An honest warts & all sightloss blog. I'm living with Macular Dystrophy. To track my progression and hopefully help others. What will happen next?…
Author: One Vision
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...
Something that happened a few weeks ago, twice, because I didn’t use my handy magnifyer. I wouldn’t mind but it’s always in the front of my handbag.
I ended up taking too many Co-codamols for pain thinking they were Paracetamols because I was in a rush to meet my friends at Pontefract, for the VIP meeting there we have every month.
I’d forgotten I had these in my bag and only thought I had Paracetamol.
I ended up realising what I’d done so didn’t drink anything till alot later on. Just because I couldn’t be bothered to use it. It nearly ended up in me not attending at all.
Then, like a complete idiot, I took 2 of the same night-time tablets instead of one of each that I take to help me sleep and for my mental health. So I couldn’t hardly take the correct one aswell, as I’d already taken too many.
Bonkers isn’t it.
I can’t read the back of the pill packets to differentiate what’s what with just my glasses on and these silly moments of not getting my magnifyer out could have caused no end of sickness or problems for me so I’ve learnt my lesson.
PD 1 Cartoon image of a blonde long haired woman. Sat with knees bent with pill packets in different colours and pills, on the floor, by her knees. She holds a bright neon yellow magnifying glass reading the packets and discovering what they are.
PD 2 A photograph of a neon yellow magnifying glass placed on a brown table in close up.
Whilst waiting in the bus station on one of our coldest, wettest days of the year so far (I think so anyway) I thought I would write a little blog about how the wet weather and rain affects my vision and my photophobia in particular.
Photophobia isn’t just about the suns glare. It’s any glare. Light, water and otherwise too. I’ve even had it from glass and coins. I’ve found coins because of it though 😉 My bus back home has missed yet again and because of the weather the Uber fares are quite expensive, so I’m sitting it out until the next bus. Fingers crossed everyone that that one comes.
I made a graphic last night to explain this. A real photograph of my trip into my home city the other late afternoon and a doctored one to get the nearest depiction of what glare does to my eyesight.
I do get glare through the day, any day, not just summer sun. The light and glare can bounce of cars, appears brightly around corners. Especially if sat in a moving vehicle which I try to catch as I’m now very used to avoiding bright light and where it appears from.
In the late afternoon and evening, this also happens as the light drops into darkness from traffic lights, shop lighting and wet surfaces, puddles etc.
This is nearly exactly what I see.
It hinders my confidence getting around in the low light. It also makes things seem alot blurrier. Which I’m blurry anyway without this adding to the effect.
The pavements seem to shine. Reflect back at me.
I cannot wear my usual trusty sunglasses I have through the day all year, as they make it too dark to see at all.
It’s very hard to explain what I see. Especially as I seem to get around sort of ok with no white cane as yet, to help. This is something I’m going to have to sort out though.
You just can’t see the cogs whirring inside my brain checking out all the possible dangers. It is abit like a duck or a swan gliding around.
I wear grippy boots because I’m frightened of falling again if it’s dark and wet.
You just cannot see my frantic feet peddling away getting me around.
It does help knowing extremely well, my route around the city I’ve been visiting all my life.
Anywhere I don’t know, I wouldn’t march around so quickly.
PD 1 A late afternoon darkness descends on a city. Traffic lights are at red and the wet precinct gradually goes down the hill. The sky is a darkening blue colour. The shop lights are on brightly as its just near closing time.PD 2 The same photograph as PD 1. The view is blurrier. The red traffic lights are elongated and brighter. Stretching towards the foreground. The shop lights are very bright now. They take up some of the pavement. The pavement shines because of the wet weather.
After a very productive day of abit gardening by Richard and I. A brickie doing some work in my house this morning due to my ongoing renovations to my little house 🤗. We thought we would meet up with my sister for a well deserved meal locally.
I was looking at the menu on my phone as it’s easier for me than reading the menu. Or so I thought.
A lovely fella came up and said they had a large print menu which we could use which also had a Braille menu on the other side.
Well done Brewers Fayre and the Rhubarb Triangle Pub!
We’ve never been offered a large print menu and it made it so much easier for me to read today. And it was also nice to sit and just enjoy reading a menu, page by page for once.
Richard, who has an eye condition called Choroideremia, can read the menu as his central vision is sort of 20/20. His vision is very different to mine and about as hard to explain! He uses a white long cane to get around safely as his distance vision is patchy.
At least we can help each other.
PD 1 A colourful ring bound book of photographs of lots of plates of food on the cover. The text reads Large Print Menu.PD 2 A colourful ring bound book of photographs of lots of plates of food on the cover. The text reads Braille Menu.PD 3 A close up photograph of a white page with Braille text PD 4 A white contents page with large black text. Different types of food listed with page numbersPD 5 Richard. A white male with shaved head. Wears a colourful turquoise and orange jersey and beige jeans. He also is wearing Ray-Ban meta glasses. He holds a hedge trimmer whilst cutting a green foliaged hedge nearby.