Trials and tribulations of a deaf/blind bint...!

It's been a while...

2012-01-29T15:57:00.003Z

A very long while in fact, but here I am again!

I have excuses as to why I've not been doing this blog for so long. But main and most valid one is that I've felt the most happiest and content and 'yay, life is actually quite good!' than I have in a long long long long time. I used the blog as a way of trying to sort my head out, as a way to try and make sense of what I have, as a way to talk about it without using my mouth and without crying.

Because that how it worked. I'd talk about it and I'd feel like crying, or I would cry or I'd very quickly change the subject.

From the very first post I felt like a massive weight had been lifted from my shoulders. That I am able to articulate and tell people how I felt and feel.

Don't get me wrong, I still have the times where I feel sorry for myself, where I just want to curl up in bed and never leave it and times when I still feel totally and utterly stunned.  But I don't feel like that everyday... Now I go days, weeks and months and months feeling good.

And that's probably the main reason I haven't been doing this blog, I haven't felt like there's been anything horrible, horrific or hollow to write about. So I got out of the habit of writing.

Well, I'm back now (not that anything terrible is happening!) with a sidekick! I feel like I want to carry on recording what life is, the good, the bad and the ugly!

This isn't really a proper post, it's more of a reintroduction! See y'all soon!

Guide Dogs, Part Four.

2011-01-29T15:11:00.000Z

So the next stage of the assessment was where someone completely different came out to do a walk and have a general chat with me.

It was at this point I was starting to realise what an indepth process this whole thing is/was! I hadn't even had a mere sniff of a guide dog yet and they (the people from guide dogs) have been out to see me four times, each time was a minimum of an hour and a half. I now know that this long process is good for everyone! It reassures the people at guide dogs, and gives them lots of time to find out what sort of person I am. My work life, my private life, my family, my friends, where or what I like to do for holidays it's all found out, but not in an intrusive way. It's done in such a way that you feel like you're chatting to a mate!

All this information gives them a better idea of what sort of dog would be good for me.

It was good for me, as we really talked about why I felt I needed a guide dog, how it would effect my life, (both good and maybe not so good!), and how I would most probably have to change my whole approach to life really. Talking about all these things in an open, positive, and no holds barred way helped ,e to know that this was the right path to go down.

So next, I was invited to an over night stay in a hotel in London, to meet some guide dog puppies who were fast approaching the end of their final stages of training!!

There were three other blind/visually impaired people there, eight puppies, and what seemed like thousand of trainers!! When we first got there we were shown to our rooms and told to settle in and them come down to the conference room in half an hour. I sat on the bed and thought to myself..... 'Really..... Seriously..... What on earth am I doing here?????' I was starting to have real doubts, I've NEVER had a dog before, we were a family who grew up with cats! Most of my mates have cats! What if the dog they gave me was horrid?! What if I turned into one of these mad people who let their dog 'kiss' them???

I then gave myself a shake, and thought, tonight is like a trial run, if I don't like it, I call it all off!!

I took a deep breath and walked downstairs....

Honestly, I had nothing to worry about! My fellow blindies were lovely, and like most Guide Dog Owners I've since met, were larger than life characters, intelligent beyond belief, but also very 'normal'.

So first up we were given a dog to do some basic obedience training with. I was given Josh, a very very very laid back gingery Retriever, he did pretty much what he was told to do, but there was a definate 'I'm not too impressed that YOU, who I've just met is telling ME what to do!' vibe going on!

We were then given another dog and taught how to groom it, to say that these puppies enjoy a groom is a MASSIVE understatement! The amount of tail wagging and looks of pure bliss on those faces had to be seen to be believed!!

Then I was given Josh again and we went out on a harness walk... I don't like to say it was a failure, but when the instructor says that the dog 'is taking the mick' you get a pretty good idea that this might not be the dog for you!! :)

Back to the hotel, where we had lunch and the chance to talk to a Guide Dog Owner and hear how it was, the good, the bad and the ugly! It was really useful, because she was saying that no matter how annoyed, frustrated you might get with your dog, the pro's of them far outweigh those niggles!

Then it was another harness walk with another dog (whose name I cant remember which makes me feel terrible!!), this walk was pretty uneventful, the dog did exactly as it needed to do, but there just wasn't 'that' spark!

Back at the hotel we were told that we were now going to be given a dog to look after overnight in the hotel room and that we were going to be going out on a night walk with it. Nights, dark nights for those of you who have read all of this blog will know that they are my most stressful times, especially, crowded roads at night, with streetlights here and there and cars with headlights glaring away!

So it was with mixed emotions when I was introduced to Forrester, he was totally and utterly stunning, when he came into the room I was thinking, please be for me!!! He was tall, slim, and black, and they brought him over to me! I started gushing all over him, telling him he was beautiful, whilst at the same time wondering how the hell could I trust an animal to take me for a walk and not let anything happen to me?????

Guide Dogs, Part Three

2011-01-17T15:51:00.004Z

Well..... it's been a while, and I do have my excuses.

1) I had to do some pretty intensive training with my guide dog.
2) I had to put a lot of time and effort to sorting out my work situation.
3) I started a new job!
4) It was Christmas!
5) It was New Years Eve!
6) My laptop has died a death!

Hopefully you will all understand that all the above combined made me put the blog on a bit of a back burner! I'm here now though, and fully intend to stay!

So..... Guide Dogs Part Three! From the list of excuses above, you will have probably guessed that I now have a Guide Dog! I'll try not to rush into how amazing he is just yet, and continue nicely from that post about Guide Dogs!

After the initial assessment an appointment was made for Dee to come out again for us to go out on a walk, for her to get an idea of how I walk, my pace, the sort of roads I use etc. The day came around and Dee arrived. First off we just walked down my road with her besides me chatting away to each other.

She then asked if I'd mind doing a short handle walk. This is where the assessor (Dee has a shorter version of the handle on a Guide Dogs harness, I held one end, Dee got down on her hands and knees and off we went! Naturally I'm joking, she didn't get on her hands and knees! we just carried on walking her slightly ahead of me and winding about a bit. I actually felt a bit of a plank during this bit as the road I was living on at the time was, and probably still is a busy one! But needs must, I'm pretty certain it helps to match me to a dog, and isn't just an exercise in looking a bit silly!

After about ten minutes of this and me feeling a bit smug cos Dee told me I was very good at following the harness (understandably I guess most people with some remaining sight find it hard to 'let go' of the responsibility of looking after themselves!), we then did an exercise where I stood at a cross road looking straight ahead and telling Dee when I could see the car she told me was coming. That was a real wake up call for me to be honest... It took a long time from Dee telling me, to me actually seeing it!

We then sat by the river, it was a beautiful sunny hot day and talked some more about the possibility of me getting a dog.

She told me that someone else from her office would be coming out to do another walk assessment and after that I would be invited out for an overnight stay in a hotel to meet some dogs, and to work with them.

Thats all for now folks!

Deaf.

2010-08-13T12:31:00.002+01:00

I'm going to talk a little more about the deaf side of Ushers. It's something that we, (from now on assume that 'we' means those of us with Ushers!), don't really talk about much.

So why don't we? Because we're ashamed? Because it's too big a subject to our heads around? Because we don't know how to articulate what it's like to be deaf?

I don't think so, and having spoken to others who have Ushers, Type 2 at least, I think I might have an idea why.

It's because we were born deaf. Well..... Partially deaf. The Deaf world is a funny one with the labels it gives people. But thats something I'll talk about a bit later!

