Blind and Visually Impaired Community
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How come people on this sub never talk about other eye-related problems aside from the immediate issue of not being able to see? (self.Blind)
submitted by Arcane_Panacea
I've noticed that people on this sub only ever talk about being blind or visually disabled and the specific problems that come with having no (or little) eyesight. Nobody ever talks about the fact that, many or even most people who are blind or visually disabled also suffer from other eye-related issues that are just as challenging to live with in some cases.
For example the condition I was born with is both incurable and progressive. "Progressive" means that it gets worse over time. I was already visually impaired when I was born but throughout my childhood, adolescence and young adulthood, I lost virtually all of my eyesight. The past 6 years have been the most difficult time in my life because after a long period of relative stability, my eyesight suddenly became dramatically worse. When I got married 5 years ago, I was able to ride my bicycle to the wedding (living in Europe). Now, I can't even go grocery shopping by myself anymore because I keep bumping into stuff and can't find anything. I had to do O&M and I'm now using a white cane. This is all very difficult to handle, emotionally. I'm slowly getting better but I have gone through a really deep depression. One time I came super close to committing suicide.
It's not just the psychological stuff, though. I've also dealt with a lot of physical suffering for my whole life. I've undergone more eye surgeries than I can remember... I lost count after 12 or 13. I had my first eye surgery at age 5, then again at age 7 and so on.
My condition includes a bunch of things that have no direct impact on my vision but are still very frustrating. For example my eyes are not capable of producing any tears whatsoever. As you can imagine, this turns them into a Sahara desert of sorts. All day long I'm busy taking eyedrops to keep them half-way moistorized but sometimes it's still not enough. I can't be in a room with AC because it causes an extremely painful infection. My eyes turn blood-red and make me want to rip them out of my head. Not being able to produce tears also has the awkward effect that nobody ever believes me when I'm crying (unless they know me really well). More than once I've been in a situation where I had to cry and someone said: "stop pretending, you're a shitty actor!" When I told them I wasn't pretending, they'd say: "Of course you are, I can't see a single tear drop!"
I've also suffer from lifelong, severe Glaucoma, which again brings its own problems with it. For example there are tons of things I'm not allowed to do. When I was a teenager I liked to go to the public bath with my friends (kinda like the YMCA in the US) but I was never allowed to jump from the 3-meter or 5-meter towers because my doctors said it was too dangerous for my eyes. It made me feel very isolated at that age.
I absolutely love traveling but the eyedrops I need to take to keep my eyes moist must be frozen at all times. Once I thaw an ampule, I've got to use it within 3 days and I can't re-freeze it. This makes traveling extremely complicated and cumbersome for my wife and me. Every accommodation has to be booked in advance and it has to be a half-way fancy place to make sure they've got both a freezer AND a minibar/fridge. After booking, we need to write an email to every single hotel and ask them if they really offer a freezer and a fridge. Once that is done, we need to figure out where we will be able to buy dry ice, to keep the eye drops frozen when traveling from one city/country to another. This also means we're restricted to travel to big cities, where dry ice is easily obtainable. Although we'd absolutely love to, we can't go backpacking in Vietnam, Laos, Nepal, Bolivia, Uruguay and places like that. These countries simply lack the infrastructure we need. We also can't go on a bicycle tour through Europe because... how on Earth would we keep those eye drops frozen for multiple weeks? Nothing can ever be spontaneous; everything has to be planned months in advance. We can't just decide to visit a small village for two nights because concierge at our hotel told us how beautiful it is there.
While being blind sucks like hell, these kind of problems sometimes suck even more to be honest. There are soooo many things I'd love to do but can't do in my life. Not because I'm blind but because my general eye condition doesn't allow it. It is beyond frustrating. I have basically spent the past 6 years of my life inside, self-isolating. With the worsening of my condition, I have lost a lot of my fun in life.
I find it interesting that nobody on this sub ever talks about things like that. Why not? Do other blind people simply not suffer from any such problems? I find it quite unfortunate because, like I said, these problems can be even tougher to handle than the lack of eyesight. I'm sure it would be enriching to hear that we're not alone with struggles like these!
For example the condition I was born with is both incurable and progressive. "Progressive" means that it gets worse over time. I was already visually impaired when I was born but throughout my childhood, adolescence and young adulthood, I lost virtually all of my eyesight. The past 6 years have been the most difficult time in my life because after a long period of relative stability, my eyesight suddenly became dramatically worse. When I got married 5 years ago, I was able to ride my bicycle to the wedding (living in Europe). Now, I can't even go grocery shopping by myself anymore because I keep bumping into stuff and can't find anything. I had to do O&M and I'm now using a white cane. This is all very difficult to handle, emotionally. I'm slowly getting better but I have gone through a really deep depression. One time I came super close to committing suicide.
It's not just the psychological stuff, though. I've also dealt with a lot of physical suffering for my whole life. I've undergone more eye surgeries than I can remember... I lost count after 12 or 13. I had my first eye surgery at age 5, then again at age 7 and so on.
My condition includes a bunch of things that have no direct impact on my vision but are still very frustrating. For example my eyes are not capable of producing any tears whatsoever. As you can imagine, this turns them into a Sahara desert of sorts. All day long I'm busy taking eyedrops to keep them half-way moistorized but sometimes it's still not enough. I can't be in a room with AC because it causes an extremely painful infection. My eyes turn blood-red and make me want to rip them out of my head. Not being able to produce tears also has the awkward effect that nobody ever believes me when I'm crying (unless they know me really well). More than once I've been in a situation where I had to cry and someone said: "stop pretending, you're a shitty actor!" When I told them I wasn't pretending, they'd say: "Of course you are, I can't see a single tear drop!"
