UK Keratoconus Self-Help and Support Association

Sorry guys ..... i am around, just fell off the world for a little while and decided to take some time out. Everything with 7/7 was stressful and three months of being blind drove me insane! LOL, well i kinda knew it would eventually!

But ..... the GOOD news is that i went back to work today, which was fantastic. Everyone was really sweet and i'm just about ok to read so i feel fine about that. It's just depressing to me that i have lost so much vision in three months (three lines), but to be honest i guess it was going to come one day. Though i kinda thought maybe it would be more gradual so that i could get used to it!

Things though are ok. I'm not allowed to suture, take bloods or cannulate in work, but i think i can live with that, as now i have my life back!! It's strange how weird things get when normal life is suddenly taken away, and it's also very strange that i rely SO much on work and am completely lost without it!

Also just wanted to say i had a brilliant time in Scotland! The Killers, Keane and Green Day were fantastic! The only bad thing was that i came back a year older! LOL!! I'm now in my last year in my twenties, oh well ..... we all get there eventually! (sigh!)

On contacts ..... i've kinda gone backwards here and am using my right RGP more, (even though i now have sclerals). I know this isn't really the answer, and things could all go backwards again. But i get better vision with it, and i need that at least to drive and see to work if nothing else. I do have a left RGP now though which is quite odd after so long without one (11 yrs). But i'm coping quite well and have got to six hours which i think is quite impressive for an eye everyone gave up on. What do i get out of it, lol, one more line with both of them! (just making 6/12)

On the sclerals front ..... hmmm ..... the idea sounds very good to me, but i can't get used to these at all. It's really messy (or at least when i do it!), and my vision isn't good. Comfort wise though i find them better so maybe i should just keep on playing. But i seem to find it takes me forever to put them in, and then when i can't see well i wonder was it worth it?

Anyway ..... have just been to see a private dr, who thinks i should get a graft (maybe i shouldn't have backed out before). I have a lot of scarring with the left eye which is why i haven't worn a lens for so long and my vision is really poor even with a lens, but if i do it soon i could get away with a partial graft.

I didn't believe i would actually say it, but am seriously considering it, so will be looking online now for some info. But any from you guys would be great! A big worry i have when it's all done, is when i can go back to work! LOL, well i have only just got myself back into it. I know most go back in a couple of weeks, but i'm not really sure where nursing would come in because of infection risks etc, any ideas?

Ok ..... well i think i have talked enough! Will be catching up here soon! Thanks for all your pm's and emails, i will reply as soon as i can.

Just a few things,

Drew, how is the guide dog going?? Was thinking of you and wishing you well

Jacqueline, are your eyes any better now?

Jayuk, thanks for your support, will hopefully talk to you soon

Pauline H, how is it going - did you go for surgery after?

Shoayb and John thanks for your thoughts, yes we did make it back ok from Scotland even with my sisters navigating! LOL!

Susan, sorry i haven't got back in touch yet, might take you up on your offer to call you again soon, as these sclerals may be beating me! LOL!

Gareth B, thanks for your sincere thoughts, will email you back as soon as i can!

Pete B, hoping you're still doing well after surgery? Did your check up go ok? (Hope so)

And to everyone else i missed here sorry! Catch you all soon!

Love Sweet X x X

Hi Claire

Dog is amazing I would recommend anyone who uses a white cane more than their lenses to get one. He's changed my life. I went to see my mum for the first time in two years on my own yestarday and I got home as well.

Must say though took him to London on Wednesday becasue I had to go to MEH. Went to Harvey Nichols to get a sandwich (my lunchtime treat) and Harvey Nick's security told me to leave because I had the Dog with me. Read them the riot act and they let me in. Wasn't impressed and they will be getting a written dressing down. Guess it was the first time I faced this sort of discrimination I was shocked, have to learn to get used to it.

Drewyx

Hi Sweet,

Sounds like you have absolutly nothing to loose going for a graft in the left eye. Like most ops, they sound worse than they are and from my experience, nurses are the worst patients!!!!!!

Drew, good to hear about the dog being such a benefit to you. Security guard at Harvey Nicks sounds a bit thick. Let us know of the further adventures of Drew and the guide dog. What is his/her name?

My wife does a Hospital Radio show after a blind chap Chris and Victor is his dogs, they do a request show and collect the requests too. Chris tells the patients that Victor finds the records and does all the faders too. You will be amazed at the number of people he can convince that Victor the guide dog does most of the request show production!!!

Gareth

Hello all

Glad to here you are back safe and sound Claire and that Scotland was good for you.

Drew - great news about the guide dog. Not surprised about the security guard business though, it is really 'eye opening' (no pun intended) just how much discrimination can be out there. I have spoken with another friend who uses a guide dog and similar issues have arisen.

Claire - do ring me if you want a chat or email if you prefer.

best wishes

Susan

Good to have you back Claire...

Place hasn't been the same without you and your mad Welsh wit...

Hope you sort your graft issues out... the best person to ask about infection issues is the surgeon whose doing the graft really....

Greta that you had an excellent birthday after all the trauma of nearly not getting to Scotland.....

Lynn