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The end of a (half) Era

  Today is one filled with mixed emotions, concerns and thoughts.  Today, 18th January 2015 is the last working day for my guide dog Vicky.  We have been working together as a qualified team since 18th November 2009, and it has been an amazing 5

So….. Today, this happened !!

Me & Fizz outside EICA

It’s almost 11.00 o’clock, 12 hours after this crazy day started. The climbing arena was nothing like I had ever seen before and no matter how much I had researched and looked at photo after photo I was not prepared for the quarry that I

Maybe I Should have said something before…..

Well, this is something new……. I am sat in the passenger seat of my friends car doing 70+ MPH on the M6 Motorway travelling on my way to Edinburgh; while typing this blog.  My iPad is tethered to my phone for 4G and my voiceover

I have a question for you

it is time for me to ask for you to help me. If I were to write a book, giving in sight into my life and how I have got myself in and out of many a situation. Would you read it? I am talking

Inquizative Cubs

Having a friend that is a cub leader I was invited by him to speak to his cub group about my sight, having a guide dog and help them to understand that people have differences in how they communicate and see the world. I have

Technology Sees’ Everything

I would say that I am a tech reliant vip. The reason for this is because I don’t go anywhere without my iPhone, iPad and headphones. No I am not an apple geek, but I am reliant on google maps, street view and up to the minute travel planning such as ‘Travel line’, ‘National Rail’ and even local weather, all of which have fabulous little app’s.

When travelling somewhere new, I am meticulous at planning my route, my first port of call is The Travel Line, where all I need to do is put in a start and end point. I can even put the time I either want to leave, or arrive by. It will then come up with a list of travel options for me that include walking, buses, ferries, coaches and trains. This is where I can ‘tweak’ it to my preferences, for example, I can put the maximum time I am happy to walk between other transport. I can even view the route on a map, which is animated to show me through the whole trip, with icons for walking, buses, ferries and trains. Which I can zoom in on the work out.

If I am travelling by train, I can then check up on all the information that I need via the National Rail app. The reason I check this too, is because it will break the information down even further. It will list each of the stops that the train will make, it will also tell me which platform the train departs from and arrives on…. This is particularly handy if I need to change trains at a station, as I can navigate much more by myself without additional assistance. (although if I need it, I will ask for help from the station staff)

I will plan my route from home and then take ‘screen shots’ of the information or even save the travel details to my calendar, just incase I have no internet access via wifi or 3g on my travels.

When planning my route, lines on a map do nothing for me. So I am an avid fan of googles ‘street view’ this enables me to visualise the route from a bus stop, along a walk or even find short cuts, that the route planners may not show.

This is of course only as good as the information that has been recorded, for example if I street view my own house, I see the driveway in its old position, not it’s actually how it is now.

But as the map navigation is continually updated, I (as yet) haven’t become completely stuck because of it.

An example of this was earlier this week, when I had to visit the Southampton offices for Guide Dogs. An office that is a ‘tad’ out of the way for guide dog owners.

So I planned my route at home, based on the time that I needed to arrive, then to allow for delays, followed the details for the slightly earlier journey.

Which in this instant was needed.

Having navigated to the train station and from there to the bus stop needed in southampton, I even asked for assistant from the people at the stop with me, to help with the bus I needed. As a major calling point all of the other buses that came to the stop all pulled in. My bus didn’t and the person who said they would help me, did help, but only to tell me that the bus had driven straight past!

So, out came my phone to check the time of the next bus from the stop I was at…. And it wouldn’t be for another hour. So the Costa next to the stop enabled me to piggyback on wifi (as it is faster than 3g, which I would have used if no wifi was available)

Thankfully, there was another bus that would take me to Chilworth where the office is situated. It was however, 15 minutes walk from where I was, in an area of Southampton that I wasn’t familiar with. So, out came the headphones and on when google maps.

I was able to navigate and instruct Vicky my guide dog without having to look at my phone at all.

I have ‘over ear’ headphones so that I can comfortably listen to information that I need, and have one ear free to hear my surroundings. Plus I have never been a fan of in-ear as I find them too good at noise cancelling and also, quite uncomfortable as my ears are quite sensitive.

