UK Keratoconus Self-Help and Support Association

it cant be worse than this

not being able to tell who somebody is whos standing literally 5 cm away?

Stokie.....can you still close your eyellids? In the most advanced cases the cornea protrudes to a point that will not allow the person to fully close their eyes.

See? Things could be worse.
You might have a bad case of KC and also have focus difficulties, e.g. near sight, or far sight......and/or perhaps some retinal troubles, too.

At a distance of 5 Cm you must be making lots of new friends anyway.

Look the bright side Piper

Hi Stokie

Like Piper said im one of those who cant fully at times fully close my eyelids depending on how my Sjogrens is the most annoying thing is the clicking noise when my lids get stuck and are trying to open up again and the other problem is when i try to blink and i cant as my lids are stuck (its pretty mad ).

Havnt you got lenses?

If so please try to wear them and build up the wearing time because its so worth it and you will have a much better quailty of life.

Try not to think the worst/thats it because then its beaten you.

Take care

luv

Emma xxx

The worse thing about living with KC is watching all those poor "normal" sighted people going about their normal lives and thinking that they will have never had to overcome any major challenges and therefore not receive the benefit of overcoming the challenges we have faced.

I believe that KC patients are stronger characters for this reason.

i have no problems closing my eye lids

i wear lenses yes i can see clear as day through um,it's just the amount of time i can wear um a day,one day it could be allday anotherday no longer than 30 minutes

p.s i wouldnt say i was blinde without them either,so therefore i apologise i havnt got the worst case

Stokie,

It is ok to come here and shout!! Hehe that is what this forum is for!

I would say though that most of us have very poor vision without lenses or glasses. Most of us also go through really bad eye days when we can't bear lenses for more than ten minutes. A few years ago I had seven months off sick as I couldn't put my lens in to see, I am pretty much blind in the other eye. I did take it badly but I learnt the hard way about struggling to get things done and made a lot of fantastic friends along the way!

True, I got knocked over by a car as I wasn't paying enough attention on the road and was busy talking on the phone! But ... I learnt that I can't take anything for granted. Now I have just been diagnosed with MS, but nothing can be as bad as losing your sight. For each day we should be grateful and make the most of it, so unless I suddenly get worse and can't walk I am grateful for what I have. This is hard and I read similar when I couldn't see and it was the last thing I wanted to hear!

You will find your own peace with KC though and it is so reassuring to know that you aren't alone in this and that you have so much support here. Please don't give up with trying to find you in all of this, we all need time to share our feelings no matter how depressing they might be. Most of us feel like we are the worst off at times. In time though we will find some peace with everything that we have to go through, and the friends we make in our journey will always be there!

I think we all here have had days, or parts of days when we feel like we've got the worst case. That is why the forum is so important as it helps us keep prespective and realise that we are not alone in this.

That said, when things seem really bad it is small comfort to know that others are suffering as much or more as you - you are experiencing what you are experiencing and we can all accept that it is not fun so don't feel you have to apologise for not enjoying it and complaining sometimes.

I also find myself wondering well just how bad my KC is. I know from reading what is posted here that in so many ways I am lucky, but that does not mean I am finding all of this easy. Right now I am coping, and coping well, but sometimes I cope much less well and the future can feel very uncertain and scary. I know I have KC but I don't know if it is moderate or severe - i guess moderate but I don't know if it will stay that way and I have had days (particularly november/december last year when I could not wear my lenses due to infection) when I could not imagine how it could possibly be worse - and yet part of me knows it can, which is not exactly a comfort

Brigid

Stokie

Before I would let them operate on my eyes, I waited until I was legally blind in both eyes and unable to wear contact lenses. Then, and only then, did I let my ophthalmologist start prodding my eyes with sharp implements.

I had not been properly closing my eyes on the 'blink' for a while, and my wife told me that I even slept with my eyes not properly closed.

With surgery behind me now, I have excellent sight and it ought to improve when the sutures from my Oct 06 DALK have been removed and I have been fitted with a contact lens.

Even when things are at their darkest, the possibility still exists for improvement.

Andrew