What Can I See? Living With An Eye Disease On The White Dot Syndrome Spectrum: The Vision Diaries

If you haven’t read my story about losing my central vision in one of my eyes, you can read it by clicking here.

I am often asked what I can actually see, because I have a rare eye disease that falls under the white dot syndrome spectrum, originally thought to be AZOOR, but currently without a name.

I have tricked several opticians into believing my vision is fine, because I can pass a regular field test without issue and my visions appear just fine when I go in for a check up and read the letters on the chart on the wall.

Describing your vision to someone else can be quite difficult, but I have documented my whole journey with losing my vision in my right eye and I feel like, a couple of years on, I can pretty accurately describe what my vision is like now it is stable.

This could still change. I could wake up one day and be back to the first day of vision loss, where I went blind in both eyes. I could lose some vision in my left eye. But, for now, this is what I can see.

I am missing my central vision in my right eye. If I look at someone sat in front of me, with my left eye closed, straight facing me, I probably can’t see your left eye, nose, cheek or left side of your face, depending on how close you are to me. When my left is open, my brain can pretty much fill in the gaps, but it’s hard work.

I also have patchy vision in my right eye. The only accurate way of describing my visual fields is to ask you to think of a leopard print pattern. Again, if I shut my left eye, I have patches in my right eye that mean I am missing small areas of vision all over my line of sight. These areas are very small, meaning my brain can fill in the gaps, but there are lots of them, covering all my vision. Some are slightly larger than others. I can pass a visual fields test at the opticians (the ones they do with the flashing lights), because these are very basic tests, with the lights spread quite far apart. However, with the more complicated tests at my city’s large specialist eye hospital, they were able to see how poor my vision was on a special field test that took a few hours.

I can no longer see straight lines. I find it hard to work from an excel spreadsheet and I can’t follow charts where you need to read along lines. Sometimes if I’m reading a book with quite a small font, I may accidentally skip to the line above or below half way through a sentence.

I can’t read text that is sideways or upside down anymore. I think this is because I can’t see in straight lines.

I am very light sensitive. I use a very strong blue light filter on my computer that makes my screen literally orange, with the brightness turned all the way down. My phone brightness is always on the lowest setting. I struggle to go outside in summer without sunglasses on – it amplifies my blind spot to the point where it leaves me almost completely blind in my right eye and I feel incredibly vulnerable. The same thing happens when I walk around the ‘lighting’ section of a shop, like B&Q where they have a display of lightbulbs and lampshades.

My left eye is tired. This means I need a larger font on my phone or PC at work. Sometimes, when my eyes are very tired, I can only read short text messages, because I can’t focus my eyes very well. I can’t watch telly very well in the evenings and I struggle to read later on.

I wear glasses. This doesn’t fix the vision in my right eye, but it helps with the strain on my left eye. This also allows me to see more towards the end of the day.

To read about my daily life with my eye disease, please click here.

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The Vision Diaries

14 Comments Leave a comment

  1. Diagnosed with azoor and Graves eye and thyroid disease. After I got covid in August the viral load must have been too much and I’m now so fed up and miserable.

    Any news of things that have helped apart from steroids? I’m on antivirals too…for the past month thinking of asking for ivermectin as it may do something am aldi on medical mediums protocols xxx

    Liked by 1 person

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