So, born partially deaf, hearing aids from a very young age, speech therapy, the ability to lip read, the saying 'Sorry, I can't hear you, let me turn on the light/put on my glasses!', the ability to 'read' body language far better than hearing people, mishearing things people say and either being really embarrassed or having a right old giggle about it, ignoring people if they're just behind you..... It's endless!!

But unlike the sight, it really doesn't feel like an issue for me. Being deaf is me, it's a massive part of who I am, it's formed my charactor, my personality and I suppose my stuborn nature!

One of my favourite things to do is to listen to music without my hearing aids in. Just have the music on, and feel the music through the floor, or through the chair. It's actually really really relaxing!!

I like that I can just ignore someone irritating if I choose to, and then say 'Oh I AM sorry, didn't hear you darlin'!!'

There are bloody annoying times with the deafness..... Like those who actually tell you that you are NOT deaf, 'Hmmm, I wearing these hearing aids as a fashion statement do I???'

Or those who when you ask them to speak clearly either start shouting or just over exaggerating the way they speak. Shouting doesn't make it clearer, and taaaaaaaaaalllllllllllllkinnnnnnnnng liiiiiiiiiiiiikkkkkke thiiiiiiiiiiiiiiis certainly doesn't make it clearer!!

However, if someone were to turn around tomorrow and say 'At the flick of my wrist, I can give you hearing, proper hearing with no hearing aids!!'

I'd say straight away, with no thought 'No thanks!!'

Canadian Nuns!

2010-07-22T19:13:00.004+01:00

I thought it was about time I wrote a little something about the deafness side of Usher Syndrome. So here is a little tale from the deaf side.....!

Years ago, there was a knock at my front door, I opened it and there stood two Nuns..... It sounds like the start of a bad joke doesn't it??

I can assure you that the following really happened, I don't have the imagination required to make up something as surreal!

So... Two Nuns on my doorstop, me holding the door open with my mouth ever so slightly agape!

'We're from Canada!!' One exclaimed.

There was a slight pause and I realised that I was expected to say something,

'That's.... Nice.....!'

I continued to stare at them as they stared back at me. For me it was beginning to feel a tad akward.

See I'm not a religious person, I don't go to Church, I don't pray, I don't believe in God, Jesus, Allah, Heaven or Hell or any of the other stuff religion likes to preach.

I do celebrate Christmas, but for me that's about family, spending time with them, telling bad cracker jokes, eating with them and just enjoying each other... For me, there's no religious aspect to it at all!

As a result, I've never really had ANY interaction with any of the faiths, so to have Nuns on my doorstop really threw me off balance!!

'Erm.... Can I help you at all?'

'Yes!!' Big grins from the pair of them, 'We understand that a deaf person lives here?'

Now my mind felt like it was going to explode!! Nuns on my doorstep who knew that I lived there???!!! How the hell would they know that??? Maybe there was a God and he had told them?? Maybe I'd got this religion malarky all wrong!!

'Err..... Yeah..... That would be me.'

'Oh no,' one of them said, 'you're not deaf.'

'Pardon??' (see what I did there???)

'You're not deaf' she said, I don't think she got the irony of having to repeat what she said! 'You see, we've come over all the way from Canada to help the deaf community in the UK hear the word of the Lord.' Again two massive big grins. 'So could we speak to the deaf person? We've been learning sign language especially!'

By now I was internally feeling a little bit freaked out. It felt a bit sinister. It was dusk. There were two Nuns grinning at me almost manically demanding to speak to a deaf person and not believing it was me!

'Seriously, I'm that deaf person.....' and pointed to my hearing aids.

They looked really puzzled. 'It's just that... We were told that a deaf person lived here'.

'Yes... ME!! And WHO told you this??'

'Oh we can't tell you that.' Big grins.

WTF...... Am I on some kind of religious deaf list??

'So, you're the deaf person?'

'Yes.'

'Can we talk to you, about God and Jesus?'

I didn't want to be rude, after all they'd come all the way from Canada, and learnt sign language, so I just said,'There's not much point really, I don't believe in God, and there isn't much you could say that will change my views.'

Yet another big grin from the two of them.... 'Yes, because you're deaf and can't hear the Lords voice, and we're here to help you.'

I stared at them again..... Feeling a tad annoyed that they would say something like that to me.

And then the normal me came back, it was like I had arisen from the cave and realised what was going on!

'I find that quite an insulting statement to make actually, I'm not non-religious because I can't hear all that well. I'm a non believer because I have the intelligence to make up my own mind, and not be brainwashed into believing something that, which lets be honest, is 99.99% certain to be a myth!'

It was their turn to stare at me with their mouths hanging open. I stared back at them for a few more seconds and then quietly closed the door. Went back into the front room and sat down, 'Who was that?' asked my brother,

'A couple of Nuns' I replied.

I would like to add, that although I personally have no religious beliefs I respect the beliefs of others... I just don't like it when people, or Nuns, try to make me believe!!

Guide Dogs, Part Two.

2010-06-24T15:30:00.002+01:00

Like many people, I'd always assumed that Guide Dogs were for those who were or are completely blind. Something I would never think about as I had been told that I would always have some vision!

I couldn't but feel a bit confused when a lady I've befriended on Facebook, with the same Ushers as me and who as far as I knew had some sight, had a Guide Dog!

So I got in touch with her and was basically very nosey! Asking her what field of vision she has, at what point she was entitled to a dog, how she found having a dog, why she had decided to get one etc!!

She was really kind and answered all my questions and told me that in fact there are no criteria for getting a dog, (you have to have a visual impairment obviously!), and that she had found a new lease of life when she first got her dog!

She encouraged me to at least looking into getting a dog, and said it would change my life!!

So I spent the next few days reading the Guide Dog UK website, talking to various friends and family about it and ringing the number to make an appointment but hanging up before it had even rung! As far as I was, and am concerned, this is a MASSIVE decision. It's me saying to myself, 'right Usherchic2, you need some sort of help.' And for me..... Admitting this does NOT come easily!!

Eventually I rang, let the phone ring, let the other end answer and said while shaking like a leaf.......

'Hello, I'm calling about applying for a Guide Dog.......'

An appointment was made for someone to come out and see me, and now the ball was well and truly rolling!!!!!

I asked my brother to come along, for both moral support, and to have someone there to hear the bits I might not hear or just plain forget!

Me, my brother, the lady doing the assessment (Dee), her trainee (Dave) and his guide dog! My brother and I instantly fell in love with the dog, he came in with his big brown eyes, waited for his owner to tell him to sit down and just sat down with a massive sigh, as if to say 'thank god for that!!'

For the next three hours, we talked, about when I was diagnosed, how my life had been effected, why I felt a dog would benefit me, what a guide dog actually does, about my road, how I felt my world had become smaller, and god knows what else. Dave also spoke about his experiences, how having a dog had improved his life.

After all this they told me that I seemed like an ideal person for a dog! (EEEK!!!!!) We made a further appointment to go for a walk, so they can get an idea of the way I walk, and what kind of dog would be most suited to me.

I really like/d both of these people who came into my home and spoke to me about the life changing experience I am about to embark on.

Dee is someone who can chat for England, she obviously REALLY knows her stuff, she's sympathetic and empathises without a hint of patronisation, (I'm not sure if that's actually a word, but you get the gist!).

Dave is a man who it seems can chat for Wales! A huge presence, and bucket loads of dignity. He told me never to lose mine, as it's something no one can ever take away from me. It really struck me and I hope that I will keep hold of those words.

After they left, David and I sat on the settee, had a fag, chatted about all that had been said, and then went to get some chips!!

Guide Dogs, Part One.

