UK Keratoconus Self-Help and Support Association

hello
My name is Ali and I'm 24. I was diagnosed about a year ago now with keratoconus. I always found that my vision became blurry even a few weeks after having a new prescription, I noticed this probably a year or more before i sought help for it, reason being I don't know what all the seperate parts of an eye test are for but whenever they asked about which circles or lenses were brighter/bolder/sharper etc i never noticed a lot of difference so would say so, and they would say but if you had to choose....? So I would say one and then thought I must have given the wrong answer so my prescription was wrong. Last year though i had just shelled out uite a lot of money on some new glasses and they blurred within a month so I went back and explained it all. I also have what I can only describe as a "weak" feeling in my left eye, it always seems to want to squint and almost always feels achey and sore. Anyway, long story short I was given a hospital appointment and it was agreed I had KC, I don't know exaclty what the severity is but I know my left eye is much worse than my right, but my consultant seems quite untroubled by either, so I imagine it's nothing too major comparitively speaking. I have contact lenses to correct it, but I have a 10 month old who sleeps badly, obviously I sleep badly too and I find wearing contact lenses when I'm tired to begin the day with it is almost unbearable by the end of the day. I struggle most days to read a lot of things, people joke that I'm blind or something and I laugh too but I hate it, I feel quite vulnerable not being able to see properly and I hate to drive in the dark cos I don't feel like I can see very well at all. I cannot currently see out of my left glasses lens, although my right is near enough perfect. I get a lot of headaches, eye aches and a general feeling of discomfort to the point sometimes where I just want to pull my eyes out to make it stop. i can only imagine how it feels to be badly affected as this drives me completely INSANE!!! Nobody seems to think it's an issue though, just a bit of a weird thing I have that's not very important. It is important though, to me. I feel like although i now have a reason for why my eyes are so uncomfortable and a real reason why my glasses get blurry very quickly, I'm not really getting any recognition of it...I don't mean I want pity and sympathy from everyone, far from it, but when I say to someone i don't want to drive at night as I can't see I don't want people to think I'm making excuses. If I say my eyes are sore I don't want someone to say yeah, mine too. Cos I hate to whinge on here and I know other people suffer from other things, but I am in pain, actual pain and genuine discomfort, not just kinda itchy eyes, you know.
Ahhhh sorry this has turned into a bit of a moan. Just wanted to say hi, introduce myself and say how pleased I am to find this site cos I have never spoken to anyone else with it. Good to know I'm not the only one with stupid eyes.

Hello Ali

Welcome to the forum. No need to apologize; this is a place where we can all moan! It is good to meet you.

Have you ever tried to irrigate your eyes with artificial tears? I use Clinitas Soothe, and this makes it possible for me to wear my contact lens much longer than would be possible of my eyes were dry. When my eye begins to feel itchy I take out the lens, drop in some Clinitas Soothe, and after a moment or so i can pop my lens back in.

I keep the drops in the fridge. Cold clinitas into an itchy eye is one of life's great pleasures.

Every good wish

Andrew

Hello Ali and welcome
As Andrew says, no apologies needed - you'll find lots of people here will recognise what you describe. Have you looked at the home page of this site? You'll find some leaflets you can download there about KC and work which may help to explain to other people how the condition can affect you www.keratoconus-group.org.uk/sitev3/publications.html
And if you'd like more information from us, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you our basic information booklet and DVD of the last conference. We also organise regular meetings in London, Birmingham, Leicester and Glasgow so if you're near any of those you're very welcome to come and meet other people with KC in the flesh!
All the best
Anne

thanks for your replies
I hope I don't sound too sily asking this but are artificial tears the same as eye drops you buy? I know i have trouble buying eye drops as they all seem to be not suitable for contact lens wearers which is why I ask! Where do you buy them from? i live in a little town so not sure if thats why I have no real selection of them or if I'm just looking in the wrong place
I think I may print something off for work so thanks for pointing them out, I only work part time luckily but it's hard work. I have an appointment with my consultant at the end of the month so I'm going to speak to him about the discomfort I get, maybe a different type of lens could help. I don't know what I have at the moment, I think its a RGP in my left eye and a standard contact lens in the right as although it's slightly irregular it is literally only slightly!
Thanks again for your help

I always buy my artificial tears from an online source:

http://www.dry-eyes.co.uk/acatalog/Clinitas.html

You cannot use the drops while lenses are actually in the eye: pop your lens out, insert the drops, blink a couple of times and then replace the drops.

If you have any concerns, speak to your optometrist. it is always best to be well reassured before embarking on a new activity.

Andrew

hi ali,
there is a difference between artificial tears drops and eye drop s like 'eye gene' . the latter make your eyes white... you should avoid these, and stick to things like Opti-tears, Cellu-fresh, Cellu-visc.. they are called 'comfort drops for contact lens users', and should be available at your optometrists or Boots or Superdrug or any pharmacy...
you should also be able to find a solution which is more comfortable, and hassle them until they find something for you. there is a wide range of lens types. perhaps research a bit on this site and ask about them at your visit.