So, with my bit of tech I was able to find my way to the other bus. Once getting on, having double checked the number and that it stopped where I wanted imagine my surprise and relief when the driver said ” my bus has audio, so you will know when we are approaching your stop.”

There is an Eclipse route between Fareham and Gosport that has audio on it, just like you get only trains! But I wasn’t aware of other services or even other bus companies were using it.

So instead of having to rely on my iPhone and it’s apps, I would just sit back, relax and listen for my destination.

Audio announcements on buses is a major plus for many people, not just us VIPs, it works for people who are unfamiliar to the area or those travelling in the dark. Because, unlike trains you can’t count the stops on a bus as the bus does t always stop!!

So, with the help of all this tech I am able to gain even greater independence, without having to fully rely on others, I can also use public transport instead of more expensive taxis thanks to free apps that are available for smartphone and iPhone users alike.

 

 

 

 

Silly Sewing

My daughter moved from Rainbows to Cubs in September. She has been a very busy bee with her challenges, leaving me with the joy of sewing them on.

Until recently I had called upon my ex-partner to do this, but on Monday evening when Alannah came to me stating she needed her art challenge badge sewn on before her meeting in 45 minutes time! Eek….. It was down to me to get out the needle and tread.

Well, you can imagine, just threading the needle to start with was fun! Not.

Then trying to figure out where the badge needed to be placed followed with a quick call to a friend who is a cub leader.

Calm restored, the sewing began. It went very well, it was neatly done and in the right place as described to me.

Although the badge itself…. Was upside down!

Dilemma struck.

Do I un-pick it and send her in in-complete uniform or make her look a fool?

I admitted defeat and un-picked it.

Alannah explained to AJ her leader about my ‘silly sewing’ And came home with yet another badge for me!

Thankfully she didn’t loose points for my mistake and I have already had an email offering me sewing support too.

Inquizative Cubs

Having a friend that is a cub leader I was invited by him to speak to his cub group about my sight, having a guide dog and help them to understand that people have differences in how they communicate and see the world.

I have done talks before about having and using a guide dog, I have even visited my daughters school to explain about Vicky and as the age of the children increased, the questions moved away from guide dogs and included things like “how do you see your mouth to put food in it?” “How do you see your bottom to wipe it when you’ve been to the loo?” (Which horrified the teacher. Thankfully not me.

So, I started my talk explaining about Vicky, what she did for me, how to react when you see someone with a guide dog, the usual awareness type talk. I then went on to explain about ‘being blind’ and what I couldn’t see rather than what I can’t, after all as I always explain about my sight, I don’t know what I can’t see.

With the help of an app on my iPad that shoes an example of what it is to see with particular eye conditions I was able to show them what a picture looks like for me.

image

They say apicturespeaks a thousand words. Would you agree?

VisionSim of Family Plaque Family plaque by Charming Little Home

Above on the left is how I see (without the blackness or red ring) on the right is the actual photograph. With the cubs I did this by taking an image of their cub leader, they were all amazed by it.

The cubs were fantastic, they asked lots of questions including how my guide dog guides me, so by splitting the group up to make a corridor, leaving one child sitting in the middle of it, I showed them.

Vicky walked me along and when she came to the obstacle (the child) she stopped and stood, she ignored the child. I gave her the command to walk on, but as there was no space for us to do that she sat down. I asked her to find the way and she turned me around and walked around the children instead.

I went on to talk about Braille and allowed the children to see an example of this. Again this bought up many questions.

My talk lasted over 40 minutes, but the cubs sat happily listening and asking questions. Speaking with the leader afterwards he told me that he had never seen them so enthusiastic about listening and learning before.

I got a lot out of my talk with the cubs, I just hope that they did to.

So, how do the blind date?

I wrote a blog last year about good friend who was joking with me about dating, how it really would be a blind date in my case!

But as new year roles in and friends were kissing their partners, I got to thinking ….. How do the blind date ?

