How can I help Husband?

[Alice Blue]

Gareth et al,

I wish my H could be as +ve as the people I've seen on here. He swings from one mood to another so much it is hard to deal with and know what to say for the best. Most of the time I say nothing as I don't know what to say when he starts being pessimistic.

Does everyone else experience this and just hide it for the forum?

Alice

[Susan Mason]

Alice

Yes is the honest answer to your question, well from my point anyway and if I was a gambler I would probably put money on it that others feel the same way.


I know you said you were wary of showing your husband the site and I am not sure if this is because you think he would feel you had acted wrongly in posting messages about the situation. Maybe the benefits of him reading it would help or being able to see that he is not alone with the issues he has re his KC.

I personally have had counselling twice (connected a miscarriage and to the KC) and also have been prescribed anti depressants - although personally I found them more of an issue, as I spent all my time kicking myself as to why I had gotten into such a state.

I also am only too aware of how difficult it was for me initially to get information re KC. It seems to be as each case can be so different this is a possible reason as to why little is known about it.

For months I though it was all me or just in my head and then reading posts showed me that others were also having the same difficulties.

If you want to get in touch maybe by email or phone let me know.

best wishes Susan

PS I am hell to live with at times and I know it, fortunately my husband is very patient and my little boy is a great nurse.

Why am I up at 3:30am you may wonder??? Well I can't sleep too well at the moment and life is a little topsy turvey ( my little cross to bear with the KC ).

[GarethB]

Hi Alice,

I suppose when my sight was gradually deteriorating I was having mood swings which was more noticable to others than it was to me. Possibly people were too polite to comment or did not want to risk a confrontation for fear of upsetting me or being upset themselves.

Now back at work which is where it showed most, will see how it goes.

Regards

Gareth

Hi Alice

I'm Sue, Gareth's other half. I suppose his eyesight was going that gradually neither of us realised how bad it was until he actually saw the specialist. The first thing I really noticed was that he had mood swings and was really depressed and seemed tired all the time. He also had me clean his glasses several times because he said there were smears on them - which only he could see, because of his KC. It affected the pair of us, and indeed our daughter, but we are pulling through together and all you can do is just be sympathetic and lots of cuddles help! At least it provided him with a good chat up line when we first met after his corneal graft had been done - he asked me to look deep into his eyes to see the operation scar!

[Alice Blue]

Thanks Sue and Gareth,

Would it offend anyone to be told to 'consider their choices'?

H was in tears last night after a pretty good period. Its a month to go and he says the other eye is deterioating rapidly, more noticeable as he has nothing to fall back on. He can read but has double vision on lights whilst driving.

He could get the train to work, I could get him to the station and back. But he says the day will be too long.

He isn't getting any luck with new lenses, and even having problems with his old ones.
I really wish he had had the graft years ago as he wouldn't be having this now but it's no good thinking like that.

Do you think asking him to think of options will help focus him on something more +ve?

AB

[GarethB]

Hi Alice,

Public transport to work can be difficult, it takes me 45 mins by car, 4 hours by public transport! I recently discoverd that every job centre has a Disability Employment Advisor. These people might be worth talking to as they can help regarding 'Access to work', which can include help getting to and from work. They will also be able to help your H if it is necessary to reduce working hours as KC is a disability as far as we are concerned. My GP signed me off work during the period my KC underwent a major change. I was off on full pay for 12 weeks before going to statory sick pay as I have only worked at my current place for less than 5 years. So it might be worth looking at his contract of employment to see what sick leave he could take to cover now until after the graft.

The RNIB can also be quite helpful, and it is quite common for people with KC to suffer stress, I know I did. Counciling can help as you can get a different perspective on things.

Do not worry about offending people, the whole idea is openly share what works and what does not. More importantly to be able to aske for advice.

Does your H know about this forum?
Would he be open to speaking with another KC sufferer?

I have had grafts, but have had a rare change to the rest of my eye. All I know is how to analyse and test drugs, so my work is quite specialised, but the occupational health nurse said the comapny is legally obliged to find alternative work in the company at the same pay if after treatment I could not do my job, that includes re-training. Surgery was not an option for me as the way my has changed would have a slim chance of succes and was more likely to lead to tissue rejection and possibly no real useful sight. Glasses would help, but not much, so it was back to the contact lenses which I was told was a risk considering the way my KC had deveolped and the fact I had got grafts. For me it is a risk worth taking to keep my sight for as long as possible and it buys me time to retrain at my leasure should I need to give up this job. My positive to this, is that medicine has advanced alot in the 18 years I've had KC so should my sight change again, I might be able to have it restored again like I have done now.

E-mail me on gdbeynon@hotmail.com if you feel talking would help.

Wishing you and your H all the best.

Gareth