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 👀
Posted in The Medical Stuff

Macular Dystrophy?

What is Macular dystrophy?
This sums it up better than I could 😊 It is a confusing condition to try to explain to someone.

Please click below.

Click here to go to All about visions webpage about this

Posted in Before Diagnosis

Clues

Supermarket Isle scene of little blonde girl scowling at her brown haired mother

Now when I think back to life before diagnosis. Certain things add up to me.

The picking objects up to ‘see’ what they are from a young age. My mum used to tell me off about it.

Wearing sunglasses as an adult when most people had taken theirs off, as my eyes felt more comfortable to me with them on.

I had a strange couple of mornings I about 10 years ago. I woke up and there was a light grey blob clouding my central vision. It was early morning, dawn. I stubbed my toe on the corner of the sofa, both days walking to the kitchen. I just thought I was still sleepy. For about 2 weeks after these episodes, When I looked onto a light coloured wall, I could see this faint blob in my central vision. It annoyed me more than anything and was only when i looked at the bathroom tiles or sometimes the wall in the room at night time. I mentioned it to the doctor the next time I went to see him, just as an ‘oh, by the way kind of remark\’. He said my brain would eventually block it out, which it did, and that I was probably on the computer a lot which I was, due to what I did to earn money.

A few years later, I was in pizza hut in York, insisting to my husband that I wanted some strawberries and cream. He said, ‘they don’t do it’. I kept saying ‘yes they do’ as I pointed to the next table. Then it was pointed out to me that I was looking at the salad bowl they had with cherry tomatoes and some white dressing! 😃. My husband, son and myself laughed it off, thought nothing else about it.

I posted a photograph on my Facebook page a relatively short time before diagnosis, laughing at myself because I was trying to get the smudge off my phone, it was picture on an app. I was trying to wipe away a tree! 😐 😃

All clues.