6 years today from the day I got my diagnosis… 28th May 2015.
PICTURE DESCRIPTION Facebook post. Had a very weird and busy day so far, so I’m off for a pint with Catherine. Not exactly party central but we deserve a pint.
Went to the pub and was bamboozled and confused. I was just sent away without ANY further information. Had to look up details online about my eye condition, the one that had always been there, but seemingly snuck up all of a sudden. It all looked frightening and very hard to understand.
Wasn’t much information out there. Still isn’t.
I needed to know desperately how long my eyesight would remain OK. It was like an obsession for months and months. How serious was this? When will I lose my central vision? but I couldn’t find the answers.
Now I realise that there isn’t an answer. So many people who are newly diagnosed join a group online or write a blog, it’s the first thing they ask. Like I did.
Only years down the line, now it’s becoming harder to hide and cannot ignore, I’ve thought many times I cannot hide it any longer and why the hell should I be embarrassed, but 6 years later, I’m still self conscious about it, but nowadays it’s about different things than a few years ago. I’m better than I was. I will now look at my phone out and about close up if I haven’t got my reading glasses with me. I almost dare someone to say anything, and they have. But, I’m ready for them ☺. I will now sit inside somewhere with sunglasses on if I know it will cause pain later. It isn’t about what anyone thinks. It is about saving myself from discomfort.
There are things I used to do I will never do again. Simple stuff and then major stuff to me… Like driving.
But I have to appreciate what I can do today. Because I will have much harder hills to climb than this in the future. So I appreciate what I can do now. As this moment right now. When I look back in the future. I know that this part of the progression will seem easy peasy to what I would have to adapt to eventually.
I posted nothing about it that day. This was posted by someone who was probably more worried for me than I was for myself.
From that day on, it was hidden from everyone but those extremely close to me.
I couldn’t explain why I could pick a leaf from the ground, but struggle to see the little details on a photograph. At least now I can.
It does sometimes make you look to someone that doesn’t understand like I’m making it up. I can point something out to you a real distance away, but then I won’t wave at you just incase it isn’t you. I go by the shape I recognise and not the face. Then, next I can have my phone stuck near my face asking you to explain the photograph you’re showing me.
I suppose it made me feel there was nothing wrong at this point and I would have years and years. I would be old before this happened surely.
I will always be thankful that this eye problem presented itself late onset, that it wasn’t something that would seriously jeopardise my life.
That day, Before the diagnosis she gave me. Detachments that could make me permanently blind and tumours were mentioned. The consultant that day explained she would have to look into my eyes with the magnifier and the light prism after some tests I’d had. She did that and immediately saw the pattern identifying Macular Dystrophy. I asked if that was going to kill me, that’s all I was concerned about. So, I will be forever gratefully relieved as I was in that moment.
I didn’t tell anyone that at the time. There you go. So it was a relief when they diagnosed me with Macular Dystrophy. Even though I had no clue what it was. I do feel extremely thankful and lucky. Some People at that hospital 6 years ago, won’t have been so lucky that day.
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