2010-06-17T13:11:00.003+01:00

I'm getting one. It's a massive step for me, and a sign I think, that I'm finally realising AND accepting that I need extra help..... Those who know me will know what a big thing it is for me to think this about myself.

I'm very independent, and find it really hard to ask for help. Stubborn as well, which again, doesn't help much with the hole 'I can do it myself' attitude.

Loosing your sight takes a massive chunk of the independentness... It sometimes makes you think 'Do you know what..... I'm not going to do such and such, or go to here or there'. Because what should be an enjoyable thing, going to the pub, going to a museum, going to a party, whatever it is..... Can become stressful and totally unenjoyable before you've even got there!!

For instance, just stepping out of my front door to walk down to the train station no more than fives minutes away can be a trail. If it's really sunny, it's hard work. The glare from the sun, even when wearing sunglasses, makes it so everything becomes hazy and glarey. Think of really over exposed photo's, where everything looks really washed out and even ghost like. But add the fact its BRIGHT. The amount of people I've walked into because I've not seen them is countless! It's also embarrassing. People think you're ignorant, rude, stupid..... I'm none of those things!

When it's overcast, it's hard work. Everything becomes duller, you don't necessarily see where the curb is. Curbs and roads are quite similar in colour, and unless you intently stare at the floor, you don't always clock it/them. Stubbed toes, jarred hips and knees can be quite painful. And again, it's something I do all the time!

If it's raining, it's hard work.

If it's drizzling, it's hard work.

If it's snowing, it's hard work.

It's not only the fact that I have really limited vision in the degrees. My eyes take a few minutes to adjust from coming from outside to inside, from inside to outside, from one room to another, even getting onto a train or a bus takes my eyes a few minutes to adjust to the difference to the lighting.

There's also the fact I get bursts of white lights and black spots... You know when someone takes a picture of you with the flash on and you go 'eurgh!!!!!' I get that ALL the time! Not continuously, but it's always there, and there's no rhyme or reason as to when it'll happen either!

It's tiring... It's knackering.... It brings on migranes...

Because my brain is going at 140mph, I'm constantly scanning, the floor, to my sides, up ahead, back to the sides, the floor, the sides, up ahead, the floor and so on and so on and so on and so on and so on and so on.

Plus, I don't hear people coming up behind me. The shock of someone suddenly appearing from nowhere is massive.

Sometimes I feel like I'm on a constant adrenaline rush..... Again, its knackering!

And as I've said before, you can't see my disability, and therefore I look 'normal'. As a result, people don't make allowances for me, don't give me the space I need more than most people.

So sometimes I'll think..... 'I'm not gonna go, I'm gonna sit in and watch a DVD!'

I hate thinking like that. I hate that I might have missed out on something really fun. I hate that people might think I'm a boring fecker. And I hate that one day people might stop asking to things!!

So I'm in the process of getting a Guide Dog. I'll tell you more about that in the next instalment!

Thoughts

2010-06-14T11:45:00.005+01:00

When people find out that I have Usher Syndrome, or more importantly realise what Usher Syndrome actually is they more often than not tell me that I'm brave. Or that they couldn't imagine having to deal with it. That they would most likely not be able to carry on. That I'm an inspiration. That I must be incredibly strong. That I'm a special person. And the most odd one.... For me at least, that I must be a 'good' person.

When people say, email, text, facebook, MSN etc these to me, I find myself feeling really uncomfortable. Because I am not any of these things, not really, not especially. I'm actually a fairly ordinary, average person!

I'm not brave, I sometimes still feel like someone has punched me full whack in the tummy and winded me when I think about it. I still think to myself that it's REALLY unfair. Although I wouldn't wish this on my biggest enemy, I wish it was someone else who has it, not me. To me, this isn't brave, it isn't cowardness, but it's certainly not brave either!

I've met a young adult, not quite sixteen years old, who has Ushers Syndrome. She's brave. she puts herself out there, telling people about her Ushers, gives talks in front of numerous people and doesn't falter in getting her view of the world across!

When people say they don't think they could cope, I think to myself 'You would..... Because, well, because you have to!' You find out you've got something, you don't just give up on the world. The world, your world doesn't just fall away. It becomes different yes. But your friends are still there. Your family are still there. Music is still there. The news is still there. Ashes to Ashes is still there. Your favourite meal is still there. Dog poop on the pavement is still there. Day trips to the seaside are still there. Holidays are still there. Death is still there. Your cat is still there.

You see, the world in general doesn't change. It's still there, offering you the mundane, the amazing, the horrors, the highs, the lows, the laughs and all it has to offer. There are days when you think, 'it's crap, it's horrible, I hate it.' You wouldn't be human if you didn't, but more often than not, it's actually pretty bloody good!

Those who think I'm special, or automatically a 'good' person, couldn't be more wrong! My Mum thinks I'm special, but she'd think that regardless, she's biased, she's my Mum, it's allowed! But I'm no more special than the next person. People deal with far worst than I do. Person work far harder than I to try and make the world a better place. In that sense, I'm actually quite a selfish being!

And as for being 'good'..... Well, I was brought up well. I don't intentionally hurt people. I'm polite, I have morals and ethics, I smile at people on the street, I watch the news and feel a slight sense of despair at what goes on. But I don't actively fight a cause for the greater good, I've picked up money on the street and pocketed it, I've thought that someone deserves their rough justice for whatever it is they've done wrong!

So just because I have this condition, it doesn't make me better than the next person.

I'm flawed, simple, complexed, staintly, wrong, right, self aware, self involved, stubborn, passive, assertive and as many other opposits you can think up!

Just like you, and you..... And you, you, you, and you!

Thank you.

2010-05-14T23:33:00.006+01:00

Well.... I've not written for a few weeks, and can blame nothing other than my lax behaviour!

There's been a lot going on, and lots of exciting developments, but I'm not going to talk to about them this week, they're to be saved for the next instalment.

This week I want to pay tribute to my friends and family.

I started this as a way of talking about me and my journey through coming to grips with what I have, Ushers Syndrome. The cheapest form of therapy if you will......

Don't get me wrong, it's still all about me! But thinking about what to write, getting feedback from complete strangers and from those closest to me has made me realise that this doesn't effect just me.

Forcing myself to think about how things effect me, in turn forces me to think about how it effects those close to me.

I have an amazing group of very close, very dear friends to me. Your ability to talk absolute crap or to listen to me rant, or whinge or just listen to me be a bit down in the dumps is invaluable. I love that you keep me grounded and still moan at me about whatever's going on in your lives. Or share the exciting things that are going on. To not let what I have define me, to accept that it's a part of who I am, that I am still who I was before I found out about Ushers.

In no particular order, Jayne, Jo, Luke, Claire, Whitney, Mike, Stephan, Nisha, Agi, Elly, thank you for being the best a gal could ask for from friends!

My oldest friend..... Who probably knows me better than I know myself... Sam, thank you for letting me cry on your shoulder, for making me laugh, for getting me inexcusably drunk when I need it most, for letting me bare my deepest darkest thoughts and never judging me and for never letting me feel too sorry for myself!

My family.....My Nana, who will probably never read this, for her undying belief that at some point there will be a cure and for constantly worrying about me walking or being out in the dark!

My Aunt, for all those lunches or general meets for no reason what so ever and who has an unshakable belief that I'm going to fine come what may.

My Uncle, Pete, my fellow drinker in the family :-D who has listened in an amazing way for someone who talks so much! My strongest older male role model. Pete, I don't, and haven't for many years thought of you as my Aunts husband. You're MY Uncle!