There is the world of Internet dating, you can meet hundreds of people just like you (so the adverts say)

There are even dating websites for ‘those with disabilities’ and there is the tv series on Channel 4 that highlight the whole thing with the documentary ‘The Undateables’

I’m not the sort of person who has ever gone out looking for love, it’s just always …happened!  I’m not looking for it now either, I am happy as me, but I do miss being with someone when with other friends.  As I am beginning to feel like a spare wheel, especially during the festivities.

So, how do I go about dating?

I suppose sitting in a pub with a guide dog is good ice-breaker!  But my days of catching the cute guys eye are long gone….. I do t think I could even spot the cute guy, let alone catch his eye!

A friend offered to set me up with a friend, is that how it’s done?

I sound so naive, but my last partner was the best man at my wedding (it sounds like we ran away together when I put it like that-but that’s another story)  I knew him for a while, we were good friends.  I have always had more male friends, but there aren’t any of them that I would consider dating now, I know them all TOO WELL.

So, how do I date?

I have looked at the dating sites for the disabled, it’s not that I don’t want to date someone with a disability, but just as I don’t have a preference on hair colour or even skin colour I don’t feel that because I have my own disability that I should be defined by it.

So, I ask again, how do the blind date?

See My Way

As I have always had my eye condition, I struggle to explain it to others as I am not aware of what it is like to see with good vision. I can explain how it has changed and talk of what I can see now, in comparison to what I could see several months or even years ago. So I thought people might like to see what I see, this is not easy to do and with the simple computer software that I have, it isn’t a true representation. But I thought you might like to take a look.

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I wanted to show you, what I DON’T SEE….

I can’t see as far as this, or with as much peripheral. What I can see isn’t as clear either unless it is something at the end of my nose.

The left shows the tweaked view, with the original filming on the right. This was recorded during a walk one morning to the train station on my iPhone to give people an idea.

The pain of my cane

A few weeks ago my faithful Guide Dog had to temporarily hang up her harness to have a lump removed (just a ‘older age’ cyst, very routine) With her doing this, I had to dust of my long cane. I have kept up my cane skills and on occasions have used it when it has not been practical to use Vicky. However, it has been a long time since I have used it on this scale….. Even when I trained with it, my independence wasn’t what it is now, so team this a decrease in my usable sight and it has been a hard 10 days.

I managed the first few days of her being off work with doing very minimal trips out, mostly because she was very groggy from the operation, so I daren’t leave her too long at home. I then managed to time things in with when I was seeing friends who could come with me.

But there is only so many times I could do this, not to mention, wanted to do this! I was struggling with the dependancy I had on others.

So off I went alone, with only a few of the normal ‘cane jabs’ recieved from uneven paths, or missing a curb edge. These are part of ‘the norm’ any long cane user will tell you about.

On Friday, one week after her op, Vicky was delivered to a boarders, where she got to enjoy some doggy company and rest, while I went up to London to see my eye specialist and professor for a dna trial I am part of.

A trip I dislike at the best of times, but without my faithful friend I felt lost. I had a friend with me, but the concentration needed in London increases ten-fold even with a guide dog, with the cane it was horrendous. Even before I had my eyes dilated and could see even less.

Thankfully my friend drove to help ease my stress. But the concentration needed even for the much shorter walk from the car to the hospital was too much. (Thats another post though.)

By the time we left the hospital four hours later my eyes were heavily dilated and what little I usually see was much smaller and incredibly painful. At this point the cane was used purely to role infront of me and I linked in to my friend for support.

Saturday morning I headed off to collect my son from his friends house where he had been enjoying a sleep over. Hearing the bus coming up the road, I started to run, resulting in me going over the top of my cane having caught it on a drain, flying forward through the air and landing on the palms of my hands and my knee.

Ouch…… it stung, but the embarrassment was much worse, especially as it was actually the bus driver who had seen my fall and got off his bus to help me up and check me over if needed.

 

Thankfully, grazes, bruises and a damaged pride were all I suffered. I couldn’t stop, the day was getting away with me and I still had to pick up Vicky after Lawrence, so there was no time to hang about, go home or even feel sorry for myself.

It was just one of those ‘blind fails’ as I call them.

 

So on I went, enjoyed the rest of the day and soaked my wounds in a warm bath later.

