It’s 7 year’s ago today since I had my appointment at the opticians (Asda) for just an eye test and they discovered whilst looking into the back of my eyes that my macula was thin.
This set off the turn of events that led me to discover my Macular Dystrophy diagnosis.
The optician said she would have to refer me to the eye center in my home town.
18 days later I had that appointment.
PICTURE DESCRIPTION Text on photo reads. Catherine feeling disturbed. Went to opticians got some doody glasses and referral to eye hospital. Not a good day for someone who has an eye phobia. #defcon3
Little did I know that the authors were from my home town.
So today I spotted that the lass who has been sitting next to me for 2 days at the sight loss course, had this book with her.
I mentioned it and she said “I’m one of the authors!”
I told her I’d written a blog post about it.
Weird huh? And yay to random occurrences.
I asked her if she would kindly send me abit about herself and she has! so here it is below.
Thank you so much Anna and it was so lovely to meet you ☺…
I Can’t See The Stars
My name is Anna and at the age of 26 I registered as severely sight impaired aka blind. I knew it was coming but maybe not this soon in my life. I have a genetic disease called RP which I was born with. There is a lot of support out there if you look for it but often from lots of different places and sometimes websites can be a bit tricky to navigate. So together with my mum Joanna, who is also severely sight impaired, we decided to write down everything we have learnt over the years and create a tips and tricks book for people living with sight loss. It also has some information for those who support us, so a good one to give to friends and family members to read.
The book is free on kindle unlimited, otherwise £3.99 or you can buy a paper copy on Amazon for £6.
Might want it get yourself a cup of tea and a sandwich for this one (sorry)… I go on abit…
Tomorrow is my rescheduled sight loss course.
Me being me, I’m trying to think of ways to get out of it ☺
There’s only 10 on the course, so they will know I would be missing.
I’m going though. I’ve told myself I’m going to help the others.
It’s in my home town in an old nursery which luckily I already know where it is.
From 10.30am till 3pm for 2 days. (Next one Monday 9th May)
Sometimes I do have a tendency to be a potato in a fruit bowl or at least feel like one. I hope this isn’t the case here. If anyone knows me reading this. They will know what I mean.
I’ve also told myself I need to say yes and go do stuff, that maybe I would have avoided in the past.
This feels like going to a scuba diving convention when I don’t scuba dive.
I’ve convinced myself so much that I’m not ready or ‘bad enough’ to be a part of the blind community.
Somewhere in the ether, floating around in the middle.
I’ve recently acknowledged that, however much I waffle on about stuff here. I have zero acceptance of me having this condition.
Really feel I’m taking up someones space that could use it better than me.
I did tell the fella I’ve been chatting with for a while, on the phone this. He’s of similar age to me and has a similar, but different condition.
I think he wanted me to know it wasn’t just the elderly, but a mixed group.
I’m not used to being so obvious in daily life with what’s wrong here.
Can’t really hide it tomorrow or I won’t get the best out of the course.
I can’t use the tips and tricks I’ve learnt, albeit mostly subconsciously, to hide it somewhat successfully from most people.
Tomorrow I don’t use these for the first time since being diagnosed.
You know the ones…
‘forgot my glasses’
Leave a shop empty handed because you just can’t see writing on labels.
Saying ‘Oh yeah’ to a photograph you can’t make out.
When you can’t see a menu. You just pick what you had before there or just have coffee.
Looking down when meeting people until you feel comfortable.
Hoping they can’t tell.
And yes, I realise that some of these things would disappear if I just asked for help.
I won’t though.
I don’t want to be treated differently, pitied, or lose anyone over it. Really wished now that I’d never told anyone about it, when I found out in the first place.
So as you can tell. This is going to be mighty strange for me tomorrow.
I’m quite nervous and I’m not a nervy person either.
Always trying to hold onto any semblance of myself, as long as I can.
I always said this blog would be honest for good and bad. Sometimes there’s melancholy, ranty, informative, positive or funny posts.
I set out initially to have a blog that showed the ‘warts and all’ type of writing I hadn’t seen previously. This is a true depiction of how life is with my own personal story of this condition.
Blogs like this shouldn’t be just about being grateful, happy, positive all the time.
It’s not a graphic with French script font writing on a sunset background. Not a generic phrase found on the interweb.
Life isn’t realistically like that. I don’t want people thinking they are not coping or feel inadequate because they feel angry or sad some days about it all, whilst some people as seemingly sailing through it because what they read, doesn’t tell the full truth.
It’s natural to feel fed up with it. Scared sometimes.
But, as my wonderful Dad used to say, ‘you have to be right about the job’ and I will be, always.
Good or bad.
Maybe it’s the way I am at the moment. I’m feeling a profound sense of loss over alot of things.
Please don’t get me wrong. Even when I feel like this I still feel grateful for being sort of OK. There are days, most days, I’m positive about this. I feel I can ‘beat’ this somehow or avoid it for a very long time.
Maybe unrealistically. I feel I will stay as I am now.
So, when I’ve been and investigated this I will tell you all about it. To help other people who are unsure what happens at these courses.
PICTURE DESCRIPTION Cartoon depiction of myself long red hair, making peace sign with hand.
One Vision Blog 