Would you change things if you could

[Libby]

Hi there,

I've just been thinking and I have now had KC for well over half of my lifetime.

My husband knows no other wife than the one that moans about cleaning her lenses every night, and cannot see properly every morning until her eye (Rose K - right eye) goes in. (left eye has always been a prob and only have wearing time of approx 6 hours per day).

My children likewise have grown up knowing that at times mum can see almost anything and at others cannot even see their faces. To them this is normal. So the thing is if we could would we change it?

Has KC been a positive experience for any of us.

Although at times I have despaired I do know without a shadow of a doubt that my KC has made me a better person. I will never again take my eyesight for granted, I also feel it has made me a more patient, compassionate person.

Even so I must admit that given the chance I would get rid of my KC.

I would be lovely to be spontaneous again. Jump into a pool and swim under water, rub my eyes, read in bed, fall to sleep whilst watching television, wear eye liner and false eyelashes etc - the list goes on.

What do the rest of you think - would you change things if you could - and what do you miss doing?

Regards
Libby

[Andrew MacLean]

Libby

Well done.

I know that I can cope with life having KC, so I probably would not change things even if I could. I remember going through the whole 'why me?' thing when I was first diagnosed. The answer came, "why not?" I then went through the whole 'Why KC?", and again the answer, "Is there some other thing that I'd prefer?"

I don't like having KC, but I took courage from the American poet and hymn writer, Fanny Crosby. She was educated in the New York Institute for the Blind and while she was still a child she wrote

"To weep and sigh because I'm blind,
I cannot, and I won't."

What do I miss doing; nothing. I have managed a way to do everything that I wanted to do, or found greater enjoyment doing the things that I can rather than pout about things from which I have been excluded.

Andrew

[Lizb]

Andrew, your post is spot on.

Yes if i could change things then i wouldnt want to suffer with KC, though neither would i want anyone else to. However life has a habit of throwing curveballs for us to deal with, this is one of those. I am a great beleiver in life is worth living and i find a way to complete anything i want to. Yes i may have to ask for help on occasions, but on the whole i am healthy, i have my mobility (yes on occasions it is impaired by lack of vision) and i have family and friends who love me and will assist anytime i need it, who i love dearly. I have the confidence to go out there and live my life, and tackle challenges head on.
There are a lot of people in the world a lot worse off than suffering with vision problems and i am thankful every day that my only impairment is vison (and sanity at times )

[GarethB]

Although at times I have wanted to change things, especially early on but if it wasn't for KC I would never have met my wonderful wife, never of learnt to be more tolerent of people. Five years ago when I had problems again, ny wondefful familly stood by my and so did work which has lead to a whole new career within the same organisation which included promotion and I am on track for promotion again. Something which I could never achieve when KC wasn't a poblem.

For me KC is part of my life and despite the ups and downs I have found on the whole it has been a positive expereince. I am now fortunate to be in the position of reminding myself I have KC because of the Kerasoft IC lenses. I get up and put the lenses in and have perfect vision up until the time I go to bed which is when I take my lenses out. One solution and within 2 minutes lenses are out and cleaned. This Christmas has been great so far beacuse not only is it 12 months since I went completly over to the soft lenses but with parties I have no need to worry about lens wear times and have gone several times to 20 hours lens wear on 2 or 3 consecutive days (depending on events) with no problems the folloing day(s).

Over 20 years on with KC, two grafts and a return of KC to the host cornea in my right eye I am fortunate in being very happy with life at present.

My wish for 2010 is for more people to have the same good fortune as me.

[Sweet]

It is lovely to read people here being so positive!

Would I change anything? No! Yes, it can be annoying at times when you are desperate to put your lenses in to see but can't because it is too painful. Or when I have had to have so much time off work because of lens problems and not being able to see. But I have learnt from this!

I now know that work will always be there and that life won't fall apart if I can't go in! I have learnt to be more patient with myself and my eyes and am always trying not to over wear lenses! I am grateful for each day that I can see well with lenses and am thankful to the professionals who fit me with them!

I am looking forward to having a baby in February and while I know that it would be so much easier if I could see as soon as I wake I will find a way around it so that it works. I am not blind, though without lenses I used to think I was as near to that as could be. But I can make do. I know that there are a lot more conditions that are worse to have and I am so grateful that my vision can be corrected with lenses. Sadly a lot of people are blind and cannot get any treatment.

Everyone has something that they have to overcome and it makes us stronger and more determined in life. Wishing you all a fantastic Christmas and New year!

Love Claire & 'Button' X x X

[Charlottes mum]

As mum to Charlotte, of course I would change things for her, she wouldn't have Down's syndrome! That would be top of my "list" KC is just another "thing", Down's is the main worry. A couple of years ago she asked me if she would still have Down's when she grew up? I answered, "Yes, just like you'll still have blue eyes and blonde hair. Its part of who you are and we love you. Char replied something like "OK. Can I have pizza tomorrow" I went off and had a little weep in private as you do!!

[Loopy-Lou]

KC is one more thing on my list and for me yes I would change that, I would prefer to not have had it, and as much as I appreciate my transplants I would have preferred to have not have needed them, and my life would have been different, it wouldn't have stolen my first career from me. I don't feel positive about having KC, I haven't gained anything remotely positive from having it.
Libby, you can wear eye liner, just don't put it on the inside rim of the eyes as that's not skin, but on the outside is fine. Waterproof mascara is fine with lenses [I use Lancome] and false eyelashes can be professionally applied [take lens out and have patch test for adhesive].

[chris1972as]

hi there, and happy new year... As regards would change things if I could, I would say no, like youreslf I have had KC for what seems like forever, majority of my adult life, I was also diagnoised with The Brittle bone disease when I was in my early twenties, been an asthmatic all of my life, and have had mental health problems, very low self esteem and so on... But no I wouldn't have changed anything because all of these problems, or trials as I call them have made me a stronger person, made me realise you can not take life for granted, something I often notice people in good health will sometimes do. I am grateful in a strange kind of way for these problems because they had made me realise how precious life is and how I grasp it now with both hands and totally enjoy it...

[optom]

I fully agree with Loopy lou , while I know KC is not life threating and there are far worse conditions you can be diagnoised with in your life time but i would do any thing in a heart beat not to have KC . I was diagnosed at 12 years of age , will never forget that year of my life .

[Loopy-Lou]

However we feel is ok, there is no 'right' or 'wrong' way to feel about KC, for some people its been the making of them, for others it's been devastating and we each cope differently and of course what else we've had to deal with in life impacts on this too. What matters is that we can speak of our feelings whatever they are