This week however I was faced with an issue I never thought I'd have to face - that my vision is getting worse. I always assumed that unless I developed something like glaucoma which I am monitored for annually, my sight would stay pretty stable. I thought this because as a baby I had both my lenses removed because I had cataracts. Back then they didn't have the technology to implant new lenses so I've always just used glasses and later contact lenses to help me see. Even with glasses or lenses my eye sight is pretty rubbish and I am registered as partially sighted.
I don't see well enough to drive and it is hard for me to explain to others how I see as I don't know what to compare it with, as this is all I've ever known. The easiest way to explain how I see the world is that it is like an impressionist painting (colourful, blurry, and quite beautiful) but as I don't have a lens I can't focus and so my sense of perspective or understanding of moving objects is totally impaired. With my contact lenses in I can read the top 2 lines of the eye test chart and that's it. Well that's what I could read.
Over the last 5 or 6 years I've been complaining to my consultant at Moorfield's that my night vision was getting worse. They thought it was due to the fact that my pupils don't dilate very much, so light doesn't get in to the back of my eye. I also felt that I wasn't able to read small print as easily as I used to, I get tired a lot more easily and get headaches from reading which I never used to.
This summer I complained that I was seeing strange brown or black shapes out of the corner of my eye - not like the normal floaters I've had all my life though they are getting worse too. So I was booked in for an ultrasound on my right eye.
On Wednesday I went for the ultrasound and then saw my consultant. Before I saw my consultant I saw a junior Dr who after getting me to read the eye chart looked worried. I wasn't reading as much as I used to and this was a trend. He looked back at the results for the last few years and it showed that steadily I was reading the letters less and less accurately and this time I couldn't make out the letters on the 2nd row at all. He looked worried.
My consultant explained that I had a lot of scar tissue in my eye from the operations as a baby and also "opacities" caused by the scar tissue on the back of the remains of the capsule in my eye which used to hold my lens. The symptoms I am experiencing are because the scar tissue does not allow enough light into my eye and also scatters the light in a strange way which is why I am getting so much glare from lights particularly at night. The less light that reaches the retina the less I can see.
I basically have the symptoms of a cataract! The one thing I thought I could never get. No lens then no cataracts again.
My consultant had his serious face on and asked if I'd like to see the low vision aid clinic. That made me realise that this was something serious. He also said that he could potentially do an op to help get more light into my eye but he'd rather monitor what happened for a bit. I've had this discussion before about the op to remove scar tissue - before it was causing me any problems. Its not as straight forward as usual laser op which takes 15 minutes. I have nystagmus which means my eyes wander about, using a laser on a moving target isn't my idea of fun! My consultant knows that I'm not keen on having other operations if I don't have to. There are of course risks with any op, and this one could end up making my sight worse rather than restoring it to what it was. What it was, wasn't much cop in the first place so is it worth the risk?
It turns out that my other eye also has this scar tissue and is also developing the same problem.
It's an interesting dilemma for me to face - I never thought that my sight could get worse so I never thought about what I'd do if it did. My consultant asked if I'd like to be referred to the low vision aid clinic. I explained to him my job and how I'd worked for the RNIB in the past and used lots of technology to help me. I'd helped others use low vision aids to help them remain in work.
The things that have struck me most after learning about all of this is the fact that I didn't make more of a fuss about the fact that I felt that my vision was getting worse. I'd mention it at the hospital each year but wouldn't push the matter. Sometimes I'd tell myself that it was all in my head and that my vision was the same as before but I just wasn't coping as well. I really convinced myself of this. I was hard on myself saying that I just needed to be braver about walking about in the dark etc.
Now I know that it wasn't in my head I actually feel relieved and I'm prepared to make changes now so that it's easier for me to get about. I've bought a small maglite torch to carry in my handbag and use at night. I'm more prepared to use taxi's and take things more slowly when walking about unfamiliar places.
I am just going to have to wait and see what happens with all of this.
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