UK Keratoconus Self-Help and Support Association

Hi all,

It's Sweet's twin...hi Sweet and John

I messengered on here a very long time ago and again, now I have problems, am back!

Please could someone help? I am off work again, was off for 2 1/2 weeks before Christmas. I went back this week on Wednesday and Thursday and then attended Moorfields last night and was told I have to leave my contacts out again, for another week I'm really frustrated about it all. Before Christmas I had an eye infection and then I managed to take a few layers off one eye so had to leave them out and take drops all the time.

Went to Moorfields yesterday and have blepheratis again and my eyes are extremely red and sore, so I can't put them in. They feel as though I have either had my eyes open underwater for several days or have someone elses eyes in Can't believe how painful they are again, especially to light. Am taking Prednisolone and Chloramphenicol for the next 3 weeks and hoping they will get better.

But I am really worried about work, as I can't see a thing without them in and have only been in this new job for a month I work in an air-conditioned office, at a computer screen all day, which is not helping. My eyes are always red and sore and I dread putting my lenses (gas permeable) in each day.

I keep being told to take them out more, but I am struggling at the moment as I work full-time and have started a 14+ course which takes up every weekend and several nights a week. I do leave them out as much as I can! Was therefore hoping someone might be able to help? Firstly:

1. Work want to have a sit down with me about my work options when I finally go back, as I can't keep taking time off work just because I can't see! I live an hours commute away though, by foot, train and tube to a heavily commuted area. Has anyone else had a similar problem? Perhaps I could suggest working from home? I can't see past arms length, glasses don't work and I suffer from terrible eye strain without lenses in
2. The majority of my course is reading and computer work, which is adding a lot of additional stress to my eyes. I've heard there are programmes which will scan text from books etc and read it back? Any good and cheap ones? I know Windows Vista is an option, but I have Windows XP. Something like this though would be fantastic as it would mean I could leave my contacts out in the evening and still get through the coursework.

Think that's all, sorry it's so long. Any help or advice would be really appreciated. I have gone from being able to read the bottom line of the eye chart to now not being able to see the chart I've worn contacts for years with very few problems and I know work want to come up with solutions, but what they fail to see is that I am also trying to adjust to life without being able to see and how depressing and frustrating it is I know Prince Charles Eye Hospital are now considering intacs as it looks as though contacts are not working for me anymore...but that's another story...

Hi there,
I can relate to what you are saying.
About 9 years ago I had a very similar experience to you.
I ended up with an eye infection which was then followed quickly by an abrasion. Like yourself I was told to take my lenses out, which therefore left me housebound and unable to work. This happened just before christmas which somehow made everything seem worse. I can clearly remember sitting with my family at christmas and not being able to see my childrens faces from about 3 feet away, I felt so totally alone, frightened and isolared. I too worried about work and what people would be saying about me taking too much time off. The problem is that people just do not understand KC. When we are having successful periods of contact wear we can function totally normally, our eyes look normal and so therefore our work colleagues cant possible understand that with out these little plastic "miracles" our life becomes very very difficult - in my case it would be impossible to attend work should I be unable to wear my lenses.
I too have Blepharitis which is controlled by hot flannel compresses every night and I use Rapitil eye drops morning and night.
I dont know how much advice I can give only to say dont despair things will get better. You will be surprised how willing employers are now to help out especially when they realise you have a problem. Perhaps you could print out to KC leaflet and take it with you to your meeing.
Just really wanted to say Im thinking of you - try to keep positive and Im sure things will settle and your life will return to normal.
Kind regards
Libby

Hi Sweetie - sorry you're having such a tough time just now. I'm sure others will come up with 'techy' solutions which can help. But also, Libby mentioned the Keratoconus at Work leaflet where you'll find details of Access to Work. If you get a workplace assessment done through that, they should be able to suggest adjustments or special software for you. I know some people have also had the help of a 'reader' for a few hours a day through Access to Work, so it's not just technical solutions they come up with. Action for Blind People and RNIB both do workplace assessments - several of our members have used their help. Hopefully you'll be back wearing lenses again in a week or two and life won't seem so awful. But it does sound as though you've taken a lot on, and could do with some help with all that reading and PC work even when you've got your lenses in. All the best - 2008 may have started off badly, but I'm sure it will get better!
Anne

sweetieoftwo

Welcome to the forum! What a difficult road you are having to travel! Always know this: we are with you, so you do not make the journey alone.

