Posted in Progression updates

My progression so far… #1

Previously
⚫ May 2015… At Diagnosis. 20/20 best corrected (ie… With distance glasses)

Latest eye test.

⚫ 21st September 2017… 20/30 (Best corrected).
⚫ Faces aren’t clear but I can see features as if it’s a photograph smeared in vaseline, like I want to clean my eyes.
⚫ Still picking things up 😉…#standard.
⚫ Black blob sometimes right side, my worst eye, think people are stood next to me.
⚫ Getting better at telling people I have bad eyes. I really don’t want anyone to know. Would they treat me differently? I hid it initially because I could and I wanted to get it straight in my own head. I’m better. My close friends and family know. But sometimes, I can’t be bothered to explain and just say ‘oh yeah” to strangers fuzzy little photos.
⚫ When tired or stressed faces have two black holes for eyes usually when I\’m watching TV.
⚫ Not confident it’s my friend or the bus in the distance, so won\’t wave or flag down till I’m very sure ☺
⚫ Kerbs are becoming a problem.
⚫ Getting nervous crossing roads. Moreso my right side.
⚫ Just about ok in the dark, nervous If it’s really dark.
⚫ I won’t want to go up or definitely not down stairs or walk on uneven dark ground.
⚫ Lights, of any sort hurt my eyes. The glare is brighter now than before. I actually wince if glare from a car in the sun or window , car lights. Shop lights. Happens, day or night.
⚫ I keep seeing the doggo in places she’s not there. She’s a black labrador so looks like the black blob when its dark to me.
⚫ Stars 25% of the time, look like crystal chandelier drops…cannot make out constellations when this happens. Quite beautiful in its own way, but no good when I’m trying to find them.
⚫ Live in the dark. Because I can’t bear bright light. I trip over the dog and once nearly full sat on her but lights are my main problem. So is the dark! Even lamps annoy me.
⚫ I’ve started doing a weird thing. Recently, when I’m sat close to someone, my eyes seem to dart to each eye as if they can’t focus on one. I’m getting self conscious about it.
⚫ Huge font on my devices. And if you show me a photograph, just magnify it, and don’t be surprised if I ask you ‘what is it’ still.
⚫ I don’t know what I’m looking at if it’s very small or similar colours. Need a few seconds to focus on what you are showing me. So, please be patient.
⚫ Coins. Makes giving the right change difficult. So usually end up with a load of change in my purse. As I said will just give a note instead unless I feel I’m not or anyone else isn’t in a rush. If there is a queue, I put pressure on myself.
⚫ Stopped driving recently. Didn’t feel safe.
⚫ My eyes have to look above something to see it, especially in the dark, this is called eccentric viewing. I explain this on another post. You can learn this before this happens yourself, but in my experience, my eyes started to do this naturally. ..bless them 👀
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An honest, warts & all sightloss blog about living with a rare genetic eye condition, Macular Dystrophy, Stargardt's Disease. To track how this progresses in myself. Hopefully help others & bring awareness. Let's see what happens next...

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