And then the two most important people.... My Mum, Trish, and my brother David. I don't think I can ever put into words how much your love and support over the past few years has meant to me. I've kicked out at you two emotionally. I've cried at you two. I've laughed with you two. I've sat in silence with you two. I've leant on you two. You two have listened to me. You two have just been there. I've taken so much more from you two than I've ever given. And you two have never complained, never got narky, never told me to feck off and most importantly have silently been there for me.

David, you're a gentleman, a gentle soul and someone I try to be like most of the time..... Annoying at times, but I guess that's a little brothers duty eh???

Mum, you're the best Mum in the world.... I honestly don't think there is any other way of putting it. You're selfless, kind and beautiful inside and out!

I guess the whole point of this is.... I find it hard to say in person, and I know I do not say thank you.

So, to all of you.......

Thank you.

Humiliation.

2010-04-19T11:24:00.003+01:00

I wasn't going to write about this, but have decided I will as I told myself I would be as open and honest about Ushers as I can be.

And now I've decided to write about it I have to do so now so I don't lose the nerve/bottle at a later date!

Yesterday morning I was waiting for a bus to get to work. The sun was really bright and despite having my sunglasses on the glare was glaring in a glary manner! Now, for those who don't have or know about Ushers, sun glare can be a right pain in the jacksie. You know those really over exposed photo's, it's a bit like that. plus my eyes water a lot when it's like that, so I have to contend with the blur that watery eyes give as well.

The bus came, the doors opened and I went to step on.

Before my foot hit the deck someone, a man, barged into me so HE could get on before me.

Because at that precise moment I was on one leg it knocked me sideways. My shoulder hit the side of the bus. I stacked and ended up on the road between the bus and the curb.

The man spun around and started shouting at me!

Apparently I should have been looking where I was going. I was taking the piss. I was making it far worst than it actually was. I was trying to make him look bad. I was a fool. I was f*cking waster. It was all my fault.

He then went and sat down.

The bus driver didn't anything other than look at me.

Behind me a group of teenagers were laughing.

No one asked me if I was ok. No one helped me up. I got up and walked away.....

I have never been so humiliated in my whole life. I have never felt so ashamed to be me. I have never felt quite as vulnerable as I did then.

So much so I didn't tell anyone at work once I got there. I didn't tell any of my family that evening.

No one wants to admit this sort of thing happens to them. But I am going to admit to it, because it takes a fair bit of bottle to do so, and I reckon I got that bottle!!

Buses and trains.

2010-04-14T12:19:00.005+01:00

I recently had cause to think and write about trains, it's not as geeky as it sounds.... And I'm not a closet train spotter..... Honest!!

And it got me to thinking about public transport in general. And how much of a pain it can be.

A train journey can be a stressful experience at the best of times for most. Overcrowding, delays, cancelations and last minute platform changes can make the most patient of people lose their rag! Throw into the mix a duel sensory loss such as deaf/blindness and suddenly it’s an absolute minefield!

Announcements over the tannoys can be difficult or impossible to hear, especially when train announcers seemingly specialise in white noise and mumbling!

It can be disconcerting when everyone on the platform suddenly runs, jogs, hops, skips, barges and elbow their way to another platform as if they have received a telepathic message that you have somehow missed out on. The boards show no changes, your train shows no signs of appearing, you know the train you're waiting for is the last one of the night OR the one just before the massive crush of rush hour..... So you make the decision to find someone who might be able to help you!

You stride down the platform looking frantically left and right looking for the man or woman in a blue coat with yellow trim, and they're nowhere to be seen! You reach the barrier and there's no bugger there either! So you end up hanging around, either totally on your tod, or with thousands of people pushing pass you to get to where they want to be. It's stressful..... Sometimes it makes you panic a bit cos you feel like you have no control what so ever. Eventually you find someone and ask what has happened to your train,

‘There was an announcement’ you are told brusquely,

‘Yeah, I didn’t hear it though because –‘ you start, but before you have a chance to finish you're told

‘You should have listened to the announcement, you’ll have to go back to the main station to see when the next train is.’

You try again to explain you didn’t hear the announcement, and that going back to the main station could be very difficult, as you are also blind.... Deaf/blind in fact..... But you're just met with a blank gormless face and a shrug of the shoulders.

Buses are just as bad. You get on, pay your fare, settle down with a book only for the bus to stop two stops later and about 15 stops before yours, with the whole bus filing off!

When you ask what's going on, more often than not you're told the next one will be along in a bit..... And of course you can't get on that one cos everyone bundles in front of you, shoves you out of the way and when you FINALLY get to the door it shuts because not a single other person could possibly squeeze on!

Bat in the shower!

2010-04-07T21:28:00.005+01:00

A few years ago I worked in Wales. It was absolutely gorgeous! The building was a 400 year old farmhouse and set in the middle of farmland, at the foot of Pen y Fan.

There was only one spot where I could get mobile phone reception, right slap bang in the centre of a window sill, and only if I balanced the phone on it's side! Other than that if I want to make a call or send a text I had to go for a little ten minute walk!

I had a bike, and it took about 15 mins to ride into the local village, and about an hour and half to ride back up the steep hill back!

Buses came by on the hour every hour, but there was no bus stop near by so you stood on the edge of the road and waved like a lunatic to get them to stop and pick you up! And, once you sat down someone would always start a chat with you. Bare in mind, I'm a London girl born and bred and the first few times that happened I was a tad weirded out!!

I lived and worked with two other people, and obviously all the people that came to stay, but it was myself, Cheese and Beef who were the main people there!

Sometimes because of the way days off fell, we would be there all on our lonesome, and not have any guests because it would have been silly!

I can honestly say there was only one time when I was terrified....... It wasn't the time I was in the building on my own for a couple of nights and a lone man came and tried to convince me to let him stay, calling through the windows

'Cooooome out, I promise I wont hurt you!!!'

Yeah mate, I've watched those horror films where the girl on her own lets the man in because he's cold, tired, hungry and only wants to sleep, and then he rips out her intestines with his bare hands!!

It wasn't the time when I'd gone on a little walk and after half hour of walking sprained my ankle and thought that there was no way I'd be able to get back.

And it wasn't the time when there was the biggest storm I'd ever seen, heard or felt in my entire life!

No....... It was the time when I was naked, in the shower and discovered that there was a bat in there with me!!!!!

How on earth did this happen I hear you ask?! Well..... I will tell you!

The barn that was adjacent to the farmhouse has just been converted, so me and Beef had been moved in there, very nice, bigger room and a nice new shower room.

We'd been there a few days and had settled in, and so far there were no mishaps at all. I had reached the end of a morning shift and toddled back to have a shower and then laze around because it was raining and I didn't fancy schlepping around the mountains!

So I went into the shower room, got undressed, took out my hearing aids, took off my glasses and put on my shower cap.

In I stepped and turned on the water, wishy washy washy wishy..... I turned round and glanced down.

'What the.......???' On my shampoo bottle there was a big brown lump! I couldn't see it properly as I didn't have my glasses on. My immediate thought was

'OH MY GOD............!!!!! Beef has poohed on my shampoo bottle!!!!!'

I have no idea WHY I thought Beef would do that, he hadn't done anything previously to make me think that he would, but..... It was my first thought and I felt disgusted and violated!!!

I then thought to myself, not only would Beef NOT do such a thing, but there was no smell so it couldn't be a pooh!!!

So, I crouched down to get a proper look at whatever it was, having not the foggiest as to what it could be! I leaned in closer, I didn't want to touch whatever it was until I knew what it was! I leaned in closer still when all of a sudden.....

It stretched out it's arms/wings, reared back, pulled back it's mouth and showed me fangs the size of tombstones (but much sharper!), snarled at me in a menacing manner and clawed in my general direction!

