Posted in Hospital Appointments, How I'm Adapting

Change of diagnosis?

Posted on by One Vision
Green eye, with question mark on pupil level on a white background

OK. So, I’ve known this fact since September (2019) but couldn’t bring myself to write or speak about it until now.

The 3 tests I’ve had were a result of my diminishing peripheral vision and escalating light sensitivity.
They need to see what’s actually going on in there.
The spectrum of Macular Dystrophies isn’t supposed to take your peripheral vision away.
It can make you photophobic though. (Extreme light sensitivity)
The consultant was concerned by this. I’ve got the same pattern as everyone else with Macular dystrophy that he can see, but there maybe something else happening.
It seems to be my right eye that is the worry. That’s where the black blob is in the dark. The blank space at the side of me in the daylight. The reason I think someone is stood near to me when they aren’t and why I have trouble nearly tripping over the dog on long journeys. My eyes give up after a while having to concentrate. Isn’t enjoyable anymore. Or relaxing. Why I have to swirl my head like an owl when I’m crossing a road. The reason why, although I can’t see well in the dark, my room is always dark. I can’t have lights on to see, because they hurt me, cause glare and I am literally blinded by the light. A rock and a hard place.
I haven’t had my results yet. Although you always get a follow up letter after an appointment and I do know that there is a infernotemporal defect in my eye/eyes. It had that on the letter. I did a post at the time. This is your peripheral vision. It’s a biggy. I’m not ashamed to say that I’m very scared and of the opinion ‘ignorance is bliss’ at the moment.

Please click on the picture below to view my past post about this.

I asked him if he thought I would go blind. He said that this is why he wanted to give me some tests. The big ones to find out. I went to 3 different hospitals for them.
One of the appointments, me and my sister made into a lovely day out after we had been. As it was in a town far-ish away that we hadn’t been to since we were children.
I\’m undecided whether to go on my own for the results. When I had the news last year, afterwards I left the hospital, it hit me. I took myself away and just cried. Not full on sobs. Just tears rolling down my cheeks. Angry, frustrated and frightened. Felt very alone and at odds with everyone else around. I had to get the bus back home, 15 miles away. which actually helped, as I had to hold it together. Just staring out of the window trying to take all the scenery in. Thinking of something else, rather than that nightmare.
On the other hand, I want someone there. To actually listen to the doc himself as I will probably just not remember it if it’s bad news and be there for me because I won’t be able to cope with that. If it’s good news then, I will have someone to celebrate with ☺
The next appointment hasn’t arrived yet. I did have a phonecall 18th December last year. Wasn’t prepared, I didn’t really want to know back then. So said I would wait for a letter. What with Covid now, they will be reducing the backlog, and seeing to emergencies. So will just wait till a phonecall or letter to arrive.
Posted in Useful Information

Blue light filter

Posted on by One Vision
Blue light filter.
This is the one I use. Been using it for years to protect my eyes from the harsh blue light. Makes my eyes feel more comfortable because you can dim the screen to suit you.
It has different settings. Just pick one that you prefer. Has different colour filters, so you can find the one you like the most. You can also adapt the intensity.
Comes with a handy flashlight too.
A tip though… I do have to switch it off when taking photos with my phone as they come out darker with the filter on.
But there is a helpful settings bar that isn’t intrusive, so it’s easy to turn on and off. As with the flashlight.
Free from Google play.
Posted in Useful Information

Samsung Huge font and SwiftKey keyboard.

Posted on by One Vision
Screenshot of keyboard from phone depicting the size of my huge font

Another question… About how can I see the phone?

You can in a fashion, when your keyboard takes up most of the screen.

With glasses it isn’t clear but they do help for the moment.

I use the SwiftKey keyboard, as you can adjust it to make it as large as you want.

This is on full wack.

Used with Samsung Huge font, it helps me to read without glasses on. As I don’t always tend to take them out with me. So this set up is for me without glasses.

Without glasses, I have to squint quite a bit and tilt the phone around to see the keyboard and what I’m typing. It’s blurred and double vision is a problem.

Just so you can get an idea what it’s like at the moment.

The first image is a screenshot of what I have set up for me on my phone. So that should be clear… Should be… I dunno ☺

The second image is a representation, (as near as I can get it) of what it is like without glasses. Not allowing for any tiny blind spots that I have.

Now, I know this isn’t good, but it’s the best I can do for the moment with what I have. I get by.

This is why I guard my glasses like the holy grail itself. My favourite ‘thing’.

So, now you know why, (usually when I’m out) when I’m looking on my phone… It’s on my nose.