One of the questions that I’ve been asked is about the initial diagnosis, what happened? How I felt?
It was a referral from asda opticians. She said my macula was very thin for my age (44). That this needed looking at. Initially I went to the opticians as one day could only read the headlines in a newspaper. Nothing else. Where as the week before I had no problem.
A few weeks later I went to the local hospitals ophthalmology department after receiving an appointment.
I had never heard of the macula. Wasn’t unduly concerned. Thought this was due to me being in my 40s maybe and probably would have to have glasses.
I went on my own.
Had tests. Retinal photography, field test, eye test and the dreaded puffer test.
My test showed that I was 20/20 corrected vision (with glasses). No pressure in the eyes. Field test good. All correct.
Then was called into the consultants room. There was a nurse there as well. I learnt after that it was for moral support incase I needed someone. I just thought it was normal.
She told me they had found concerns within both eyes and she would like to look herself with the lights off through the magnifier with the prism.
She did that for ages and then bizarrely asked me if I could see ok?
I then had to look through a colour blindness book. Both me and my sister where told we were slightly colour blind in junior school. My dad was terribly colour blind bless him.
In the 1980s.He rang my mother from the car auctions saying he had bought an orange car and would be bringing it home. My mum was going mad (she hated orange). He turned up with it onto the driveway. It was red!
Anyway (rambling)…
She told me I was born with a genetic eye condition. Macular dystrophy. She could see it in the back of my eyes where my macula is. There was nothing they could do and she was sorry.
I asked “will I go blind?”… She said no… But I will be most likely visually impaired to a point where I’m struggling with tasks, driving etc between 5 and 15 years. At somepoint legal blindness.
She kept saying sorry. I kept asking if there was anything I could do. She said no because it is in my genetic makeup.
Then basically sent on my way. No information. Gave my yellow sheet in for an appointment that’s was supposed to be for 6 months. That turned out to be nearly a year after chasing it up.
I remember going home and just being puzzled and not knowing what I had. What it was. Shocked really. Numb. Nervous about the future. Searched the Internet couldn’t find much. Kept crying because of the consultants reaction, I knew it wasn’t good. Found Facebook groups to join. Which helped. This didn’t sink in really for a long while.
It only really started to sink in when I’ve spoken to the consultant in recent times. September last year (2019) when I started having more tests. When more problems started appearing.
Also, people who have the same condition. Who are further down the line than me. I know what this does now.
One Vision Blog 