UK Keratoconus Self-Help and Support Association

HELLO

I have only just found you guys a few days ago and have been reading through your archives. (you seem a friendly bunch so I hope you don't mind!)

I was diagnosed with Keratoconus five years ago and with the support of my optician have been quietly getting on with it - trying to deny it is happening and that everything is ok. Over the past six months my eyes have been deteriating rapidly and I have had several changes of contact lens - often very uncomfortable. Also they keep making escape bids at inopportune moments (like during a lecture to 50 students or while driving on the motorway).

I have begun to feel like I can't just "get on with it" and have been feeling like I am going under with all this - pathetic I know but I have been feeling very alone. It is so good to read your messages and feel you positivity - I will try to learn from you.

Bea

Brigid

Welcome to the Forum and its good to see you post!

Your concerns are all too similar to many people on this board so I am sure you will find this a good place vent and also gain information!

Why kind of lenses do you wear? There are a number of lenses types and designs to suit various stages of KC, Sclerals being the most talked about!

If you do find that the existing lenses are causing too many problems with your lifestyle it may be worthwhile talking with your optometrist about other lenses types

Hope that helps!

Jay

Brigid

Thank you for posting, and welcome to the forum!

No need to feel alone! I have foudn this forum such a source of strength.

What do you teach?

By the way it is good to see another post from Machester. I used to work for the CIS, Miller Street, and have family all over Cheshire. At one time I even went sky diving some way to the North of you at Cark Aerodrome, near Grange over Sands.

All the best.

Andrew

Hi, Thank you for responding.

I teach future teachers at MMU

I don't know the name of my lens (it is amazing what you can manage not to find out when your trying not to know!). They are rigid gas permeable. They are very small and basically transparent - which is useful for seeing through, but not so useful for finding on the floor of a car! I have take to carrying a little torch arround in my pocket which I scan slowley across the floor hoping the lens will catch the light and make it's where abouts known.
Brigid

how bad is your vision due to keratoconus? im not very enlightened about the whole subject but maybe your eyes have reached a point where they are to deformed for a contact to sit on? either that or you need a larger radius lens

brigid downing wrote:...I have begun to feel like I can't just "get on with it" and have been feeling like I am going under with all this - pathetic I know but I have been feeling very alone...

I would never say pathetic dealing with KC isn't easy sometimes and sometimes we can feel a little isolated especially at the advanced stage. We're not blind, but equally, we have enough to manage and cope with - the daily stuff, lens in, lens out, wash this, flush that. drops here and drops there - always the reminder that our sight, isn't taken for granted.
Often, we dont give ourselves the true object credit that we deserve, not that we go around suffering in silence, but often we just get on with it. With varying degrees of sight, bad eye days, problematic lenses, when it slips (and it seems to happen right in the middle of something; sods-law I guess) there's that shock, without that little piece of fancy plastic, I'm as good as blind.
The, awareness isn't there, sometimes we catch ourselves playing it down but look at the precautions we take; the lengths we go to and often that suffices to just get on with life. But do any of us really take it onboard, that KC and all it's related factors become a part of our lives? Little stresses that we work and roll with, can add up, having good eyesight one day and all doubled-blurred eyesight the next is frustrating, can get to you at times - so no, nothing wrong with how we feel, and certainly not pathetic.
Its a right old pain in the backside, get that perfect lens and we can see, so we dont complain or make the top level of fuss, but wait, once it all doesn't work as well as it should - bang, bad day and a lot of things we could do, suddenly are either; not 'do-able' or just very difficult.
Also, occassionally it can be overlooked, KC can progress so slowly, that it is difficult to imagine what it was like before a certain stage crept up on us - like an episode of East Enders; you didn't mean to watch but did and wonder wow how'd that happen!
Hmmm, I'm ranting now, and totally lost my point, wouldn't be like me . Basically, having KC we just cope and deal with it, and mostly its ok but we all have the bad days, and, the bad days are what this site/forum is most useful for - and I'm glad you found it!
If we can't help around here, offer advice or a good group hug, pick someone small, not very strong, poke them in the eyes - you'll feel much better.

Brigid

Been there! Lens pops out (never at a convenient moment!) Once it popped out onto the floor of a crematorium just as I was going in to take a service. Fortunately the Funeral Director immediately recognized what had happened. My lens was sitting, open side up, in a little pool of light. He stepped forward and picked it up.

The organist also wore lenses so he went to ask for some of her wetting fluid, which he delivered to me along with my lens and with considerable apolmb while the congregation were singing.

I had it back in my eye by the end of the first hymn. Everybody seemed to think that the part of the little ritual they had observed was just part of the service

My advice is this: by all means take a torch wherever you go, but always have a person with good sight on hand. The difficult truth is that it is when your sight is at its worst that you have to try to find your lens amid the fluff and pile of your carpet!

AND Wales is slaughtering Scotland! Where's the justice?

Andrew

Nice to know Wales is making up for last week

If KC is so bad that the lens pops out, the RoseK stlye of corneal RGP pinch the cone a bit more so these may need considering.

An altrenative is a Scleral lens which is larger but has zero risk of just popping out, if it does then it is big enough to find.

My lenses are tinted dark blue which makes finding them in most places easier which might also be something to consider.

Regards

Gareth

Brigid

I lost mine in the Tesco Carpark opposite Parrs Wood, adjacent to Didsbury! And beleive me it was soo not funni lol. It was at the time where I was only wearing ONE lens..and as I was putting my bags in the boot i must have overstretched and that was it! PING!

SPent about an hour odd looking for it with the security guard! Luckily we found it!..UNDER the rear tyre!..or rather millimetres behind it

Jay's story of the lost and found lens trumps mine! There is a tale on the www of a woman climber whose lens poppled out while she was ascending a Mesa in Nevada. Evidelntly another climber (who had not begun her ascent) stopped to tie a lace and noticed an ant carrying something odd!

Later they passd each other on a path between the car park and the Mesa. The lens finder returned it to the loser!

Bea: you may just have provoked a KC site competition to find out who has lost and found their lens in the most extreme circumstances. I'd say that the story has to be our own, so the Mesa is excluded.

so far, Jay is ahead!

Andrew