Archive for About Me

Archimedes would be proud

As a VIP, I have little tweaks in the way in which I do things to enable me to feel like I am as ‘normal’ as everyone else. (Even though the strong independent part of me knows that I don’t need to be the same as or normal like everyone else!)

One of my tweaks, is to fill my bath to a successful level by using the timer on my iPhone. First the hot water, then the cold. Of course this isn’t fallible, sometimes the water is still too hot or often too cold.

Either way, I am not flooding the bathroom or even close to washing the floor!

As a busy mum, who has increased her classes and time spent at the gym, it has actually been several weeks since I last had a bath (having showered instead, so I am clean and not smelly)

So imagine my surprise yesterday evening, upon filling my bath as my usual tweak, checking the temperature and getting in that I discover that the water didn’t cover me as much as before.

I stood up and used my hands to measure the level of the water, it was the right amount of water, give or take…. So, there was only one answer for it.

There is less of me in the bath to displace the water !!!! YIPPEE

All that time at the gym and eating lovely seasonal fruit is paying off.

And now back to the drawing board on the timings for the water level?

Or, as I did last night, sit in the lower level bath and fill up when I am in it to get the desired depth and temperature.

Either way, I am a very happy bunny.

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.

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 !!!

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!!

Looking towards the future

Part of me as a person, is someone who works and earns my own money. Being on benefits for me is a failure of my ability to do this.

I am currently in a position that I am reliant on the help that they offer. I am home looking after my two children, now on my own after my relationship broke down earlier this year.

But I want to do more……

It is not that I do not love being at home, or that I don’t love my children, but I need more. I have a strong work ethic and I want to be able to support my children more and allow them to have nicer things.

My career before my sight started to deteriorate was in design, a career that yes I could have continued with with the correct support, but one that I felt that my heart had fallen out of.

I have also worked within administration and with charities that deal with sight loss. But although I ave an eye condition and I enjoy the volunteer roles that I have with Open Sight and Guide dogs, my sight is just part of me.

So time to look to the future and to see what I can do for my next career.

Last year I started this ball rolling by doing a taster course in counselling. I fell in love with it as a subject and as a possible career move. And despite my initial concerns my sight loss has no affect on me being able to support others. It just means that I need to do things in a slightly different way.

This year I have been working towards my ABC certificate in counselling. Class makes up just 4 hours with 8 hours at home, however for me this is more like 12.

Studying and all that comes with it has been a learning curve in more ways that just the subject! I have learnt a lot about how and when I can use my eye’s and sight to get the most out of them, without creating negativities for myself.

An example of this, is using the computer. As I have said before, I am a Mac user and as such, have a MacBook Pro and iPad. Both of which offer fabulous accessibility as standard. (maybe thats another blog in the making!) But when I can use my Macs is becoming limited.

If I want to be able to close my eyes and wind them down to sleep, I must not be using them after 9pm in the evening. Even with the speech software, I still try to use my remaining sight, its a natural reflex. If I have reading to do, this must be done even earlier in the evening or preferably during the day.

So, study is nothing like the all-night, stopping only to use the loo sessions that I had when at university just 10 years ago. Which is a real marker for me of the deterioration that has occurred.

So, my work is done with an hour here, an hour there and also a stopwatch. Because as with most people when I am deep into something, time can run away with me and with my eye’s I do not feel the affects immediately, but it is often a few hours after.

But this has not put me off.

Just this week, went in the application for the DipHe in Counselling. Its a whole day at Eastleigh with 2 1/2 days of home study. The ‘perk’ of this course is that I can apply for assistance in the form of a scribe for the time in college. I can also apply for a grant to help me to upgrade my Mac, to a larger screen as my existing mac is becoming a struggle. Its not going to be easy. This I am in no doubt about, but this is where I want to be.

So, as I can no longer do late night studying, I will have to give VERY early mornings a trial instead.

Life

It happens around us, it creeps up around you and before you and before you know it, lots has happened and you haven’t written a single part of it down.

So here I am, writing it down.

Bear with me, there is training for the great south run to catch up on, a new gym experience, my guide dog, gained independence, the fun of benefits and me finding out about me. So over the next few days there will be a fair few updates, some will be archived depending I when they occurred, so have a good look around.

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

Employment and support allowance

Having suffered with my employer and my depression caused by my continued battle with getting to grips with my deteriorating eye condition and having to learn to use a new form of accessible software that I didn’t feel ready for, I had been on long term sick leave since October 2012. In February this year, after a lot of thinking, adjustments and not very successful adjustments, I was let go from my position on medical grounds.

This did not in fact cause me any great upset, as I had come to the conclusion that my current role was not the one for me.

It was the thought of accepting my eye condition and applying for the government benefit, for people like me who are unable to work…. Employment and Support allowance, often referred to as ESA. Read more

It sounded so simple…. Then you put me in the mix!

As well as blogging I keep up to date with friends and family via my Facebook account, the other day after what had started out as a fun conversation I put myself on the line and admitted to having been forced to admit that I had a limitation.

