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 ☺