which KC symptom that affects you the most?

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Paul Morgan
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Re: which KC symptom that affects you the most?

Postby Paul Morgan » Wed 19 Mar 2008 1:07 pm

Yep, drives me mad that does.

I can get away with glasses at a PC for about 30 mins before the headaches start...therefore working is out of the question.

You can understand other's ignorance and in some respects its your/my fault for not educating them, but it's soooo hard.

Easier to say nothing I find.

alison falshaw
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Re: which KC symptom that affects you the most?

Postby alison falshaw » Tue 01 Apr 2008 8:35 pm

Oh i totally agree with the whole think of having to explain what KC is.
They see you wearing glasses, squinting at the screen of your pc, complaining about the sunglaring through the windows and the really dont have a clue.
You try to explain and quite honestly you just feel as though it goes completely over their head. I know when I had to have time off from work - still are for a few more weeks, I am sure that people thought I was exaggerating.

The eye pain, the headaches and the general tiredness and fatigue that really sends me on a downward beat is sometimes worse than having bad visison!!
And the fact that you feel as though you are making it all up and over exagerrating just adds to the stress.

Lets hope that they find some cure and future generations can have a cure.

Ali

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timtim
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Re: which KC symptom that affects you the most?

Postby timtim » Tue 01 Apr 2008 9:44 pm

My biggest problem is the difficulty that my eyes have focusing together. I feel like my brain is straining all day just trying so hard to see things. It really puts a big strain on it, and I feel mentally tired a lot and it affects my mental state and confidence.

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Susan Mason
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Re: which KC symptom that affects you the most?

Postby Susan Mason » Wed 02 Apr 2008 9:01 am

Paul & all

How right you are as you say:-

"With lenses out you look the same, but you're blind as a bat and can't drive, go to work or even interact in the same way as you normally would.

And then it's up to you to explain this really complex condition/disease Keratoconus to them in the two or three seconds that you have their attention...and they've probably already made their mind up that you are exaggerating...so usually you don't bother too much.It's that having to explain yourself, when you're feeling low and vunerable anyway because you can't see well".


Your second point for me is also the most frustrating, you get to learn to live with juggling around seeing time and making allowances such as not as much TV and book reading however, then feeling sad and maybe a little down you come across those who think they know better, they ask whats wrong and then stop listening. Maybe sometimes it is with the very best intentions however, I often find very hurtful. Quite recently I had such an experience and to be honest it has upset me more than I think I have admitted. At work after having a replacement left scleral lens I had been having a few up and down days. My manager asked all the usual questions and I didn't feel too bad and then one night (I work 12 noon to 7 or 8pm you see) I was having a good day, everyone at home was at the local football and I thought, well I will just do a little more and try to catch up (I am a Team Manager myself so usually no one picks up for me) anyway in the end I was working until about 9.30pm and left work in my usual Access to Work funded taxi at 10pm. The following day I came in to an email from my manager "Susan is it any wonder you are suffering with your eyes when you are working so late? What do you have that is so urgent it couldn't be left?" No discussion or conversation with me and infact still not to this day (it happened around the beg of March).
I have reported this to another manager and then wished I had not as at the end of the day I still feel it's me who is under scrutiny, having to prove myself all the time - those who know who I am may understand this better. One senior boss who was very kind suggested that such people were not worth wasting my time worrying about, very probably sound advice however, not so easy always if your feeling down and especially if those concerned are your direct supervisors.

Well what more can I say?????

take care all
don't let the people that mean nothing to you get you down, because in the end they are worth nothing to you, they are just your obstacles in life to trip you up!

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Matthew_
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Re: which KC symptom that affects you the most?

Postby Matthew_ » Wed 02 Apr 2008 10:02 am

I would say the dependence on lenses because I just don't get on with them. So you get 'what the world could look like' and then the pain, discomfort and finally the 'back to bad vision' phases :x
Hopefully the graft will sort all that out once it starts to improve my vision.
I do hate the photophobia too 8)
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Get a life...get a dog!

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donna
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Re: which KC symptom that affects you the most?

Postby donna » Wed 02 Apr 2008 4:54 pm

For me its the dependance on the lenses, the discomfort when I have hayfever or am tired/ill is awful but then I remove them and thats it! I cant manage to read, watch tv, drive,go out or even interact with people. I find myself not looking people in the eye when I am not wearing the lenses.
I used to love reading in bed , I try to by holding the book half an inch from my nose but then I get tired! I have bought a page magnifier and will try it tonight!
I get tired and feel fed up when I have had a bad eye day :( I used to love my eyes and now I hate them

Nelli
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Re: which KC symptom that affects you the most?

Postby Nelli » Fri 04 Apr 2008 1:48 pm

All of the above strike a chord with me. Particularly the explaining to 'non-believers' or 'non-listeners' - some people still think I'm going to have laser correction surgery after I've already explained to them, gawd knows how many times, about c3r.

Also don't you hate it when you absent-mindedly give the corner of a tired, dry eye a rub only to have your rgp propelled across the room.

I miss being able to see only one moon in the sky and don't even mention firework displays!

Nelli :(

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Re: which KC symptom that affects you the most?

Postby JMRmail » Fri 04 Apr 2008 2:17 pm

I think the worst symptom is simply such poor eyesight. What I miss the most is being able to fall asleep reading. Since I can't wear glasses, I can't read without my lenses (and now reading glasses). I find reading for pleasure a thing of the past. I used to read two or three books a week, now I don't read books at all, and that is very sad for me.

A friend wanted me to go hiking. I usually only wear the lens in my "good" eye when I don't know what the environment is like, how long I'll be gone, etc. Removing my scleral lens requires a mirror and plunger and sometimes you just don't know where you're going to be, so I don't wear it. It makes my depth perception lousy and activities twice as difficult. But when I tried to explain it, I got the old, "Oh, you're making up an excuse."

alison falshaw
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Re: which KC symptom that affects you the most?

Postby alison falshaw » Fri 23 May 2008 9:33 pm

Paul/Melissa.

You are so so right!! The whole having to explain thing is such a drag that you give up most of the time. My KC has deteriorated that it is not manageable with contact lenses so I am back to glasses (had intacs done 17th march but that is another story) and folks think that you have perfect vision now I am wearing specs....it so damn frustrating.

And the worst physical pain is the headaches and constant eye strain and fatigue.....again difficult to explain to folks as its not an illness that is clearly visible. Not wanting to go out cos your eyes are tired aint easy to explain to folk.
Even whilst I am off work there are time when I just have to sit and close my eyes for a while.
The last newsletter hit the nail on the head.


We will survive

Ali

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melissa
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Re: which KC symptom that affects you the most?

Postby melissa » Tue 27 May 2008 7:25 am

I have the especially lucky pleasure of trying to explain to people why i need a soft AND a hard lens in my ungrafted eye- AND GLASSES over the top... I just tell them my eyes are REALLY bad and that without the lenses I would be blind- which is true...
makes you think how lucky we are to live in this generation. 100 years ago I would just be a blind women reliant on my family for everything. unable to work or live independantly.
theres always a silver lining. I am often arguing with people who say that things were better in 'the old days' -- not for me they wouldn't have been


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