What is Macular dystrophy?
This sums it up better than I could 😊 It is a confusing condition to try to explain to someone.
Please click below.
Macular Dystrophy?
Clues
Now when I think back to life before diagnosis. Certain things add up to me.
The picking objects up to ‘see’ what they are from a young age. My mum used to tell me off about it.
Wearing sunglasses as an adult when most people had taken theirs off, as my eyes felt more comfortable to me with them on.
I had a strange couple of mornings I about 10 years ago. I woke up and there was a light grey blob clouding my central vision. It was early morning, dawn. I stubbed my toe on the corner of the sofa, both days walking to the kitchen. I just thought I was still sleepy. For about 2 weeks after these episodes, When I looked onto a light coloured wall, I could see this faint blob in my central vision. It annoyed me more than anything and was only when i looked at the bathroom tiles or sometimes the wall in the room at night time. I mentioned it to the doctor the next time I went to see him, just as an ‘oh, by the way kind of remark\’. He said my brain would eventually block it out, which it did, and that I was probably on the computer a lot which I was, due to what I did to earn money.
A few years later, I was in pizza hut in York, insisting to my husband that I wanted some strawberries and cream. He said, ‘they don’t do it’. I kept saying ‘yes they do’ as I pointed to the next table. Then it was pointed out to me that I was looking at the salad bowl they had with cherry tomatoes and some white dressing! 😃. My husband, son and myself laughed it off, thought nothing else about it.
I posted a photograph on my Facebook page a relatively short time before diagnosis, laughing at myself because I was trying to get the smudge off my phone, it was picture on an app. I was trying to wipe away a tree! 😐 😃
All clues.
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Hello 😊
Four and a half years ago, in May 2015, I was diagnosed with macular dystrophy. I’ve hidden it up until this point because I could. To look at me you would never know. To watch me awhile something would seem amiss.
I had no clue what this was.
I had no clue 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 ie with glasses) at this point.
My eye test showed that I was still 20/20 (corrected ie with glasses) at this point.
She asked me if I could see. 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 started to show 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, sunsets, art, my family and friends, was going to end up not seeing the smiles on the people I love, the doggos in the street, the snowy scenes, beaches, stars, 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.
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. What on earth was I going to do now?
More about all that later. I had an appointment with a lovely specialist yesterday 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 ☺
One Vision Blog 