There are clearly issues around disability in your story. Print off the leaflets on the site. Let your employer see what you are having to live with, and see what 'reasonable adjustments' to your work situation can be made. Meantime, every good wish for 2008.

Andrew

Hi Sweetie.

We did meet at one of the London socials last year, or was it the year before?

I am sorry you are having such a rough time and am afraid that I have no pearls of wisdom to help. However, I am sure somebody will have some helpful advice, at least I hope so!

I look forward to seeing you at one of our forthcoming socials and meanwhile wish you a speedy recovery.

Hi Sweetie!!

It's very hard being told to leave your lenses out and I can understand your frustration. I'd like to ask a few questions if I may?

One, you say "glasses don't work". What dos this mean exactly? Does it mean you can't see anything at all or that you can see something but not in good detail? Glasses are something that tend to get forgotten with KC because contacts work well visionwise. It may be worth getting your eyes tested again at this point to see if they can help even a small amount to enable you to see something. If they really don't work at all, then getting a pair of pinhole glasses can give some useful vision in this emergency situation. Here is a link http://www.jdharris.co.uk/index.php?osC ... 30a35818d7 They work because they only let through light that is at right angles to the glasses, not the oblique light that contributes to blurred images.

Secondly, you seem to be struggling with RGP's. Have you asked your contact lens fitter for another type of lens? May be piggy backing your RGP's or even trying soft lenses or sclerals? There are other options out there before you leap to intacs. And you know, having intacs doesn't guarantee you can cope without contact lenses at all. You might get away with glasses only after intacs... but then again you may not, so make sure you ask them what the chances are of you being contact lens free after intacs before you go ahead with it.

As far as text reading technology - it is available but it isn't cheap. http://www.sightandsound.co.uk/Products ... Reader.htm

This link takes you to a portable "scan and read back unit" but it is around £2000!! The website has other options and there is software available that will read back what is on the screen of your computer which may well be a much cheaper option!

If you need to chat about contact lens options etc give me a pm!

Hey Sweet!

Oh dear! Sorry I haven't come here to read before but you know that my hands have been hurting with MS so I wasn't able to type!! Gee we are a pair!! LOL!! I have talked to you loads though.

I came here for the first time because I was really struggling, I had an infection which turned into an ulcer and I really needed some help. I did say that this site is always here when you need us, just sometimes it takes a really bad time to come and post.

Don't worry about work. It has taken me over three years to work that one out myself. Even now I am so paranoid when I have to take some days off sick, but if you can't see you can't be expected to get to work let alone do any work! If you keep wearing your lenses you are rubbing off the nice new cells that your eyes are replacing for you, so you are going to be back at square one. Give your eyes a break!! They have worked so well for you for so long without any problems. Just let them heal themselves.

You texted me earlier and said you have now been diagnosed with keratitis, hmm hate to say it, but I told you so. This is because of over-wearing your lenses, until the infection has cleared up for good you need to leave the lenses out or you are re-infecting your eyes.

Dry eyes are really common with KC so you do need a good lubricating drop at night time when you are lens free. I have mentioned a few, but as you know everyone is different so give them all a go! Chemists are very good at suggesting some as well so go and have a chat to see if they can help.

I have talked with you about intacs and told you that my opinion is not to get it done yet. I have always said that we all need to try every lens and solution before we jump into surgery. Intacs can be reversed but the scarring it will leave can't. For me intacs are still too new, and while I have had a DALK I'm not thinking of anything else at present. I would go back to Mr Holland and ask to try different lenses. As much as I hate to keep saying it, the greatest thing about moving to Moorfields is that they have more lenses to try and will stick with you to work something out.

Stay positive and you always know where I am when you want to talk! You looked after me when I couldn't see and I am more than happy to help you out too.

Remember ... NO LENSES!!! I am watching you!!! Keep using the eyedrops, clean your eyelashes well and keep your eyes moist. Take care, loads of love your older sister!!!

