As I promised, the next blog would be more about the conditions that I have.
As you know I have been short sighted nearly all my life, I managed with milk bottle bottom glasses from the age of about 4 right up until I was about 13 years old, then I was introduced to contact lenses.
I had and still have gas permeable, hard lenses. They are truly my life line, without the vision that these tiny pieces of plastic give me I wouldn't be able to manage day to day things, in fact it makes me feel rather claustrophobic to think about how the world around me would shrink and darken. Soft lenses, although they are much more popular these days, don't give me anywhere near the vision the hard lenses do.
I wear my contact lenses all day every day, my glasses are a very well made pair of Rodenstock frames with some incredibly engineered plastic lenses, they are now 20 years old, the dog, when he was a puppy, chewed one of the arms and they are now looking rather well used. I always find it amusing when I take them with me for sight tests, the ophthalmologists practically wet themselves with wonder at the quality of them. Twenty years ago they cost me £500, so its no surprise that a couple of years ago when the hospital said they thought that I should try and wear glasses more often during the day and give my eyes a rest from contact lenses.
Specsavers made me a new pair of glasses, which certainly were not to the standard of my old ones, but the prescription had changed so a new pair was manufactured at the grand old price of £700!
I tried my hardest to wear them for over a week, but something in my brain just wouldn't accept them and my sight just wouldn't settle down, making me dizzy, disorientated and they gave me terrible head aches.
So I took them back, the ophthalmologist looking after me said she thought that might happen and gave me my money back, saying something about my brain not being able to adjust to the new vision from the new glasses.
I was much happier with my contact lenses back in and my old glasses for emergencies and the rare occasion that I am in unfamiliar surroundings.
August bank holiday weekend 2011, everything changed and I ended up at Moorfields A&E, and for the following few weeks I returned to the hospital every couple of days for tests, and the results were...a massive deterioration in vision of the right eye, stippled hyperflourescence and subretinal fluid.
I didn't really understand what all this meant at the time, only that I would be starting a course of Avastin injections immediately, luckily, in the end they sent us home to give us time for all the information to sink in and think about the risks of the injections, the risks of not having the injections out weight the risks of having them, so we returned three weeks later for my first injection.
Now, six years down the road, I realise just how little information was actually given to me, maybe I didn't want to understand, but I sure wish I had asked more questions, and tried to understand better. I know that the injections were to stop the leakage, this was going really well and I had six injections before I had a haemorrhage, and then the injections stopped as it was no longer safe for me to have them.
So July 2012 I was registered as severely sight impaired (blind) and was given some leaflets and packed off home.
It seems I have a label of some thing called...
Myopic Choroidal Neovascularization, MCN for short, which is a condition that occurs in people who are short sighted, the retina becomes very thin and stretched due to the increased size of the eye. Blood vessels from the Choroid, the layer of eye behind the retina, start to grow into the retinal space, the blood vessels leak blood and fluid and cause severe permanent sight loss.
MCN looks something like this...
Nice! So the injections stopped the blood and fluid leaking, but not before some damage and permanent sight loss had occurred.
Then, Age-related Macular Degeneration...usually occurring in people over 50 years old, but I was 38! anyway, it means that the Macula is damaged and I cant see things clearly close up or far away, this only affects central vision, but explains why I don't see peoples faces, and I tend to recognise people by their body shape.
Then added to all that loveliness, I developed big fat permanent floaters that distort the vision I have.
My right eye has no colour, I mean to say I see no colour, If I cover my left eye, I see everything in grey, sometimes a bight colour will stand out, but I have very little vision out of that eye.
So all the above conditions are in my right eye, and in my left I have short sightedness as well as age-related Macula Degeneration and permanent floaters, although they aren't as big as the ones in my right eye.
Sometimes I find myself wondering if it would be easier if I looked like I had sight problems, my right eye is smaller than my left, and shows more when I am tired, but overall I look sort of mainstream!
The conditions that I have in my eyes are life changing but not life threatening, so I don't think about them, I don't like people asking me about them, I still struggle with where I am, emotionally, with all this. Some mornings, when I wake up, I lay there with my eyes closed praying that when I open them I will be able to see clearly, but its never going to happen, so I get on with life the best I can.
The hardest thing for me will always be asking for help, I hate admitting that there is something I cant do.
There is so much more than just having sight problems, and it is often all the stuff that comes with it that gets people down, and its a long hard journey of acceptance and willingness to ask for help, support and understanding.
I now see that there are so many very large gaps in support for people with sight loss, and I think its partly because the world is ill educated on disability, I mean when was the last time someone stopped you in the street and asked you if you about your condition? What happens if someone sees a person in a wheelchair, they avoid them.
My daughter and I were in Stevenage a few weeks ago, and while we were standing in a shop waiting for our photographs to be printed, this guy, who was visually impaired and his guide dog joined the queue, well he sort of joined it, you could tell he was uncomfortable so he sort of edged his way in, my daughter and I were at the front of the queue, the next minute I could hear all this fuss and feel my daughter tense up beside me, so this woman who was standing in front of the guide dog turned and reached down and started to give the dog a big fuss, the dog for all its training, was overwhelmed and lurched forward for more fuss from this woman, despite the fact that the dog has a bloody great sign saying not to do that one thing, she was in love a dog mode. The dogs lurching pulls the pour guy forward and very nearly sends him flying, instead of saying, please do not touch the dog, he was clearly upset and didn't want to upset her so he just asked if she wouldn't mind telling him when she was going to fuss the dog. My daughter by now was furious, and I was also shocked at the complete disregard for this guy or his dog, she didn't give two hoots that the guy was blind or that the dog was working. She wanted to fuss the dog and that was what she was going to do. She then bombarded him with a thousand questions about the dog, but the man was still trying to regain his composure after being nearly pulled over as well as thinking about what he had come into the shop to do.
By now my daughter had started to mumble things under her breath about the woman that were not too polite, and I have to say I agreed with her, I totally wish I had the balls to say something to the woman but I needed to get my daughter out of the shop before she grabbed hold of the woman and pushed her over to see how she liked it, this is just a flimsy example of how people ignore what is in front of them, for what reason? who knows? Embarrassment? Ill education? Ignorance? Selfishness?....I don't know, I will leave it to you to decide.
Speak soon xx
No comments:
Post a Comment