Blind and Visually Impaired Community
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Coping strategies (self.Blind)
submitted by curlyq15
Hi everyone,
I just posted this to r/keratoconus and thought I'd ask you as well. "It's been one of those days where keratoconus gets to me, and I am reaching out for coping ideas. Since my last post (sometime after CXL) I've had to start using a white cane part-time, magnifiers, and wear those huge sunglasses."
Today It just has me feeling fatigued and a little sad. What rests your eyes? What cheers you up?
I just posted this to r/keratoconus and thought I'd ask you as well. "It's been one of those days where keratoconus gets to me, and I am reaching out for coping ideas. Since my last post (sometime after CXL) I've had to start using a white cane part-time, magnifiers, and wear those huge sunglasses."
Today It just has me feeling fatigued and a little sad. What rests your eyes? What cheers you up?
awesomesaucesaywhat 3 points 7y ago
I also have kc! It seems that most people with kc manage pretty well, so it sucks when yours is worse than others.
The thing that has helped me most is counseling and being easy with myself. I can't do as much during the day as I used to, I have to take constant breaks for ice packs and resting my eyes, I have to limit my time outside because light hurts so much, but I'm doing the best I can. I'm doing the best I can is what I repeat to myself when I start feeling crappy. I also made a list of things that help me feel better, since when I'm in the bad place it's hard to think of things.
For example,
Make some tea.
Cook something.
Listen to music I like.
Pet my dog.
Call someone who understands.
Take a bubble bath.
Listen to a show.
Basically, just take it a day at a time. Try not to get too used to your vision because with kc you never know what your vision will be tomorrow. But when something makes you really happy, stop and think about the feeling, because remembering that feeling later will remind you that life isn't always shitty.
The thing that has helped me most is counseling and being easy with myself. I can't do as much during the day as I used to, I have to take constant breaks for ice packs and resting my eyes, I have to limit my time outside because light hurts so much, but I'm doing the best I can. I'm doing the best I can is what I repeat to myself when I start feeling crappy. I also made a list of things that help me feel better, since when I'm in the bad place it's hard to think of things.
For example,
Make some tea.
Cook something.
Listen to music I like.
Pet my dog.
Call someone who understands.
Take a bubble bath.
Listen to a show.
Basically, just take it a day at a time. Try not to get too used to your vision because with kc you never know what your vision will be tomorrow. But when something makes you really happy, stop and think about the feeling, because remembering that feeling later will remind you that life isn't always shitty.
curlyq15 [OP] 2 points 7y ago
Those are all great ideas! I wish I had a dog to pet - they make everything better :)
I definitely hear what you're saying about counselling and being easy with yourself - it's easier said than done, but it's worthwhile. Yesterday was one of the tough days. I was working on my thesis, and in the back of my mind I couldn't get rid of the anxiety that I'm not as quick as I used to be, and that whenever things would move in and out of focus I'd my concentration would hiccup. I guess there's nothing for it but to try again today.
I definitely hear what you're saying about counselling and being easy with yourself - it's easier said than done, but it's worthwhile. Yesterday was one of the tough days. I was working on my thesis, and in the back of my mind I couldn't get rid of the anxiety that I'm not as quick as I used to be, and that whenever things would move in and out of focus I'd my concentration would hiccup. I guess there's nothing for it but to try again today.
awesomesaucesaywhat 2 points 7y ago
That's all we can do :) just keep swimming
Type_ya_name_here 2 points 7y ago
Excellent question.
You may be able to take comfort in at least you don't do crossfit.
In my experience when I feel frustrated I focus on what I can do, successful people with poor vision (for example the blind guy who climbed Mt Everest).
There's also the aspect that you get to define who you are and not others.
Think about keeping a blog, writing music, hit the gym....the world is your oyster.
Being blind / visually impaired is a much, much better disability than others.
You may be able to take comfort in at least you don't do crossfit.
In my experience when I feel frustrated I focus on what I can do, successful people with poor vision (for example the blind guy who climbed Mt Everest).
There's also the aspect that you get to define who you are and not others.
Think about keeping a blog, writing music, hit the gym....the world is your oyster.
Being blind / visually impaired is a much, much better disability than others.
curlyq15 [OP] 1 points 7y ago
Hahahah! Ok, you made me laugh :)
Type_ya_name_here 1 points 7y ago
Yay ;)
Unuhi 2 points 7y ago
I go thru a lot of audiobooks.
Gardening and cooking can be fun, and so can playing with scented everything (pick scents you like).
Writing helps too.
I don't usually show people how i feel on my facial expressions, maybe i could improve that a bit.
Gardening and cooking can be fun, and so can playing with scented everything (pick scents you like).
Writing helps too.
