UK Keratoconus Self-Help and Support Association

I have a problem:

The wife is starting to get stressed, very very stressed indeed about the op in a few weeks.

I have shown her the factsheets (on request) which if anything have made matters worse - by making things more real for her.

She has also just found out that the local hospital: Kent & Canterbury doesn't do eye A&E and that we will have to trek out to Ashford in the event of any hiccups at a later date - which makes things worse for her as she doesn't drive and public transport to Ashford Hospital is um interesting at best.

If anyone has any advice on putting the minds to rest of partners/families etc who are driving you barking with their stress, please share it!

Thanks

Paul

Paul

Your wife is getting stressed because she loves you.

Of course she worries about your going into hospital, and even under an anaesthetic. She worries about your recovery from surgery. She worries about any pain you may have. She may even be worried about having nothing to worry about.

1 Anaesthetics: The Anaesthetist is good at putting people to sleep and waking them up again!

2 Surgery: she will find out about the outcome of your surgery in the same time frame as you do. After the operation they will be able to tell you how things went. then comes the bit where you both have to be patient .. it may be a very long time (in my case it was over 18 months) before your sight shows marked or significant improvement. Yet, at the end of that time, you have the prospect of better sight than you have had up to now!

3 Post surgery care. In Glasgow they have different degrees of Emergency provision. there is an Ophthalmology A and E for people who have routine ocular emergencies. then there is the 'call in' service for post graft patients.

I have the telephone umber of the ward. At any time, day or night, I can telephone and arrange to see an Ophthalmologist in the ward, and not in an A and E department. It may be that your hospital offers a similar service.

When my wife was stressing about my surgery, it never seemed sensible to offer reassurance, because she could always counter any bland comforting words I might offer with a "but it might go wrong" or "how do you know". So we'd hug and I'd thank her for being so loving. I found comfort in knowing how worried she was and in the sense that I was not bearing all this alone. I had to get past my need to be the protector, and allow that there are situations in which I was incapable of offering protection from worry or anxaiety.

How long to go now?

Andrew

Hi Paul,

Perhaps your wife is stressing as you are so relaxed, but my question to her which I have used with my wife is

'What is it that is going to be gained by stressing?'

As far as things going wrong, that is rarely the case,as you are aware many of us are nor representative of the UK KC population.

There are two options if things go wrong;

1) Have a conact number for emergencies to get in touch with the doctor?

This is what I had when my grafts were doen, he lived in the next village 8 miles away and to get to A&E was 16 miles and would go passed his front door anyway.

2) Taxi's will get you to A&E.

My father inlaw was advised to do this by the ambulance service when he had chest pains, they said it was probably heart burn. He was in for three weeks because he had suffered a heart attack.

My local eye A&E have also recomended the Taxi option when I have had to get to them.

Regards

Gareth

Chaps,

Yes I think the wife is stressed because I am relaxed about it. Giving her a copy of the fact sheets and AGM details has helped her understand the condition as well as give her more things to worry about.

At the end of the day the eye needs doing - at worst it will be about as usefull as it is now, but need to do the bad one now as the good one is getting worse - slowly; and with the couple of years to heal it makes sense to get it done.

Most of the stuff she is worried about is going to have answers when I have the op; how did it go, what about A&E etc etc. There is no point worrying about that until it happens, after all I could get run over by a bus tomorrow. (No I haven't said that to her!).

I am sure it will be fine, I know that this forum throws up more horror stories than success ones, but then thats the nature of these discussion groups. You can only say "had the graft its loverly" so many times and this place is more a place to shout for help and reassurance. I am gratefull that the wife hasn't discovered this place (that I know of) yet.

In the meantime whilst I (we) wait I am trying to keep us both occupied and the diary full. At the moment her latest job is to find nice curtains with a blackout lining for the bedroom which I am currently decorating. With any joy that will keep her occupied for some of next weekend.

Andrew: 23rd March - so I doubt I will be going to the AGM on the 25th, though actually it could be one of the best places to be!

Thanks chaps

Paul

Best of luck for the 23rd, Paul. We'll all be thinking of you.

By the way, I may be being a little dense, buy what's the SWMBO acronym?

First of all, do not show any hardcore documentary stuff like pictures, videos. Rather don´t do that yourself either. Never mention the possibility of blindness. Rather just do it and recover as the hospital advice. Adding stress to it may even harm final result. Tell her that the best thing for you is that she calms down and let thing proceed as they should. Perhaps a romantic dinner would help?

And by the way, I say "had the graft it´s lovely" I think this will be just fine!

I wish you the very best for the op, and welcome to the club!

Sorry to hear about that Paul, but I can certainly share your feelings about the K&C as it's likely to become a problem for me too.

May I ask what fact sheets you are talking about though?

I really do think it is sometimes worse for those who love us as they are the ones who always feel so helpless.

Of Course it is worse for our loved ones, they dont have to live with our vision, they live with us, and the KC by default, but dont have the daily grind, the hiccups the pain the everything. Thye try to understand but cannot. You are looking forward to hopefully something better, she cannot understand how even a wee bit better can be a huge improvement. That it cannot really be worse.
For you there is only really a gain (unless you are one of the poor few) for her she cannot yet see that. Good luck Paul, for me the graft was lovely too.

ChrisK,

The support group has a range of fact sheets regarding KC, some can be downloaded from the link that is on the homepage. Others are mailed out by Anne Keplatz when you register your details with her. You then get regular news letters from the support group.

Some hospitals now do fact sheets that expllain the graft processs too if you need to go down that route.

Folks thanks for your reassurance!

Multiple comments follow!

John: SWMBO == She Who Must Be Obeyed. And yes I know you will be thinking of me. I appreciate it honest guv.

Per: Too late, I have seen the online video - fantastic! No the wife won't be seeing that - she can't even watch Casualty. However she did hear me say "look I could end up blind" - fib I know, but I was trying to impress on my father that its nothing like having a bloody cataract operation. grrrrr That did get a big thumbs up from the mrs though and a "Oh shit" from my dad! Pleased your graft went OK.

ChrisK: When I find out more I will let you know, actually I will stick a running commentary up on my not so exciting blog, url in my profile somewhere I think. Anyway how are things going with your dicky ticker if I may be so bold as to ask?

Prue: Thankyou for the common sense and pointing out the obvious. Also pleased your graft(s) were/are a success.

One thing thats a bonus of all this is that a mad (really) aunt has decided that I now need a good digital radio and will ensure I have one in the next week or so! So who am I to argue? Handy that the BBC upgraded the Chartham transmitter late last year - and its only a couple of miles away.



Thanks all.

Paul