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Does it ever get you down?

Posted: Mon 16 Oct 2006 8:13 pm
by jayboi2005
I know it does me, in fact I'm a bit low right now. I notice all the time now while I'm at college, the fact even when I'm sitting at the front i can't see. I'm having problems with reading music as well now, and that is one thing i really love! I'm just finding now that 9 - 5 at college 5 days a week is hard because i have to concentrate that much so i can make out whats on the board.

I'm having the same fight with my contact lenses again, some of you may remember all the trouble i have had with lenses in the past. It takes me that long to get them in that i just end up annoying myself because i cant put them in. Then when i do eventually get them in i blink them back out. Recently i have been forcing myself to wear them even though i hate them in my eyes. Then when i have gotten up an hour earlier to put them in (that's how long it normally takes me) i just end up blinking them out!

So I'm not happy at the moment.

Posted: Mon 16 Oct 2006 9:31 pm
by James Colclough

But it does get better, or at least settle down.

Tiredness and dry eyes are the killer.

I have worn lenses for almost 22 years. The first year was the worst.

Try and rest the eyes and good luck. I also found different lenses sometimes helped. That is a new prescription sometimes improved the comfort. Although optimum comfort does not equal optimum vision. I now piggy back this gives me comfort pretty much pain free and no change in vision.

I just have to remember to keep the eyes lubricated.

Posted: Tue 17 Oct 2006 12:10 am
by John Smith

If you really keep blinking lenses out so regularly, then they can't be a great fit.

If they are the best fit possible, then you should ask your optom whether you are suitable for a scleral lens? These are (despite appearances) quite comfortable and pretty much impossible to fall out.

Vision can be almost as good as corneal lenses, and if you can wear them for useful periods, these could be what you're after...

Posted: Tue 17 Oct 2006 9:43 am
by Barney
Can you not see the board with your lenses in Jayboi?

Think I'd take John's advice and talk to someone about the problems you're having.

If it's taking you a long time to put the lenses in that's likely to be when you're making your eyes sore. Maybe have someone make sure you're doing it right?

There are also techniques I find useful to flood the eyes with tears whenever they get itchy. I've worn contacts for over 40 years so starting to get the hang of it now. :)

Posted: Tue 17 Oct 2006 1:52 pm
by Matthew_
Its perfectly understandable to get the blues in the situation you are describing. It gets you down that good eyesight is achievable but just out of your grasp.
Yesterday, I had a trip down our harbour in a warship (I'm in the Navy). I felt nostalgic about being there, remembering I used to do that just a couple of years ago. But then I also felt sad because there is no way I could navigate on one now with my eyesight.
In some ways the adjustments are easy in practical terms but mentally coming to terms with a limitation is frustrating and depressing.

Good luck, I hope you can improve the fit on your lenses soon.

Posted: Tue 17 Oct 2006 2:56 pm
by brigid downing

I have been really fed up lately.

I have been trying since December, when I lost my last one, to get a lens for my right eye. I have tried several different sizes and techniques of fitting but the pain has just been too great. My eye is very sensitive to light and touch and the optom at the hospital has told me (last week) that I may just have to accept that there is nothing they can do. The eye is just too poorly.

After spending nearly a year (and well over £1000) on lenses and visits to specalists etc. it is hard not to feel that I have been chasing rainbows.

I do know that others have suffered more than I, and that the vision, with contact lens, in my left eye means I can still drive and continue my job - atleast most of the time. But I still get fed up and actually cried myself to sleep after my last visit to the hospital. I have so much admiration of those who post on these boards who have been through so much (especially grafts and periods of effective blindness) that at times I feel unworthy to post. But it is very hard not to get disheartened sometimes.

I think it is the pain that I find exhausting but not being able to enjoy my hobbies (reading, watching tv, sewing, card making etc) that I find so fustrating. I have about seven hours vision a day (that I have to use mostly for work) then I take my lens out and am extremely limited in my options.

I don't like to wear my lens more than that because I really do not want to risk anything happening to my left eye. It is something I worry about a lot.

Sorry - rant over, but like I say, i am fed up


Posted: Tue 17 Oct 2006 6:19 pm
by Alison Fisher
Oh Brigid. :( Unworthy to post? Never. I sometimes feel a bit of an interloper here as even though KC has a big influence on my life it no longer rules it.

A huge hug to everyone struggling with ill fitting lenses and having their life choices taken away from them by the curse of KC.

Posted: Tue 17 Oct 2006 6:51 pm
by John Smith
Brigid, I'm really sorry to hear that you've been feeling "down" recently. All I can do is hope that things get better for you soon.

However, I must add that I'm really glad that you and people like you do post to the forum. If it were left to those of us with two grafts and rejections galore, all the forum would be is a sounding board for ourselves. Any newcomer recently diagnosed with KC would soon run away petrified!

As things are, we have posts from people with a wide range of experenices with mild to severe KC and including those people with grafts, and those who've been told they needed grafts who have gone on to live a happy life without.

In my view, it is precisely this variation that makes the forum such a useful place for everybody, from newly diagnosed to old hands and everyone else in between.

Posted: Tue 17 Oct 2006 7:05 pm
by brigid downing
Thank You John amd Alison

It is very sweet of you and I really appreciate what you say.

I guess i am just trying to balance between collapsing into self pity and admitting what i really feel. I am truely inspired by much of what i read here, and know I have so much in my life to be grateful for. I rty to live up to the example set, but sometimes i need to be allowed to tell my truth. KC isn't always fun and I am not completely okay about the changes is has imposed on my life.

It is not all bad either - I got to join this forum didn't I! :)

Posted: Tue 17 Oct 2006 7:26 pm
by GarethB

When concentrating on aything our blink rate goes down and so they eyes dry out, this in itself can mean lenses are bliked out easier.

This might mean asking about eye drops to help, imporving the lens fitting or showing your tutors the student leaflet about KC and having handouts rather than staring at a projection screen all the time. I recorded my lectures so that I could make notes at a more leasurely pace so my eyes and me did not suffer.

With work I am likely to have to do a three year course and I have already approached the local universities that run the course and they have seen the educational leaflet and have said all I need do is let them know when I have enrolled and they will arrange for a 1:1 with the tutors to ensure everything I need is in place prior to starting!

Are you at Cov Uni?

That unfortunatly does not run the course I need to attend.