I don't usually show people how i feel on my facial expressions, maybe i could improve that a bit.
curlyq15 [OP] 1 points 7y ago
Oooh scents - that's a good idea...I've been really wanting to buy a bath bomb or a scented candle...maybe I should treat myself.
What kind of audiobooks do you listen to? I have an audible account and I buy a lot of The Great Courses to supplement my studies.
What kind of audiobooks do you listen to? I have an audible account and I buy a lot of The Great Courses to supplement my studies.
Unuhi 2 points 7y ago
I love dark thrillers like Jo Nesbo, Michael Connolly, Jim Thompson etc
Also nonfiction - history, psychology, random interesting topics, medical or science
Usually i listen to books really fast so the speed makes a huge difference :) too slow and my mind wonders off
Scents are a world of their owm.
I love even playing with cheap walgreens/boots etc scents.
All cosmetics, cleaning products etc have a huge element of scents. Have many, use to enioy. Also as memory aids. Some scentd help stay awake or relax, also room scents (with an essential oil diffuser... You put water and some essential oils and it will make the room smell nice) and of couse small profumes, oils, ...
Also enjoy freely the nice scents. Fresh coffee smells like happiness. I like to smell new dishes so if my husband orders meat (I don't eat mest) i want to smell ut when it arrives. I try to describe him what i think it smells like and he confirms or corrects as needed?
Outdoor scents are nice, and always different. Try to get some walking routes close to home you can do safely (even with the cane), or even better: if you can get people to walk with you, nicer.
Where i run the scents are always different. Wood of construction, fresh cut grass, try concrete, construction site smells and scents, flowers and flowering trees. So nice. It's a small loop so i always do the same route but it's safe, and i know where all those things i could trip are (pretend you didn't read anything about those construction things)
If i were a total i'd run in one of trail run programs at my local gym unless i found a guide.
No eye makeup (i always wore some until 1.5 years ago) - i rub my eyes when they hurt. I also keep them closed when i want.cooling ice, and darkness <3 so shades, no lights etc
Also nonfiction - history, psychology, random interesting topics, medical or science
Usually i listen to books really fast so the speed makes a huge difference :) too slow and my mind wonders off
Scents are a world of their owm.
I love even playing with cheap walgreens/boots etc scents.
All cosmetics, cleaning products etc have a huge element of scents. Have many, use to enioy. Also as memory aids. Some scentd help stay awake or relax, also room scents (with an essential oil diffuser... You put water and some essential oils and it will make the room smell nice) and of couse small profumes, oils, ...
Also enjoy freely the nice scents. Fresh coffee smells like happiness. I like to smell new dishes so if my husband orders meat (I don't eat mest) i want to smell ut when it arrives. I try to describe him what i think it smells like and he confirms or corrects as needed?
Outdoor scents are nice, and always different. Try to get some walking routes close to home you can do safely (even with the cane), or even better: if you can get people to walk with you, nicer.
Where i run the scents are always different. Wood of construction, fresh cut grass, try concrete, construction site smells and scents, flowers and flowering trees. So nice. It's a small loop so i always do the same route but it's safe, and i know where all those things i could trip are (pretend you didn't read anything about those construction things)
If i were a total i'd run in one of trail run programs at my local gym unless i found a guide.
No eye makeup (i always wore some until 1.5 years ago) - i rub my eyes when they hurt. I also keep them closed when i want.cooling ice, and darkness <3 so shades, no lights etc
awesomesaucesaywhat 2 points 7y ago
If you go to university you should be able to get book share and learning ally for free :)
Also, the candle section at ikea has tons of scents!
Also, the candle section at ikea has tons of scents!
Vaelian 1 points 7y ago
I don't have any decent coping strategies. My life is made of waiting between meals and sleep time and as a result I'm gaining weight. I was fine even when I had as little as 5% (20/400 or 6/120) of sight with very little contrast perception since that was enough to read magnified high contrast text and thus code. I've heard about blind programmers, but I don't seem to be cut out for that since understanding code read by a screen-reader is extremely confusing for me.
I think about suicide daily and already have a plan; I'm just waiting to make my living will (for which I will need the assistance of a sighted person) just in case my plan fails, and then I'll execute my plan.
I think about suicide daily and already have a plan; I'm just waiting to make my living will (for which I will need the assistance of a sighted person) just in case my plan fails, and then I'll execute my plan.
curlyq15 [OP] 2 points 7y ago
I understand the depression side, but I also have had help...have you reached out to someone about vision loss? In Canada, the Canadian National Institute for the Blind has a lot of resources for adjusting personally and professionally. I am a grad student and work at a research centre and CNIB has been a big help.
