Social situations - avoid ? - thrive ?

[space_cadet]

Since being dx with KC, I have found myself suffering from bouts of wanting to hide and avoid my friends, but other times, once my friends have got to know my limits enjoying being with them...

Going out for dinner is something I love, yet I find myself when in restraunts having to either choose what I know is on the menu in the restraunt we go to, or having to ask someone to read the menu to me (which I hate doing, as hate feeling like I am burdening people, even though realistically I know Ben (husband) and my friends are all awesome and always want the best for me.

I am a avid Leeds United fan, love the buzz of live games and being there, yet due to inability to see, haven't been to a game all season, listening on the radio isn't the same, having SKY+ is a help when games are on tv, as I can pause n rewind see I don't miss vital tackles, yet have to sit uber close to our large tv.

I love to read, but can't which frustrates the hell out of me.

I am still stuborn and go to hospital appointmnets on my own, nearly get run over several times when doing simple things like crossing one road to the shop literally accross the road from my apartment to get bread , milk etc. Walking to uni is hard as roads to cross, traffic etc ..

Not seeing friends until they are literally in my face, bumping into people as simply don't see them, 99% of the time unable to apply make up to the levels I less than a year ago could ..

and the list goes on ...

What about you in such situations ? What do you find helps ? What hinders ?

Lea
xx

[Lia Williams]

The only thing I avoid is swimming. I'm not prepared to put goggles over my lenses - I fear they could get knocked and I'd lose the lenses. I do have some prescription goggles which give me some sight - but I'm still unable to recognise anyone who is more than 6 feet away so I hate the whole experience in a crowded pool. The benefits of a swim are just outweighed by the frustrations I feel when I can't see people.

If I have my contact lenses in I'm 'me'. But without them I'm lost. I did have a month without lenses about twenty years ago. It was very hard - I coped by reading lots of books. I really did have my nose in a book as that was the only way I could see to read. I struggled to work on a bus and peered at my computer terminal and paperwork.

I'm lucky that I can wear my lenses for 15 hours a day. But I do have to ensure that I don't overwear my lenses otherwise I know that it will have a knock on effect of reducing the wear time a few days later. So I'm no good a late nights. It seems daft to say that I have to leave the party as I need to get home before my lenses time out! Sometimes I give alternate eyes a rest during an evening out - but that's not always practical. Or I'll put lenses in later in the day - but I'm limited in what I can do wearing my back-up glasses as they don't improve my vision that much.

Lia

[Andrew MacLean]

The thing that most people find hardest to understand about somebody else's keratoconus is the part time blindness. Sometimes we can see well, and recognize people across distances. Sometimes we are legally blind.

The invisible difference is that sometimes we have lenses in and sometimes we have them out.

My approach was always to tell people about keratoconus and warn them that there would be times when I couldn't see them. They got used to asking, 'Lenses in or lenses out?'

Some people just found the whole thing so difficult that I am sure they avoided me. When I lost my ability to wear lenses and was registered blind, some of them made a point of seeking me out and apologizing.

All the best

Andrew

[Lizb]

I dont avoid football matches, and whilst i cant see which players are which, it is possibly to identfy the players by the colours they wear. you can still soak up the atomosphere (and i know of a couple of blind guys who go to football matches on a regular basis and listen to the game on the radio whilst at the match so they know what is happening as well as going off the crowds reactions.

I dont avoid social situations, as my atttitude is "i have to live with this, i am not going to let it rule my life". I ask for help when i need it, am never made to feel a burden to anyone, and anyone who thinks i am a burden isnt a true friend. Some poeple dont realise I have any problems, let alone the impact KC can have on my life, esp when my good eye isnt working.

[BurnTheAction]

im only 23 and i have to say i have changed into more of a hermit as my KC has progressed and headaches and reduced lens wear have crept in, used to be a lot more of a party person when i was at uni a few years back, but a busy club is a horrible place to be with very poor vision if you cant wear your lenses for too long

I really love seeing live music however, and manage to get to gigs and back fine, but to answer your question i have become a lot more of a stay at home type person, i like to know i can take my lenses out and rest my eyes up at any time if need be.

I also used to be very into martial arts but have simply had to stop through fear of eye damage with lenses in or out and not being able to see well enough without lenses which was really annoying. I still go to the gym, run and do yoga though, alongside playing guitar these things are great for when you cant wear lenses, focuses your energy.

Friends and family are always telling me i shouldn't let it effect my social life but as someone said above, with comfortable lenses in i am 'me', without something just feels off, like its not quite 'me'

[Libby]

Hi there,

I find that im one person with my lenses in and a totally different person without them.

With lenses in I would describe myself as a confident, friendly outgoing person.

Minus lenses i am sooo much more withdrawn and very lacking in confidence etc - this is all down to the inability to see, even going to the ladies without lenses in can be a harrowing experience when all the signs are a complete blur.

I also find that people cannot understand that with lenses I can see perfectly well but without them my sight is very very bad. I would go as far as to say some people just look at me with disbelief when I say I have bad eyesight - I think because our eyes look normal it is very difficult for other people to understand.

As they say you have to "walk in someones shoes" to truly appreciate what they go thro.

Hope you all have a very Happy Christmas
Libby

[tneedham]

I think that it is also impossible for people without KC to imagine the vision we have without lenses.
As it is such a bespoke condition, each of us have slightly differerent levels of ghosting etc...
I find that people assume a short or long sighted level of vision where in actual fact is much much more complex and is not just a case of holding the menu etc closer.

[Loopy-Lou]

Without my lens I don't exist that's how I feel because I can't read, use the computer, judge depth/distance, see steps/signs/maps/indicators/numbers/sell-by dates, see people unless really close. It's too stressful physically to hold things 2" away from my face to see it so if my lens has to come out then I don't go out.
If I'm already out and my lens has a 'wobbly' so I need to remove it, then I get very stressed by that, it's the whole screwed up face/pain/streaming eyes scenario because other people either don't understand or assume I'm vain for wearing a lens instead of glasses, or why don't I have glasses to put on. I hate having to ask for help and in areas I don't know I'd get a cab home I just can't cope. The things I do with a lens in, physical activity I wouldn't do without the lens. So I just don't cope without it.
When it's in I'm fine, I still have to be careful in certain situations such as dark cinemas not being able to see well in the dark, but I will feel my way or ask for assistance. I also have to be careful going down steep stairs and I can get anxious when there are lots of people moving towards me fast. If I'm meeting someone I let them know they will see me before I see them, or someone picking me up in a car knows not to wave, that they have to be close or get out of the car.

[Loopy-Lou]

It gets so complicated to explain I only have useable sight in one eye with a lens and very little without it but for reading I need the lens and glasses and that only works for the one eye. It's just too hard for most people to grasp because they think you either see or don't see!