Tag Archive for Tunnel vision

07 Sep 2014
Challenges

Its almost time to climb a Gherkin

Having started rock climbing earlier this year, I have found a real passion for it. I am always after a challenge though, so thought to myself “Why not bring the two together?” So, I decided that my challange for 2014 would raise money and awareness for Open Sight, a Hampshire based charity that has helped me so much within my sight loss journey, that I want to give something back.

So, a climbing challange it was to be. Simon too needed to agree as I can’t climb alone. He has on occasions climbed wearing a blindfold, so that he can understand how I climb, so he agreed that any challange we took on, he would ‘equal the score’ by wearing a blindfold. He has many many years of climbing with challanging himself to reach a higher grade, he agreed that he too needed the challange, so he suggested the blindfold.

The type of challange was decided, the who was involved was decided. Now to decide the distance…..

Something BIG. Something ICONIC. Something even those with no sight could understand its SCALE.

IT HAD TO BE A SKYSCRAPER !!

The Shard in London was suggested, but at 310m (or there abouts) it was too big. A buiding that comes in at just under half its size came in as a suggestion. The Gherkin, named as such for its fully glazed exterior and dome shaped top resembling that of the pickled vegetable.

The Gherkin

It measures 180m or 510ft in old money. As the building is completely glazed it isn’t physically possible to ACTUALLY climb it. So, between me and Simon, we will climb the equivalent distance of it at Calshot Climbing wall.

Me with my limited vision and Simon wearing his blindfold.

I think he is beginning to regret that decision, as he is probably now facing a larger challenge than me!

So, now for the ‘over to you’ part of this post.

This is a personal challenge for both me and Simon, but in doing this we wish to raise money and awareness for a great charity Open Sight…. We can do the climb (I hope) but we can’t raise the money without your help.

Please support us via our Just Giving Page www.justgiving.com/gherkinblindclimb or click the button below.

JustGiving - Sponsor me now!

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15 Aug 2014
Blind Blog

Struggling with the change

Last month I got my routine 6 monthly eye test. My prescription has altered, which I knew before going to the opticians. I was struggling to see my phone, without holding it at the end of my nose and looking over the top of my glasses as I could no longer see close-up with them.

The change in my sight wasn’t a big change, but it was a significant one.

The way my eye condition is, with the strength of prescription that I need I can’t have near vision and long vision. I can have ‘reading glasses’ to see things that are close to me, like reading, seeing my children etc. Or I can have distance glasses and be able to watch tv or the kids playing around in the park. But I can’t see anything closer than my arm length away. If I didn’t suffer with LCA or Nystagmus I would be able to wear varifocals. But as I do, I can’t.

With my LCA I am now also unable to adjust easily to different light levels, meaning that I am also unable to adjust between two different prescription glasses, to go from distance to reading lenses.

So I had to make a choice…….

And I chose to see my children, large printed letters and the people that I love. Because on a bright sunny day, I wouldn’t see anyone even with distance lenses!

However, this time at the optician I received the news that I was very close to the limit of what they could do for me with prescription glasses. I am getting to the limit of a difference that having a prescription would make to me.

The other issue I had, is that although my eye’s have only changed ever so slightly in the last six months, it has actually been over two years of ‘ever so slight changes’ since I have been in a position to purchase a new pair of glasses, because before I have even chosen pretty frames, the lenses themselves are in the region of £280 (after allowances)

So, having the money to spend, I bought a new prescription and the frames to sit them in. Two weeks to make them, and additional £100 to reduce the thickness from 9mm to 3mm, I got my new glasses……

And all the ‘slight changes’ have added up to one hell of a dramatic change.

A change that means that on a bright sunny day, I am better protecting my remaining sight with a pair of non-prescription sunglasses than wearing my actual prescription.

My new prescription, although strong for me. Is in-fact the equivalent of a reading glass prescription in the amount of difference that it makes, especially with my distance vision.

So for the first time since I was about 4, I am getting used to not wearing glasses full time. An issue that I am struggling with just a bit.

When I am outside in the glorious sunshine that we are experiencing at the moment, I am comfortable and confident wearing my new sunglasses, but inside is a different story.

