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...
There’s a search facility on my website for anything that you would like details on if I’ve blogged about it. There’s 200 plus posts. Also different pages to read and counting! Since August 2019, as well as here and on Instagram.
If there’s anything you’d like me to find out about and think I haven’t covered please let me know as I’m always open to ideas and comments.
Now please take a look at the daft video I’ve made. Seems easier to do than writing these days somehow.
VIDEO DESCRIPTION Cartoon hand with blue nail varnish scrolls on a mobile phone with the contents of my website rolling by. This ends with my logo eye on the end screen with http://www.onevisionblog.com written on the bottom.
One thing that I never thought about until I went to a gig since my eyesight started really progressing a few years ago, was any problems whilst I was there.
I went to see Duran Duran (Standard. My faves since 1982) with my two friends so I thought I’d be fine.
One thing that I always like to do is go to the merch stand and get myself a tour t-shirt. I’ve seen them alot and have quite a collection.
I was stood there at somepoint when it was still light and realised that I couldn’t come and go when I pleased anymore anywhere around the hall when I wanted to. I knew I couldn’t just stroll away later and leisurely spend time looking around by myself when darkness fell.
I suppose what I’m saying is, if you are planning going to see any bands, be aware, especially if this is all relatively new and you’re experiencing a period of further sightloss and therefore adjustment. Being aware of certain things before you go, will make your enjoyment as good as before.
I was surprised really as I hadn’t given anything any thought.
When it’s light before the gig has started (This was an open air event) go for your merch. It’s easier to get back to where you are (and your friends also if you prefer taking someone) and also it isn’t as frightening watching the floor, the people and less stressful all round. Because I liked to do things by myself this is what I decided to do. I didn’t want to put my friends out even though they wouldn’t have minded.
Same goes with the drinks. Whilst you’re passing get a drink or drinks if going in rounds first. By extra for later if you wish. Then when it’s dark or the lights are off you don’t have to move.
One thing I’ve stopped doing is drinking enough that I always need to find the toilets. It’s better to stop at somepoint than struggle finding them and your way through people and whatever you cannot see on the floor or ending up in the wrong place .
I don’t want to be dragging friends out of a gig to the loo to help me at the moment. That will change though as I’ll need help later on.
Once I’d fathomed this out in my head, I really enjoyed myself. I grabbed on to my friends leaving after it had finished and everything was all good.
Obviously depending on what level sightloss you have depends on what plan you have. With a little forethought we can still enjoy things we used to do.
I’m still very lucky at the moment. Although the days of me wandering off now on my own in situations like that have gone.
PICTURE DESCRIPTION Simon Le Bon stands on stage and 3 cartoon women, One with Black hair, One with brown hair and one with silver hair, stand with there backs towards the image with arms up.
It’s been a lovely few days in England right now and whilst the sunshine is beautiful, it brings with it, alot of exciting plans and a better mindset, but it can bring pain and discomfort to people like me with Photophobia (Extreme light sensitivity) and damage to sight whilst protecting my eyeballs at the same time. These glasses have taken away the discomfort and pain I was getting before when I just had the usual type of sunglasses you wear normally.
Apart from that. Everyone, Visually impaired or not, with continued exposure to light and the sunshine harmful rays over time could lead to damage to your retinal cells.
So everyone needs to wear protection from blue light, UVA and UVB. Even on cloudy days these rays are still going strong. So it’s worth just popping them on. You’ll thank yourself later.
The Sun can cause more damage to my already vulnerable macular and cone and rod cells.
It can also cause damage and sightloss to anyone with 20/20 vision too. Nobody is safe.
It’s worth investing in good protective sunglasses with all the safety specifications you can get. Cheap ones most likely won’t provide this. You can pick up sunglasses with really good protection that doesn’t cost the earth but please really think to buy some to save worry and problems later on.
It may save your eyesight now and as you get older.
It’s not worth being complacent over your eyeballs. Can you imagine losing your sight? Or it being compromised?
Luckily, where I live, the council has a Sight Loss Clinic that gave me magnification tools and my Cocoons sunglasses, for free, that protect me from the harmful light sunshine brings.
Please check with your council if they provide this service as alot don’t.
Also. Blue light is emitted from the sun, its all around us, including fluorescent and LED lighting and flat-screen televisions. Most notably, the display screens of computers, electronic notebooks, smartphones and other digital devices emit significant amounts of blue light. So, if you protect your eyes from all these elements as much as you can by less screen time, rests between working on a computer and wearing sunglasses with 100% UV protection and ideally a blue light blocker too. It will go some way to save your sight and mine too. There are blue light blocking apps for your devices. Pop one your phone to save your eyes from damage or eye strain. I have one from the Google play store. There are many eye conditions that you can be diagnosed with when older due to light damage. Even if your eyes are healthy now. So, get your sunglasses on and a blue light filter.
Don’t take your eyesight for granted.
I did. I Don’t now ☺
PICTURE DESCRIPTION 1 Photograph of myself with long brown hair wearing Black Cocoons sunglasses PICTURE DESCRIPTION 2 Black Cocoons sunglasses placed on carpet face downPICTURE DESCRIPTION 3 Side view of Cocoons sunglasses enclosed sides