Posted in Funny Stories, How I'm Adapting

Hard to explain, hard to understand

This condition is very hard to explain… Very hard to understand if you haven’t got it.

I can see distance better than close up. So you’re maybe puzzled why I spot your purse, bag, etc on the floor, but ask you to read something for me.
I might stop to pick something off the floor that you haven’t seen, but believe me, if it’s small, about 99% of the time it’s not what I thought it looked like, I’ve picked leaves, bugs, pen tops, foil and far worse up before now thinking it’s a penny or something I’ve dropped. 😔
I will have to stop it… Sometimes it’s not good and makes me jump.
I will have a small lamp on inside and live in the dark basically. Now you might think no wonder I can’t see but, light hurts my eyes so badly now, that I have to have a soothing light on. Like my salt lamp.
I can see a bird on the bird table outside. but you show me one in a book or a photograph closely, then I will have trouble seeing it.
You might think well you have make-up on? Yes and a half an hour job rushing doing it before I went out even a few years ago has now turned into putting makeup on in natural light in the afternoon, with a big mirror, magnifying mirror, alot of staring making sure eye pencils are the ones I want.
The eyes take the longest to do. I now need alot of time to put this on. I don’t always use mascara now as it’s like brushing the air. Eye pencil is an exact, painstaking science to me. Why do I bother? Why shouldn’t I? It makes me feel better and more like me. I don’t bother through the day, unless I go out. It is alot nowadays, to do this long winded routine every day.
People think that my glasses help completely. They make the words sharper, enough to read, but won’t fill in blank spots. I can’t even see the blank spaces until they block out part or the whole of a word. Then I know they are there. Sometimes I have to move the phone around to see. Glasses ultimately will stop working for me one day.
Looking above something and moving my eyes around, especially in the dark, is when something will come into view to see it so I can pick it up. This is called Eccentric Viewing. You can have training for this but my eyesight started to do this on their own out of necessity.
At first I felt people thought I was making it up because of all this… I couldn’t explain it properly as I didn’t know enough about the condition I’ve always had unknowingly.
It was thrust at me out of the blue with little help and direction from the doctors. It was more or less.. ‘you got this, there’s nothing we or you can do…off you pop’
Really ought to get into the habit of taking photographs of signs so that I can read them myself on my phone. Although that is a pain as I need a bigger screen ideally and I really don\’t want to be buying a screen reader or taking my tablet out… (Still a little hiding it there I think) … I’m not ready to do that yet.
Posted in How I'm Adapting

Lip Reading

Woman looks angry with three friends as they are laughing behind her, and one has a map

Lip Reading

I was talking to my friend yesterday, and we were laughing about how… when we don’t want to anyone to hear what we are saying, we start doing the moving the mouth without much sound so you have to lip read thing.
I’ve never been able to lip read, so miss out on the gossip or the laughing as I haven’t a clue ☺
I usually get the response… ‘we will tell you when we get outside’, unless someone whispers me it.
But often they have forgotten and we have moved on to something else.
It’s not unusual for them to do this then crack out laughing. And I just say as I’ve said for 20 plus years.
‘I STILL CAN’T LIP READ!’
So we got to wondering, maybe this is the reason why. Macular dystrophy is there when you are conceived and deteriorates through the years.
It does make me laugh when we all do it…and I still have to give the same response, time and timely again. Think I always will ☺
Posted in How I'm Adapting

Things I’ve learnt in the last 6 months at least…

Things I’ve learnt in the 6 months at least…

⚫ Sunglasses are my second favourite thing… ever.

⚫ I’m more confident and safer going upstairs than coming down them.

⚫ Kerbs are a little bit frightening.

⚫ Scary walking in the dark. Can’t see the floor well.

⚫ I can read books again on my tablet with huge font.

⚫ I need my reading glasses on to DIY.

⚫ I cannot read a map without maybe a magnifying glass.

⚫ I need stronger glasses.

