UK Keratoconus Self-Help and Support Association

Hello all,

Its been such a long time since I posted that I thought I should let you know how I am getting on.

Its over five years since I was diagnosed with KC; four and a half years since my first post and the journey I have had since then has been far from easy, but. I now have a scleral contact lens I can wear with fluids I can use and now get wear time of upto 4 hours 3 to 5 times a week. I have a new pair of glasses to go with my lens and for the past two weeks and I have been getting correction to 6/5 with both lens and glasses. Am seeing my fab optom on Friday and can’t wait.

I've gone from living the last 4 years with visual impairment (not getting around without help or reading normal print)to taking a few hours off from being who I thought I was during the week. I am finding the whole dealing with vision thing tough. I still function like I can't see and have to remind myself that when I have my lens in to look and not feel.

I've been taken out a three times with my lens in and now want to buy everything I walk passed in the shops just cos I can choose it without asking what the pattern is like or if its for blokes and not girls or if my bum looks big in this.... you know the stuff I mean. This isn't the me I know at all I am the biggest tight wad I know. Oh and I don’t like the latest fashions and I think the new BMW’s are ugly and I caught myself letching at totty across the road and then couldn’t remember how to look and not get caught so I just blushed and looked the other way instead – it was safer. I’m finding big wide open spaces quite over whelming as before what was beyond my horizon was of no significance. I want to try to leave the house on my own this week without a guide and just a cane in my bag for emergencies, but the thought of doing that is quite scary.

Oh and I spose I should give a reason for this post; well there are two things here. I know I have been politely described by optometrists and ophthalmologists as “interesting”. But I though I should say that my experience of them all has taught me that as long as they don’t give up on you and your prepared to go through a cycle all the right lenses but not necessarily in the right order and finish up with the coolest unfenestrated impression fit sclerals that ken makes or even bigger and even better and faster lenses than those and a pair of glasses whilst trying just about every cleaning and eye lubricant soloution then don’t give up on the optoms cos eventually you may just find what you need. And the other reason for posting is can those who want to fess up about their Visually Impaired habits they use when they can see fess up cos right now I am feeling a complete nerd and I suspect that having a giggle about how special we all are might be the tonic I need.

Is it normal to be scared of seeing or am I just scared of being seen and knowing that I have been. The world now has eyes.

Drew

PS I got my happy socks on right now – they’re red.

Hey, Drew, great news you're getting somewhere t=witht he lens/specs combo!
As for being interesting - well, don't knock it! WOuldn't it be far worse to be called "boring"??!
Finding it difficult to be able to see: well, when I got my new lens post-graft, it was vrysurreal indeed to see things inthe distance so sharply. ALmost like I couldn't quite believe it or take it in.
What was even more surreal was finding all of a sudden that I was markedly long-sighted and had to dash out for reading glasses and learn to use them. I've been short sighted for so long and peering closely at any print, and possily wearing wrap-round shades and pushing them up onto my forehead to read than putting the reading specs ON to read is still something I can't cope with.
I also remember the firt time I wore the new lens to go out to the stables - well, field. I ahd DUke tethered out in the open air outside his stable and was grooming him with my reading glasses on and couldn't quite believe he had quite so many individual hairs in his coat - and so many different colours for the different layers and different parts of him!
It had all become just one mass of "brownish fur".
When I was a teenager, newly diagnosed, and just got my first lenses it was a similar feeling - couldn't quite believe how much white space there was around all the clues inthe crossword puzzles in the paper.
Rosemary

Drew

I found 'part time eyesight' far more difficult to cope with than legal blindness.

Nowadays I have full time eyesight, but I still prefer to do some things 'blind'. I often work at my computer with the screed turned off, I move about the house with no lights on etc.

As your spells of sightedness increase you will find the adjustment easier.

Are you eccentric? Well, if you are ... ... ...