As I mentioned in another thread, I will be getting read aloud software (Kurzweil). Its on the sightandsound.co.uk website too. I have had a shot to play around with it and I think ti will make a big difference. Basically, you can open any document, or scan in any piece of text, and it will read it aloud to you, as well as an on screen prompt as it goes along. Will definitely reduce eye strain not having to stare at a screen all the time. It is a good interface as well, easy to see, so once you are used to the programme, you might be able to use it without any lenses or glasses. Yes, it is definitely very pricey, but as Anne says, you may be able to get some support. All the best!

Let me say that I agree with Amarpal, but I am a Mac suer so have no need of add-on software. The Mac OS has embedded "universal access" protocols that enable the user to adjust the screen, pre-set a minimum font size, and have the computer read aloud any text on the screen. for ease of use the user can tab through fields of text on screen (this is really good when reading the KC forum!

So whether you use a windows based PC, or either the Power Processor or Intel versions of the Mac, there are packages available to make computer use easier.

In addition to the above, I have a video magnifier that sits alongside my computer. I put text (it even takes rather large books) into the viewer, and by a cctv link the text is presented on my computer screen. I can split the screen to view both magnified text and the computer's material at the same time.

Do not give up: my little package was provided by my employer along with the access to work team at jobcentre plus.

All the best

Andrew

Hi all,

Thank you so much for the messages...I have been reading them but have not been able to be on-line long enough to reply!

As Sweet said, I am still off work, now with keratitus At least I am catching up on some sleep, so I guess that is one good thing!

Ok Lynn, I have tried glasses and went to a fantastic - and expensive! - optician in Knightsbridge but they are not great. It took them nearly 2 hours to fiddle around with the prescription and it's really touch and go with it. Some days I can get away with using them to just about read, but the ghosting is bad and I get very bad headaches. They are better when I use them within hours of taking my contacts out. They don't work for me at all at the moment, I see more colours and movement without them. I certainly can't walk etc. with them on as it feels as though I am seeing in 4D!!! if that makes sense!

At present, I am coping without and have to admit that burning myself twice whilst cooking, constantly searching for my keys and counting the extra bruises from bumping into furniture is getting annoying!

I have to go to work on Tuesday as I have a meeting with my course mentor, which is really important and then I have arranged a meeting with my boss and HR as I really need to talk to them face-to-face and not over the phone. I have already passed over the KC workplace booklet and am hoping it all goes well. They are really keen for me to be in work - what employer wouldn't! - but my main problem is getting there as it is no easy feat even with contacts in! I work in Victoria, which feels like a cattle grid at rush hour and to be honest, I would hate to do it 'blind'. On Tuesday I am being chapperoned in but this can't happen every day!

I see very little without my contacts in and the majority of the time I just want to sleep because everything is so bright and I have to keep squinting to try to see clearly. It is frustrating as I have 20/20 vision with contacts in. I have been doing some work at home, e-mail responding etc., but I can't stay on-line for too long as the intense concentration on seeing doesn't help my head!

My next appointment is on Tuesday with a more senior consultant and hopefully I will get some solutions. I am keen to explore more contact options before trying intacs, although my consultant appears keen on the drops and light thing? Not too sure on this. He certainly does not agree with piggy-backing, but I'll discuss all with the other consultant on Tuesday. To be honest, I have reached the stage where I do not mind if I have to leave them out a bit longer, I just don't want to put them back in and they get red and sore again. I can and will have to wait this time!

And a saving grace? I've found out how amazing my band are and how they have helped save my sanity over the past few weeks! I play horn in a brass band and next weekend we are off to Butlins to compete. I told band at the beginning of January that I had to pull out as I can't see the music, let along the conductor. But instead of simply agreeing, they have re-written and enlarged my entire part from 2 pages to 8, put it on very nice green less glare paper and are chapperoning me all weekend and have been for the last few weeks for me to get to rehearsals. Still can't see the conductor, but they don't seem too concerned! So instead of spending a miserable weekend next weekend feeling sorry for myself, they have gone out of their way to help me compete...ahh, how sweet! Speaking of, Sweets hope you are well! and thanks again all, the support is second to none Now, to check out that sight and sound website...

Em x