⚫ There really does need to be large font or Braille menus as standard. (I know… I’m mentioning this… AGAIN ☺)

⚫ I’m not conscious enough of my blind spots yet. So I trip over the dog when I’m walking her.

⚫ I nearly flagged down a lorry at the bus stop.

⚫ I won’t wave back until I can see you or by the shape of you that I find familiar. As I will probably find ‘your’ shape more familiar than your head and face at a distance.

⚫ A large shop queue behind me will makes me hand a note out to pay … Even though I have change.

⚫ A card machine screen and buttons need to be bigger.

⚫ I need to get a spare pair of glasses.

⚫ I’ve stopped saying ‘oh yeah’ whilst being shown a photo even though it could be anything. I will tell them to make it bigger for me or explain what it is. Even if I don’t know them.

⚫ I’m not hiding it as much. I can’t.

⚫ I will get someone to thread a needle for me. Ever since that time I tried to thread a pin 📍 with no bobble on the top.

⚫ I sew, if I have to, by touch, and looking very closely now. Only if I’m desperate.

⚫ Coins and notes are blurry.. I’m glad they are different shapes and colours. I feel the coins.

⚫ I’m feeling more things. (I’ve got a post coming about this)

⚫ I’m very grateful for being independent and having the vision I have at this very moment.

⚫ I pick stuff up off the ground if I think it’s something I’ve dropped… Sometimes a ‘coin’ is a dead insect, foil top, a leaf or something far worse.

⚫ The amount of times I’ve conditioned my hair rather than shampoo it is crazy. There should be a raised dot or something. What can’t they make the word Shampoo… Conditioner… Big?

⚫ You will be glad to know I’ve stopped putting berry coloured lip liner on my eyes thinking it’s eyeliner. I have no lip liner now, only lipsticks for very this reason. Made my eyes look like they were sore.

⚫ To look at things closely in shops, don’t presume a jar is tartare sauce because it looks the same. My fish finger sandwich was given the sudden surprise addition of horseradish sauce. Don’t think the dog appreciated it either. Same goes with natural yogurt and cottage cheese. Cranberry sauce and strawberry Jam…

⚫ Make up taking longer to put on. I have to put it on in natural light, as bright light is painful. A magnifying mirror is a must so I don’t look wonky or just permanently surprised.

⚫ Glare is like a screwdriver to the eyeballs. I’ve learnt to be more aware and I now turn away before it hits now.

⚫ Coming from inside to outside and vice versa, makes you momentarily blind.

⚫ When my Mum always told me off for picking things up in shops, maybe I was trying to see them instinctively, like my eyeballs knew there was something wrong but I didn’t know yet. I’ve always done this, even in adulthood. I picked up a cup thinking it was a sewing kit, was very surprised when it wasn’t. Thought tomatoes on a salad in pizza hut were strawberries and cream. Was going to order one for pudding until its was pointed out to me. Lots of moments like that when I look back.

⚫ I’m not ignoring you. I won’t have seen you.

⚫ I sometimes think someone is at the side of me due to black blob. I’m surprised when they aren’t (when I’m outside)… It’s abit unnerving inside (I now live on my own)

⚫ I’ve told the dog to get on her bed, when she’s already in it.

⚫ I don’t like photos of me because I’ve got a squint in them. Eyes trying to focus. I can’t see where I’m supposed to looking anyway.

⚫ I’ve always worn sunglasses on cloudy days but didn’t think anything of it.

⚫ Walking through a field isn’t relaxing. Uneven ground is worrying.

⚫ I use my hearing more to help crossing over a road as an extra measure as I don’t trust my eyes as much as I used to do.

⚫ Don’t always trust what I’m reading is correct and will read a few times. Or stare longer at an object to makes sure it is what I thinking think it is.

⚫ Text is often wavy, on a slant and I’m not sure things are straight.

⚫ Have to concentrate on washing up and dusting. Freaks me out.

⚫ Need a bigger phone.

⚫ Need a bigger television.

⚫ I’m very lucky to have late onset Macular Dystrophy. As in,… not lucky to have it… Don’t want it… But the late onset bit is lucky.