New to Forum

[GarethB]

Hi Ronak,

I have no experience of Sclerals, but many here do. What I did for my emplyers as the occupational health nurse was interested in KC, we put together a presentation for me to give regarding KC and what I need to do my job properly.

This meant that everyone had to record in training records that they had been made aware of my condition so no-one could then say I was careless or working slowly just because I was lazy. Most of it was thived from this site and Anne Keplatz is working on a leaflet like the student one on this site (the link is on the home page). This also meant that I only had to give one explanation. The information from that leaflet combined with following the HSE guide for using VDU's meant I had to be given a VDU assesmentn and the occupational health nurse did 4 for me, binocular vision, left eye only, right eye only and no lenses at all.

This meant I was given a 19" flat screen monitor which I can adjust the red:green:blue ratio to get the best shade for me without having to fiddle with windows set up. The only time this changes is when I go to partially sighted mode and have to up lower the resolution to get things nice and big. Screen flicker is now non-existent. I still need sunglasses alot, but I have managed to move my desk to the window for more natural light to take the edge of the flourescent tubes and I can open thw windo to let fresh air in. With airconditioning and closed windows, the humidity is about 30% and drys my eyes out. I also have a time net to my pc so that after 30 minutes I get up and have a break from the screen. I use this to put things in post trays, get a drink and such like, only a couple of minutes.

If you have an occupational health nurse at work, try and get help from them. Help can be obtained from Access to Work can be found at:-
http://www.jobcentreplus.gov.uk

The RNIB have been useful to me in the past and I think some people here have had help from Action for the Blind (I think this is correct). They can help with assesing the work environment and advise you and your employers on how things can be changed and from my experience with little or no cost to your employers.

Hope this is of some help, let us know if you would like further information.

Regards

Gareth

[jayuk]

Hi Ronak

Welcome to the board I guess!

Guess you are in good hands with Ken as I def rate him a top guy when it comes to understanding what we KC people go through!!

With regards to your questions

1) Does anyone have the same problems with Scleral's as I do?

When I first saw these I absolutely shat myself lol..I thought there is noone these Barbie Doll Soup Dishes would be going in my eye...but once the ey gets used to them I fund them to be top for comfort but not as god for vision....due to the way in which they work. In the initial stages I did have prblems with putting them in. I could NOT put them in, in both eyes and go about work...so what I did was spend about 3 weeks with just one scleral in one eye and normal RGP in the other......untill it got used to it.....with regards to the bubbles; Yes I had them as well...and it would take me about 15 mins to get one in in the onset of the lenses. But part of the insertion of the lenses that Ken recommends is tilting your head down and also looking down....this works a treat when it comes to avoiding bubbles.....so its chin on chest, look down and then insert from top to bottom......what I would do is take them out every 2-3 hours for 5 mins, put in a fresh rim of Amidose (which I put in the fridge so was wickedly refreshing ) and then put them back in.


2) Does anyone have any big problems at work and how do you go about telling everyone about your condition as they seem to switch off after 30 seconds!!!

Yes in the past year or so I have personally been finding things difficult.....about 5 mnths ago I started using the Magnifier in Windows XP and that made me feel a little odd....and would fnd it embarrasing at times when work colleagues would wonder why I had it lol........I personally dont really go into my condition with work people..I tell them whats wrong in that the front of the eye changes shape due to a rare condition and that my vision just gets distorted.....but its only rare that I go to that detail......I find poeple dont genuinely care and are being polite......lol....only a few people actually care......and I guess why shoud they.......but yes it can get difficult but I guess thats the challenge wit h KC....dealing with it as a challenge

Oh, saying that I had told my HR dept of my eye condition in my appl form when I took the job on but it was not discussed as such.

[John Smith]

I too find that people ask to be polite - or envious of my 21" monitor when everyone else has 15 or 17" ones...

I keep my old scleral at work and show them, telling them that without THIS I'm pretty much blind. Nobody without KC can stand to think of putting a scleral in their eye (and many of us aren't too keen, either!)

This technique usually sparks more than just polite interest, and as such I find that things go well for me at work, with enlarged reports, and seats saved for me so that I can see the screen at a presentation!

[GarethB]

Jayuks reply about chin on chest to insert a scelral has eminded me of a post I saw a while back where the person concerned could only get a lens in by hanging thir head over the edge of the bed with all the lens stuff on the floor!

Hopefully the person who made the comment will be able to give further details.

