UK Keratoconus Self-Help and Support Association

I'm sure that i had a job once and went to work 6-7 days a week, but now i seem to have forgotten what the hell that was!

Almost 9 weeks on and i'm no nearer seeing at all. Maybe today is really Friday 13th in disguise as it sure feels like it.

Now everything is messed up. Yes now i have a lens that is quite comfortable but i can't see out of it! I think i would rather be in pain which i was with my old lens for two years before all of this happened, at least then i could see and go to work. It's strange normally my vision gets worse during the day, but now i seem to get better vision with this lens as the day goes on, which kinda tells me that my eye is just getting used to it and it has nothing to do with the actual lens at all.

I just don't get it, nothing really has changed. This is the same lens i have had for the last thirteen years although i think it is slightly stronger, so what is different? I think the only reason it is more comfortable is because i am now completely addicted to Systane! Hehe, which as some may know is very nice when it's been sitting in the fridge for ten minutes! Also i read a post here somewhere about whether or not you can use it with lenses? Aahh ... if you can't i don't think it matters now, as i use it regularly all day with my lens in, and i don't notice any problems.

When i first put this lens in it makes no difference to my vision at all, and i only notice some difference hours later, though it is no good just putting it in earlier as i have only just made nine hours and i work twelve hour shifts, so i can't make the full shift as it is! I get pretty good long distance vision though after a few hours wear which i don't nomally have, but i can't read! This doesn't really help me as i need to be able to see my oatients at work! Haha, maybe though if i stand on the top of a high mountain back in Wales i would be able to see where i live now in London being as i'm on the fourteenth floor!!!! LMAO!! Well i have to keep laughing as this is driving me insane!

So ... the jist of it is that i can't go back to work like this. What am i supposed to say??? Patients can you please do me a favour here as your nurse is having a slight vision problem, so can you please only request painkillers and IV medication at least three hours after i start my shift as before that i won't be able to read your drug chart or even read your name band to make sure i am giving the right drugs to the right patient!

Also if any of you are thinking of having a fit or suddenly feel the need to keel over and have an MI please do so after the three hour timescale as i won't be able to see you before that to give you emergency treatment! Yes granted i am not a doctor or a surgeon here, but if a patient suddenly arrests nurses are normally the first to arrive and start CPR. I don't think i would be able to see to do this properly at the minute, and working in 'A and E' things are never simple. Most of our patients are really sick and need acute care.

So what does my optometrist say about this? That it will take some time but my vision should improve, and that he has given me the strongest lens px he can Hmmm, are we having the same discussion here as we did when i had some ulcers and no-one would tell me how long it would take roughly to heal? I have worn this lens for almost two weeks now, i know i had to leave one out for seven weeks, but even i think that it should be getting better by now. Normally you can see quite well with a new lens, but this one makes no difference at all, even though i am wearing it for at least eight hours a day. I wonder why i am bothering putting it in??

Hmmm ... well i guess it is late and i need some sleep. Who knows, tomorrow, (or rather today as it's 1.30) might be the end of the tunnel? Yea ... maybe. Any suggestions would be grateful because if i spend anymore time off work i really am going to lose the little bit of sanity i had. Also if i keep testing my vision on every number plate i see i really am going to lose it!

I feel completely useless and i'm running out of ideas, and hanging around this pc is not really helping. Although being dragged around on a pub crawl today kinda did!! LOL!! Enough said i think!!

Thanks for listening.

Love Sweet X x X

Yes, I feel just the same. We have different problems, but am off work too. I work in a Dispensary so the thought of giving out the wrong medication is horrific to me. Some days seem to be better than others. My right eye is less red today, but more painful and I have less sight in it. Mt left eye the worse one, is a s clear as a bell, but can't see clearly. Last time I tried to put my lens in I almost went mad with the pain. I couldn't open my eye either, so made getting the lens out a real problem. To be honest I cried so much I must have helped it out...

Today has been murder.... I could hardly open my right eye this morning for a couple of hours. I used the pinhole specs and they really helped. But the sun has been giving me a real problem. I just kept my eyes closed and sun bathed all morning. Just at the moment, the vision in the right eye, is like trying to look through a thick net curtain.... HELP.... I know it will get better, but when???? Jacqueline.

Sweet,

I know this has nothing to do with your original post, but I am starting to think you are a Gremlin

Perhaps we all are!

Many of us come out at night, bright lights hurt us and we are quite mischevous! What happens if we eat after dark?

If I had not dyed my hair last night and spiked it instead I could do a very good impression of Gizmo

For those of you who saw me at the confrence, If I do not dye my hair, I have three grey stripes. Me I think I look like a mad badger, to some a skunk!

Gareth

LMAO!! Gareth!! Maybe i am a gremiin! LOL!!

I was really depressed, but four pints of cider later and actually i now find all of this kinda funny, though i know that when i am sober tomorrow i might not. But hey, i have had a really sxxt week and being blind has not helped here. Though friends have been so dam supportive, i feel so dam useless and this post is taking forever to post as i keep making typos lmao!1

Maybe i need to go hide now before i show myself up more, LMAO!!!!!!!!

Love ya!! Sweet X x X

Hello all

I don't know about a gremlin, my husband says I am a 'mad harpie' not 100% sure what he means although I think it refers to my temper tantrums when I can't see as well as I want to.

Susan

Hehe Susan!

Jacqueline, i know where you are and its really bad, and im sorry for that. Yes you are right it is a different problem but it still means that we are not in work, and to me that is everything right now. Though work are being very supportive, and ive just returned from a picnic in the park with some of them, it doesnt help.

I dont want to be on sick any longer, as in fairness I AM NOT SICK! I just cant see and i tihnk that is not a valid reason anymore

On an infection i know about that as well, and honestly thought i was going to lose it if i poked myself in the eye with the abx ointment any more! But i just wanted to say that while it seems far from it now, it will get better.

Just wanted you to know am thinking of you, and you are more than welcome to email me and complain anytime. I do enough of that as it is and it does help somewhat!

Take care

Love Sweet X x X

Hi Sweet
As a matter of interest,what sort of lens(es) are you wearing?Have you tried other types in the past?Am I right in thinking that you used to get on well until you had a replacement lens when things started to go wrong?

Hmm not entirely, its a really long story. Which in short follows that i have had a RGP for thirteen years, only in my right as im told my left is too scarred with failed lenses in the beginning and i cant wear one. I was fine for eleven years, but have had so much pain with it for the last two. I was waiting for sclerals in Wales for a year, and then i moved to London and im still waiting for them.

I do want to try something else and did not want this RGP back, but for reasons i cant say here i had no choice. Now i am looking for someone else to get a different lens. At the minute though i think i would rather be in pain and have my old lens so long as i can see, but even with the new one i didnt want i still cant see. Its just all dam frustrating, and more to the point i dont think i am being listened to in what i really want. And lol, even poetry cant help with that though i got into a lot of trouble with it!! LMAO!!

I will never learn, but thanks for taking an interest

Sweet X x X