Posted in How I'm Adapting, No category yet

What I think about it all at this moment

One of the hobbies I loved doing and which I turned into a business at one point was drawing and painting.

I’m going to give it a go.

One day, I’m going to look through my big box of jewellery making and see if I can not get frustrated, as the last time I tried to it wound me up. Gave in and just stopped making anything.

The way I make it I have to draw on a plastic sheet. Suppose it would be better doing this now as I can’t wait any longer or else I don’t know how long I will be able to.

If I’m not under pressure making items to sell then maybe the teddy won’t be thrown out of the cot. The way you have to do it is quite precise, it’s not me thinking that I won’t be able to, it’s just that I don’t trust my eyes anymore.

I have canvasses I can paint on. Should try this again.

Last year I painted a canvass and enjoyed it but my eyesight has gone through a period of decline which I think it has stabilised for the moment.

I’ve read about this happening but the progression has been slow up until last year. The changes have been slight and I could adjust to them. My brain working things out and me slowly sometimes without noticing, changing habits.

Especially the last 6 months have been surprising the stuff that’s been happening. To the point where you suddenly realise this isn’t just going to go away.

This is why this blog emerged, from those moments. What put the ‘tin lid on it’ as my lovely Dad would say was the comment ‘your right eye is now classed as partially sighted’ comment a few weeks ago.
Before that the seeing things that aren’t what I thought they were more often. The black blob appearing more often. The weird eye thing trying to focus, tilting the screen when I’m reading. It’s harder in the darkness when you are walking around.
I’m feeling coins now if I’m stressed or tired. Didn’t do that before.

All more often.

I came out of that appointment different. Sounds dramatic, not meant to, but it changed me somehow. As this frightening condition was actually there. Here it goes. It’s now affecting me, slightly but it the start of what I’ve been scared of. I’m in it now, the race has begun.

But this is the best my vision will be the very moment I type this. So I have to do what I want to do now. Think that last appointment shocked me. Was on the bus on the way home glad there were people around me so I couldn’t cry. Because its like an answer to my question from May 2015 when I was diagnosed.

I researched, asked, tried desperately to find out how long I had before I would then be finding things harder.

5 to 15 years I read.

Its quite an odd feeling. Going from 20/20 vision to 20/80 right eye, 20/60 left. Since then and I reckon that’s what all that instability with my eyes over the last 6 months was.

It’s knocked my confidence, I fear I won’t have a relationship, people will treat me differently or avoid me, thinking ‘at least it isn’t me’, who will want me being like this, when I can’t do stuff, but I’m on my own, I’m scared. but I have to battle on, there is no other option,and I always hold out for good news at my next appointment.

This isn’t meant to be a depressing post.

Just an honest one.

I’m OK. I’m lucky and appreciate the way I am now without too many problems regarding eyesight. It\’s when you cannot work a way around a problem that then WILL become a problem for me.

There is no point moaning about it as in the future I will wish I was at this stage now.

Posted in The Medical Stuff

Best disease – macula

Clipboard with Kellys story written on it
Kellys story.
She has a form of Macular dystrophy called Best disease. So very similar to what I have.
Posted in The Medical Stuff

Photoreceptors – Cone and Rods

Diagram of cone and rod functions described in the text on the blog post here

The retina contains light-sensing cells called photoreceptors.
There are two types of photoreceptors: rods and cones.
Together, rod and cones detect light and convert it into electrical signals, which are then “seen” by the brain. Rods are found in the outer retina and help us see in dim and dark lighting. Cones are found in the macula and help us see fine visual detail and colour.
Both cones and rods die away in Stargardt disease, but for unclear reasons, cones are more strongly affected in most cases.
I\’ve posted before about vitamin A.
Vitamin A is needed to make key light-sensitive molecules inside photoreceptors. Unfortunately, this manufacturing process can lead to harmful . vitamin A byproducts — which turn out to play a key role in Stargardt disease.
Mutations in a gene called ABCA4 are the most common cause of Stargardt disease. This gene makes a protein that normally clears away vitamin A byproducts inside photoreceptors. Cells that lack the ABCA4 protein accumulate clumps of lipofuscin, a fatty substance that forms yellowish flecks. As the clumps of lipofuscin increase in and around the macula, central vision becomes impaired.
Eventually, these fatty deposits lead to the death of photoreceptors and vision becomes further impaired.
So unfortunately eventually my colour vision will fade.