Regarding suicide, there are people who can listen to your story. Try http://www.suicidepreventionlifeline.org
Regarding suicide, there are people who can listen to your story. Try http://www.suicidepreventionlifeline.org
Vaelian 1 points 7y ago
Yes, I've been through rehab, and I had counseling there, it didn't change my mind about anything. The thing is that I don't like to feel disabled, so I've always excluded the things that made me feel different from my life as a coping strategy. Now that I'm fully blind and everything has to be done differently I've pretty much stopped enjoying life.
laconicflow 1 points 7y ago
That sounds pretty drastic. I was born blind, and so I didn't go through the loss you did, but all I can say is that if now you have no or extremely limited vision you should adapt and move on. Reading programing code is difficult with a screenreader today, but would it be equally difficult in six months? No, it would not be. Life has so so much to offer that you shouldn't be thinking of suicide. There are times where there's no way around needing a sited persons help, but for every one of those times there's ten times where there's a work around, usually technology related. I have plenty of problems in my life, but I don't consider blindness one of those problems. You can't change it. And it could be much worse.
Vaelian 1 points 7y ago
Yes, the world has much to offer, but without sight I'm only experiencing like 20% of it. Sight is the most important sense for humans, which means that blindness make it impossible to share experiences with most people.
What bothers me the most is the fact that I have to constantly put effort into finding workarounds for everything. I don't mind to develop skills, but only when those skills actually give me an edge at something, I don't want to fight an uphill battle to only end up performing, at best, on par with the average sighted person..
I've been blind for 2 years now and things haven't improved the slightest bit, so I doubt it will ever change.
What bothers me the most is the fact that I have to constantly put effort into finding workarounds for everything. I don't mind to develop skills, but only when those skills actually give me an edge at something, I don't want to fight an uphill battle to only end up performing, at best, on par with the average sighted person..
I've been blind for 2 years now and things haven't improved the slightest bit, so I doubt it will ever change.
laconicflow 1 points 7y ago
There are advantages to site you'll never get back. I never had them. However, having been born blind, I recognize that I'm not going to be a racecar driver or a pilot or a painter. Those are sited people things I simply can't do. But I could be an author, a loyer or a computer programmer. Those are intellectual exersizes that have little to do with site. So if you work on developing those skills instead of working on your target shooting you will be in direct compitition with sited people where there site will only give them a miner advantage. When you say you don't want to learn work arounds if they only get you back up to average. Keep two things in mind. First off, thirty years ago these workarounds would have been impossible. My work arounds allow me to wake up every morning and read the NewYork Times, I order my groceries and other shopping from peapod and Amazon. A screenreader is a work around. I love to read, and I download my books from bookshare.org. Second, plenty of sited people need to establish their own, nonblindness related workarounds, like people with Crones disease. I was never too butt hurt about being blind, but when I was 18 I thought it was a bigger deal then I do now. Three weeks after I left for college, someone in my family who is very close to me fell down a set of stairs and broke their spine midway down, so they are now paralyzed from the chest down. Believe me, you have no idea what being disabled really is. You are the only person who can improve your shitty attitude and half of this is what you choose to focus on. If you already know how to program, figure that shit out with a screenreader. I wish I could program, that's where the money is even if you take one of those eight week courses they offer online. But I looked at one intro tutorial to I think it was python, and I was like, "too much math!" And I was done. I am not telling you to ignore your lack of site. But I am telling you that if you always form your internal identity around what you've lost instead of who you are, it'll frame your life as sad. I'm telling you that you don't have to think about your life the way your thinking about it right now. I'm not one of those peppy optimistic people. But I'll tell you that honestly I can't remember the last time I was sad because of blindness. Stop wallowing. If you can't stop it, find something to occupy your mind so completely that you can't focus on your feelings of sadness.
Vaelian 1 points 7y ago
The biggest problem of using a screen-reader to code is that symbols are read as words by the screen-reader, and thus don't stand out like they do visually, which makes it extremely painful and unpleasant to code, not to mention that screen-readers don't work very well with white space and don't have syntax highlighting, so I'm at a huge disadvantage coding blind, and no amount of training will allow me to be even close to as proficient as I was before. While coding is an intellectual task, a huge chunk of one's work is reading other people's code, or even one's own code from 6 months back, and a screen-reader is not an efficient workaround for that.
I'm not denying that there are workarounds for many things, but having to resort to workarounds because there's nothing left that I can do normally bothers me, plus those workarounds don't make me as efficient as the straightforward way of doing things with sight. It's extremely unfair to have to experience life in hard mode. I'd rather have lost my legs than my sight, because I'd still be able to code and play video-games normally as a coping strategy.
I'm not denying that there are workarounds for many things, but having to resort to workarounds because there's nothing left that I can do normally bothers me, plus those workarounds don't make me as efficient as the straightforward way of doing things with sight. It's extremely unfair to have to experience life in hard mode. I'd rather have lost my legs than my sight, because I'd still be able to code and play video-games normally as a coping strategy.
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