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...
The link at the bottom of this blog post is to read my gorgeous friend Esthers story.
This is her story about her trip to go see Beyonce in London.
It hurts and upsets me so much to see this amazing young woman upset in this way by unthinking and uncaring people who haven’t the common sense to make the right decisions.
She was so excited about it.
She just wanted to see her favourite singer. Same as everyone else there. Not treated astonishingly shabbily by jumped up people with zero interest, zero compassion.
I’ve also just been speaking to my boyfriend Richard, whom also has a story about the same venue. Tottenham Hotspur Stadium. These are his words.
“I am severe sight impaired and use a long cane. In 2021 I booked a ticket at Tottenham Hotspur to see an NFL game. I also booked a companian ticket and had to provide proof of my visual impairment. They decided to put me in the disabled section and when I arrived on the day of the game my seat had been removed to allow for a wheelchair. So the first 45 minutes of the game I spent standing up – it was humiliating, until they put me a seat in. Absolutely hopeless”
What on earth are they thinking treating visually impaired people like this! How dare they! It’s NOT on at all.
I feel sometimes I ought to give up bleating on about Inclusivity, awareness. Give up blogging when I see unbelievable errors like this. Trying to educate people about what visual impairments overall spectrum of sight really means. The misconceptions. The stereotypes that sighted people get all too wrong. That’s another blog post for later though.
It happens all too often unfortunately.
I’m half way through writing a blog about more discrimination in my hometown. More soon…
I’ve been listening to the audio description on my television lately.
I switched the facility on as I’m not sure I’m seeing everything.
It provides a description of what’s happening on the screen. Not all programmes provide this, but it is handy if you can’t see what’s happening properly and want to properly follow a story. An aid to add to your enjoyment without struggling.
A voice over specialist, describes on-screen actions, settings, expressions, and other visual information without interrupting the original audio.
It adds to the experience anyway, even if you can see perfectly well. I’ve learnt alot of facts from having this on. Character names you didn’t know in films that aren’t even mentioned. Even ones I’ve watched for years, now have extra details I didn’t know. Same goes for songs that you hear playing. Tells you who it is. Provides a lot more detail than is mentioned or given otherwise.
I’ll tell you something though. It’s savage sometimes ☺
Abit judgey. Sometimes harshly descriptive. Regarding attractiveness, size or even age of a person. Quite funny, sometimes downright shocking really and well worth turning on to listen to, even if you can see ok.
Watch Naked Attraction with this on and it will provide no end of enjoyment by the audio alone!
VIDEO DESCRIPTION A blonde cartoon woman. With her back of head to the image. Sits on a green sofa and watches television. The start of the film The Worlds End plays. Simon pegg, dressed in a blue outfit, plays Gary, who is talking facing the camera. Audio Description plays
28th of May 2015 was the day I was diagnosed with Macular Dystrophy.
Ten years ago today.
“I’m so sorry” said The Consultant. “There’s nothing we can do”. I didn’t understand. I’d never heard of a macula. Just thought I’m in my 40s, will probably need glasses. There can’t be anything wrong.
She asked if there was anyone with me. There wasn’t. As I’d just thought there wouldn’t be anything wrong.
I was let go. Popped my yellow sheet in the tray at reception, to receive another appointment.
I had a confusing, stunned, walk back alone through the hospital grounds and through the park. I sat for a little bit on a bench. Somehow knowing this was a ‘big’ thing I’d have to face, without knowing what that was exactly. Just enjoying the late spring sunshine and looking at the beautiful trees dotted around.
PD A brown long haired cartoon woman, sits on a green bench in a park setting. In the background there is grass and tall trees. She wears a purple skirt, black leggings, Black vest top with red shoes. Her green eyes are looking towards the camera
At this point and the few months afterwards, they were abit of a dazed blur to be honest. Trying to understand what this diagnosis was, when there was hardly any information or blogs around, was an astounding learning curve.
