Am going insane!

[Paul Morgan]

Claire I'm gonna post this once in red and once in black in the hope you can read one more easily.

I just wanted to say I think you are very brave for letting us know what's going on in you're life. It sounds pretty tough and I sincerely hope it gets better for you soon.

I would echo what's been said above. Talking books are excellent. My brother spent six months in traction some years ago having broken his neck. He just about emptied the library of talking books, they were great.

Keep talking to us all...don't think you are alone!



Claire I'm gonna post this once in red and once in black in the hope you can read one more easily.

I just wanted to say I think you are very brave for letting us know what's going on in you're life. It sounds pretty tough and I sincerely hope it gets better for you soon.

I would echo what's been said above. Talking books are excellent. My brother spent six months in traction some years ago having broken his neck. He just about emptied the library of talking books, they were great.

Keep talking to us all...don't think you are alone!

[Sweet]

Thanks everyone for all of your support, i think i would go crazy if i didnt come here and vent some!! It is nice as well to know that others have been there and that this will pass.

Paul, thanks for the post in both colours that was sweet, is better in black though but it is nice that you did that!!

Am feeling proud of me today. Went to see a dr in occupational health, who thought i was mad i think, although he did know what KC was which is something. I think though that for someone who went in saying i was going blind, that i walked around the room very well. But i dont think he sees that seeing a world as a blur of coloured shapes and featureless faces, is blind to me!! I can see to get around, but only as one big blurry mess, which is only enough not to fall over a chair. this is not seeing!!

Anyway ... he is ok with it, gave me a vision test though why i dont know as i couldnt see how many fingers he had up, and has given me two weeks off work. So at least work are ok with me, am going to venture in next week and explain to my boss, but i dont think she will be surprised as she has seen me with sore red eyes since ive been there.

But proud and happy because i went shopping today and made it back!! And not just boring food shopping i can bluff my way through, but actual pressie shopping for my brother in law and brothers girlfriend. I soent five hours picking up EVERYTHING and checking it as i didnt really know what i wanted or what was there, and though i felt stupid had to ask the cashier for help with cards as i couldnt see what it said on it!!! But i did it, and it wasnt so bad! I even came home and wrapped them myself and wrote on them in BIG childish letters hehe!! I just wanted to prove i can dam well do this, i needed presents whether i can see or not and i was going to get them!! LOL!

Was upset though when the lady in the bank looked at me and questioned why i couldnt fill in the form and that i didnt look like i couldnt see. Like i would be standing in a queue for half an hour with my passport and cash card to take out cash when i could have used the cashpoint myself with my cash card!! GGGRRRR But it was ok, and i was proud that i cant even see to cross the road but i bought three cards, two presents and went shopping in a place i have never been before. Although i lost the tube on the way home and had to spend ages asking for directions but in small steps. Saying see that building down the end of the road, does not help!!! LOL!!

So am going back to cas tomorrow morning as i have finished the weeks course of antibiotics. Just hoping they can suggest something.

Lynn i will ask about this lens, anything has to help, thanks for suggesting it, i will let you know how it goes. I just need to know how long this is going to take as its like my whole life is on hold and i have no real idea what is going on. My sight has gone worse if anything, and getting really bad headaches as im struggling to see. Also so tired, i guess i keep thinking it is time to sleep as i cant see to do anything else!!! LOL!!

So ... with that in mind i am off to bed as it kills me coming here to read as i can hardly see the screen. Thank you all for listening and posintg support and advice! Goodnight, take care

Claire X x X

[Lynn White]

Claire....

What can I say...? You have done so well to get out there and battle beaurocracy!!

The headaches are due to the fact you are so blurred.. expected but a "pain" nontheless...!!

You said you were going back to Moorfields.. so when you do, emphasise you are a nurse, need to get back to work or if not, you need a realstic time frame for recovery. You also need some suggestions to speed up healing.

You are in the NHS so you know the score...if patients don't ask you don't volunteer... because time is precious. If patients DO ask.. you take the time to answer and the more they push the more you end up doing.

Its hard when you are having problems... but the ONLY way you get anywhere in hospital is if you ask (politley but firmly) what is happening and how can things be improved.

However, you must also realise that professional staff know the pressures on patients to get back to work and often the best gift they can give you is time to heal. There is nothing like the hospital saying you have to have a few weeks off... this gives you "permission" to relax, take it easy and adapt to changing conditions.

Its a balancing act... you need to relax but you also need to work..

I think you are getting there.. you certainly have got your sense of humour back!

