is some equipment available which allow me to have a better quality of life. I switched off as that was enough information for one day.

On the way home, positivity immediately kicked in. I'm so thankful it is my hearing as the thought of losing my sight is far worse, I've got all four limbs, a very loving and supportive family, some special friends and most of all I have had twenty nine years of being able to hear. What else can I ask for?