Category: Before Diagnosis

Posted in Before Diagnosis, How I'm Adapting

6 years today – Diagnosed with Macular Dystrophy

Posted on by One Vision

6 years today from the day I got my diagnosis… 28th May 2015.

PICTURE DESCRIPTION Facebook post. Had a very weird and busy day so far, so I’m off for a pint with Catherine. Not exactly party central but we deserve a pint.

Went to the pub and was bamboozled and confused. I was just sent away without ANY further information. Had to look up details online about my eye condition, the one that had always been there, but seemingly snuck up all of a sudden. It all looked frightening and very hard to understand.

Wasn’t much information out there. Still isn’t.

I needed to know desperately how long my eyesight would remain OK. It was like an obsession for months and months. How serious was this? When will I lose my central vision? but I couldn’t find the answers.

Now I realise that there isn’t an answer. So many people who are newly diagnosed join a group online or write a blog, it’s the first thing they ask. Like I did.

Only years down the line, now it’s becoming harder to hide and cannot ignore, I’ve thought many times I cannot hide it any longer and why the hell should I be embarrassed, but 6 years later, I’m still self conscious about it, but nowadays it’s about different things than a few years ago. I’m better than I was. I will now look at my phone out and about close up if I haven’t got my reading glasses with me. I almost dare someone to say anything, and they have. But, I’m ready for them ☺. I will now sit inside somewhere with sunglasses on if I know it will cause pain later. It isn’t about what anyone thinks. It is about saving myself from discomfort.

There are things I used to do I will never do again. Simple stuff and then major stuff to me… Like driving.

But I have to appreciate what I can do today. Because I will have much harder hills to climb than this in the future. So I appreciate what I can do now. As this moment right now. When I look back in the future. I know that this part of the progression will seem easy peasy to what I would have to adapt to eventually.

I posted nothing about it that day. This was posted by someone who was probably more worried for me than I was for myself.

From that day on, it was hidden from everyone but those extremely close to me.

I couldn’t explain why I could pick a leaf from the ground, but struggle to see the little details on a photograph. At least now I can.

It does sometimes make you look to someone that doesn’t understand like I’m making it up. I can point something out to you a real distance away, but then I won’t wave at you just incase it isn’t you. I go by the shape I recognise and not the face. Then, next I can have my phone stuck near my face asking you to explain the photograph you’re showing me.

I suppose it made me feel there was nothing wrong at this point and I would have years and years. I would be old before this happened surely.

I will always be thankful that this eye problem presented itself late onset, that it wasn’t something that would seriously jeopardise my life.

That day, Before the diagnosis she gave me. Detachments that could make me permanently blind and tumours were mentioned. The consultant that day explained she would have to look into my eyes with the magnifier and the light prism after some tests I’d had. She did that and immediately saw the pattern identifying Macular Dystrophy. I asked if that was going to kill me, that’s all I was concerned about. So, I will be forever gratefully relieved as I was in that moment.

I didn’t tell anyone that at the time. There you go. So it was a relief when they diagnosed me with Macular Dystrophy. Even though I had no clue what it was. I do feel extremely thankful and lucky. Some People at that hospital 6 years ago, won’t have been so lucky that day.

Posted in Before Diagnosis, Glasses

6 years ago.

Posted on by One Vision

This is a status I wrote 6 years ago when ignorance was still bliss.

It came up on my memories on Facebook today. I don’t use facebook anymore, apart from updating my One Vision page there.

I wasn’t concerned really. As I thought I would know if there was something seriously wrong with my eyesight. Like as in all of a sudden everything would go black.. I didn’t really realise at that time, there was so much of a sight loss spectrum inbetween.

I knew something was amiss, but just thought that it was down to me being in my 40s and my eyes had aged. Along with myself ☺

So this is really when the first inkling of any trouble with my eyesight presented itself.

So you see. This can happen to anyone. Don’t take your eyes for granted. I wasn’t aware anything at all was wrong before this instance.

PICTURE DESCRIPTION facebook status. Went to opticians. Got some doody glasses and referral to eye hospital. Not a good day for someone with an eye phobia.

Posted in Before Diagnosis, Hospital Appointments

Questions I’ve received #1 – Diagnosis

Posted on by One Vision
One of the questions that I’ve been asked is about the initial diagnosis, what happened? How I felt?
It was a referral from asda opticians. She said my macula was very thin for my age (44). That this needed looking at. Initially I went to the opticians as one day could only read the headlines in a newspaper. Nothing else. Where as the week before I had no problem.
A few weeks later I went to the local hospitals ophthalmology department after receiving an appointment.
I had never heard of the macula. Wasn’t unduly concerned. Thought this was due to me being in my 40s maybe and probably would have to have glasses.
I went on my own.
Had tests. Retinal photography, field test, eye test and the dreaded puffer test.
My test showed that I was 20/20 corrected vision (with glasses). No pressure in the eyes. Field test good. All correct.
Then was called into the consultants room. There was a nurse there as well. I learnt after that it was for moral support incase I needed someone. I just thought it was normal.
She told me they had found concerns within both eyes and she would like to look herself with the lights off through the magnifier with the prism.
She did that for ages and then bizarrely asked me if I could see ok?
I then had to look through a colour blindness book. Both me and my sister where told we were slightly colour blind in junior school. My dad was terribly colour blind bless him.
In the 1980s.He rang my mother from the car auctions saying he had bought an orange car and would be bringing it home. My mum was going mad (she hated orange). He turned up with it onto the driveway. It was red!
Anyway (rambling)…
She told me I was born with a genetic eye condition. Macular dystrophy. She could see it in the back of my eyes where my macula is. There was nothing they could do and she was sorry.
I asked “will I go blind?”… She said no… But I will be most likely visually impaired to a point where I’m struggling with tasks, driving etc between 5 and 15 years. At somepoint legal blindness.
She kept saying sorry. I kept asking if there was anything I could do. She said no because it is in my genetic makeup.
Then basically sent on my way. No information. Gave my yellow sheet in for an appointment that’s was supposed to be for 6 months. That turned out to be nearly a year after chasing it up.
I remember going home and just being puzzled and not knowing what I had. What it was. Shocked really. Numb. Nervous about the future. Searched the Internet couldn’t find much. Kept crying because of the consultants reaction, I knew it wasn’t good. Found Facebook groups to join. Which helped. This didn’t sink in really for a long while.
It only really started to sink in when I’ve spoken to the consultant in recent times. September last year (2019) when I started having more tests. When more problems started appearing.
Also, people who have the same condition. Who are further down the line than me. I know what this does now.