How My Rare Eye Disease AZOOR Affects My Daily Life: 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 have acute zonal occult outer retinopathy and my vision isn’t ‘normal’. I recently wrote about what I can and can’t see – you can read it the post by clicking here. I covered what I can actually see, but I didn’t speak about how my life is affected by my loss of vision.

I am very lucky that the amount of vision I have lost is relatively small, but AZOOR is a progressive eye disease. In some cases, I am told that it can get better. I am not one of those cases – my missing parts of my vision have stayed pretty much the same since my vision loss. My doctors have told me that my vision loss may change at any time. I may lose more vision in my bad eye, or some in my good eye.

My eye disease is rare, so there’s not a lot of data about it. It’s mainly reported by young, white females.. and not a lot of those! So I don’t know what’s going to happen with my eyesight. I manage well, but my vision still affects me on a day to day basis.

I feel like my confidence was knocked when I lost my central vision in my right eye. When it’s bright outside, the blind spot feels huge. I don’t feel confident crossing roads or in crowds of people, because I feel like everything moves twice as fast around me. I will sometimes reach for my friend’s hand when crossing the road! I need to start remembering to pack my sunglasses now we’re coming into summer, because this seems to reduce the blind spot a little. Still, my confidence has definitely taken a knock.

I’ve always been terrible with directions and not being able to read signs clearly just makes this worse. I’ve put my hand out for a bus before and it has been the wrong number when it has stopped in front of me. These are all mild annoyances that add up!

My work environment has been affected. Not only do I have trigeminal neuralgia, which means I try to avoid windows and air conditioning, but I now also have to work on a computer in a darkened area of the office, with massive fonts, zoomed in programmes, a dimmed screen and an orange night light filter over my screen (top tip: this filter on your PC settings will help with any type of eye strain, so give it a go!). It can be quite isolating. I’m sat in a corner, facing the wall. No one wants to open a window near me, but they have to sit sweating in the heat. If everyone else wants the air con on, I’m forced to work from home. In fact, it’s just easier for me to work from home in general.

My eyes get tired so quickly, so texting at night is difficult and reading for long periods of time (which I used to love!) is hard work. I blog from my phone, but luckily I have the font size set to large. I notice when text is too small everywhere, on every website. Not everyone can focus their eyes on long, but tiny pieces of text on Instagram stories or fast moving text on videos on Facebook.

It is amazing how little changes to your vision can affect how you feel and how you behave in your everyday life. I never thought that losing a little patch of my vision and everything being a bit wavy on that same eye could cause me so much hassle. I have the most respect for people who have less vision than I do and manage so much better than me!

If you are affected by vision loss, below are some charities that may be able to help you:

RNIB UK

The Macular Society

American Foundation for the Blind

Sightsavers

The Pain Corner does not make any profit. If you enjoyed reading my blog, or found it useful and would like to make a small contribution towards the cost of the domain, you can do so by clicking here. Thank you ♡

The Vision Diaries

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