A BAT!!!!! A GREAT BIG BLOODY BAT THE SIZE OF A HORSE IN THE SHOWER WITH ME!!!!!

I screamed.....

'AAAAAAAARRRRRRGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!' It was a high pitched, blood curdling, terrified scream of a London bint who had only ever seen bats on nature programs before.

I leapt out of the shower, grabbed a towel as I ran out of the shower room, slammed the door shut, ran into my room, got my key, ran back and locked the door shut!!!

I then ran out of the building in just a towel and shower cap and ran sans glasses to the other building where Beef was! Barefooted and not really able to see I stubbed my toe, fell over in pain and cut my knee.

So when I burst into the reception area I gave everyone a shock, and by everyone I mean Beef and the group of about ten ramblers who were booking in for the night!

There I was, in a towel, with a shower cap on, bloody knee, hopping because my toe really hurt, screaming far louder than I would have normally screamed because I didn't have my aids in

'THERE'S A MASSIVE BAT IN THE SHOWER!!!!! IT TRIED TO BITE ME!!!!! HHHHHEEEEELLLLPPPP!!!!!! SORT IT OUT!!!!!!!!!'

And of course, because I was slightly panicked, my saaarf east lahndahn accent was coming out far stronger than it normally does!

AND I was just screaming this in the general direction of the people because I couldn't SEE Beef!

The group of ramblers must have wondered what on earth they'd let themselves in for, and if the local mental hospital had had an escapee in the past few hours!!!

I went running through reception to the back and sent Beef to sort it out.

Of course it wasn't all that big, or scary looking, it was according to Beef quite cute and no bigger than a jam jar lid.....!

Sheep pretending to be snakes.

2010-03-25T02:44:00.006Z

I have a friend who, whenever I'm in her company we seem to end up having some kind of adventure.

I shall call her Cheese, she knows why I'm calling her Cheese, it's a long story, but is not related to her feet at all! She really hasn't got cheesey feet!

Anyhoo..... I digress! Adventures..... More often than not rather strange ones! And more often than not, they're 'mishaps'!! Sometimes, occasionally, perhaps booze is involved..... Sometimes booze isn't!

We decided to go and explore another part of Wales one day because our days off had fallen at the same time.

So we packed our toothbrushes, some pants and a few CD's to play in the car. Sat in the car and pulled out a map. I closed my eyes pointed to somewhere on the map and our destination was a place called Milford Haven, so off we went!

We were pootling away, music blasting, windows wide open cos the weather was gorgeous and beeping and waving at good looking men, and sometimes at OAP men for a giggle!

We got to the local YHA there, sorted out our accommodation and set off on the half hour or so walk to the village to have food and a drink or two!

Fast forwards to after dinner, we decided that we should buy some vodka and go and drink it on the beach because it really was a beautiful day/evening.

We spent a few hours there, drinking, paddling, getting to know the local teenagers that were there. Then it started to get dark....

'We'd better not go back along the road' said I, 'for we are sure to be knocked over and killed by all the speeding cars!'

'You're right' agreed Cheese, 'We should walk back along the coastal path, no matter that you wont be able to see in a few minutes, or the fact we've been drinking, it's the safest and most sensible thing we could do!'

So off we went, the coastal path was a maxium of six inches from the edge of the cliff and there was no fence or wall or anything that might have prevented us from toppling down to the sea if we fell!

Cheese walked in front in order to guide me, tell me when there was a bump, an upwards bit, a downwards bit, a crumbly bit etc etc etc!

She was wearing a light coloured top so I was able to see a very faint block of grey to also help guide me on my way.

We had walked no more than ten minutes when Cheese suddenly fell to the floor, giggling like a mad woman and saying 'I can see, you can't and I've fallen over!'

Hmm..... Suddenly risking the roads seemed like a far wiser idea! I sat down and said

'I'm not moving, I'm staying here! If we carry on we'll fall in the sea!!!'

Cheese was still giggling like a demented woman, and eventually I started giggling too!

Cheese pulled herself together and said 'We should climb this tall fence and walk across the fields, that way at least we wont fall in the sea!'

So over we climbed and started to walk through the fields.

Now as you should all know by now, I can't see in the dark, at all. So I've got a hand on Cheeses arm to prevent me falling over. I wear hearing aids and so can hear fairly well with them in.

We had been walking for a while when I was suddenly aware of hissing noises...

HISSSSSSSSSSSSSSS............. PISHHHHHHHHHHH........... HIIIIIIIISSSSSSSSSSS

'Cheese, Are there snakes in Wales?????'

'Dunno, why?!'

'Can't you hear them...........???'

Cheese stopped suddenly, 'Hear the snakes??? What are you about?????'

By now my heart was starting to pound a little faster and my fear levels were verging on panic mode. 'There!!! Didn't you hear it??? That hissing noise!! It's a sodding snake field!!!!'

Once again, Cheese started giggling like a demented woman, 'You can't see them can you??? It's the sheep weeing whenever we go past them!!!'

'WHAT??? What the hell are you on about??'

Giggle giggle giggle giggle giggle.......

'When we walk by them they either get up and run away or get up and do a wee!!!!'

'Oh......'

Photography

2010-03-24T21:41:00.004Z

I like it I do..... I would go as far as saying I love it! I wouldn't go as far as saying I'm obsessed with it. I'm not a geek with it, I don't have an indepth knowledge of shutter speeds, lighting, frames and all that whatnot!

I have a camera that I'm ever so slightly in love with, and a couple of lens to play around with. And there's nothing I love more than going for a walk and pottering around, snapping away and sometimes getting some reasonably good shots!

Some say I'm a little too trigger happy, but my view is that for every decent picture you take, there are going to be at least ten - twenty appalling pictures!

Not only do I love taking pictures, I adore looking at other peoples stuff, professional photographers work, people at the same level as me, I can easily while away hours nosing through flickr if I'm not careful!

I own an obscene amount of photography books, they're my 'porn' if you like!!

When I was first diagnosed with Ushers one of my biggest fears was that one day I wouldn't be able to look at others photography, or carry on doing photography myself.

It was such a horrible and wretched feeling, that one of my main passions in life might be wrenched away from me. Through no fault or doing of my own.

Thankfully though, it's not going to happen.....

And....... I've discovered another reason to love photography.

You see, my camera lens' field of vision is FAR wider than mine. Even when taking the shot, I see only what I see.

And it's not until I get home and upload the pictures to my computer, that I see what I don't see.

So while photography, for many is a record of what they've seen or memories of an event, for me it can be an intriguing mystery.....

Who is that old man waving at with a massive grin on his face.

What made the toddler screw up her face and cry.

How comes I didn't see the tree with a squirrel running half way up with what looks like a sandwich in it's mouth???

The couple I didn't see, and who obviously didn't see me as they only have eyes for each other.

My favourite shop with MASSIVE sale signs..... (and by the time I went back to take advantage of the sale, had closed down!)

The stunning building, church, cloud formations, graffiti.....

I have to say though, that there are advantages to a limited field of vision with photography too.

Because I'm so focused on 'my' subject, I don't get distracted by mundane bits and bobs surrounding it.

I've recently had a few ideas for photography projects, all related to my Ushers, I shall keep you posted. You never know, they might end up being shown somewhere!

Short and sweet this week folks, I had a real struggle with not procrastinating, and the internet played silly buggers for quite some time last night!!!

Ouch!

2010-03-18T01:02:00.004Z

I don't make a sound when I have fall, or trip, or bash my shins or stub my toes on something, or burn myself.

