Posted in Glasses

Went for my eye test today

Sunglasses on and masked up for the bus and then appointment, had a walk, got on the bus into town in the first time like forever. The buses have have stopped coming up my side of the village at the moment due to our Covid situation.

So off I went to the appointment at Boots at their opticians.
A limited amount of customers were allowed in. You can’t just turn up. You have to have an appointment which you give your name to the staff member once inside.
Straight upstairs, you talk to another member of staff who was cleaning down the 2 machines that you have before your eye test. Distance and back of eye photography.
I saw the image of my eyes on the screen. I asked the optician if she could see my Macular dystrophy and she pointed out the middle of the screen which had a charcoal like smudge/fog on both eyes. Left eye just in the middle. Right eye, big patch in the middle and extended to and around the peripheral edges. Top to bottom.
She says my right eye is far worse than my left. Understandable. As this is where the blank spot seems to be and the black blob at nightime.
I’ve haven’t seen a photograph of my eyes since my first consultation at the eye hospital in 2015. They last time I went, the computer was down and he had to go to another room to view the images. I didn’t understand enough even a few years ago to be bothered to ask to see them. I wouldn’t have probably wanted to know or see it. I’m now excited to see the results of my Autofluorescence test when I go to hospital again. As it is a more advanced specialist machine than the opticians.
I’m so impressed that the opticians now have retinal photography. So, many eye conditions and other health problems can and will be picked up sooner.
Anyway, There is hand sanitiser you can use freely. Then you go wait and see the optician who is aproned up, and masked.
My prescription has changed as I thought it had, so stronger lenses for me. They have said they will be thick, but at this point I’m past caring.
My last change of reading glasses was a year ago. So she’s said that they will put me down for eye tests yearly. If I need them sooner, just to ring.
Eye test done. Back downstairs then, to chat about what your needs are and a look at glasses with a masked staff member, you keep your mask on too.
I showed her my screenshots of the glasses I liked. She brought them to me.
I had already picked out some glasses online so I didn’t have to spend any longer in there than I had to. Not necessarily for me, but for the staff. As they have to come into contact with so many people each day. They also have to clean each pair you touch, everytime.
Tried them on, got reflective lense coating too to try and give my peepers and me a fighting chance.

Tortoiseshell… #standard.

Now just waiting on the lenses being made to be popped in the frames then I was given the option to pick them up by appointment if I always needed them adjusting or posted to me. I chose them to be posted as they don’t usually need to be adjusted.
My eyes now are in pain because of the bright prism light the optician used to look right to the back of my eye.
Painkillers help so it doesn’t turn into an ocular migraine and a literal pain in the neck.
Cannot praise the Boots staff enough.
I’m going to keep getting glasses as long as they give me even the slightest help. They don’t solve wavy lines and blank patches. But they do help me with giving me the chance at reading anything at all.
Posted in The Medical Stuff

Will I go Blind Blind?

I’ve had a few questions from people with Stargardts and the general diagnosis of Macular Dystrophy.

Will I go Blind Blind?
It’s very very rare with someone within the spectrum of the macular dystrophies group to go totally blind. There is the legally blind status at it’s worst, but not blind blind… No.
Unless there is some added complication. Another condition, causing problems beside it.
This is from the horses mouth. My consultant.
Best thing to do is speak to your consultant about this.
As the central vision is affected. The peripheral vision is still usable. It will be a learning process to use that more and get the very best use out of it. I will write about low vision help in another post later.
I’m already partially using my peripheral vision. Not consciously. I can tell when I look above stuff (especially in the dark) to see it.
These are the quotes that people are concerned about and now so am I … ‘losing my sight’, ‘I’m going blind’, ‘when I lose my vision’.
Unless I’m subsequently miss-diagnosed, and my tests results show something different or an added eye condition. I won’t use the word blind.
Not because I’m ashamed. Because that isn’t the truth.
I am losing my central vision.
Not, MY vision.
I also avoid using these terms…
I won’t call it a disease = Condition
I won’t say deteriorate = Progression
Most of all, I don’t want a newly diagnosed person, coming across a website, vlog or an Fb page thinking they will go completely blind.
We’ve all done it. Endlessly searched Google for information about our eye conditions. As I’ve stated before. It’s a rare condition. There isn’t much information out there.
So, put the right information out there. I don’t beat about the bush with this blog. It will always be an honest, true account of dealing with this condition and what it brings. If there is something happy or sad, I will post it up.
It’s about the hopeful, funny days, and the downright frustrating, ranty days.
Don’t get me wrong. This will, and has, caused me and others the most devastating loss and sadness. It won’t be easy. The central vision, that helps you look at fine detail, to read, drive, see pictures, faces, colours and shapes, will be gone.
As long as I have any hope of using my peripheral vision, I will live in that hope bubble all day long.
Posted in Funny Stories

Can’t Captcha this

I refuse so far to use the audio option.
I don’t even think people with some good old 20/20s can see these.
This… Just blumming these things… Arghhh…
Click them all and hope for the best.