Having used a long cane for some time, I am used to the odd bump. Either from me bumping into something, or a poorly laid pavement causing my cane to ‘stab’ me.

But I could not cope without it when my guide dog isn’t available. Because without either cane of dog, I could not cope on my own in the great outdoors.

I was not prepared for the bump I had on Monday on my way to college though…………

I had negotiated my local station, no problems. With the odd ankle sweep for people who thought they could nip in in front of me to cut me up. (One of the enjoyable sides of using a long cane over a guide dog!!!)

Generally as usual, people were very helpful. I was asked upon reaching the station I required, if I needed any assistance, to which I politely thanked them and said (knowing the station well) that I would be fine and headed for the stairs.

Up the stairs, across the bridge no problem, almost down the stairs on the other side when it happened.

When walking up stairs, I hold my cane upright in front of me, in the middle of my body, so that I can use it to judge the depth and height of the treat on the stair and also to be able to feel when I have reached the top step.

On the way down though, this is different. On walking down steps, having swept the ground on the initial step to find the first step down, I then hold my cane like a pencil, so that it crosses my body on a diagonal, so that the ball tip can run along each of the steps again so I can feel the depth and also feel when I reach the final step.

My cane is no more than my shoulder width while doing this, so that it is not sticking out, but enough to enable me to feel if an obstacle is in my way.

So, almost at the bottom of the staircase, I had already negotiated the 180 degree return half way down, the commuters with suitcases and bikes rushing up the stairs to get to their platforms.

When I felt someone rush past me very closely also coming down the stairs. Someone who caught the ball of my cane with their foot, causing it to move out from where it was rolling along the step edge. In the split second it took for me to recover it back to the step I had missed the bottom two steps and landed on right knee with my right hand again taking the brunt of the floor.

 

A kind women helped me up, while another bought a guard over. They were concerned and checked my hands for cuts and any sign of breaks.

I felt (yet again) very embarrassed by falling and was doing all I could not to cry or get upset in front of these strangers.

When the guard arrived, I shoe’d the helpers away. I was stood up again and just wanted to get to college and away from people.

The guard asked me how I was and what had happened, I explained that it was ‘just one of those things’ and that I was more embarrassed than anything. To which he suggested that next time I use the lift, or had assistance in the station, “after all, you are disabled and shouldn’t do these things alone.”

I think this upset me more than pain in my hands. I did all I could do, which was to thank him for his help and left the station.

 

I made it across the road before bursting into tears, I had to hear a friendly voice, so using Siri on my phone (as I always do) I called a friend….. It took a few attempts as Siri had trouble understanding a blubbering me!

My friend was fab, calmed me right down and checked that I really was ok. Even making me laugh at a silly joke.

 

By the time I got to college I was composed and ready to face the day.

I daren’t share what happened with any of my college group for fear it would set me off again.

Having managed to escape any further bruising to my knee, but having my right palm take the full brunt of it, I am now wearing a padded support on my hand and wrist to help relieve the pain that I am in and also to cushion my wrist and palm, so that I can still use my long cane and try and not put myself into a forced hibernation until my trusted guide dog is ready to return to work.

It’s official, I am annoying !!

Last week saw me attend my 9 monthly checkup at Moorfields eye hospital.

My condition LCA is grouped in with RP, retinitis pigmentosa, as it includes many of the se characteristics like night blindness, loss of peripheral vision. With LCA – Labers Congenital Amarosa, I also suffer with myopia (severe short-sightedness) and nystagmus (involuntary eye movement that is continual)

I am now down to finger counting in both eyes, when I used to get the top line of the eye chart stood at half the distance in my rift eye.

Given that six years ago I was between the second and third line on the eye chart (depending on the letters)

I have an incredibly strong prescription lenses, which is what gives me the sight I explained above. Without any glasses it is purely light and colour I can see without holding something above the top of my nose!

Please don’t be reading this and feel sorry for me, my sight is what it is, yes it may be worse than most, but it is much better than some.

So, up at Moorfields for my nine monthly check, I have noticed many little issues in the past few months and with the puppy being off work, I was even more aware of differences from the last time I had used my cane like this.

