Posted in No category yet

Newly diagnosed with Macular Dystrophy

I know this is why you have probably ended up on my page.
Because I was where you are 5 years ago now.
Endlessly searching for an answer and ultimately disappointed that I didn\’t get one.
We are all different. Even though this is a genetic condition and factors such as changing lifestyle to an extent will not stop this train going down the tracks to an unknown destination. What I’ve learnt is…
It will ultimately be a different view, literally, for each person with genetic macular dystrophy.
Not even the specialist or the consultant or even someone living with this condition can tell you what’s the upshots going to be.
So stop looking.
Your experience will be different to others whilst coping with the same things. As in, I mean that you may progress faster or slower than someone else in the same shitty boat. Your boat may have more holes in and sink abit quicker.
Your boat may be bobbing along for quite a while until you cannot see the island anymore. You might even get to the island.
Now that sounds miserable. But. One thing I’ve learned in the 5 years of realising I’ve had this all the time in my eyeballs is, as long as your progression is slow you can adapt to it.
Your eyes are good at adapting. Take eccentric viewing for example.
Please read my post on Eccentric Viewing by using them search bar on my blog.
My eyes were doing this a long time before I knew what it was. Darting around trying to focus. Looking above what you are meant to be looking at so you can ‘see’ it.
The headaches and eyestrain I was getting were bad at one point. Until I learnt that bright lights or the sunshine were causing it. Even inside. So sunglasses were the way to go. Even in cloudy days. My eyes were telling me to cover them up and now don’t get these symptoms so bad.
I always used to ask my consultant –
⚪ How long before I cannot see properly at all?
⚪ When will it become really difficult?
⚪ Surely there must be something that can be done?
They have always answered with… ‘We can’t say and there is no cure or treatment at this time’
Usually delivered with the sympathy, concerned face.
So stop searching right now.
I’ve had people ask how I seem so accepting and they would be devastated.
I was shocked, but I’m saving the devastated till later… in my pocket. Because I know one day when I can’t do alot of things for myself, or I’m even more frustrated than I am now. I will be. I’m imagining it will come at me like a wave over my little boat.
Having said that. I can still see my island and that’s the key to all this.
While I am independent, able to see smiles and all the other stuff I’ve described in posts before. I will make the most of it. I’ve got worse times ahead eyesight wise than this and I will kick myself for not making the most of it… NOW.
There are so much more worse things that the doctor could have told me I had that day in May 2015.
This isn’t going to kill me.
Unless I don’t concentrate on that blurry vehicle coming down the road.
Unknown's avatar

Author:

An honest, warts & all sightloss blog about living with a rare genetic eye condition, Macular Dystrophy, Stargardt's Disease. To track how this progresses in myself. Hopefully help others & bring awareness. Let's see what happens next...

Leave a comment