UK Keratoconus Self-Help and Support Association

I have only known that I have KC for a few weeks now and at first I was very shocked then worried, then I was determined tp get on with it and now I am fed up! Really really fed up! And worried, I am due to go back to the opticians in feb and have the cornea checked out , if there is significant changes I will then be refered to the Hospital for contacts, and thats worrying me!

Donna

Which bit is worrying you?....Maybe the board can help you here...if you highlight the areas with questions we all can chime in....this can only but help?

J

donna

Most of us, most of the time, manage pretty well just to get on with life. sometimes KC throws up very funny situations, sometimes it is a bit of a burden.

When it gets bad, do as you have done here: open a string and share how you feel. When it is bery good, do the same; we can all do with a bit of encouragement!

Whether it is good or bad, you will find that you are not alone. For now, enjoy everything you have and everything you can see. If you do ever need contact lenses, then they have advantages as well as disadvantages.

All the best

Andrew

Try not to feel to badly. You are not alone we have all experienced this 'fed up' feeling. We are all here to support each other. Being fitted with contacts is really not so bad at all so try to relax and enjoy your Christmas.

Getting down is quite normal, especially when you do not know what the future holds.

Getting lenses is not the end of the world. I have had lenses for 2 years now and my KC has been stable for all that time.

We have a recognised disability so there is plenty to help us lead a very normal life.

As I have already had two grafts, I was not even sure lenses would be suitable. Thanks to the support of everyone here and the hospital things are fine now.

Hi Donna

Like so many other problems we come up against in life coping with our KC is one long rollercoaster ride of emotions. Up one minute, way down the next. The not knowing what's going to happen is the worst isn't it? Making choices and decisions you can't be sure are the right ones. The feeling of not being in control of your life and your future.

I know it's easy for me to say (especially after I didn't get on with my own) but try not to worry about contact lenses. There are so many options now that weren't around when I had lenses so if you do need them it should just be a case of working your way through them until you find one that works for you. The biggest benefit of all is that if you do need lenses then the chances are when you get them the improvement in your sight will leave you literally quite stunned.

Take care. Be kind to yourself.

Thankyou everyone Its so nice to have a place where I can be honest about how I feel and get true opinions from people who know how I feel.
I think the hardest part for me is that I hate hospitals, eye tests and such like. I am also a single parent and was worried about what would happen if I couldnt get on with lenses.And how I would cope with work etc.
I also saw the price of all the lotions and potions that are needed to clean lenses etc and all the worry overwhelmed me for a while, I am okay again now and have had a really good day today, my eye has been a bit better today, I had 3 bad days last week and ended up buying some eye drops because my eye was so sore.
Thanks for being so lovely and answering me xx

Hello Donna, I am sorry for your case. I think that one of the worst parts of the KC is the uncertainty of the future.

Try to inform yourself as much as possible about the condition and make sure your specialist is a good professional.
Other than that there's nothing to do except trying to be calm until february. Things don't always go down so try to stay hopeful.

cheers

Glad to hear you are feeling better Donna! Just wanted to say that I can personally relate the to the ups and downs as well as all of the other comments posted above.

I agree the most concerning aspect of KC is coping with its uncertain progression and the lack of a definitive cure.

It got me thinking that maybe the 'system' could do more with the psychological aspect of treating us KC patients?

Anyway, whilst at times it can seem really hard, I'm a firm believer in the old saying, 'every cloud has a silver lining'. So whenever I feel down I always try to focus (excuse pun) on the good things rather than the bad. Life's too short!

In the three years that I've known about having KC, its really given me the motivation and drive to get on and get the best out of life - My girlfriend also prefers me when I'm wearing my specs so I guess there's another bonus....