I don't scream, shout, yell, wail, swear, groan, moan or make any other noises of pain.

I just take a sharp intake of breath.

I've walked slap bang into a tree, and just took a sharp intake of breath.

I've stubbed my little toe so hard I pretty much ripped the whole nail off, and just took a sharp intake of breath.

I've burnt myself on an oven, and just took a sharp intake of breath.

I've reached to grab the banister at the top of the stairs at my Mum's house, missed it and went flying over, and fell about ten feet to the floor kicking out some of the rails and very nearly missed landing on a friend, but fortunately(?) missed them and crashed to the wooden floor, and just took a sharp intake of breath.

I've whacked my head on shelves, door frames, getting into cars, handles and god knows what else, and just took a sharp intake of breath.

I've been on many walks, fallen down little rabbit holes, turned my ankle and just taken a sharp intake of breath.

I've had tree's jam their twiggy branches in my eyes, and bizarrely up my nose, and just taken a sharp intake of breath.

I've walked straight into so many low walls, barriers and bollards, and just taken a sharp intake of breath.

I've tripped over curbs, wonky pavements and even litter, and just taken a sharp intake of breath.

I've tumbled down a flight of concrete stairs and just taken a sharp intake of breath.

It's not because I'm tough as old boots and don't feel any pain from what happens, far from it... I actually have one of the lowest thresh holds to pain ever.

It's shame! Think about how mortified you are when you fall over, how you hope no one's seen you and you leap back up and carry on as if it didn't actually happen!

I suppose..... I've subconsciously trained myself not to make a sound so as not to draw attention to what I've done. Because then, I don't have to explain to random strangers '

I'm not clumsy, I'm not a pleb, I'm partially blind'

'Yeah I know I don't have a stick or a dog...... But I am!'

Most of the time it works. But sometimes, the mishap that has befallen on me is too big to pretend it didn't happen. The looks of shock, and awed

'Didn't it hurt???'

'Yes it frickin' did!!!!!'

'But you never made a noise!!!!!!!'

I'm lucky, so far (touch wood), I've not had a serious injury as a result of all that stuff..... Bruises, grazes and bumps for the most part.

And I'd love to say that these tend to happen mostly in the dark, where I can honestly not see a thing!

But........ A lot happens in broad daylight.

Old Ladies

2010-03-03T16:35:00.007Z

There are many dangers and fears in this world today, dangers to ourselves, people around us and society as a whole.

We hear on a daily basis how yoofs are becoming more and more feral and involved with gangs, knives, guns and drugs.

About the next big virus that might or might not wipe out entire populations, think bird flu, swine flu and mad cow disease!

We are in a time at the moment where unemployment is at an all time high.

We are told NEVER to throw out ANYTHING with personal details on them as otherwise your identity will be nicked.

Terrorists causing death and destruction.

Young men and women, dying out in conflict zones (as apparently it's NOT a war!). Or those young men and women coming home with missing limbs or damaged minds.

The media scaremongering us that the country is full to the brim and we can't possibly have any more people come here.

That the police are both over zealous, and don't do enough to keep us safe.

Our politicians are liars thieves and rotten scoundrels.

Then there are the more personal fears and dangers.....

Will we be happy, healthy, loved, will we be mugged for looking at someone the wrong way, fears of flying or enclosed spaces.

There are many more of course, and each person will have different fears, different dangers which the next person might not even consider to be an issue!

The other day I discovered the biggest danger to my own personal safety.....

It's little old ladies..... With grey or white permed hair..... Who for the most part look harmless and sweet as pie.

Put them in a supermarket though, in the day time when they quite simply over run the place they are my nightmare!!!!!

They dart about with those little old lady trollies with a basket on top, and suddenly stop for no apparent reason!!! Or they walk really slow and then suddenly sprint off in zig zags. They tend to be short! And I'm actually rather tall, so whilst walking around a shop looking for the eggs, if one of these short old dears stops I have to stop adruptly, usually because I've clocked them right at the last nanosecond!

My biggest fear is I will simply not see one one day and send her toppling to the floor and cause a broken hip!!!

And because they're seemingly sweet looking short old ladies, and I'm a tall not obviously blind 'youngster' I'd probably be run out of town and lynched!!!!!

They're like my cat, lovely for the most part, but also a danger that I'm going to tread on them!!!

So I'm not going to go food shopping in the mornings EVER again! It stressed me out and I don't like that!

Conversations with a bag!

2010-02-25T12:03:00.002Z

Firstly, I want to say that although I do read the comments placed at the ends of each blog, I'm not entirely sure how to reply to them! I'm not being rude and ignoring you..... Honest Guv!!

Today I'm going to refer to people as animals, I don't know why, it's something that's tickled my fancy today!

I thought today I would tell the tale of how I ended up having a conversation with a bag.....!

A good friend of mine, Lion, is known for his garden parties, they tend to be on bonfire night, and for his birthday. They're big affairs, big garden, lots of people, food, bonfire, drink and lots of people!

A few years ago he held one of his said garden parties for his birthday, it was the height of summer and so didn't start getting dark until quite late.

I turned up with bottle in hand, made a slight dent in the food table and did some mingling, some laughing, some drinking, and most importantly worked out where I was going to pop myself down once it had got dark!

Anyhoo, I was back at the food table to talking to a friend, Chimp, when she said 'Ooooh, this lasagne is well nice!'

Now those that know me know that sometimes I'm not the most tactful of people, I like to blame this on the fact I don't see so well, or hear so well, and therefore sometimes say things I wouldn't normally say!

'Nice???' I spluttered, 'Badger made it, and she's obviously never heard of seasoning her food, its one of the blandest things I've eaten in ages!!!'

Chimp looked mortified and pointed with her eyebrows and made a oddly contorted face,

'What??' said I, Chimp started jerking her head ever so slightly and I turned around, Badger was stood there and looked really upset.

'Oh....... Badger!' I said, 'I'm really sorry! I didn't realise you were standing there, I'm really sorry, but I just really like strong flavours in my food!'

'That's OK' she simpered and I quickly wandered off elsewhere!

By this time it had started to get dark, I decided that a quick loo visit was in order and so scarpered off to the toilet, came back and plonked myself down on one of the rugs and got chatting to the people around me.

By now, it was dark, there lamps around, and the bonfire was burning away, but for someone with Ushers they're about as much use as a chocolate teapot!

I needed the loo again, 'Bugger.......'

The people sitting around me were people I knew, but not anyone I felt I knew well enough to say 'Will you take me to the toilet please?' It's not the sort of thing you want to say to random people, it makes you feel like a pleb!

Sod it I thought, I'll go by myself, what's the worst that can happen.....??? Well, lots of things can happen but you block that sort of thing from your mind!!

So I stood up and gathered my coat and bag with me, as I knew there'd be NO WAY I'd find my way back to them! and headed off towards the house.

As I got away from the general throng of people I stepped on what I thought was someone's foot.

'Oh sorry mate, didn't see you down there!' I looked and saw a foot, a leg and the body shape of a person, 'are you having a good time??'

No response....

'Bit rude!' I muttered to myself, and then 'Excuse me, did you hear me, I asked if you're having a good night??'

Again, no response..... I bent down to poke them and to make sure they were OK,

'Hey, are you alright mate?' and shook the leg......

The leg was a pile of coats, the foot was a bag, the body was a bush!

'For f*cks sake!!!!' I stood up, hoped no one had seen me or heard me trying to have a conversation with a bag and some coats and high tailed it into the house!