Yes…. I hear you all say, everyone does.  But this limitation wasn’t even something I had ever considered before, or even wanted to do.  And in the grand scheme of life is very unimportant and changes nothing.  But I started to bother me.

I thought the easiest way for you to see what I am talking about is to copy the post in below, including the comments.  As to protect the identity of my friends I have re-written the post and named them F1, F2 etc, etc.

I would be interested to follow on this conversation further, so feel free to comment yourself underneath on here.

THE STATUS:    An honest conversation with a trusted friend has made me realise that with my sight, there are some things I just won’t ever do….. Some I can get around, fudge through in a different way with help & support.  But today the realisation that there is something I won’t ever do, silly thing is that its only a small thing too…. But feeling 🙁

 

ME:  And it wasn’t even anything I though would bother me, it’s the realisation of limitation not the thing I can’t do.  Even my stubborn streak won’t get me through this one.

F1:  You will get through it hun!  Been there – spend some time wallowing in self pity and then equally important pick yourself up and get on with what you CAN do!

ME:  I know-its the kids, home, college, work is all that matters, but it’t limitations of not being able to do something so very simple for others——-even a small child can do it!

F1:  Yep!  Let yourself spend some time feeling sad, don’t try and ignore it.  Have a bath, get in you pj’s and bring out the chocolate!

F2:  If you don’t mind me asking, what is it?

ME:  Its very silly and ridiculous…….. Juggling!!!    Having looked after Miss Key the other evening while Mst Key & Simon Key did a juggling with scouts.  Mst Key came back telling how great it was & how his dad could teach anyone to do it, it never interested me, bit it set the challenge & the thinking cogs working.  So had a good talk about it & the answer was NO… I need to be able to follow the movement, although I do have some vision.  I have no ability to judge distance or quick movement.

Its not the juggling that is the issue, its the fact that it points out a limitation.  For example, I am not allowed to drive a car (legally) & have a driving license.  But  I can physically drive a car, on private property with the right support.  I know how to do it & can do it.  Its a silly thing, but its these little bits for me that stand out as a limitation.  That having discussed the options of making it accessible isn’t there, if I wish I could play blind football, blind cricket, if I so desired, silly isn’t it?

F2:  I don’t see why you can’t try??  Think of how much fun it would be.  Just make sure you use soft balls so not to knock anyone out though! 🙂  Nothing is impossible, we place on ourselves our own limitations so if you say you can’t then you won’t, if you say to hell with it I am going to have a go…. then you have got nothing to lose and if you prove yourself right they you can say hell at least I tried!!

F3:  I think the thing is that you have to have a base to start with.  If you know that it is something that might be nearly impossible to do before you start, then if you still want to try then you don’t set your hopes up too high.  The bonus is that i you did achieve it then it would make it all the more special. let me have a think, I’m sure Mst Key is right.  He tells me enough that he is 🙂

F2:  Nearly impossible! See not impossible at all 🙂

F3:  just have to be realistic.  Thats all I’m saying, what the hell, I have been learning 5 for 6 years !!!!

F2:  There is being realistic though and shattering poor Theresa’s juggling dreams.  I anyone can you can Mr Key 🙂 xx

ME:  Oh dear, what have I started?  It’s not the juggling that is the point here.

F3:  Well it kind of is and isn’t.  I think the point is that you wont know what you can and can’t do till you try……

F2:  Excellent!  I look forward to hearing your juggling tales Theresa and Mr Key.

ME:  It’s got taken all out of context, I don’t really want to juggle.  I hate the word ‘Can’t’ I know what you meant when you explained it, no it’s not impossible, bit it just highlights the fact that I can’t just grab a set of balls & get going.  You said yourself that you need to think about how!  It’s something highly skilled when you get to your level, but at the same time it’s very basic and simple at the start point.  And I can’t just get on and have a go.  This sees me start thinking & analysing other things I can do or can’t do & the spiral starts & thats why it was never about the actually juggling… Hence why I never put it in the start of this post!  I appreciate the support & kind words from you all.  I’m not as has been suggested (by pm) fishing for sympathy or compliments on what I can do or try.  I wrote this because it was how I was feeling & at that very same moment on looking at Facebook it just felt right to put into words, stop it just being in my head & driving me even more crazy!

F3:  Nope no taking it back now lol.

F2:  Nope, you can’t back out now.  Learn to juggle woman then you can pass your juggling wisdom to me 🙂

_____________________________________________________________

It makes for this being a rather long blog, but I hope it gives you an idea of my thoughts.  Juggling isn’t the issue for me, its not even something like I said earlier that is of great interest.  It merely highlights that for me to do some things, I need to set myself up in a very different way than others.  Have to alter the way in which I do things.  My friends were being helpful with their comments, I am always open to constructive criticism.

I grew up not seeing myself differently to others, but now I do…… I feel so very different.

And this is the point.

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