I learned that even though I had 20/20 vision at that point, it wouldn’t always be this way. This is genetic.
For the first few weeks I was avidly eating Vitamin A enriched foods as I was initially mixing this up with Macular Degeneration (NOT my condition) and then after learning my eyes don’t process Vitamin A properly, and finally realising that this was the problem with my eyes and the driving force of the damage and therefore the progression of this condition, I made sure I just ate a normal daily allowance of these foods.
I was in shock for a long time afterwards with worry for my future.
Eagerly Googling, searching social media, blogs, everyday for ages, trying to find someone with this malady. So they could tell me how long I’ve got to see properly. I realise now that was fruitless. We are all different.
Initially I panicked and tried to find everything about how people with this condition progressed in the future. How long would it take till I would have real problems? Would I go Blind? What would my future look like?
I stopped smoking (Eventually) I settled into what I knew about this condition and came to the conclusion there was nothing I could do and worrying, causing me stress, was probably not going to help matters.
I had a boat load of tests and check ups. All to no avail really. Saw lots of different consultants, at 3 different hospitals. Apart from them finding two medium sized retinal detatchments, that grounded me for a while in the UK. They eventually shrunk over the years and the last time they checked they were an extra small one in my left eye and none, in my right.
It did became seemingly pointless to me to have anymore of the tests after these detatchments had shrunk down. After all there is nothing that can be done about my Macular Dystrophy diagnosis… Yet. Then Covid-19 came, and I never did get to see the results. That really messed it all up.
10 years on I’m so very thankful my progression has been slow. Any adjustments to my sight, I’ve been able to cope. Subconsciously or consciously. My eyes are adapting, I’m learning to take things slower and be more patient with myself.
I was worried this condition was speeding up abit when I stopped driving, as this was before the 5 to 15 year window that the first consultant said I had before being within the Blindness spectrum and therefore having to rethink alot of my life as it was.
I’ve had distinct periods of my eyesight getting worse. The times I’ve thought it would ‘mend’ itself because I must be tired or stressed, wasn’t to be.
I’ve noticed big jumps in the difference if I’ve not done something for a while. This usually involved something like painting the fence a year on. Painting the house with reading glasses on to which both still was a patchy mess.
I stopped driving in 2019. 4 and a half years on from being diagnosed. That was sooner than I expected.
It was hard because I had driven for 29 and a half years at this point. I was used to, for nearly 3 decades, bobbing about when I wanted to. Nipping here and there.
I was a nervous bus passenger at first. Same with taxis. Didn’t think they would turn up or they would take me to the wrong places.
Now, I love the bus and trains especially. Looking out of the window is still a novelty to me, even after all this time. I couldn’t do that driving. Relaxed and now confident with other forms of transport, I go on my merry way and have had adventures I wouldn’t have had and the coach holidays seeing all parts of the UK I may never have seen.
Last year I had a period of falling over and hurting myself.
I definitely need a cane for night time. That’s without a doubt. A battle in my head I have to get over with. I’ll talk about it one day. I cannot at the moment.
It is time to do some cane training. I’ve known this for a while.
All in all I’m not anywhere near I’d thought I’d be at the start.
I’m lucky. I know that. For alot of things are so different than 10 years ago.
I’m better than ever. A much healthier and happier person than I was.
I appreciate so much. The little things. I do stop and look around if I’m on a walk or even just out shopping. I try to see everything I can, albeit in a blurred world.
Sometimes it’s abit like being a swan gliding along on the surface. In reality, nobody can see how hard underneath I’m concentrating on moving along, scanning, trying to make objects out, blumming kerbs and uneven surfaces. Steps are an absolute pain.
One thing’s for sure in my uncertain world. Is that I’m very grateful for how I’m still managing this in my own little way. 10 years ago, I don’t think I could have wished for more than to be as I am now.
If you’d like to read a more indepth diagnosis post. Below is a link to my first ever post. This was about what happened at my appointment with the eye clinic and what happened there 10 years ago today.
One Vision Blog 