The confirmation

2010-02-18T12:40:00.004Z

I had been diagnosed with Ushers at my local hospital, and was now waiting an appointment at a specialist eye hospital. This was so they could confirm that I do indeed have Ushers and to become a part of the 'system', and so that I can have my check ups and keep an eye on the progress the Ushers makes in fecking my eyes up even more!

There wasn't that long a wait for the specialist appointment, but it felt like forever. After the initial diagnosis, I did a bad bad bad bad thing! I googled it.....! I Youtubed it........! I Wikipedia'd it........! Strong word of advice, if you ever find you're in the situation where you've been told you have something you've never heard of, DO NOT do what I did, I can assure you that only the worst cases will come up.

The ones that tell you you will be blind within days, that there is no cure, that life as you know it will never be the same, that you will become a useless, unhelpful member of society, that you'll become a burden, not only on your family but on your friends, your work place, the transport system yadda yadda yadda!

So armed with this information, I had a pretty bleak outlook on what my future was going to be.

I didn't go back to work, it was a job where the contract ran out a few months later and I just thought, 'Sod it, I'm going to go blind!'

I took a real sadistic pleasure in the reaction from people when I told them.

The looks of shock on peoples faces when they asked 'How's things?' and my reply was 'I've been told I'm going to go blind!' was priceless..... It was also really cruel of me, and to those that got the brunt of that, I'm sorry.

I also pushed people away, and wouldn't let them be a friend, be a Mum, be a Nana, a brother, an Aunt, an Uncle. I didn't want to think about it, and I didn't want to see the impact it also had on those who care about me.

People would tell me about people they knew of who had Ushers, and I would think 'I don't f*cking care!'

They would tell me about something they'd read about medical research, and again, I would think 'I don't f*cking care!'

I hated that people felt sorry for me, I hated that people were trying to help me and I hated that suddenly Ushers was me.

For a few days after the diagnosis I had a vague and totally irrational sense of resentment towards my Mum. If she hadn't made me go to the Doctors, I wouldn't have gone to the spec's shop, I then wouldn't have gone hospital where I was told I had this sh*tty, b*llocksy thing! If you don't know you've got something, then you haven't actually got it..... Right???

I only felt that for a few days though, and as I said, it was a totally irrational thought, and even when I was thinking it, there was another part of me that thought, 'You're being a tool!!!!!'

Anyway, the appointment at the specialist eye hospital cam around, I went with my Mum, and the letter that informed me I shouldn't operate heavy machinery for the rest of the day. I had a full day of eye tests. Staring straight ahead in a dark box frantically looking for the pinpoints of light in a desperate attempt to make the results better. Having drops put in my eyes to make the iris' open wide so they could get a proper look at the 'hooks' and 'cones' at the back of my eyes. Walking from one room to another to do this and that.

And then going home, clutching my Mum's arm so as not to fall over from the blurred vision, and berating internally the fact I hadn't brought any sunnies with me. When your iris' are so wide open the glare from light is a horrible pain.

A week or two later we went back to get the results, I had yet more drops put in my eyes and then went through to meet Mr. Eye Man.

He said that I do indeed have Ushers, and went on to explain that fully sighted people have 180degrees of vision, I had 10degrees.

He asked about family history and my Mum said that her Grannie had had sight problems, but that it was thought this was due to diabeties, Mr. Eye Man said that it was highly probable that Grannie had had Ushers/RP as this is a genetic disorder.

He said there was no way of telling how slowly or quickly my sight would deteriate, it could be as little as five years or as long as 20 years.

He said that there was no cure for this now, but there was research going on..... But that any research that might benefit me, probably wouldn't be available for another 30-40 years.

He asked if I drove, when I said no, he said 'That's good, I suggest you don't learn. Not only will you be a danger to yourself, you'll be a danger to others.' Up until that point, I'd had no desire to learn, but of course, now I was being told I can't/shouldn't it's the ONE thing I'd love to be able to do!

My Mum at that point then piped up with 'What about cycling???'

'Ooooh no, I wouldn't do that either!' You git I thought!

He also told me that I would never completely lose my sight! I would always be able to read a book! At that moment I could have leapt across and snogged him then and there!

Other stuff was said, but that's the stuff I remember, the important stuff.

Mum and I left and went to have some cake and tea.....

I headbutted a man in bed.....

2010-02-11T23:50:00.006Z

Today I thought I would tell a story that I haven't yet told anyone. Partly because it makes me cringe massively when I think about it, and partly because it's difficult to tell a story where you've physically harmed someone else and not snigger without coming across as a bit of a nasty piece of work!

So, I had been dating this man for a few weeks, we'll call him Mr. Numbers, he worked in the City in something to do with numbers. I'll be honest, whenever he spoke of his work after a few minutes 'selective' deafness came into play and I didn't pay any attention!

Mr. Numbers, apart from having a very dull sounding job was a very nice gent indeed, funny, articulate, well mannered, intelligent and easy on the eye! We had been out for a few drinks in London Bridge and gone on for a meal just off of Covent Garden (it's an amazing place, it looks and feels like the sort of place where Russian gangsters might hang out..... But that's another story!).

It had been a really nice evening, nothing amazing happened, but sometimes those are the best nights out I find.

We came back to mine, watched some T.V, and had a nightcap, and went to bed.

Because this isn't THAT type of blog the next bit is CENSORED.

So, we fell asleep, and I have to say usually once I'm asleep noise doesn't wake me, movements and vibrations from noise wakes me. So to all you snorers out there, know this, just because you are in bed with a deaf person, does not mean they wont be disturbed by your nocturnal rasps! I would say we are more disturbed because it's not just a sound..... It's the whole bed gently shaking!

Anyway, as I was saying, I had fallen asleep and at this point I wasn't used to sharing my bed again.

When you can't see in the dark, or hear because your aids are on the bedside table, your other senses kick in, you can just 'feel' when something doesn't seem quite right.

I woke up suddenly and could 'feel' something leaning over me, I sat bolt upright and

TWAAAAACK

'F!ck! F!cking f!ck!!!!' Mr. Numbers yelled, loud enough for me to hear exactly what he was yelling!

I scrambled for the lamp, turned it on quickly, stuck my hearing aids in my ears, turned around and saw Mr. Numbers clutching his nose with blood dripping out from through his fingers.

The first words to exit my mouth, not 'I'm sorry!' not 'oh my god! Are you ok??' but

'My sheets!!!' I did instantly change my tact, and rush to the bathroom and get him tissues, some neurofen, gave him lots of sympathy and didn't mention my sheets again, at all, not once..... Although I was thinking about them!

Turned out he had leant over to get a drink of water from my bedside table and instead had got a bloody nose!

He was very understanding about it, far more so than I would have been if the situation had been reversed I'm sure! We did carry on dating for a few more months, but it just fizzled out in the end, that's what I tell myself anyway, nothing to do with the ABH I inflicted on him!

Moral of the story, if you're dating a deaf/blind person, make sure you have water on your side of the bed!

It's a short one this week folks, I've been busy and in a good mood and not wanting to think too much about the depressing times!

How I would describe Usher Syndrome.

2010-02-03T15:17:00.011Z

Firstly, I'd just like to say, I'm totally and utterly gobsmacked at the response to this blog so far! To have total strangers say that it's good implies that it might well be worth carrying on! (People I know have said it too, but you always wonder if they're just being kind!)

Secondly, big thanks to my two spelling nazi's! You know who you are, and although there were just TWO mistakes I'm so glad you pointed them out!

So, I've told you the tale of how I got diagnosed with Usher Syndrome, and thought before I carry on with the next part of the story I should tell people what it actually is.

I'm going to focus on Usher Syndrome Type 2, because thats what it is that I have, and I am talking about me..... Me, me, me, me, me, me, ME!

