How I’m Adapting – Page 7

Sunglasses for Photophobia

Posted on 19th May 202120th May 2021 by One Vision

Now it’s getting sunnier outside (I know what you’re thinking, What sun? My fellow light-sensitive buddies will be nodding at this. ) and having no pain in my eyes for a while over the winter. I’m pondering ‘proper’ sunglasses.

Here comes the sun.

The other day I was in town and it was really quite overcast.

Usually I have my sunglasses on all the time, even when it’s dull outside, but, I took them off thinking, “it’ll be right”.

Cue the familiar pain surrounding my eyes after about half hour. This can last until the next day. So if it’s sunny again… You can see my dilemma.

I know I write alot about sunglasses. It’s because summer isn’t so easy for me knowing the pain I can get. So I’m a bit obsessed with that big shiny ball in the sky.

I’m going to have to up my game on the sunglasses front.

So, my question is. If you have photophobia and need very dark glasses to cope with the light. Which glasses do you have?

I’ve been looking at 7eye airshields as they have very dark lenses that only let 7% of light in. Are the any good?

Now. I’ve only been looking at these as they have tortoiseshell frames (obvs) and don’t look nearly as medical as some I’ve found.

Obviously they will have to have all the blue light filtering and 100% protection. The glasses I need are so hard to find and when you think you have found them… expensive.

It’s got to the stage where I have to go with what I need, rather than what I want. I’m going to be so embarrassed really wearing them but, I cannot struggle with ‘normal’ doody sunglasses anymore. The problem with me still is, I don’t want anyone to know there is something up. I’m still clinging on in there hiding it to an extent.

If I see the consultant at my appointment on the 27th May, I will ask them for advice.

If you can message me that would be lovely.

Email me at:-

catherine@onevisionblog.com

Or fill in the form below.

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Change of diagnosis?

Posted on 6th Sep 202016th May 2021 by One Vision

Green eye, with question mark on pupil level on a white background

OK. So, I’ve known this fact since September (2019) but couldn’t bring myself to write or speak about it until now.

The 3 tests I’ve had were a result of my diminishing peripheral vision and escalating light sensitivity.

They need to see what’s actually going on in there.

The spectrum of Macular Dystrophies isn’t supposed to take your peripheral vision away.

It can make you photophobic though. (Extreme light sensitivity)

The consultant was concerned by this. I’ve got the same pattern as everyone else with Macular dystrophy that he can see, but there maybe something else happening.

It seems to be my right eye that is the worry. That’s where the black blob is in the dark. The blank space at the side of me in the daylight. The reason I think someone is stood near to me when they aren’t and why I have trouble nearly tripping over the dog on long journeys. My eyes give up after a while having to concentrate. Isn’t enjoyable anymore. Or relaxing. Why I have to swirl my head like an owl when I’m crossing a road. The reason why, although I can’t see well in the dark, my room is always dark. I can’t have lights on to see, because they hurt me, cause glare and I am literally blinded by the light. A rock and a hard place.

I haven’t had my results yet. Although you always get a follow up letter after an appointment and I do know that there is a infernotemporal defect in my eye/eyes. It had that on the letter. I did a post at the time. This is your peripheral vision. It’s a biggy. I’m not ashamed to say that I’m very scared and of the opinion ‘ignorance is bliss’ at the moment.

Please click on the picture below to view my past post about this.

I asked him if he thought I would go blind. He said that this is why he wanted to give me some tests. The big ones to find out. I went to 3 different hospitals for them.

One of the appointments, me and my sister made into a lovely day out after we had been. As it was in a town far-ish away that we hadn’t been to since we were children.

I\’m undecided whether to go on my own for the results. When I had the news last year, afterwards I left the hospital, it hit me. I took myself away and just cried. Not full on sobs. Just tears rolling down my cheeks. Angry, frustrated and frightened. Felt very alone and at odds with everyone else around. I had to get the bus back home, 15 miles away. which actually helped, as I had to hold it together. Just staring out of the window trying to take all the scenery in. Thinking of something else, rather than that nightmare.

On the other hand, I want someone there. To actually listen to the doc himself as I will probably just not remember it if it’s bad news and be there for me because I won’t be able to cope with that. If it’s good news then, I will have someone to celebrate with ☺

The next appointment hasn’t arrived yet. I did have a phonecall 18th December last year. Wasn’t prepared, I didn’t really want to know back then. So said I would wait for a letter. What with Covid now, they will be reducing the backlog, and seeing to emergencies. So will just wait till a phonecall or letter to arrive.