UK Keratoconus Self-Help and Support Association

Hello Withnall

I just read your msg on the other post but was concious of not overtaking it from Ronak's original query.

I can completely understand what you are going through as many here will as well. I guess susan made some good points with regards to dealing with KC at work and the tools available.

But another side to is is Family......I have kept my condition basic to my family aside from my Wife and Sister....as in all honesty to tell all is more hassle than its worth. Many know have a eye issue and wear lenses but thats it......and like you say many dont really care...and I guess why should they..........but on the same side I can understand what you was saying about your scans of yesterday and people not underdtanding or calling.....I think my wife is the ONLY person who really understands the condition I have and always makes a point of coming with me to my appointments....and in all honesty thats all I need.........as long as I have her by my side its enough........but I do umderstand where you are coming from.......when I was not married id remember going to the eye unit on my own and then being told that the KC has got to an advance stage and have limited options, blah blah blah.....and many a times Id come home and sit in my room and worry what I am going to do.........but its how you want to deal with it.......I did on a few occasions get low.....but I think my chracter and attitude kicked the Lamer in touch and from then I didnt look back................and now I take it all as it comes..

Oh and how DID the scans go?


SNIP

Hi

I feel the same way in work. I changed to a large flat screen which has only helped a little. Have to squint most of the time and menus on walls on a real pain.

I find that my family and friends think that all i have is a regular eye problem and think that i am over reacting. My condition has really progressed over the last year and i have spent the last three weeks going to Eye Consultant, Contacts Specalist and Hospital for scans and i could of really done with some support.

SNIP

Hang in there...

Going to hospital appointments alone, getting a KC diagnosis and having no-one to talk it through with, wondering what this means for the future, and facing it alone - I've been there, done that. It's not pleasant I know, you have my sympathies.

No need to be alone any longer though, this forum is full of people who know exactly what you're going through and can help, even if it's only lending a friendly ear.

I found when attempting to explain the condition it helped to describe exactly what I see, for example:
"the image of a red traffic light is smeared towards the 7 o'clock position as far as the green light."
If they're stood next to you viewing the traffic light from the same distance it gives them some sort of scale to be able to work with and they can then appreciate what you might be able to see and what you'll miss.
This approach worked for me a few times, it may be worth a try.

best of luck
Graeme