UK Keratoconus Self-Help and Support Association

I started this on Twitter yesterday so thought would be good on here as well

The few from me thus far

* you know you have KC when you have to phone your mobile phone from your house phone to locate it and follow the noise

* you know you have KC when your home suddenly appears to be a obstacle course which leaves you coated in bruises you can't see but others can

* you know you have KC when you use the wrong ingredients in your food cos they're in similar shaped packaging



Over to you ,,,,

* you know you have KC when deciding its safer to make a regular appointment at the hairdressers than get shampoo in your eyes AGAIN

you know you have KC when:
... your eyes are so red that people think you have been smoking marujana!
...when you have constant panda eyes... because you never take your sunglasses off

* you pick up the little bottle of peroxide and extrude a drop into your eye thinking that it is chloramphenicol.

* its 3.40am and your awake due to extream pain from a bandage lens for the 3rd time in 17 days post DALK n realisticaly know a&e is where you should be not in front of your laptop

when the passenger is your car is sweating prefusely and keeps shouting out funny comments like "watch out!!!" and "argggggggghhh"

to read the screen of your mobile you have to hold it about 8cm away from your face.

you realise despite the clock change you have slept for the first time in G-d knows how long for over 11 hours, then think -eek- at the junk in your DALK'd eye!

- at last somehow you fid the decent sunglasses you have spent 2months looking for! cos you tripped over them (you have no idea how happy I am this afternoon after finding my O'Neal snow boarding sunglasses which elimate all the glare in life)

-- Someone sees a photo of you squinting at a phone held rather close to your face looking bemused and says "that's such a classic *insert your name here" photo!

*you fall down some stairs, don't ealise until you hear noise that a neighbour noticed you * (then pray the evidence doesnt end up on youtube

you know you have KC when you are asked to take down you hoodie in a&e and remove the pirate costume, reply with "do you want me to scream at the lighting in here now or later"

10 hours + sleep 2 nights back left you refreshed yesterdsy, 2 hours last ngiht will leave you cranky all day

You 'watch' dvd's with your eyes closed because you can understand it more from the sounds than by the blurred and double images on the screen.

More importantly...

You are at peace with having less than perfect vision and grateful that the world may vary in degrees of blurriness but will never be complete darkness.