2012

2012 has been one hell of a challenge so far, more so than any other year!    

Without a doubt the biggest was my diagnosis of Thyroid Eye Disease (TED) at the beginning of this year. In a nut shell my thyroid has been working overtime and then decided to attack the white blood cells behind my eyes... In turn making one of my eyes 'pop' out. It's uncomfortable, it aches, it's tiring, it's stressful and really really unattractive. Right now (and for the most part of this year) I have been rocking a very uncanny Popeye impression! When I was first diagnosed I was put on a course of medication, 30 odd pills a day, gradually going down to none... Which made no difference whatsoever. The first few times taking them I threw them straight back up, not nice at all! It felt like I was going to hospital every other day to have the (very nice it has to said) Nurses doing colour tests, Doctors putting drops in my eyes and then shining bright lights in them, and then measuring the amount the eye was popped out by, then to be told by my Consultant that everything was the same. So now, I've got a date for an operation to 'pop the eye back where it should be'. I'm both pleased and nervous... It will hopefully make everything alright again, but then again, it's an operation on the eye... That's a bit.... EEEEEK!!! 

Then Samson, My beautiful, daft, lovely boy was taken into Guide Dog hospital to sort out an ear infection that just wasn't going away! 21 days later I got my boy back. 21 days of missing him. 21 days of realising just how much I have come to rely on him. 21 days of feeling a bit lost. 21 days of having no soft velety ears to fondle. 21 days of not going at the speed I am now used to going at. 21 days of people asking when I was going to get Samson back.

Then, TWO root canal treatments!! I don't think I need to say any more on that matter!

Then the challenge of working in London during the Olympic Games.... At an Olympic Games venue. Each day the way into work was changed, the security checked got more strict each day and each day trying to concentrate and not get distracted by the bellowing cheers and whatnot.

There's been more, but these are the main ones that I think I'll remember for the rest of my life. I'm actually quite proud of how I've dealt with it all. A couple of years back I would have sunk into a pit of depression and not known how to claw my way out again. But this year, I wobbled right on the edge of the pit and then pulled myself away from it. 

Why? How?  I have learnt to be more honest, with myself and with others. I have realised that saying to people 'you know what, I can't do that because my eyes hurt, but if you'd like to do this instead that would be great and be easier for me to deal with' doesn't make people think I'm being selfish, and that actually they'd rather hear that and help me.

I've learnt to relax.

It's been a while...

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.

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

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.

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!

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.

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!!