Scared - first Hydrops experience!

[Andrew MacLean]

Craig

Try the RNIB website for sun glasses. They offer a rnage at really good prices.

Andrew

[rosemary johnson]

About scarring: there's likely to be a little bit of scarring, at least. If it's been a big, bad split, there may be quite a lot of scarring.
depending how big it is, where it is and how well you can cope with blurry vision, you may find you can't even notice it, you may now your vision's a bit "odd", or it may be a major distractor an dhinder you in how well you can go about your normal life.
Oh, what type of job you do will also make a difference. If you work at a computer screen all day, or in a lab peering down microscopes, or making very delicate jewelry, say, it may be a big problem have a post-hydrops blurry bit, whereas if you were, for example, a football pitch groundsperson, a landscape gardener or a groom in a stable, it might be no problem.

basically, it's up to you to say if you're coping and would rather go on doing so.
Some of the health care establishments seem to have the idea that "hydrops means graft", and tend to assume it will be necessary - there are also some who want to rush into it, before the waterlogging has even cleared, which isn't a good idea - but it need not follow.

As regards small ones not being recognised: yup, can identify with that! My first two were un-missable, but the third .... I was having a spell of problems with contact lenses and "bad eye days", and tried peerig very closely into the eye in quesiton (the left one). hen peered very closely indeed, and wondered if it were just my imagination, or was the little bit of slightly cloudy patch left fro the first hydrops in that eye bigger and whiter....... couldn't see, of course, without lens..... couldn't really see with lens, not well enough to be sure it wasn't eithe r a reflection or paranoia.

It seemed to get a bit better after a couple of weeks. Then when I next went to moorfields I said to Ken I'd been wondering whether I'd had another, small, hydrops and said why.
"Shouldn't think so," he said. "People don't get more than one hydrops in one eye."
Then he pulled out the table with the slit lamp on it, and had a good look.....
..... and said e thught I was quite right!
Rosemary

[craigthornton]

I know I'm going to seem selfish saying this, but I find it hard having a "partial disability".

I have to go to work for 7.5 hours a day, looking at a computer screen with one good eye and one blurred eye.

If the disability was worse, I could qualify for benefits and be at home.

There, I've said it. I'll wait for the PC brigade to jump on me....

[Andrew MacLean]

craigthornton

Not selfish at all, you just express something of the frustration with which we live. I used to be "part-time" blind. At home I would take out my lenses making me legally blind in both eyes. My children got used to doing a running commentry omn the tv programmes etc, and I got used to doing all sorts of household things withoutseeing.

But outside I seemed perfectly normally sighted. I wore lenses so didn;t even seem to need specs. People made no allowances. Yet sometimes I'd have to venute out without lenses. I looked exactly the same! People became confused and bewildered when I failed to recognize them.

Then I became unable to cope with lenses. I was registered blind and all sorts of goodies began to come my way.

post script When I got my sight back after surgery, the ticket clerk in the local railway station wondered why I was buying a ticket when he knew that I had been given a blind persons travel pass.

I explained. He grinned broadly and said, "That's better than a travel pass!"

He was right.

Andrew

[jayuk]

Craig

Alot of how you cope is down to individual personalitys and beings...if you want this to be a disability and want to claim and get benefits..then thats fine.......but if you want to carry on as well as you can and not just take the easy way out (assuming you really CAN function)...then thats also fine.....

Functioning with one eye is perfectly possible....hell I have been doing it now for 3 years.....and I do not see this as a disability or something I can use as an excuse....(not saying you are btw).....

I go to work from 4am to 7pm, drive around 120 miles per day...and get on ...all with one eye.....the other I have no acceptable vision through (ie I have to put my hand about 5 inces from face to see fingers)...so you see......its how you see it...(excuse the pun).....

J

[craigthornton]

jayuk, I see what you are saying. If the sight in my right eye was NIL i.e. black or whatever, I would be fine. But it is the swirled/blurry image associated with KC that is constantly distracting.

[Andrew MacLean]

Craig

This bit is hard, but try not to look through the bad eye.

After a bit you can learn to turn it off. for a while I had lenses that gave me different sized images in each eye, so that I leanred to choose which eye I looked through.

I was glad I had developed this skill, because later when I was wearing one lens for part of the day and the other for the rest, I had to switch betweenleft and right eyes.

If you try to look through both eyes you will get a lot of confising data from your bad eye and the world will look very odd indeed.

Andrew

[jayuk]

Craig

I understand that effect and feeling...but time will ensure that this annoyance goes away....as the brain is a clever thing!

J

[Andrew MacLean]

Craig

There was a day last week when I was feeling down, and to be honest had begun to enjoy a bit of self pity. Lots of things were not going well for me. Even my good eye was not so good.

I turned on my computer and there were a couple of eMails telling me about topic replies on the forum, so I clicked the little string tht links to the page and right in front of me, in large friendly letters, was Jay's sig line.

Craig, this is a difficult journey to travel. Given the choice we all would have chosen a different path, but I agree entirely with the words that appear at the foot of every post in jay's name (as well as with a great deal of the good and well thought out advice and help he offers in the body of his posts). KC really does give us a unique opportunity to rise to challenges and avboid accepting limitations.

Let me give you a tip on how to begin to 'switch off' your bad eye.

Look at something in the middle difference. You will have a clear image from your good eye and a blurry, swirly image from the other eye. The blurry, swirly image may even appear in a different plane.

Now pick out a detail that you can see in the clear image. You will probably not have any corresponding image to this in the blurry eye.

Look carefully at the detail, and notice any other features of it. Perhaps it has colour, or a special shape.

blink if you need to but keep looking into the middle distance and shift your attention to another object. Again look at a detail in the new object. the blurry image is still there but by now it may be less obtrusive. after a bit, you will not be able to say, in all honesty, whether you can see it or not.

Andrew

[craigthornton]

Went back for a weekly checkup after hyrdrop, was in and out in 5 minutes!

Was told to not continue with the drops (which dilate my pupil) but keep going with the ointment.

I apparently am under one of the best teams in the country as my usual hospital for KC checkups is Nottingham, whereas I went to Lincoln my nearest one last week as I didn't know what had happened.

I was told to wait for my next regular KC appointment with Nottingham, which is 11th May.

I was thinking though. If by some miracle the hydrop cleared up quickly before then, will my regular KC doctor know it has ever happened??!!