My story so far

In May 2015, I was diagnosed with macular dystrophy. I’ve hidden it up until this point because I could.

I had no clue initially what this was.

My eyesight had been fine up until one day when I picked up a newspaper, in a cafe and couldn’t read anything other than the headlines. The week before, not one problem. I thought, because of me being 44, maybe it was natural that my ageing eyes would be getting abit tired ☺. So, I got myself an appointment for an optician who told me my macula (what the blumming hell is that, I asked) was very thin, at least something on me was so, she would refer my to the eye clinic. So, I ended up with a prescription for reading and distance glasses.

I had that appointment where they told me that there was a problem. I went on my own, as I wasn’t worried or had any concerns as I just thought, ‘it will be right’. Like I do (going to have to stop that).

My eye test showed that I was still 20/20 (corrected) at this point.

She asked me if I could see.

I was hoping she would tell me why I couldn’t see properly. Was this the cleaner pretending to be a consultant?

I was slightly taken aback as that’s a weird question to be asked by someone who had just shone a bright light into your eyes with little old me sat there hoping she was going to tell me WHY, I couldn’t see alright anymore.

I said yes, not bad at all, strangely bemused by all this.

“You have all the signs for Macular Dystrophy. I’m sorry”

She said it would be between 5 and 15 years before changes would start to effect me. The changes being, I would lose my central vision.

I asked her if there was anything at all I could do to stop this happening. She said ‘No, I’m sorry there is nothing we can do, this is a genetic condition, you were born with it, and now it’s starting to make itself aware, as it will have been deteriorating to this point now where problems have shown up’.

Oh, right. Well I was abit bewildered. Still thinking, but now not that cock sure… ‘it will be alright’ (again, I must stop that).

The shock of the diagnosis, especially when you didn’t even know that inside your eyes there is a tiny, important component called a macula, was hard to get to grips with and still is.

There was, and is, hardly any information about macular dystrophy. I learnt, through appointments and Facebook groups from people with the same condition, what this condition meant…it sank in. Actually. That’s a lie. It was like a truck had ran me over. A complete shock.

My central vision was going to fade away. Me, who loves looking at the stars, birds, trees, flowers, clouds, architecture, art, my family and friends faces, was going to end up not seeing the smiles on the people I love, the doggos in the street, the snowy scenes, beaches, stars, sunsets, peoples faces, my friends faces, my fiances face, my families faces, sons face.

Would I be able to see them grow older or would they stay forever youthful in my minds eye. How much time is left for my central vision. Suddenly felt like I was in a race against time.

What was my fiance going to say? I thought that’s that then, I will just be wandering around bumping into things on my own eventually. He doesn’t need that responsibility to look after me. What on earth was I going to do now?

More about all that later. I had an appointment with a lovely specialist yesterday (19th September 2019) at a Yorkshire hospital, I have decided to pop my thoughts here as it is now the right time to come to terms and face upto what is going to come. To also show you and me, how this is progressing in myself, overcoming obstacles and new phases of the condition. Bringing awareness of a rare genetic condition to hopefully help others along the way ☺

It has been a hard, confusing, heartbreaking, stressful time, but surprisingly enlightening and bemusing at times ☺