Dealing with reduced sight without lenses

[Louise Pembroke]

Hi there, I don't know whether anyone else finds this as difficult but thought it might be useful if I shared this.
Both my corneas are transplanted. One eye wasn't successful and is blurred, the other turned out ok, and with a rigid corneal lens this gives me good vision. However, when I take the lens out, there is a massive difference in that eye as the cornea is steep despite grafting. Without my lens it's too hard to read,use the computer, see food labels etc. I usually have a "wobbly" with my lens once a day, something gets under it, it hurts like hell, so I take it out and wait till it calms down, then put it back in as soon as I can access hand washing facilities.
I really struggle if this happens when I'm out. If I'm in a supermarket, I have to ask for assistance because it's too uncomfortable trying to look at labels 2 inches away from my eyes and 'sell by' dates can be very feint and impossible to see. On the street I feel very anxious, especially if I'm in unfamiliar surroundings, I have got lost and can't see bus numbers/tube indicators. Sometimes people have been unpleasant if I've bumped into them, and cyclists jumping red lights or young people on skate boards expect pedestrians to jump out of the way and I've had many near misses.
I panic if I have to remove my lens, I will try to put up with the pain and hold on with my eye streaming because I can't bear removing it. Sometimes I've panicked so much I've had to sit down and wait until I'm calmer before doing anything else.
Before my first transplant, I had very reduced vision for a period [couldn't wear lenses during this time]. I was a teenager and I received many bad reactions to asking for help. I think people don't associate sight problems with young people and perhaps thought I was faking it. I remember going into a cafe and asking the assistant what the menu said as it was chalked up on a board and I couldn't see it. She REFUSED to tell me sarcastically saying "You can see!". I explained I couldn't see it but she refused to help so I left feeling humiliated. I had other negative responses like this so I stopped asking for help when I needed it.
I think those experiences have stayed with me because I find it hard to ask for help now [when I am without my lens].
When I have asked in shops I feel I should justify asking for help so I explain what is wrong and probably bore the assistant rigid! Without a visual indicator such as eyes which look different, a guide dog or white stick other people don't know.
I spoke to the RNIB and they were really helpful and understood how I feel. They suggested I obtain a collapsable "symbol" stick. A symbol stick indicates impairment of vision, [a blind person has a "guide stick"].
This folds away small and could be carried around in the handbag and just flicked out and held in the hand when required until my lens can be put back in. These can be obtained from the RNIB and are cheap and don't require any doctors letter. They thought it might help to lessen my anxiety during these times, provide a discreet visual indicator to others that I have an impairment, and assist me to have more confidence to ask for help when I need it without feeling I have to explain my ophthalmic history.
I don't know whether anyone else experiences the kind of anxiety I do or would find this strategy useful but I thought I'd share it.

[jayuk]

Louise

Welcome to the forum!

I can relate to your anxiety; as can many more on this forum.

It is worrying that you have had these nasty experiences and I can understand why you tend not to ask for help/assistance.

In all honesty, in all 11 years of KC, I have never experienced any issues such as these; but I think thats more because I have told very few people about my KC; as in all honesty 99.9% people dont care, and those that do 50% are fake and just go out to feel sorry for you.

I have spent a number of months without lenses and not being able to see...and life does get boring to say the least..........however I was fortunate enough to have stayed close to home and also had a good employer whom wasnt concerned as long as I could get to a PC and work (which I could using special software for visually impaired people).

I think when going through these hard times any help that can aid you is worth exploring/pursuing.

What are your plans now for the other eye?
Can you see out of both eyes with correction?
Do you have a plan on how to improve the vision?

[Louise Pembroke]

Thanks, glad you don't think I'm a complete wimp! I know we all cope differently according to many different factors, sometimes I wish I coped better so I'm trying to find ways of dealing with my anxieties to lessen it instead of kicking myself for feeling it at all.
Will stay as I am Jayuk, I'm good with my one lens, can't do anything else for the other eye, explored all options, so as long as that's ok, I'm ok.
The other thing I do when the lens plays up just as I'm about to go out or give a speech is to shout it John Cleese a la Faulty Towers style. It helps, and friends/family are used to strange wailings from the bathroom!
Did anyone see the film 'Minority Report'? Tom Cruise having his eyeballs replaced and carrying around his removed eyes in a plastic bag!
Is the 'Borg' member in Wales by any chance a fan of Star Trek's The Borg? If you are, so am I! I have a Borg costume with the headpiece including occular implant. Thankfully it covers the bad eye otherwise it would be a case of 'Resistance is futile' and walking into the wall! You just can't be an all conquering alien species if you are walking into things..

[Susan Mason]

Hi Louise

I too have experienced many of the same things you describe.

Sometimes, when I get really fed up and down with it all I end up having a few very back days feeling sorry for myself. My last episode like that started from how they behaved towards me at work and I am sad to say lasted quite some time and if I am honest is still lurking in the background.

I am lucky that my husband is very supportive and escorts me around to where I want to go however, I have to admit that even with an escort I find shopping without lenses dreadful, far too frustrating.

My little boy who is now 8 also helps a lot especially around the house.

Hopefully in the new year I will take the plunge and try going out a little more without my husband. However, as you say having to remove a lens or clean one whilst out can at time be a challenge and I feel that once you have lacked that confidence it can get more tricky.

I have scleral lenses and can guarantee if I am going out I will manage to blink a bubble in just at the most inappropriate moment.

Ah well here comes 2006, lets hope it is better than 2005.

