Tag Archive for Missing it

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 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.

Missing the Obvious

I often feel silly and clumsy as I am totally and utterly able to miss the obvious.  My condition is such that my field of vision is reduced and then what is left in the reduced bit is incredibly short-sighted.  if I’m not focused on anything I can see a lot-or rather my brain tells me that that is the case.  But as movement into the mix and I actually see very little.

This is me, there is no hiding the fact, but it does mean that when looking at a bigger view I can miss the obvious because I’m focussing on the wrong part of it.

I can often miss someone or something right in front of me, often a friend or family member waving.  I can also be blinded by too much information and not see anything even though technically I can see it all.  This is where my brain and memory comes in..

But then that’s for another blog!

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