Andrew

Drew,

So good to "see" you are out and about at long last! Now about your vision..... your brain has a hard job ahead coping with all of this. For a long time it has coped with non seeing - as Andrew explains. Now it has to contend with working a different way, relying on visual input.

I don't want to be a Jonah here, but you need to know that some people actually get depressed when they start seeing again. This is partly to do with the fact that everyone around you thinks it "all alright" now that you can see. Problem solved! Except that it isn't, because you have to adjust your life to deal with vision again. I expect anyone watching Andrew work a computer without the screen would think he is a little crazy - why would you do that if you could see? Well - you would if you had learnt to do without it.

The brain is an amazing thing and it learns all sorts of things very quickly but it has a problem DE-learning things. Suddenly having vision restored can be extremely disorientating - you don't quite know whether to work on visual clues or simply close your eyes and go back to how it was before.

Take it easy and do let us know how you get on!

Lyn

Thank you both.

Lyn your spot on. I'm finding part time seeing again harder to deal with than working out how to be visually impaired.

I really struggled to find proper support to deal with this as 'getting better' from a visual impairment doens't appear to be common enough for the NHS to address with a proper rehabilitation service. I kind of feel guilty for saying its hard as I gest most VI people would give their metaphoric arm and a leg to get part time sight and here I am making a hash of it. It probably sounds daft, to most the thought of walking down a busy high street without a guide and not walking into somebody fills me with dread.

I spoke to RNIB and they have at least found me a therapist to help me find who I am or going to become. But even the thereapist said that in five years she hadn't heard of somebody in my situation.

One of the questions I asked at the hospital - at the appointment where I went with lots of questions aout whether to go for a graft - was "What help and support is there to help the brain adjust to being able t see things better again , and to learn to make sense of the new sharper images?"
The nice young lady hadn't a clue about this one.
Why wasn't I surprised? - but I asked, because I thought it needed to be asked, even if I expected they might not be able to answer (similarly the one aout funding but that's another story!
Actually.... I don't think all ZVI people *would* "give an armand a leg".....
We had a discussion about this a while ago on the email list of a group I belong to of women with disabilities: someone asked "If your disability could just be cured, like that - click! gone! - would you choose to have it?"
There were surprisingly few takers.
The woman on the list who is totally blind and ahs been since birth said "No".
IIRR, I said that I didn't think it was as simple as that - you could do the "click" and give me 20/20 vision, but that's quite different from being ale to make sense of what I'd suddenly be seeing. But, I said, the one thing I'd love to be able to do would be to be able to read again, at a reasonable speed, without each page taking ages, and geting sore eyes and having to stop for rests.
I don't think there was anyone who'd go for it without reservations.
The ones who might have done were those with, basically age-related disabilities - like painful arthritis.
ANd maybe "If you could stop the pain, click! just like that, would you?" is another question. I think I might go for that one.
I wonder how many people there are out there who have "sight-improving" procedures and would really like some help in adjusting if they could get it, but the demand never gets put forward, or even noticed, because it is somethign that surgeons just aren't interested in?
Rosemary

It is actually documented but not taught about much. I guess people don't hear about it because people don't like to discuss it as it sounds sort of "ungrateful"??

However, as an optom, in even normal High Street practice, one comes across lots of people who have a perfectly normal refractive error but choose not to wear specs. They may only see the big top letter on the chart but maintain they can cope perfectly well and sometime you have to get quite forceful to make sure they wear something for driving.

As an optom, this seem sacrilege as we also deal with people who are desperate to get better vision but in the end one has to realise its not the eyes that "see" - its the brain. The eyes are merely the conduit. And the brain is a real strange cookie sometimes!

Lynn

So thats where all the chocolate I eat goes. Straight to the cookies in my brain. It's good to know that its normal to deal with this at my own speed and find out what and how I want vision for. As of yesterday I now have a new lens on order with another adjustment to my impression fit sleral to try and improve the fit and increase the wear time so hope to not be so part time seeing soon, which I hope will make things easier.