SoMeTiMeS dOOm aNd gLoOm!

[Tom Gardner]

Often a lot of people on this forum can be doom and gloom about KC - which is understanding as it can be fustrating for all of us. But instead of often bringing the negatives out of things, try and look at the positives and overcome KC and don't let it dominante your lives. I just push it to the back of my mind, and if I have a problem then I see it as a challenge and overcome it! where theres a will theres a way. .

The way the development of research of KC has come along over the past 30 years it is likely that in the future the "disease" will be a lot more manageable and a cure could just be around the corner.

Turn the negatives into positives because this will make everyone happier!

I hope I am making sense. .

[Drew Radcliffe]

Tom

Don't you think that sharing the negatives in this way is best for all of us? If we know the pitfalls we also know the benefits and can focus ourselves on attaining them, that is when we will find the postives we need to thrive, and some of us have to live for today and not 30 years time because we'll have our feet up reading our SAGA magazines by then.

Drew

[jayuk]

Hello Mate

I see what you are saying and Id say that as well until my KC got to the point where it started affecting large areas of my life.....

Alot of it is down to how you are as a person....if you are the laid back type that takes things slowly and are happy with life and not so much a go getter; it CAN be easier to accept and cope

If you wana be above "normal" in career and have the mind set of not accepting the norm and going out there and getting more and making the most of life.....KC can kick 7 light years out of you.....dont get me wrong .......there are differnet types of people.....there are those that are happy with a life whereby work is a fine and dandy 9-5, no stress, there happy with what they have , 2 kids, mondeo, holiday every year, etc...and thus are also able to cope with KC....when relating it to how it can interfer with work, life, career etc

However the other side, which is where I am coming from is where you are a go getter.......and dont just accept "normal" things.......or "usual" if I can say.................the type which does not just want a usual job paying a usual salary...but wants more and understands that you live a life once and thus want the most from it.............thats how I am as a person...............and beleive me..........if you dont grab KC by the ass and deal with it at the Advance stage.....then its down hill..........I understand your post MAY have come from Susan's earlier posting.........and completely understand why you made it.......and Id have said something similar about 3 years ago.............

Now I dont know your story and what stage you are at with KC ......but from my experience.......it can get you down..........and it got me down about a year and a half ago....whereby one nite I sat on my bed and for some odd reason cried lol......and that was the last time I let this bast*d get to me........thats prob the first time in my life I have let something get to mee soo much.....and it was the last....................when I see posts from Naeemkhamkar etc and what he has gone through......I thank my lucky stars.....and yet ths guy has taken it in his stride...........although he has fought and gone through a ride as his sig states

KC affects ppl differently....but to me it was getting in the way of what I wanted to do and get out of life............and thats when I dealt with it...............

I agree that times have changed for KC and dealing with it....but not enough...I would highly doubt there will be a cure for KC as that will not help any one aisde from the sufferers..but there will be other treatment methods which will better those that currently exist.

I think if we dont come to a forum and air our inner feelings you can potentially kick yourself into depression......if your mind is that way inclined........

JJ

[GarethB]

The experiences we share need to be balanced.

If you find a way to cope, please share it as we can learn from it.

If you are having trouble, please share it as someone may have been through the same and found a solution that has not been posted before.

I feel most people look for this site when things are difficult, so the contributers here may well distort the norm (if there is one for KC).

Human nature means we are quick to complain but slow tocomplement.

[paula hardman]

The doom and gloom is coming from people who are obviously very stressed - when you've got to that point it doesn't help to be told to pull yourself together. In fact it's probably the last thing you want to hear. Stress usually comes from a lack of control over a situation and a lack of understanding from other people so letting off a bit of steam here is probably the best cure.

[Susan Mason]

Tom

From what I can remember from your previous posts you are still quite young, 17 this July I seem to recall. That means I am old enough to easily be your mother and have been working full time for longer than you have been alive.

Hopefully your KC is still at a stage where it does not cause you too many problems and allows you to still participate in sports and activities that young people today are involved with.