At home, right now as I write this I am wearing my glasses, when I at meetings I am wearing my glasses, but when I am in the gym or on the climbing wall, I do not wear my glasses.

And it is not a look or feel that I am getting used to…… Just Yet!

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15 Aug 2014
Blind Blog

Where would a blindie be without an Iphone?

As my sight has deteriorated, the brightness, font size and contrast have all increased on my phone. Now Siri has become my best friend and now that I have turned on the voice over, my phone is even more accessible than ever.

I have also found the camera to a fabulous addition to my life. It has enabled me to take numerous pictures of my children playing, birds flying, animals on a farm and today a squirrel. I have found that so far in the summer holidays I have taken nearly 100 photos a time when we have been out and about. Not because I am boring everyone on Facebook with what I have been doing. But so that I can see what the children have been doing, for example when they are playing on the swings in the park. Or when they are feeding a goat at the farm. These are just photos for me, many of them get deleted, but it means that I can watch them later or even use the zoom feature to watch them or check on them while they are running around.

Some people curse smart phones and Iphones, but for me having all these features with me enhances my independence not only with my children, but when I am shopping. I used the camera just yesterday to take an image of a shelf price that I couldn’t read. Because with magnification and holding at the right level, I can read it.

I can’t live without mine now. It is a way of communicating with friends and family, my Sat Nav, CCTV, document reader and so much more.

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04 May 2014
Blind Blog

Insight in to the future – I didn’t like it

Yesterday morning I ran out of hayfever tablets, and it wasn’t until getting ready to go to bed after my eyes had felt ‘scratchy’ all evening that I remembered. But within few short minutes it was too late.

The damage was done and there was absolutely nothing I could do.

My eyes started to weep a sticky kind of tear, my eye lids swelled and involuntarily my eyes were closed.

Painfully so, too the point that I had to physically pull them open to try to put drops in, but the pain was so great I gave up on that idea.

All of this is down to my hay-fever, not my eye condition. So I wasn’t overly concerned.

But I wasn’t prepared for what happened and how what followed made me feel.

Not being able to put the eye drops in, the only other option was sleep or try too.

But to get to bed, I first had to turn off the lights and ‘close-up’ the house for the night.

I can and often do walk around my house without the lights on and I know where everything is … Well, maybe apart from the odd toy, or worse a large dog smoked bone !!

But, this was very different.

If I close my eyes when all the lights are on, I can still see the brightness from the lights through my eyelids.

And this was exactly what it was like last night, only because of the swelling and pain, I couldn’t just open my eyes a see the shapes of the lights.

This brightness was very uncomfortable, and more upsetting than I though possible.

Walking around the house turning off the lights was something that physically I could do, but emotionally it was heart breaking.

It wasn’t until the house was in complete darkness that I was able to feel calm again.

There is likely to come a time in the not so distant future when all that I will be able to see is light from dark, with possible shadowing.

Lastnight was an insight (pun intended) to what that world will feel like.

And I don’t think it is ever a world that I will he ready for.

Although registered as severely sight impaired, which many class as ‘blind’ (even in the medical world) I can still see, all be it small amounts in little detail, this is enough, my brain and memory can fill in the rest.

How will my memory cope with filling in the rest when all I can see is light and dark?

How will I tell that my children are amiling if I can only see their shadows?

Will I ever be able to cope with the fact that my sight is ever diminishing?

Or understanding how I will fit in an ever shrinking world?

Any ideas would be grateful received.

Thank you.

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14 Jan 2014
Blind Blog

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.

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08 Dec 2013
About Me • Blind Blog

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 !!!

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04 Nov 2013
About Me • Blind Blog

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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17 Sep 2013
About Me • Blind Blog

My guide dog & me

As a guide dog user my guide dog is an extension of me and my Independence. This wasn’t a concept that I truly understood until we had worked together for several years.
When I applied for my first guide dog back in 2009, I knew that it would make a difference to my life, but to what extent I was not aware. There have been both good sides and low sides to having a guide dog. The biggest thing for me of having a guide dog is the emotional, love and soppy side that officially guide dogs don’t tell you about. When applying for a dog and training you are told all about how important the bond within the partnership is, for that reason it is key to have a period of bonding with no interruptions from anyone else before the training starts.

