Coping

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Bear
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Keratoconus: Yes, I have KC

Coping

Postby Bear » Wed 14 Nov 2018 9:43 pm

Hi there, finding it hard to cope with diagnosis and so far no quality vision particularly in one eye. Everyone expects stoicism but I have frustration and loneliness. Been reading posts here and i am amazed at people's experiences. So much bravery. Just wondering how do you cope? Especially if you are prone to anxiety etc

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space_cadet
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Re: Coping

Postby space_cadet » Thu 15 Nov 2018 9:20 am

this is something I wrote in April last year about living with sight loss - it may help you, although I suspect given my KC has left me legally blind our experiences will be very different but it may still resonate in places

SIGHT LOSS

I often say I am visually impaired living in a sighted world, for I was born sighted and it was only in my 20’s that I became someone who lives with significant sight loss. I know how the world should look but it no longer does for me.

When I received what at the time was the devastating news “you are now legally blind” I grieved, In denial as this can’t be happening, it can’t be happening to me, why me? I was angry, as there was so much which I wanted to see in this world, I found myself barganing with myself if I don’t close my eyes and sleep then I will hold on to the limited sight I have, if I don’t acknowledge it then it isn’t really happening to me? Only it was. Depression crept in and as someone who is no stranger to severe mental ill health I knew this is when I had to reach out to get some help for the new life I was going to embark on, therapy via the RNIB was invaluable as enabled me not to burden friends and family but talk over the phone with a total stranger who had themselves faced a similar challenge in life and she was able to help me focus on what I had and to accept what I had lost. In time I begun to accept the fact I had been very lucky to have such good sight for so long and that yes whilst my future would be someone who is legally the status did not have to define me and like many other facets of my life could be something I could choose to take on head first and try my hardest not to let beat me.

It may have been just as easy to contact LJWB for support, but something stopped me, stopped me for a while and I guess that was stigma and shame. Stigma that I was a young woman in my mid 20’s who was half way through a undergraduate degree and as at times it feels like the whole of LS17 knows each other, what would they say? Would I then be treated different by people I know? What would they say to my family, although logically I knew confidentiality would be kept illogically I felt that I had a neon flashing sign on my head that ironically all could see cept me. Self stigma prevented me as well, for developing sight loss happened to the elderly when glaucoma or cataracts took place, so if I was to make contact would I be shunned due to my age? In time I did contact LJWB who were also incredible and empowered me to know my rights, regain a sense of humour and to adapt to my life as it is now.

Realising I needed to use a long cane was not a easy decision to make, but when I sat down n thought it through sensibly I had to accept in order to be safe it would be a better idea to get a cane and get some cane skills. As it is not as straight forward as get a cane and waves it back n forth and magic happens, even now 7 years on their are times when my stomach is black and blue from where I have misjudged a path or Joe Public has got in the way and boom the cane handle has jabbed me. Especially now I am a parent it is vital to me that when out and about with Mima that the world knows yes I have a small person with me but also I do not have the sight I once had so please take a extra moment to either help me or assist me, don’t shun me, don’t place unnecessary obstacles in my path and please do not pity my small human growing up as my “carer” as she is anything but that role. She is a very head strong, determined, confident, independant, beautiful soul who enlightens my world just by being her, and to put unneccesary burdens on her young shoulders would be unfair of me to do, so please as a member of the public don’t you weigh her down.

If I had a pound for every time I was asked to “speed up traffic lights” as that is apparently what the spinny thing under the press button does, or each time I found chewing gum stuck under them I would be a millionaire by now, but instead I will simply chuckle and inform you the true meaning of the swizzle when you make such a comment to me. (they actually allow people like me to know when it is safe to cross the road)

Living with sight loss to the degree mine is however is not all bad, 2 for 1 at the cinema, music concerts, the theatre (not that I have been to the later in a long time) sport events, gaining some incredible friends who live with similar challenges who I can laugh and joke with about the daft things which have happened is a bonus (you should know whom you are and your friendship is something I cherish dearly)

Please do not ask me “what can’t you see?” as that is negative, instead perhaps ask me “what can you?” as due to my eye conditions it fluctuates daily often throughout the day, please if you see me out with my small human help me to find her if say for example she is at a busy place ie a birthday party, describe things to me, I love detail it might be boring to you, but that is HOW I SEE! Don’t be afraid to talk to me about my sight loss, you can’t catch it! It is ok to have a laugh and joke with me about things, please don’t wrap me in cotton wool and bubble wrap and pat me on the head in a passive agressive way. Ask me what I need from you. Be a friend and remember it is ok to just treat me as a person. Just do not pity me.

As time evolved and now in March 2017 we are nearly 7 years down the road from that day when the light so to speak metaphorically went out in my world, I still have days where I just want to remain in bed pull up the covers and ignore the world, yet I owe it to myself to find a way out of bed to face the world and the challenges it brings.
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Lia Williams
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Re: Coping

Postby Lia Williams » Sat 17 Nov 2018 6:20 pm

Bear wrote:Just wondering how do you cope?


To be told that my eyesight was "up the spout" wasn't easy thing to cope with. However I was referred to an optician who was confident that he could fit me with a pair of lenses. After lots of long appointments over several weeks I did eventually get a new pair of lenses and life carried on.

My lenses have been refitted many times over the years and I have to admit I dread refits. They always involve innumerable appointments, spread over several months. Refits for me never seem to be straightforward and the new improved lens doesn't always work. However I have confidence in the opticians I see that they will be able to find a lens for me. Eventually I'm back to six monthly check-ups and everything continues as normal for the next few years.

It's nearly 30 years since I discovered that there was a problem with my eyes. At that time there was very little information available so I guess there was less to be worried about as I didn't really know much about KC. These days, with the internet, there so much information is available that it is difficult to work out fact from fiction.

Hence I try to find out as much as I can about the condition, especially ways of optimising contact lens wear. Although keratoconus affects individuals differently I find it helpful to talk to others, either here on the forum or at various meetings.

Lia

Bear
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Keratoconus: Yes, I have KC

Re: Coping

Postby Bear » Sun 18 Nov 2018 10:33 am

Thank you both for taking the time to reply and share


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