I remember from a previous post you said you had recently applied for your provisional to allow you to learn to drive and you were questioning the medical implications of KC and driving. So far I don't recall seeing any posts from you as to how this progressed, do you now have confirmation that your provisional will be with you for your birthday?

As for the doom and gloom, well what you have to remember is that we are all different and as such all have very different experiences of KC and it's impact on our lives.

For me as it was diagnosed late and therefore, I already had a career, could and had been driving for around 14 years and had a small child to look after, initially it was a big shock.

I had seen an optician on a regular basis since 18 and at no point had anything ever been a concern, I had glasses and also wore soft contacts when I went out however no one ever suggested this was an issue.

Two years after the KC had been diagnosed for me things went down hill very quickly indeed, NOW THIS IS NOT TO SAY THAT IT IS NORMAL. The hospital were surprised at how fast things progressed however were the first to say that KC has no routine or set path it follows. Two years ago I was being told that transplant was a long way off for me, if ever needed. Now it is being seriously looked at, although as most will be aware is not a certain cure.

If it was my post that you felt was 'doom and gloom' I would just say one thing, others are not forced to read posts and experiences are personal to us as individuals.

The last 12 months for me have been very difficult and mostly due to outside influences that can't be controlled by me. Now at 16 going on 17 I would not expect you to have to deal with the same issues and hopefully you never will however, I am aware that I am not alone with the issues I have had.

Recently I have spoken to several other people with KC all to one extent or another have experienced like issues and also I have spoken to another partially sighted person with a different eye condition who too I have found meets with discrimination on a day to day basis.
Until recently I would not have believed that other human beings could be so thoughless or wrapped up in their own affairs, seems I was wrong and as such whilst I won't go into great details as it would just bore the 'pants' off everyone, I will on occassion post and ask for advice or comments and hope that whilst doing this not only will I benefit others will do so too.

Susan

[Sweet]

(((Tom)))

I can understand what you are saying, and i might have thought the same thing early on with KC, but now i have to disagree. I have posted sad posts as well as right now that is where i am , and i need some support. That is what we come here for, hoping to share with friends who understand and have been through it themselves. I think we find a place like this when we are hurting, and then stay to give the support we had back to others when we have moved on in healing.

I have had 13 years pretty much with a lens with my right eye though early on i scarred my left one too much to wear a lens and so have only had one since i was 16. And it has only been the last couple of years that i have been in so much pain, and indeed the last month that i have lost sight. But sadly this is what happens, and the word here i think is chronic. This is a chronic condition, it can be stable for years and you dont worry about it, just go on with your life and forget you need lenses, until one day you have a problem and everything falls apart. Hehe and as someone here said you get a mondeo as well! LOL!!! But i changed mine to a focus!!! LMAO!!!!!!!!!!

After reading here and going through it, i know that people come here and vent when they are at the end of their tether and need some support, they have managed with the problem for a long time before they complain. Sometimes though it is the end of the line and we need to share, there is no need to be a martyr when you need help.

I hope that you will not know this at all, staying positive i think is what we all do. Coming here is a positive thing, if we didnt want to share and support each other, we wouldnt come to a forum where we talk about the condition! Its just we cant be positive all the time, we need to vent and be angry at times, and this is a safe place to do so.

I read and reply to sad venting posts as i can relate and i want to be supportive. It also makes me see that i am not alone and that others here sadly have to suffer with all the problems i have. I just hope that we can find ways to overcome these just as easily!

Take care everyone

Love ya! Claire X x X

I'm not opinionated ... i've just mastered the art of self expression and freedom of speech!!!!!!!!!!!! (Sweet)

[Susan Mason]

Tom

Just to say a big Thank you for your private message, it was not necessary however, it did show you have a very mature head on your shoulders for someone so young.

I hope you can continue to find the information to help you understand KC and remember we are all different and will all experience different hurdles to overcome.

best wishes

Susan