For me, both my daughter and my partner went away for the weekend, Vicky arrived on the Friday afternoon and we spent the weekend together, just playing and spending time in the garden. I groomed her, tickled her tummy and fell in love with her.

I was very nervous about starting our training and if I would be able to do it, but she seemed to sense this and just kept on nuzzling me as if to say “it’s going to be ok”. The very same way she still does now when I am down or upset. Without this connection I do not feel that we would have the working relationship and connection that we do today.

She has enabled me walk with my head held high and regain my posture that had slowly been being lost as I had began to look at my feet so much to watch my step, rather than my surroundings and where I am.

There was a very steep learning curve with Vicky, I made mistakes, we made mistakes together and we gained a wonderful trust for each other, that only strengthened our working bond.

A working bond that appears to be coming to an end.

It is with a heavy heart and tears in my eyes that I write this blog, my sight is slowly deteriorating, but with Vicky by my side my independence is at its highest, allowing me to improve my health and my fitness. But at a time when she is slowing down and asking not to work so hard or so much.

Vicky has had her own health issues during our time together, for which she has an inhaler to help to open her airways to increase her breathing, which she has responded well to. But, with her Eighth birthday approaching next week she has been hinting that it is time to hang up the harness.

She is well, she is very happy and will allow me to put the harness on and work, but she is also holding back, she has reverted to working in a way that we did at the beginning.

She is wishing to walk me close to walls, shop fronts and buildings, which with it brings an unsettled and troublesome result. Walking and working in this way means that the walk is a start-stop, we have to continually walk back out to walk around obstacles like a-frames, bins, posts and even people.

Initially we had trained this way, but as both our confidences grew, we moved more into the middle of the path, for Vicky to revert back to this shows a sign of unhappiness and possible stress or lack of confidence in what she is doing.

So, with great discussions with her and my guide dog mobility team we have taken the step to look at her retirement and me moving on to work with another dog.

I will take the time over the next few weeks and months to open up more about this, but for now, before my heartbreak over takes me I will end this post here.

Thank you for reading. Please feel free to ask questions xx

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17 Apr 2013
Blind Blog • Challenges

Going Alone

I struggle with staying indoors or doing nothing when the sun starts to shine.  With the bad weather we have had despite it being April, I am getting serious cabin fever.

So on Sunday morning with my swimming partner out of action due to illness, instead of going to the pool alone, I popped to my mum and dads for a large mug of green tea….. This was my first solo bike ride, a round trip of just under 11 miles!

I struggled to hold the bike up at first as my whole body was shaking with a mix of fear and excitement.

Even writing this I feel pathetic.  I am a 32 year old woman, who has been riding a bike since I was about 4…. This was a huge step for me though.  And one that deep down I know is not pathetic.

 

I know the route to mum and dads really well, some would say I could do it with my eyes closed….. And in the dark, that would be almost the same thing.  It is almost all cycle path, no problem at all.

Until you factor in joggers, other cyclists and the odd low flying buzzard!

As part of my condition I lost my ability to judge speed and depth, so when seeing another cyclist, I just stop.  sounds daft, but then I can’t possibly ride into them that way.  This does leave me often standing still for a while, but its the safest way I can think of.

I’m not sure what my consultants would say if they knew that I did this, I am not legally allowed to drive a car, but I have never been asked to take a test to ride a push bike.  If I didn’t feel safe….. I wouldn’t do it, and like I said in a previous post, I do know my area very well and will only ride within cycle lanes, cycle paths and on the odd footpath in between.

In doing this and trying to keep my independence, I have also been called a fraud, but then, in reading a label in the supermarket or looking at my own watch I have also been called a fraud.

This is an open blog, please feel free to let me know your opinion.  Good or Bad, all I ask is that you keep your language polite.

So over to you…….

