Which is worse?

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…..

Sharpening the focus

A bit of an unexpected early start this morning so I will probably allow myself some extra time asleep this afternoon as I lost an hour, just one of those things nothing dramatic. It is actually kind of nice to be looking at the clock and seeing how far ahead of my normal timings I am, a fall back to my years of working, I always loved having all my morning report for the company finished a head of time as it gave me a boost for the rest of the day. I remembered yesterday to turn up the heating before I went to bed, as the forecast is on the interesting side for the next few days. Not intentionally nearly all my homes bar two have had storage heaters, and although you have to work 24 hrs ahead when it comes to the temperature you want your home, I love them. Our flat isn’t that big but with it being Victorian we have wonderful high ceilings, so a lot of the heat goes upwards and settles there, but I don’t know many people these days who could heat all of their home from one heater and who’s fuel bills are under £70 per month for everything. I actually expect our payments to go down soon as I have cut the heat a lot this year, but we will see.

I have those stupid nerve pains shooting through my head again this morning, they are really annoying beyond the actual pain levels. They fire like lighting bolts and make you jump and cringe, not advisable as a smoker as I have sent a couple of cigarettes flying already this morning. They also have a habit of causing a shiver like sensation down my spine so they aren’t confined to my skull and inwards, other than that, it is a reasonably average day health wise, so a smaller tick than yesterday but still a tick. I think I really need to call the opticians for another home visit as I am noticing more and more that my vision is blurred again, even with my glasses on. I really would like a pair that helped me here at my computer, as at time it is hard to see clearly what I have just written, I have tried increasing the font size and magnification but even then there is still this fuzziness that I would like to be without.

I stood on the scales again this morning as I haven’t done so for a few weeks and despite the extra really rich foods we all eat over Christmas I am still loosing weight. Slow and gradual and totally unexplainable, and still totally welcome. My food intake as far as calories go hasn’t really changed, so finding that my weight is going down is a little odd, but not worrying. Anyone who has limited mobility will tell you that just like me on goes the weight, the ultimate proof to all those out there wanting to loose weight, that cutting down your food isn’t the answer alone, you really do have to do more as well. Since my weight started going on I have been on an almost constant diet, staying away from all the things I shouldn’t eat. But no matter how I restricted the intake, it kept going on, until now. I am still waiting for my return appointment to go back to the hospital for a follow up on what the problem with my gut is, I know I will be weighed there so I will add this drop onto my list of odd things that are still happening. All the other strange symptoms of pressure, discomfort and pain are all still as they were, I have now been living with it all for about 10 months. I did think I would have heard before now, but we all know the waiting game with the NHS all to well.

Small blessings

Form my living room window, with my glasses on I have a view of Glasgow that fits to the size of the rest of my world, limited. I was sat on the settee watching ‘Country file’ last night, I need to wear my glasses as otherwise my cleaver little right eye would fuzz up everything, a huge advantage on some of the programs transmitted, but I wanted to watch this one. I only need my glasses for distance so I don’t normally wear them during the day. Someone must have opened or closed a window as there was a flash of sunlight as it bounced around the street then settled. I looked out from the room for the first time since the longer daylight hours had begun and spotted something I haven’t seen for years. This is going to sound just a bit silly but I saw a train.

Before I became housebound I really did need my glasses changed but like so many people I just kept putting it off. I have never driven and I didn’t need them for much so it wasn’t high on my priority list. Then it happened, I couldn’t get to the opticians, over a four year period I had slowly been able to see less and less, I stopped even putting on my old glasses as they too had lost their ability to help. I couldn’t see anything written on the TV screen unless I was 2 feet from it, I had actually got to the stage that I brought a stool through from the kitchen so I could sit close to it and program the shows to record. I drove Adam nuts asking him to read out thing on screen as getting up on down wasn’t and isn’t that easy. I could see so little that I saw no point on sitting with Adam on the settee as I relied more on my hearing than my eyes to follow a TV show. Right now sitting at my PC I do the same, the TV is on and I call it watching, but it’s not, it just so happens that my radio has pictures on it. I really thought that I was slowly being condemned to moving into a almost blind world and I worried how much of my eyesight was going to vanish, yet I could do nothing about it.

My knight in shinning amour appeared one day at the beginning of October last year. I can’t remember what program was on all I know was they spoke about mobile optician, it took me less than 10sec to Google and to my surprise their they were and even more surprisingly there was at more than one in Glasgow! With in the week I had new glasses. A male optician and a young girl came to the house with all their kit tested my eyes and it was simple and quick. When the glasses arrived I spent most of the day wondering round, looking out of windows and being amazed by what I could see. Best of all I could sit with Adam and I could watch a program with him and I do mean watch.

Winter arriving meant the closing of the curtains before sunset so my evenings on the settee were evening of darkness, yesterday it was light and it was the first evening I had been sat there when the train passed by, it is too far away and there are trees and houses which mask completely the sound,so it passes by unheard, I had actually forgotten that it ran anywhere near the house, so spotting it through the trees stunned me for a second. I stood up and went to the window and really looked out, up and down the street, across the river at the trees and on through them to the large expensive houses that most dream of living in, I was at that moment just happy to see them.

So many things are parts of us and our lives that we simply forget they are there and yet we use them daily. I know that my right eye is of little use now, apart from some tiny clear areas that I see clearly through, but those spaces are closing all the time. Glasses correct my left eye for now but of all the things that MS could do to me that is the one I fear the most. A few years ago I woke up one to find that my left eye was worse than my right, no clear areas, just total fuzz. I sat here at my PC making the possibility of seeing anything less probable by crying. It took a couple of days to start coming back to normal and a few more to return fully. Just like my left arm, I take it as a warning of what the future will bring. In some ways I am glad that both have shown me what can happen as I am now more equipped to deal with it and appreciate more how great it is to have them working almost correctly now.