The long and the short of it, after four hours seeing a consultant, an eye scanning team, a retinal photographer, a registra and then my Proffessor, I have an increase in my cataracts (but not enough that they would risk laser surgery with my nystagmus) I have more noticable ‘floaters’ parts of my retina that is moving around in the eye jelly, a deteriation of my peripheral.

I can no longer do the peripheral eye test where you stick your head in a white bowl like test machine, stare at the red dot in the middle and press the button when you see a green dot.

Now they use the images they get from the scans and photo’s to tell me about my percentages. I have a difference of 21% from eighteen months ago, which sounds significant, but when I have less than 10% periferal it is even more…. I am not a mathamatitain, but even I can work out that that is a lot.

The cataracts are causing everything to feel as if it is either darker than it used to be or is unbearably bright when I have been in a darker environment.

So, the main reason I go to Moorfields is because I am part of DNA study to help with genetics for RP and LCA. So far they have found and researched 14 different genes…… And then there is me!

I told the registra that I liked to be different, he said I wasn’t different I was annoying. He actually called me annoying.

But then the Prof came in to see me, telling me of another study that I could be part of, very simple blood sample is all they need. He reminded me that my condition was definately not ticking any of the right boxes at the moment and making his and the research teams work ever harder. But that at the same time, he still found my scans and photographs magical.

So, I am offically annoying.

And that is exactly what is now written in my hospital notes too !!!

It’s all about perception

Tonight when popping onto Facebook and catching up with my friends news a fellow ‘blindie’ posted about the trouble they had had when booking a table for a family dinner, when doing so she informed them about her guide dog that would be joining them.

She put up on Facebook that they would not recommend her bringing her guide dog is she could leave it home guide dog.

Having eaten at the restaurant before it is a tiny place, not that it is overcrowded, just small. When I ate there it was for a family celebration and as I was going to be enjoying the wine I left my trusted pooch home.

When in the restaurant, the waiters seemed to be struggling to move around the tables as all of the tables were occupied. The tables themselves were quite small especially considering the fact the meals included so many dishes per person.

I am maybe the one who is the devils advocate here, but I do try to look at both sides. To clarify I wasn’t part of the phone conversation, so can only comment on what has been posted on Facebook.

My friend who I shall call Bee says that when booking the table the person she spoke with was very rude.

As a guide dog owner I too have been on the receiving end of rudeness or in most cases, lack of understanding. It is surprising how many people, especially shop and restaurant owners aren’t aware that guide dogs and other assistants dogs are cleared by environmental health to enter their premises.

Bee felt that the restaurant were very rude and is asking guide his team to get involved because if the situation.

But is it real rudeness?

Is it a language barrier? On the telephone voices and accents can sound rude, when they are not understood or heard in the correct context.

Or is it something deeper?

Is it that as someone who is often discriminated against starts off on the back foot?

For those that have faced discrimination or difference just like me become overly defensive and instead of being assertive, form aggression toward certain subjects ?

As the post suggests, it’s all in the perception!!

If you read a Facebook status that a guide dog had been refused entry into a restaurant because of their guide dog. How would you respond?

Fireworks

This week saw me with my family go and watch a firework display with my daughters Cub group, after navigating in the dark from the car to the camp site where the bonfire was crackling away.

We sat around enjoying campfire songs, I was mesmerised by the flames, watching the little flecks fly off into the night sky, thinking how this looks to others, do they see the flames as I do?

This was when I began to think about what a firework
Actually looked like when it went off
In the sky?

For me it is just a burst of colour, but I wondered if ‘sighted people’ saw individual flecks or different colours?

So after the camp songs & warming up by the fire we walked up to where the fireworks were being set off from & I divided that I would film some of the fireworks on my phone so I could see it as others.

This was what I filmed

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The film shows almost perfectly what a saw from the embers that were coming off of the fire, little fuzzy balls like those I spoke of in an earlier post (looking through raindrops)

Looking at the practicalities of using an iPhone to film fireworks that are roughly 100 feet in the air won’t give you the clearest image, but actually the ‘poor film quality’
Allows me to explain more to you about how I actually do see.