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08 Mar 2013
Blind Blog • Days Out

London – A Big Journey

It’s 4 am & the alarm is set for 6.20 am. But after a week of knowing about today, it has arrived. Today I travel to London, a part of the capital I have been to many times but never alone. Of course, I will have my trusty guide dog (GD) by my side, but no human support. In addition, today is a bigger step as it is the first time EVER that I will use the tube alone, the first time for me using a tube since my sight deteriorated & remembering back I was about 12 the last time, so lots would probably have changed in 20 years!

The reason for this is an important eye appointment at Moorefields Eye Hospital on City Road. For which I got just 7 days notice. This in itself makes today scary, but I’ll talk about that a bit more later.

The reason this is such a big thing is because as I mentioned briefly before, I have a GD, I am registered blind with a deteriorating congenital condition from which I have some sight, but in general terms, it’s not good.

Yes, I did say I’m registered blind, but that doesn’t mean that I can’t see anything… A very common misconception, one I myself used to believe before all of this. My condition has long fancy names, but in layman’s terms, my distance vision means that I struggle to see the detail of someone’s face when they stand directly in front of me, and I have severe tunnel vision, like looking through the tubes on the inside of Christmas wrapping paper, I can’t even see the arms on my glasses anymore if I’m looking forward.

Yes, I wear glasses and what I have just described is the best-corrected vision I have when I wear them. Without them, anything more than 2 inches away is a blur. Again, another preconception of many is that glasses fully correct your vision, they don’t, and that is often the reason I get stopped with my GD as people think I’m training her, not using her as my work partner.

Sorry, I went off on a tangent, you’ll get used to me!

I have travelled to London several times since November 2011 on my own since making regular visits to the head office of RNIB (Royal National Institute for the Blind) having gone once with a colleague who showed me the stations to change at, we always went by train, never via the tube as she herself did not like the tube.

RNIB HO is situated several minutes walk from St. Pancras. Which is now home to the Eurostar, making it with its small train station at the far end, one of the busiest station in London. It is filled with designer stores, coffee shops and of course, hundreds of thousands of tourists and businessmen and women. So that in itself if no mean feat, and one thankfully, I have only ever had to tackle without my GD on one occasion. When we get there, she takes over, goes into her mummy mode and guides me safely through the crowns, the luggage, the hectic, noisy, smelly surroundings without a moments hesitation.

Today my journey consists of many of the same stations as this that journey, to help me keep some control and familiarity over what I am doing. We break our train journey early, having changed at Three-Bridges when we arrive at London Bridge… Another station with its own shopping centre attached, to go down from the train platform into the basement to join the Northern line Tube. The journey has been planned in a way that I need only use one tube, on one line and not need to change. From Tower Bridge, Old Street just a moments walk from the hospital is just 3 stops away.

Yes, I know that trains now all have audio and explain what stations they are stopping at, but on my other travel companion, my iPad is a list of all of the stations each of the trains and tubes I will be travelling on stop at and even the trains surrounding my chosen journey in case alterations need to be made.

I’m.a planner and an organiser, often taking this to extremes in trying to do this with other people and their lives, but it is how I can keep my control. A word and emotion that is incredibly important to me in this ever decreasing world.

HEADING HOME

we made it!

Although I am unable to fault the help and support that I received from the underground staff, I have to say that the information I had received about the stations I was travelling between was completely misleading and very unhelpful.

Walking up and down an escalator that was switched off as the GD is not cleared to use them was very exhausting on the way up… And even more scary on the way down, with over 215 steps in total in each direction, it was on a positive note a bloody good workout for my thighs!

London Bridge station is accessible, and one of the highest awarded for this in London, but if you need the lift, be prepared to walk. With the nature of the buildings and ages of them that house the tubes, accessibility is always an issue and one that I underhand. I am more than happy to have to do things differently and as said, I couldn’t fault the staff, they even walked with me out in the rain to get the lift, take me to the platform, sit me on a train and radio ahead to ensure that there was someone waiting at the other end to do the same. But the information available as to how the stations are accessible is limited to lifts and flat access onto the tube.

There is not a one size fits all solution to accessibly and disability issues, but information and the web is infinite, so this could be done.

As a blindie, I rely heavily on google maps and google earth to do a virtual walk around from the comfort of home… Could you do this for a train or tube station?

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