Help and Advice PLEASE!

[Kirsty Eldridge]

Hi. Feeling really down at the moment. Hope i make sense here! Ive got scleral lenses which ive had for about 9 months now, i had just about got used to it in right eye and could wear it nearly all day, but rarely ever wear left one as cant get used to it. Im just really struggling lately with the heat, hayfever and brightness. When i wake up in the morning, even after having a long good sleep i find it really hard to open my eyes and adjust to the light and they always seem to hurt, then the thought of putting a lens in is unbearable! And often feels quite uncomfortable when i can eventually put it in. I really suffer all day long with the brightness as well. Does anybody else experience any of this? I can just never seem to be able to get up early without my eyes hurting and it gets me down.
Also ive had to leave my lens out for a few hours each day lately to give eye a rest but without being able to see i cant do anything which frustrates me. What do any of you do when youve not got your lenses in. or dont you!?
Ive also started to think of the possibility of having a graft/grafts but its a scary thought. I just know i cant go on the way i am for the rest of my life. Can anyone share their thoughts/experiences?
Any advice or help or anything to cheer me up would be greatly appreciated
Cheers
Kirsty
Ps Hope i havnt waffled on to much!
PPs If there is anyone out there with KC who has had a baby, how have you coped with it, with not being able to see all of the time?

[cherishu2]

aw im sorry you feel so down.
But yep im in same boat as you.I cant tolerate lenses and have been without since january.
It is hard iam bringing up 5 children the youngest is 3
I cant shop and i cant take them out without someonne being with me. For their safety of course.
It so frustrating.
Today they decided to try me with a scleral lens in my left eye and they are putting me on waiting list for graft on my right. So for the next yr or so ill have to manage with 1 eye and vision through that is limited.
It is upsetting but i tell myself it cud be worse. I could be blind. Im grateful i can see my kids faces, even though only from 2 inches away Got to laugh or else ill cry.
You may need to talk to your carer because sounds like your becoming intolerant to that lens.
Im still in shock at the size of the things.
love Trace

[Susan Mason]

Hi Kirsty

Just wanted to let you know you are not alone with regards to the day to day challenges you describe.

My eyes are really at the moment and I must go to bed so I will post again as soon as I can for you, we seem to have some things in common.

best wishes

Susan

[John Smith]

Kirsty,

It is possible that your cones have progressed since your sclerals were prescribed. If they are causing you troubles, then it is probably worth having the fit checked.

I had that issue, and the extended cone was rubbing against the front of the scleral causing discomfort and decreased wearing time. A change in lens was a bit of a magic cure at the time

All the best

[jayuk]

Kirsty

When you wake up I suggest you try this; use water (some may suggest boiled cooled-down water or sterile water) on your eyes, as in splash the water over your face and eyes.....ensuring its slighttly cold......this will make a difference...in terms of waking the eyes up (and yourself)....I use to do this every morning when I had issues with my sclerals......albeit very minor......

In terms of having to take your lenses out; when that was required Id just sit somewhere for about 20 odd mins without the lenses. If I was at home, id take them out and wear the pinhole glasses for around an hour just so that I could see......

HTH

Jay

[GarethB]

In addition to what has been said, if I am at home without lenses in I carry on as near normal.

Took about three months off work to discover that there are many tasks I can still do without seeing properly!

Household chors still get done, I can tell if the washing up has been done properly or the worktops cleaned properly as I can feel the dirt. Can't see cobwebs, but can feel the dust, so my wife is happy I do most the housework too.

Ironing took more getting used to but you soon get to know where your hands are in relation to eachother and where the edge of the ironing board is so you put it down properly and do not burn yourself.

Gardening I started from scratch, ripped everything out of the garden and planted new things with bright vibrant colours so I could tell where grass ended and flowerbeds started. Anything dull and green amongs loads of flowers is most likely weeds.

I did have the help of a councelor too as I was been treated for the depression my KC caused and together we found ways of overcoming the challenges I thought I had. I have now embraced the lack of sight along with the gift of sight when I wear lenses.

The end result is since returning to work 18 months ago, my carear has also gone from strength to strength too. I am quite happy to sit at my desk and use all the image enhancement stuff and can be as productive as I was before all the trouble started.

What sort of work is it you do Kirsty?

[Kirsty Eldridge]

Thankyou all so much for your replies.
I work 3 days a week as a receptionist in a leisure centre doing shift work and 2 days as an admin assistant.

[GarethB]

Kirsty,

Under the disabilities discrimination act, your employers have a legal obligation to try and make any reasonable adjustments to allow you to work as normal as possible. Access to Work can help regarding funding for any specialist equipment you may require.

If you contact Anne Keplatz whose details are on the home page for contacts and register with her, she will send out loads of useful information. It is also available for download including a fact sheet for employers which is extremely useful for employees too.