Maybe you can have more of an understanding as to why I was mesmerised by the little embers flying off the fire rather than the fire itself.

This has given me the chance to let you literally ‘seemyway’

I hope you enjoy?

Learning to forget to look…., Not ready for that yet!

Although I am registered as ‘blind’ I do have some sight, all be it distance vision that doesn’t even get me the top line on the eye chart and central vision with a peripheral of less than 10%, a figure that has recently reduced by 17%…. Feel free to do the math on that! To me it means just one thing

“my remaining sight is deteriating and quicker that I really would like”

Making the most of my remaining sight is key, and by actually using my eyes I am causing no harm, nor am I strengthening them. The deterioration of my retina is uncontrolled and unmapped.

So, by now you may feel confused by the title of this latest blog, well let me explain. As my sight has deteriorated, my eye’s and the period for which I can use them to concentrate on anything has reduced dramatically. In theory anyway, I say this, because I can still spend hours watching a really good film, of which without the aid of audio descript I miss a large percentage of it.

But for this I suffer.

As my eyes tire from the concentration, they in fact become dry, and difficult to close without seeing vivid flashing images on my eyelids.

As I said above, having missed a large percentage of a film, I now rely fully on Audio Descript and do not strain or even try to see what is actually happening on the screen. This has given me back my love of the cinema in recent months, so that is a bonus!

But there is one part of my life that I can’t stop over concentrating on and overworking my eyes, that is my phone, my laptop and my iPad. All of which have fabulous built in accessible software, after all Steve Jobs insisted that technology was assessable to all, not as an after thought, but as part of its design, hence why all my tech is Apple…. That and the fact that originally my training before my sight loss was in Design and if it was design, it HAD TO BE Apple.

Anywho, I digress. I have dragon and Siri that enable me to speak to my tech for it to then type my words. I have magnification, I even have voice over. And yes for you techno-phobes, it even works on touch screen. Even more so since the IOS 7 update!

But the thing is….

I have SOME vision and I can’t help but use it.

I can touch type and thankfully have been able to do this from a very young age (I think I was about 8) so I don’t have to look at the keyboard or technically the screen either, but I do like to proof read what I have written, especially when it comes to emails, letters and more recently college assignments.

It is a college assignment that has in fact lead me to write about this. You see, it is currently 4.15am on a Monday morning, having been working on my latest assignment that is due in at 9am THIS MORNING. I am now not able to sleep, even though it would be a really good idea if I could as I have a 4 hour lecture and a gym class later today too!

The question you are probably asking right now as you read that last paragraph, is what the….? Yes, I did leave this assignment a little later than others, but actually that isn’t the reason why I am up so late with it.

The REAL reason I was working on it so late, was because of my wish to see what I am doing and the light levels. You see even with the daylight lamp on, if it is too dark in the rest of the room, I struggle greatly to focus on all of my work, as the light level varies from that under the lamp to the rest of the room.

With the darker evenings (which in fact cause the darker days) I am able to sit down with a suitable light that illuminates the whole room at about 6pm.

This is slap bang in the middle of feeding time at my zoo, then comes baths, books and cuddles before bed for my 2 little monsters. So that 6pm soon becomes 8pm and I’m sure you can see where I am going from here?

I have tried and tested myself with this, so that I can understand what I can do without suffering and what I can’t achieve without the suffering.

The short answer is not much.

Once I hit 2.5 – 3 hours thats it, I can look at spending at least that again letting my eyes settle down. The good news is that if I extend that to 5 hours, that doesn’t increase the ‘down time’ that I need.

So, to save my sanity, especially in the winter months I need to start to stop looking.

But its hard, emotionally more than anything….. The reason is because, one day I wont ACTUALLY be able to see it, so while I can why shouldn’t I?

If your sight were or if your sight is deteriating would you want to stop seeing all the things you can see now knowing that in the future you will have no choice but not to see them?

This is a tricky argument that I have had with a few people, you see the one point I struggle with is that apart from the lack of sleep, I am not causing myself any harm, I am certainly not causing my eye’s damage.

This I have checked, double checked and yes, you got it TRIPLE CHECKED!!

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