Tag Archive for Nystagmus

Reflections

Photograph of Tee, Weston a grey t-shirt saying “climb on” stood in front of a black and white canvas of a misty hence in Greenwich Park

Photograph of Tee, Weston a grey t-shirt saying “climb on” stood in front of a black and white canvas of a misty hence in Greenwich ParkThis November it will be 10 years since I was registered SSI (Severly Sight aimpaired aka BLIND) it was the appointment with my consultant that EVERY seemed to change, yet at the very same time NOTHING changed.

What I mean by that is that my eye sight didn’t actually change at THAT appointment.  I  simply became aware of just how bad it was.

Having had my Nystagmus (involuntary eye movements) and having worn pretty strong glasses for as long as I can remember my sight had never been great.  But in terms of the distance I could see (I have always been short sighted) had changed very little.

Rightly or wrongly so; when I was in my early teens I had been discharged from the consultant at the hospital, where I was given into the care of my opticians.  With the strength of my prescription And it was through this team that in July 2008 they used their new camera equipment to try getting a photo of my retina.

My optician wasn’t happy with what she saw, but she couldn’t explain it to me as she explained it could simply be that with my eye movement the photograph wasn’t actually true.  So she referred me to the hospital for a thorough check up.

Having been rushed in as an emergency after the hospital were concerned I had detached my retina (a common issue that if caught early enough can be reversed) I discovered that this was not the case, the registrar discovered I had cataract in both eyes, I will always remember what she said;

With laser treatment we can remove them and that would actually improve your vision.

But as she was simply confirming I hadn’t detracted my retina, she didn’t actually comment on the fact that my retina wasn’t ‘complete’.

So, you can probably understand my total shock when I returned a few weeks later to see the consultant to be given the news of just how bad my sight was.

I did have cataracts (my left eye had been diagnosed when I was 12) But the laser surgery suggested wouldn’t be easy and would have very little affect at this time.  And actually with my retina dying away my sight would actually only get worse.

Many people ask me

How did you not realise you were going blind?

Its simple, the changes in my peripheral were suggested to be something that had been happening steadily for many many years, and as I only likely lost a small amount at a time I didn’t actually realise.

I did notice ‘little’ things after my daughter was born in 2006, like how I was bumping into things, like low level tables or benches.  But I put this down to ‘baby brain’

I had also noticed that it was taking me longer for my eyes to adjust to light changes; like walking indoors after being out in the bright sunshine, but because I had reaction lenses this went in-noticed as an actual change in my sight (as I assumed it was just the glasses)

So…… Reflections.

I have decided I want to celebrate this anniversary.  I want to acknowledge that as me I have changed from the person I was before.  It hasn’t always been happiness and celebrations, but I have tried to embrace my blindness (and now deafness)

It may sound like a cliche

But in these last ten years I have had so many amazing opportunities, so many doors open to me.  I want to move forward with me and celebrating the good seems the best way to do this.  I am human, I can’t be postmitive ALL THE TIME.  But in this instance I want to look for the good, rather than dwell on the bad.

But the question is (and this I hand over to you my readers) ….

How should I celebrate???

Less than 5 degrees looks like…

A question I am regularly asked is “What can you see?”  It’s actually a tricky question to answer, because I can answer it medically (with percentages and terminology) or literally (I can see your face, but not the colour of your eyes!)

Facebook has been throwing around an image that may help.

My vision currently sits at just under 3 degrees (some call percent) central vision, with nystagmus (involuntary twitch) and a distance vision that is classed as ‘finger counting’ (I can’t even read the top letter of the eye chart, just fingers that the nurse holds up-as long as she does this against a contrasting background)

Complicated right?

The image that many friends have shared lately on Facebook is quite helpful:

Images shows visual field on a semi-circular diagram, breaking down the different parts of the view. With the centre 5% highlighted and standing out from the main diagram.

This diagram details what an eye can see while looking forward and focussing in on a spot or image, without moving the eyes or head the majority of people will have a good range of ‘far peripheral’

where as I have just the central vision (just 5 degrees of overall sight) and thus stands at less that 3 degrees for me.

Despite common misconception this doesn’t mean that the rest of my vision is black or dark, it just isn’t there.  Many RP (retinitis websites show photographs for a sighted person and for an RP sufferer.

Two images side by side, left image is of a lake with waterfall surrounded by autumnal trees. The right side of the image has all but a small proportion of the image blacked out, just showing he waterfall part along with the caption "view for someone with Retinitus Pigmentosa

They show the RP view of the same photograph with the outer area blacked out, many friends took these images literally I thought I saw a lot of black.

I can see the whole picture; only it takes concentration, scanning and an element of memory to get the same result.  Or what I believe to he the same result as someone without my eye condition.

 

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