Living with those with Keratoconus

[Katy Baxter]

Hi-Im Katy-my partner is Aaron Baker (worried about PMMA lenses). I decided to register on the website as although I dont have keratoconus, I do live with someone who does-and I would be most interested to hear from other wives/girlfriends/fathers/mothers etc living with those with KC. I went to the conference yesterday, and found it very informative -especially the talks from Gareth and Ken.

Anyhow-Aaron is a bit of a worrier and sometimes I find this difficult to cope with. I dont know the answers as to whether his eyes will get better-whether a cornea graft could blind him-why his lens wont ALWAYS come out his eye when he tries it. BUT I can remove his lens for him if he gets stuck-of course-I read this website and went to the conference with him so I can gain as much info on KC as I can.

Is there anyone else who can identify with me? I love the fact that Im now more clued up on KC, and that I feel im a stronger support for my Aaron. I think you're all amazingly upbeat and live in the knowledge that KC is about challenging yourselves-not about having impaired vision. WELL DONE ALL OF YOU XXXXXX

[Sweet]

Hi there!

I guess i will post a little something, as having KC myself i'm also living with my twin sister who does! I think though that i am a lot more understanding of her problems as i have it myself, but it's nice to read how supporting you are when you do not.

Hehe sometimes things are kinda funny, like when we are trying to get each other to help out with something as we can't see but then neither can they! It's kinda like the blind leading the blind!!

But we do understand each other, though have a slight difference as i need a lot of light to see and so will turn ALL the lights on, whereas she hates bright light and so goes behind me and knocks them all off!! LOL! But as it is her house i let her get away with it!! lmao

I actually think that it is nice knowing someone so close who has it, as when i'm having a bad lens day she really does understand, and we give each other tips on coping. I just wish now though with all the driving lessons i am giving her that she will hurry up and take her test, so that when i am having a bad day she can drive for once!!! LOL! I guess with her being married with a husband who drives she has never needed to, but i'll push her in the right direction hehehe

Anyway, hoping you get some support here from others who live with someone with KC as well. I guess i am slightly biased as i have it, so i know what she is going through hehe

Love Sweet X x X

[jayuk]

Hi Katy

Ill give you my take on this.

KC for me was all ok until it got Advanced. I mean I was happy with how I was coping; had very good vision, in fact I didnt even know I had lenses in during the mil/moderate stages.

When it got to Advanced thats when things hit me. Then I had the hydrops which hit me even harder.


I would say on this subject that if it wasnt for my wife and her understanding life for me would have been even more difficult. To me she was/has been/is my support and understands now what I have, why I have bad eye days, why I sometimes will not go out, etc etc.Oh she is also my mobile "Is there an air bubble in my scleral" checker lol.

Even today after my graft she helps me soo much ...when we go out she makes sure I have everything, solutions, drops etc.

Its difficult to say how to help a person in these cases....but it does take alot of patients....and to understand what is happening to that persons eyes.........

[Katy Baxter]

Lol-I know all about the air bubble scenario! Am also good when his eyelids get pulled in by the suction!! I think I cope pretty well, and the more knowledge I gain, the better it gets!!

[whiteduck]

Do any of you out there have partners/family members with KC which tends to make them worry more generally about day-to-day things...

I am a thirty-something KC patient and tend to find I worry - am I alone?

Not sure how my wife puts up with me sometimes but thank goodness she does...

[jayuk]

Whiteduck

I do worry.....but from a logistical perspective.....like I hope I have a good eye day on so and so day as I have a meeting, etc.....I am concious about blinking too much etc.......also about getting to places by rail/driving.......if it was nt for my GPS alot of the times Id literally be lost!!........so yeh I do find I worry on day to day things about various

[GarethB]

Firstly thanks for the kind words about my presentation.

I think our partners put up with a lot because when things get hard you get frustrated and often our partners bare the brunt of it. My wife is very understanding and takes nit in her stride. I think she knows now that if I let out my frustration when I can not get a lens in, suddenly all is OK.

I know the problem with getting lenses out. I went to a high street optition and asked if they had a widget that resembles a small sink lunger for removing lenses. It costs £2 and makes lens removal so easy. My eye lids get greesy and getting a grip to use the lids to pop a lens out is really hard. The plunger means I can pull on the lids further away and all is OK.

The other way I have reduced the worrying is by having a task list at work I stick too. My calander on my pc has all the times I need my eye driops marked private. No meetings are scheduled here, so I know I can do my stuff in piece.

Home is far more relaxed, if I am late going somewhere including getting to work, so what! I have a disability and my health is more important. As I said at the confrence, with my management strategy, I do a 40 hour week. Like most I am contracted to do 37.5 hours, I also work flex time with core hours.

If I have a series of good eye days, I have hours in hand so that if I have a bad eye day are as is now going to last a while, by the end of the month I have still done my contracted hours so no worries.

Before I learnt to manage the new developments with my KC, I had councelling for depression. Although I was not aware of it, the worries were hidden in that I was worried about how the condition may develop and how my career would be affected. Since joining this group and learning how to manage my current needs I am a whole load better. What ths group has tought me is the need to concentrate on the here and now instead of the what ifs.

The fact that your are there for your other half and learning about the condition is more than most partners. What you are doing is probably in my view the most inportant thing any partner can give to a KC sufferer.

Gareth