My eyes are bad today. I seem to be seeing everything, even this screen that is inches from my face, with an extra layer of fuzz than normal. I have been at a loss as to what is really wrong with my eyes for years. I can remember being 25 and getting my eyes tested for the first time in my life. The optician said that I needed glasses but only for doing my beloved embroidery and needlepoint. I can still remember though putting them on and looking out the window and being shocked at the difference they made. It just didn’t add up. How could glasses that weren’t meant to be for distance actually change everything? I only used them for their designed purpose and thought little more of it. When my MS was diagnosed one of the tests they did was for changes in my eyesight. At that time, they told me that my MS was affecting my left eye, but I knew that it was my right that was the worst. They were extremely vague in response to my questions so I headed off to the opticians from second ever visit. This time I left with two pairs. My distance eyesight, as I knew, wasn’t perfect, but they still didn’t seem to think it was as bad I was telling them it was. I once more went through the test, on with the glasses while standing at the window. Suddenly I could see leaves on the trees and the green mass I was used to, was grass, with individual blades.
I was beginning to believe that I was just a fussy person who wanted the world in what they now call HD. I didn’t feel fussy, I just wanted to see. This time I used them daily, as there was the world out there that I felt I had been missing for years. Being able to actually see the call centre I was in charge of, from one end to the other, was also extremely useful. Within a couple of years, there was a dramatic dip and my neuro sent me for further test. Everything that I thought I had seen in the previous test, was still there, but worse, especially in one test. You are sat looking into what looks like a black box, a speck of light appears and moves across your field of vision and you have to say when you can see it no more. The hospital option told me there had been a change in my macular degeneration. I stopped him there as I didn’t have a clue what he was talking about. Apparently, they had found it in their original tests and no one had actually told me. As always seems to be the way, despite him going over it with me, by the time I was at home, I forgot it all and had to look it up online. What I read made perfect sense. I have dry macular degeneration and I was losing the central vision in my eye and it was going to be a long slow decline until worst case scenario, I would lose it totally. Going blind is something that any of us put high on our must do lists. I think it was a bigger shock than being told I had PRMS. When I got my PRMS diagnosis, I had had six months to get used to the idea that I probably had MS, this came straight out of the blue.
So here I am with Optical Neuritis in my left eye and Macular Degeneration in my right. I’m short sighted in both but my left is worse than my right and both of them seem to go through phases of getting worse then settling back again. Add in the normal ageing of our eyes that usually means you see less and less and sometimes it feels as though I really can’t win. Whatever way you look at it, I am slowly going blind and I will see less and less no matter what happens. This morning, well one of them is playing up, as my usual vision that means faces on the TV are blurry and not clear enough to make out when they are small or in the distance, now even those that nearly fill half of the screen are unrecognisable. The TV for a long time from here at my PC has been a colourful radio, that supplies clues in shape as to what is going on. Eyesight is something that we take for granted. We open our eyes and there it is, a detailed world filled with colour and movement. We use it without thought and never, just like the rest of our health, expect it to one day to not be there. Right now I can manage just as I am, but when out of the blue it decides to give you a reminder of it deterioration, well you have to think about it.
I know that I have never in this blog written all the details that I just have before. I guess it never seemed important enough as my glasses have been good enough to boost the vision by correcting my short-sightedness. Lately, though, I have noticed more and more just how poor it is. Our TV’s demand that we interact with them. Messages in tiny writing appear and if you don’t react instantly, it will do something really annoying. What they don’t allow for is people like me. One of those messages is unreadable, glasses or not. By the time I have stood up and made it over to the TV and stood there long enough to squint at it and make out what it want’s now, it has decided that I’m not here and has just done it. More and more we are being expected to interact with electronic boxes. It used to be simple, we had what was once called white goods. They did things for us and they did it without annoying us. Look online and you will find more and more of these once servants, now have screens with tiny writing and require connection to the internet so they can speak to the smartphone I don’t have. Just buying a fridge that just keeps food cold, is getting harder and harder, some want to do my shopping for me as well. I fear it is going to just get worse. I don’t want to hold a push button conversation, or even worse a real one with my washing machine, I just want clean clothes.
I used to be a real tech lover, I loved the idea of a push button world where life was sleek and simple. I never thought that it would be my eyesight that would turn that love on its head. The modern world is a hard enough place for someone with a debilitating physical disability. I used to think that technology was going to be my saviour, that all these new gadgets that were piling onto the market would mean that no matter how disabled I got, I would still be able to do what I wanted and needed to do. Add in the loss of eyesight and it isn’t going to get easier, it’s going to get harder. Give me any day a simple dial that you set a given angle and one button to press any day, I can learn that eyesight or not. I know already that I am good at walking around the house in total darkness, I can actually get around the bedroom, kitchen and bathroom with my sleep mask on. I might still be hesitant, but I can do it. Some might think that is a strange thing for anyone to even try to do. When you know you are going blind, it’s a sensible precaution. Having experienced wild changes overnight in the past, well you never know what the next morning might bring. Strangely it is my PRMS that might just be my saviour. The Macular Degeneration will get worse, I might or I might not actually go blind, but there is a chance that the Optical Neurosis won’t get worse, as it’s rare for MS to cause blindness.
Disability comes in many forms, I don’t know if you can truly say one is worse than another. I don’t even think it is possible to say which is the most life changing. Everything that happens in our lives is relevant to where we are and how our lives are at that time. What I do know is that I fear going blind more than any of the other things that have happened, are happening, or might happen.
Please read my blog from 2 years ago today – 13/08/2013 – Three times plus
Autumn seems to be arriving very early, this house is freezing already and well I was hoping that the summer would last much longer, if just for the electric bill. I am honestly siting here with my feet wrapped up in my sleeping bag I keep for the coldest winter days, and if I am being honest…..
I TOO,AM TERRIFIED OF GOING BLIND.YOU ARE VERY SMART; PREPARING FOR (I HOPE NEVER HAPPENS), BLINDNESS. I HAD TO LAUGH, WHEN I PICTURED YOU TALKING TO THE WASHING MACHINE. THANKS, I REALLY NEEDED A LAUGH TODAY.
Oh how I feel for you with everything you are enduring. I began losing my vision ten years ago due to a macular hole in my left eye. Here we are 10 years later and I’m legally blind with vision that can only be measured by hand waving. I’m a tech lover as well and I’m so thankful for the many advances that have been made in the area of vision loss. With screen readers, magnification software and audible gadgets, though it takes some time to get used to them I can’t imagine what it was like for those in decades past prior to the technology of today. I’m not familiar with Optical Neurosis however there are resaerch organizations who are very close to a breakthrough on Macular Degeneration. As it stands right now the medications are helping to delay the progression of the disease. Here in the states The Foundation Fighting Blindness has raised tons of money specifically targeting researching cures for blinding retinal diseases. When you have a spare moment you can check them out online as they have quite a bit of resources. Another group that’s been really helpful to me is visionaware.org. This group has peer advisors who write articles of specific interest to those new to vision loss.
Hang in there, you are not alone. ~Steph
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