Susan

[Louise Pembroke]

Thanks Susan. I'm sorry you've experienced discrimination at work but thankful your family are supportive. I completely understand how you feel about shopping when lenseless, I don't want to go out without mine. Perhaps you might want to think about the symbol stick or badge when you try going out without your husband to feel a bit safer initially [and try familiar places first]. I do find that others not realising can be the biggest problem. People have very limited knowledge of eye problems and so say, 'Why can't you wear glasses?', or 'My lens from the optitian never hurts', or they think that transplants equals perfect vision and no further problems. There is much awareness raising to do, perhaps the group needs to have a presence [a table] at other events [health/employers]. I've had to explain to doctors what Keratoconus means!
It can be the smallest things that upset me, like not being able to see if a driver is indicating to me to cross the road, or if someone is smiling at me.
We have a KC t-shirt, how about if we designed a KC badge which indicated reduced vision for those lenseless moments or the difficult times?
Anyone like that idea?

[rosemary johnson]

Hi Louise - and welcome to the forums.
Yes, unfortunately there is a lot of ignorance, stupidity and blatant discrimination, and even among those who think they ought to help, there is little idea of how to do so.
THe only attitude one can really take to soem of those you've encountered is that their behaviour reflects more on them than on you - and that if that is the level of service you get, the establishment doesn't deserve to get your custom!
In fact, these days, shops/restaurants etc that treat you like that are breaking the law - un the Disability discrimination Act - and could be taken to court. SOmetimes the most appropraite action would be a complaint to the management - though don't we all have plenth of better things to do with our time than write letters of complaint all the time?!!

I used to have a dread of having to go out and get about anywhere without my lenses - thought I'd be confined to my home if I couldn't get the things in.
THen one day I was on the tue ont he way to work and the eye of the lens I had in was just so sore I simply had to take it out. And I found that I could in fact get from the tube station to my office, take my coat off, get a cup of coffee and find my way to the ladies to put a lens back in, perfectly OK, without it. ANd I hadn't got run over onthe way.
SOrry, that should say "tube".
Of course, I did know the way.....!
After that, the enxt stage was to get from my home to y local tube station. That was a case of planning the way, and reckoning if I went the long way round, I could cross all but one side street at zebras/traffic lights. And got there safely.
Now, I've been as far as Ascot races (tube to Waterloo, train on the reading line, then walk up the footpath) before finding my way to the members' ladies to put a lens in.
What I still don't feel confident about is going places I've never been before..... but I've had to do that sometimes - like when a security alert has closed my normal tube station and I've had to find an alternative route home.
One thing I find useful is to count the number of stairs - eg at my local tube station, the first flight down has 14 steps and the second 13 - so if I do have to go down them without lenses, I can count and not fall off the bottom one.

Bus numbers - sorry, but sometimes I've just had to stop them all. And occasionally I've got the wrong one by mistake.....! A range of queries like "Do you go to the Bakers Arms/White Horse/Central station, Mate?" can sometimes come in useful, if you realise at the last minute you've stopped the wrong one, or still can't tell when it has stopped.
Tube indicators - yeah, they can be a problem. Fortunately more and more of the trains have the talking announcements. SOmetimes it can be useful to learn which side of the train the platforms are - and get a general impression of what the stations look like - eg. blue tiles, green pillars, etc.
Shopping can be a pain, and I'm sure I must miss a lot of the special offers I normally rely on. Fortunately I have a very boring diet and buy the same things almost every time!

Tube staff have a good reputation for being well-trained in how to help blind/disabled travellers. I've only tried this myself once - coming home from Heathrow - but the guy there was very good.

rosemary

[Per]

Hello, Louise.

Read about yur experiences.

Wonder what happened to your other eye, the blurred one. Did they give you any prospects for the future, new graft, clearing up?

What you say about the other eye is also my experience. Had a graft several years ago which turned out to be successful i terms of cornea vitality and clear vision. However, irregularities in the graft surface made it hard to ajust lenses, all possibilities tried out. Ended up with a semi-successful solution with glasses. That gave me vision on that eye slightly below the limit for a driving license. Which for me was not acceptable. I recently therefore had a lasik operation on that eye, and may now see better than ever.

I have recently had a graft on my other eye.

I wish you the best.

[Louise Pembroke]

Per, as I understand it the survival rate for regrafts are not brilliant which is why I havn't. There are no further prospects for that eye. I'm interested in your Lasik, I didn't realise that could be done on grafted corneas. Presumably it needs to be a good graft. Was that done on the NHS?
I wish you well with your recent graft, I hope that progresses well and gives you a good result.

[Per]

Hi again, Louise.

Since i live in Scandinavia I have had my lasik done here. I know that there are different views on this amongst eye surgeons. Some say its risky, others use it on patients that cnnot fit glasses or lenses, and with very good results. I do not know very much about it, but I would be surprised if post graft lasik surgery is not given in the UK. I know that it is very common and developed in the US, as cornea surgery in general. There might be something if you look through the links page on this site.

Finally you should have in mind that you already have a blurred eye. A possible rejection caused by lasik on the eye with a successfull graft will have larger consequenses than if you had full vision on that one.

There might also be new ways of solving such problems in the future, contact lens technologies as well as lasik/cornea surgery.

If some of you out there have relevant links, don`t hesitate to post them here.

Wish you the best, Louise!

[Louise Pembroke]

Per, that's very interesting about what happens in Scandanavia. I don't think post graft Lasik is common here. Perhaps one of the practitioners might post an article for us?