Lynn

[Dipesh]

Claire,

Like everyone else, I would like to offer my support to you.

I hope your visit to moorfileds was sucessful and were able to answer your questions.

Hang on there Claire

[Sweet]

Well now i am REALLY confused.

Just got back from a four hour wait in Moorfields, i dont mind if i can sort out the problem, but now i am even more confused.

Apparently swelling has gone, and no sign of infection at all, oedema has ckeared up which is really really good but .. why can i still not see???

I put my lens in this morning, and yes after what i thought was the orginal problem i have had someone look at it and it is really clean, but im still almost blind. I can see no better with it, its still blurry and useless.

They think it is now a lens problem in the fitting, but how can all that change in a week?? Could it be that i need a new lens with stronger vision? Eye pressures are ok, low if anything, 8 in right and 6 in left, not that that means anything to me!!! Just glad it is not another problem!

But the problem now is that i still have about abother month to wait for sclerals, so where do i go from here? I had my gas perm in Wales, do you think it is worth going back for another sight test and maybe a stronger lens? Or is it more that i have come to the end of wearing gas perm lenses and i need to move onto sclerals, where i hope to get a better fir?? I think that is more what they meant in that the lens isnt sitting properly anymore, although they didnt look at it as i didnt wear it as it is no better and it feels no diffferent to me.

Or should i go to an optician here in london who deals with KC for another lens, as i cant really see to get back to Wales? Do you think that the strength of the lens is the problem, i just dont know.

Any ideas or suggestions would help! Thanks again, Claire X x X

[Lynn White]

Right Claire...


Glad you went back and sorted THAT one out!

OKay... what has happened is that while you left your lens out, the corneal curvature changed... this will have change the fit and the power needed for your lens. If your cornea is clear and healthy then all you need is a refit. Nothing to panic about.

You were very happy with your optom in Wales, so its probably a good idea going back there as they have your history and can compare powers and measurements from then to now. I personally would give the RGP lens as much chance as you can merely because the sclerals have such a long run in time and you need to get back to work. You can always keep it as a back up if you find the sclerals work better when you get round to being fitted.

Give your optom in Wales a ring and explain everything and see what they say.

Lynn

[Sweet]

Lynn thanks for your reply, thats kinda what i thought to go see my optom in Wales. Moorfields said i dont have any new scarring which is really good, am so happy about that, so i guess i just need to struggle and get on a bus to Wales and see them there!!

Hehe i just phoned my dad bless him and he said he will pick me up and take me to the opticians so i just need to get to the bus station in Wales. How hard can it be?!! Im sure i can manage that after all the adventures i have had with poor vision lol!!

Just really hoping it will all be ok. Just one thing though does this mean that i need refitting for the scleral lenses that are being made? Would hate for them to be made and they arent any good anymore!

Thanks again, a little happier sweetie

Claire X x X

[Lynn White]

Hi Claire...

The sclerals tend to be based more on the shape of your sclera not your cornea so should be more or less right... though the power may well have to be modified. You'll just have to wait and see...

So... if we don't hear from you on the boards, I take it you will be wandering around lost in the wilds of Wales!!

Good luck and keep us posted!

Lynn

[steveg]

Sweet,
From what I can gather, your vision has suddenly become 'cloudy' and the lens is of no use? You have mentioned that hospital think its because of fluid in the eye?

Exactly the same thing happened to me when I had my KC, which was fairly advanced, I had scarring on both eyes, and the cornea shape was getting progressively worse, so I was having refitting on a frequent basis.

On at least three occasions I manged to get excess fluid in the eye (not both at th same time) which was like looking through a cloud - the lens was no good. I recall going to the hospital and they gave me drops 9can't remeber what) and eventually it did clear up, over a few weeks. On one occasion it cleared up as quickly as it arrived without any drops.

I understand after speaking to my optician at the time, this is a symptom of more advanced KC, where water will get behind the cornea. So you get this impressuon that its almost like seeing things if you are underwater.

It will clear, but after the last episode wit it I had it was a contributing factor in me having my corneal grafts. The KC has got to the stage anyway where the optician could not really get a fitting, and those large hard lenses were hell. I had my first graft in 92 second in 95.

I don't know anything about what your KC is like, but does this ring any bells?

Steve

[Sweet]

Steve yes it sounds the same and the blurred vision is driving me insane! I fell over a table earlier, which was so NOT funny!!

Luckily though the swelling has gone down so am hoping to get a lens refitted and it wil be all ok.

Hoping your sight is ok. Will let you know what happens, thanks for your post!

Claire X x X