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.
One Vision Blog 