There are two ways of explaining what Ushers is, there's the medical way, and then there's my way. I'll start off with the medical way... Well, I'll cut and paste the description from the Sense website!

Usher syndrome Type 2

People with Usher 2 are born with a partial hearing loss and then develop a visual impairment called Retinitis Pigmentosa (RP) in their teens. This may not be diagnosed until their early twenties or even much later.

What does this mean?

People are born with a moderate to severe hearing loss which often remains stable throughout their life and is generally helped by hearing aids. Problems with vision are first noticed at night followed by increasing difficulty with side or peripheral vision. At times this may lead to bumping into or falling over people and objects. People may notice difficulty moving into bright light from a darker place or vice versa. However, they may have adapted to these changes already, particularly in familiar situations.

What does the future hold?

In most cases people retain good reading vision well into middle age. There is no treatment available for Usher at the moment. Research is taking place in a number of universities in Europe and the USA, which is looking into the types of Usher, the genes that are involved and what messages the genes are passing to the cells. However, much can be done to help people make the best use of their vision and hearing.

Communication

Most people with Usher type 2 will be born with a partial hearing loss and so will probably use speech and lipreading in addition to a hearing aid to communicate. In many cases, attending mainstream school means that they are likely to feel part of the hearing rather than the deaf world.

So there you go, the rather glib, and unemotional description of Usher Syndrome, and to be honest, the kind of reply I usually give to people when they ask me about it and what it is. It's easier than getting all deep and sometimes a little teary in the middle of a pub!

Now here's my way of explaining what it is.....

It's a pain in the arse and I hate it...........!

Hate it, hate it, hate it!!!

There are, as far as I can see (that was an intentional pun by the way!), no sodding benefits to it at all! Not like there are with the deafness, if I fancy some time out from the world I take my hearing aids out and can have a whole day with no interruptions. I wont hear the front door, I wont hear the phone, I wont hear the sound of police cars screaming past my house, I wont hear the kids in the garden down below. It's just peace and quiet! And as soon as I want back in the normal world, in go the aids and I'm back!

I HATE being partially sighted.

I HATE not seeing in the dark.

I HATE not seeing things just outside my field of vision, when my field of vision is so bloody narrow.

And I HATE the fact it's an 'invisible' disability, so that people who don't know me or just don't know about the Ushers think I'm thick as two short planks! People are in general far more sympathetic to things they can see..... A wheelchair, a long white stick, walking sticks.....

But when they can't see why someone walks slap bang into a low wall, or when they ask 'How are you?' the reply they get is 'No thanks I just had a cuppa' the assumption, more often than not, is 'Hmmm..... Bit simple that one!'

It does make me an interesting and slightly eccentric person to know apparently, as conversations can go off on random tangents, walks can suddenly become far more dramatic as I fall down rabbit holes and twist an ankle!

I've found since the diagnosis, that I'm actually far more aware of the things I don't see. You learn, fast, to know your way around places, your home, your road, your families home, your friends homes, the places you go to often. You even learn to remember when there's a mess, so that when you wake up in the middle of the night to go to the loo you can get there without turning on lights, and without falling over the shoes you just threw off because you couldn't be bothered to put them away properly.

It irritates me no end when things aren't as they should be, or rather how I remembered them to be. Coming home late the night before bin day is really really really annoying! I know where every branch sticks out, I know where every paving slab is a little uneven..... Tuesday evenings when it's got dark and walking down my road its CRASH, walked into a wheelie bin, two seconds later WALLOP, walked into another wheelie bin, two seconds later SMACK, another fecking wheelie bin, and so on and so on and so on!

My legs are constantly bruised, my knuckles usually have some kind of graze or mark, and my pride and dignity is often really dented!

It's a totally and utterly pointless and dare I say it cruel thing to have, the sight thing far more than the hearing thing. I think, in fact I'm pretty certain I would do ANYTHING not to have it.

That's all for now folks,I feel I've rambled enough for one day and next week I shall carry on with the 'story'!

The start of my story.

2010-01-26T21:08:00.006Z

I suppose the easiest thing to do is to give people a bit of background about me. Tell people what I'm about, what I was before and what I am now.....!

I'm a woman in my late 20's, who was born partially deaf. I've worn hearing aides all my life and to be honest wouldn't change that as they are now a part, a very important part of my identity. A friend once said to me when I mused about giving up smoking,

'You.....??? You without fags??? That's like the Pope not having religion!'

That sentiment is how I feel about my hearing aides, I'm not 'me' without them!

I was very happy with myself, my life, my friends, my family etc... Don't get me wrong there were things and times where I wasn't entirely happy, but I was in general.

And then......... And then.......... Then my life changed. I'd been away for a few months working, came home and my Mum kept wittering on at me about me walking into things, treading on the cat, not seeing things that were obviously there. I'd never for as long as I can remember, been able to see in the dark, but I thought that was just normal, it's dark right??? Who can see in the dark!

It was a winters evening and so had got properly dark by 5pm, I decided I was going to pop round to see my Nana, she only lived a few minutes away and I had NEVER had any problems going up there before! Plus I knew the way like the back of my hand, or so I thought.....

I walked just a few hundred yards up the road when suddenly I felt a massive crashing feeling in my face, I was stunned. I put my hands forwards and felt the huge body of a tree in front of me. I had just walked slap bang into a big tree in my road. I felt my face and it felt wet, I was at this point still stunned and couldn't work out what it was. I got my phone out that had a little built in torch and turned it on, looked at my hands and saw blood. I thought to myself,

'How on earth did I not see that f*cking huge tree????? Everyone passing me must think I'm drunk!!!!! I'm so embarrassed. Why wont anyone stop and ask me if I'm ok???'

I did actually carry on to my Nana's, (shock I think!) Thankfully though I came to and turned round and went straight back home. I know that if I had turned up at my poor Nana's house with a bloody nose she would have likely have had a heart attack!

So I went home, cleaned up my face and waited for my Mum to come home. It was hours later, (she was on a course at the time), and as soon as she walked through the door I burst into tears.

'Muuuuuuum Iwalkedintoatreeandithuuuuurtandnoone helpedmeeeeeee!' *sobs* and *wails*

She did what Mums do best, gave me a cuddle, told me it was all alright, that my face really didn't look that bad, fed me, ran me a bath and sent me to bed.

The next morning I felt silly, but told myself it was just one of those things, doesn't happen to most people, but I'm ALWAYS getting into some scrape or another, just something else to chalk up to experience! My Mum however had other ideas. She demanded I go to the Doctor and get myself checked out..... And she demanded this for a few days, in the end I did, more to shut her up than anything else!

The Doctor sent me to the high street optician's to have a test, with the instructions to come back with a letter if there were any abnormalities.

There were abnormalities and I was sent to an eye specialist, who did LOTS of tests, and who at the end of it all said,

'You have Usher Syndrome Type 2, one day you will go blind, we're going to refer you to the Western Eye Hospital as that's where the leading eye man is'

I stared at him in disbelief.......

'Thanks for your time,' shook his hand and walked out. I don't remember, but apparently we waited a little longer to get the details from reception about the next steps and then my Mum lead me to the car. (For the tests, you have really strong eye drops that make your vision all blurry)

Once at home, after my Mum had gone back to work with me assuring her that I was absolutely fine..... I burst into tears.

That's all for now folks, the start of my 'story', the trails and tribulations of a deaf/blind bint..... Some of it will be dull, some of it will be interesting, some of it might be a bit depressing, some of it might even make you chuckle a bit. But it will all be absolutely true.....