UK Keratoconus Self-Help and Support Association

Well now i really give up with my eyesight. Spent all night in so much pain, and suddenly went photophobic, when i normally need loads of light, and so took myself to Moorfields. And if my poor eye didn't have enough to go through recently, now i have iritis and am off sick again.

I just give up, can someone please fast forward to 2006, as i hate this year now as nothing has gone right at all. Am back on steroid eye drops and now have dilating drops and am in too much pain so hiding in the dark.

Driving myself insane again as after four months of near blindness and only being able to see for two weeks, i'm back where i started. I know this doctor says two weeks, but look where that got me last time, as it turned into almost four months.

I think i'm going to just register myself blind and be dam well done with it, as i'm losing faith in joining the land of seeing again. And i know these things just happen, and that others are so much worse off, but i'm just angry right now and needed to say so. Sorry.

sweet

Sweet

You should write a book of poems about your eyes it will cheer us all up.

Take care and get well soon

Drew

Hi Claire

Are you just trying to beat my record for number of visits to the eye unit? We would make a great pair between us.

How have the scleral lenses been doing?
Maybe reading
http://forum.keratoconus-group.org.uk/v ... ight=#5428

would give you some other info about scleral lens wear. There should be other threads as well with silly stories about lens insertion. If it makes you feel any better it took me ages to get used to getting them in, coming out was fine but going in was very frustrating and plenty of water was spilt/thrown in the process.

Hope things are better soon.

best wishes
Susan

Hi Sweet

I know what it's like. Actually I was registered nearly two years ago, but I didn't give up.

I had a graft in my right eye in 2003.

I was using a scleral in my left eye, but I can't wear it any more. I'm waiting for a kerasoft, but the first one was too tight, so they have ordered up another.

Meantime, my right eye continues to make progress. On my last visit to the clinic they said that the new cornea is stabilizing, and that I should expect to be able to start wearing a lens in that eye gain as early as next month, so after spending this time without useful sight, I am (at last) looking forward to seeing again.

through all the above, I have been grateful for the fact that this place is a good place to sound off! Take courage. If you ahve to register, there are benefits in that, too. All I have to do is wait to find out how complicated it is trying to UN-REGISTER!

Sweet, you're still the same person whether you register or not. Just do whatever will make things easier for you.

Sweet,

Once registerd blind, you can always take your self off again. When I started Uni was was registerd blind. By the time I graduated my sight post graft could be properly corrected all the time so no longer registerd.

Have often thought about registering again as without the lenses I only see very blurred shapes. To get around without asking for regular assistance, I should really use the white stick!

Regards

Gareth

Oh Claire, how much more can you take?? I am so so sorry. What a summer we have both had. I am getting there, I think, not sure what will happen when I put lenses back in and am a bit scared to do so..... Being seen again in a couple of weeks. Thinking of you, chin up and all that. Jacqueline. x

Hi Claire

Just thought I would update you on my hospital appointment of today. Well how did it go .... all quite doom and gloom really however I am past the point of stressing about it now.

It seems that my right eye which is my bad one and I was offered surgery for back in March is now my GOOD eye!!! Today for some unknown reason it is not too far away from driving standard and definately VA is better than my left eye which is normally ok ish however today could only just manage the top line first letter ...... and that is with my sclerals in!

So it is back for another refit in 4 weeks or so and don't wear the left lens when I can manage without. If the refit doesn't work then possibly glasses over the scleral may help although it is not certain, the only certain thing is my eyes are at it again and even the hospital I feel are puzzled as to why this change now and why so drastic. Maybe the left eye just got fed up of carrying the right one.

Hope you are ok and things are getting better for you.

best wishes

Susan

Susan, that must have been a dreadful visit. Be sure that we are all thinking of you.

Andrew

AI AI Sweet! We're all thinking of you and hope you get back in swing of things pretty darn quick!
you sound off anytime you want mate!

Regards