C3R

[tommy.dean]

hey louise, i've had a penetrating keratoplasty in my left eye (don't get me started on that tho i got baned off the website last time i talked about it ) followed by tosca enabled lasik to correct the large amount of astigmatism then a dalk in my right eye ( which I'm starting to come to terms with how lucky i am to get such good vision from). It really effected me though having transplants as I'm only 20 , nobody else seems to talk about there feelings on this board!!, I went for some counseling earlier today at the most amazing place, it's run by a group of nun's, they were all walking round in rhobes lol, they really understood me and are going to help me a lot in moving on after what i've been through, they loved my tattoo tho, as its the most important saying in the bible corinthians's 5:7 to me this has so much meaning to us keratoconics as it was written by paul, who god made blind.
Did you have a bad experience with intacts? How old are you can i ask?
tom

[GarethB]

Tommy

Recently we have not taught about feelings, but this time last year there was a whole discussion on the matter.

You will be surprised how many of us have been treated for chronic depression and had councelling too.

We have also helped one memeber come to terms with their vision and they have tried to take their own life.

Forums like this are not exactly easy at sharing emotions as without the accompanying body language in inflections of tone you get with speach it is very easy for things to be taken out of context and the whole thing degenrate.

Sharing emotions is easier done at local support group level and as the Manchester group takes off you will see this more and more.

[tommy.dean]

Heya gareth i wasn't saying that in a bad way about feelings and this forum, this board really helps me a lot!, i love it! I know sometimes what i write is a bit "emotional" shall we say but it's its nice knowing that anything that i write on here can be completely understood by you guy's as you know exactly where i'm coming from. Your so right about the manchester group i know thats its going to be a brilliant aid in helping me (and others). I'm already looking forward to the next meet . And at the next one i'm going to be on my best behavior, i'm not going to lie though some of the things i said at the last meeting had too come out for me to get some straight answers.
tom

[GarethB]

One thing that came out of the launch of mes health week is that men show their emotions in a different way to women. This often comes acroos in the way we ask questions which can be interpreted as agresive and confrontational. This has been put forward why men are worse than women for following medical advice. When we get angry and the adrenilin is pumping, our ability to think rationally and comprehend things is compromised. This is a proven fact, men or women get angry and rational thought process are lost.

There is a group in Gateshead that have been working in the community to help men deal with long term conditions and express themselves in a way that they get the answers they want but in a non agressive/confrontaional way.

I have their details and would like to discuss it with the comittee next time we meet and see if we can get these people to give a presentation at all the regioanl groups.

This I feel will help us and partenrs male and female cope and manage the emotions better and more constructively.

[tommy.dean]

that's a good point and i would of agreed with you 100%, but after my experience on "the other side of the coin" over the last 9 - 10 months, and getting the right treatment, i think sometimes us as keratoconics are totally justified in being angry, looking back i think i was quite calm considering my treatment, or lack of.
tom

[Louise Berridge]

Hi there,

I must admit, I'm not up on all the 'plasty' treatments, but I guess it's basically transplant.
What vision have you achieved now Tom?
Do you work?
You are very young, but at least you should be shot of the disease now.

I'm glad you've found some good counselling.
I was very down and in a state of panic when I found out last year, but as no-one I have spoken to has ever heard of it, I have felt completely on my own. So this board has helped me to. My family are also fairly unsympathetic about anything and don't discuss feelings, so I have had to try to be hard about it. As 'Tracy' from 'Big Brother' says to everyone, I've had to 'Deal with it'!
(You probably don't watch that rubbish!).

Now I've had all the treatment I can have, at the moment, everyone thinks my vision has recovered, which I find frustrating. I have to keep explainnig I'll never have good eyes again.

I'm 34, so it's reared it's ugly head fairly late on, but apparently I have the 'claw' type of KC, which tends to never stop progressing. Bargain!

The INTACS process was bearable, but I am getting pain, 2-3 months on, which shouldn't occur. Hopefully I'll get used to it. It's better than not being able to see much out of it.

Louise