Gareth

[Susan Mason]

Oh dear ...... was that my comment? Did I really own up to it or was I just re typing what I had read somewhere else??? I really can't remember ...but yes I have to agree in the begining when I was really stressed with my 'barbie soup bowl' I tried everything including hanging over the edge of the bed.

What I find now after nearly 2 years with them is as jayuk says, chin on chest, glance downwards as far as you can and then insert lens under top lid first ensuring it is really full up to the top with saline.

I still don't just get them in first time, not realy because of the bubbles but more because I find on first insertion I quite often after a few minutes get a mucky bit floating in with the lens or it goes a little cloudy.

I have tried lots, to remidy this, rinsing eye first, cleaning with cotton wool etc. I am obsessed with being clean and scream like a harpie at anyone who comes near when my lens procedure is on (husband and child). All are trained to run in with the mirror, emergency saline and then look closely into my eyes for a stray bubble.

I now think of my self as 'special' as somehow I can often manage to blink a bbble in after 20 minutes or so of no bubbles, it must be magic.

On a serious note I would suggest you allow yourself plenty of time, I still find if I am going somewhere it will go wrong.
After my settling in period with the lenses the big bubbles soon no longer appeared and it was just tint ones I got if any.
I now try to remain positive and tell myself I am not letting this little piece of plastic get the better of me. I find if I am feeling low I will have more probs.

As for work, well another story ..... if you have any specific questions please post them and i will try to answer or private message me if you like.

good luck

susan

[Jacqueline Cheetham]

I'm the hanging over the bed person.... I found it worked really well, and certainly reduced the bubbles.. Get all your bits together, hang over the side of the bed as far as you can, put lens in and then before you open your eye, tuck your chin in and sort of 'look' right under the bed. Then open you eye. I started to do this after back surgery as I couldn't bend and found it worked so much better. I have had some funny comments tho'. While visiting my brother in Canada, I had my two little nieces aged 2 and 4, sit on Aunties legs. as their bed was higher than mine and I could see myself falling right off it... I could just imagine the talk at nursery school, as they explained how Auntie puts her eyes in... But really it did the trick for me... Good luck..

[withnall]

Hi

I feel the same way in work. I changed to a large flat screen which has only helped a little. Have to squint most of the time and menus on walls on a real pain.

I find that my family and friends think that all i have is a regular eye problem and think that i am over reacting. My condition has really progressed over the last year and i have spent the last three weeks going to Eye Consultant, Contacts Specalist and Hospital for scans and i could of really done with some support.

[GarethB]

I think at times we are to polite for our own good in decribing KC as a problem which it is to us. After being on this site I started to describe KC as a disability and attitudes changed dramatically and people became more considerate.

At first it was hard to make such an admission when you think of peoples perception of disabled meaning being in a wheel chair or having a guide dog. It can also be very powerful as was proven to me on Saturday when I was shopping. I bumped into someone at the newsagent as they turned from the counter to get a news paper and they said 'Watch where you're going! Are you blind?' To which I replied 'No, but I am partially sighted, what is your excuse?' My wife says they were so embarressed they legged it out of the newsagent chased by a member of staff who promptly made a citizens arrest for shoplifting. In the attemp to escape further emarresment they did not pay for their paper!

Unfortunatly it is only us that understand our needs so despite thinking our employer should do the work, it is up to us. However to do this, we need understanding/upport from our employer which is not always easy. It is a hard concept for 'normal' people to understand that with glasses usually means we can see very little, but without them we either see blurred shapes or everything in technicolour!

Gareth

[withnall]

I kinda agree, it is like a disability and there should be more done to educate teh public about KC as many people think that we are overreacting. I would love to make them walk aroud in my eyese for one week.

The internets sites are great for support. I went throught a scan yesterday in the hopital and not one of my friends or family phoned to see how i got on. I felt really low and depressed last night. I wish they could understand what it is like

[Susan Mason]

Ronak

suggest you also viewthe thread titled:-

Just something I thought might help...


(sorry not clever enough to do a link)
[Edit by John. But I am ]


I also recall someone once telling me that the 'RNIB' or 'Action for Blind People' not 100% sure which one had somewhere 'normal' people could go and be blindfolded or given dark glasses etc so they could try doing everyday tasks through our eyes and experience just how challenging it can be.

When I get cheesed off with some peoples attitude I always feel like asking for all the 'normal' peoples glasses and contact lenses, making a big pile of them and stamping on them .

Susan