I've also suffer from lifelong, severe Glaucoma, which again brings its own problems with it. For example there are tons of things I'm not allowed to do. When I was a teenager I liked to go to the public bath with my friends (kinda like the YMCA in the US) but I was never allowed to jump from the 3-meter or 5-meter towers because my doctors said it was too dangerous for my eyes. It made me feel very isolated at that age.
I absolutely love traveling but the eyedrops I need to take to keep my eyes moist must be frozen at all times. Once I thaw an ampule, I've got to use it within 3 days and I can't re-freeze it. This makes traveling extremely complicated and cumbersome for my wife and me. Every accommodation has to be booked in advance and it has to be a half-way fancy place to make sure they've got both a freezer AND a minibar/fridge. After booking, we need to write an email to every single hotel and ask them if they really offer a freezer and a fridge. Once that is done, we need to figure out where we will be able to buy dry ice, to keep the eye drops frozen when traveling from one city/country to another. This also means we're restricted to travel to big cities, where dry ice is easily obtainable. Although we'd absolutely love to, we can't go backpacking in Vietnam, Laos, Nepal, Bolivia, Uruguay and places like that. These countries simply lack the infrastructure we need. We also can't go on a bicycle tour through Europe because... how on Earth would we keep those eye drops frozen for multiple weeks? Nothing can ever be spontaneous; everything has to be planned months in advance. We can't just decide to visit a small village for two nights because concierge at our hotel told us how beautiful it is there.
While being blind sucks like hell, these kind of problems sometimes suck even more to be honest. There are soooo many things I'd love to do but can't do in my life. Not because I'm blind but because my general eye condition doesn't allow it. It is beyond frustrating. I have basically spent the past 6 years of my life inside, self-isolating. With the worsening of my condition, I have lost a lot of my fun in life.
I find it interesting that nobody on this sub ever talks about things like that. Why not? Do other blind people simply not suffer from any such problems? I find it quite unfortunate because, like I said, these problems can be even tougher to handle than the lack of eyesight. I'm sure it would be enriching to hear that we're not alone with struggles like these!
OldManOnFire 25 points 1y ago
I think your first question is inaccurate. We *do* discuss the emotional aspects of blindness here quite often. We talk about not being believed, not fitting in, not feeling useful, not being treated with respect, and the silly way our own family members sometimes behave. We talk about the switch from everybody depending on you to you depending on everybody else and the loss of independence. We talk about the boredom, the grief, and the frustration.
But we also talk about decorating our white canes, about dating, about music and coding and screen reading software and whether a company's efforts at inclusion are helpful or just virtue signalling.
We talk about the blind experience. The good, the bad, the unexpected, the funny, and the tragic. Look at the last 90 days of r/blind and you'll find it all.
Is there something you'd like to talk about that you feel we're avoiding?
But we also talk about decorating our white canes, about dating, about music and coding and screen reading software and whether a company's efforts at inclusion are helpful or just virtue signalling.
We talk about the blind experience. The good, the bad, the unexpected, the funny, and the tragic. Look at the last 90 days of r/blind and you'll find it all.
Is there something you'd like to talk about that you feel we're avoiding?
Arcane_Panacea [OP] 3 points 1y ago
Yes, that's true, the emotional affects are discussed here. Not quite as much as I'd like them to be but they are, so I will concede this point to you.
Like I tried to explain in my question, I feel what's being avoided here are the various struggles that come from having a visual disability but are **not** directly related to vision loss. Not being able to use your eyes is one thing but sometimes, the "side effects" of this disability can be even worse or more frustrating to deal with. There are times when I deal with chronic pain. Or the fact I have spent a good part of my life in hospitals and/or recovering from extremely scary and stressful surgeries. I've experienced levels of pain that few able-bodied people will ever experience in their life. I have spent years virtually unable to work or do anything productive because of the harrowing side effects of medications I had to take for my eyes. But there's also things like the eyedrop issue I described in my question details. This is not something I struggle with because I'm blind BUT it is related to the same condition that made me go blind. Do you understand what I mean?
Also, "avoid" is maybe the wrong term to use; I'm not here to accuse anyone of deliberately sweeping certain topics under a rug. I don't believe this is being done out of malice. I have simply noticed that people on this subreddit don't talk about these things and it made me wonder why. Maybe other blind people have no eye problems aside from being blind. Maybe I'm an exception. That would definitely suck but I'd like to find out.
Like I tried to explain in my question, I feel what's being avoided here are the various struggles that come from having a visual disability but are **not** directly related to vision loss. Not being able to use your eyes is one thing but sometimes, the "side effects" of this disability can be even worse or more frustrating to deal with. There are times when I deal with chronic pain. Or the fact I have spent a good part of my life in hospitals and/or recovering from extremely scary and stressful surgeries. I've experienced levels of pain that few able-bodied people will ever experience in their life. I have spent years virtually unable to work or do anything productive because of the harrowing side effects of medications I had to take for my eyes. But there's also things like the eyedrop issue I described in my question details. This is not something I struggle with because I'm blind BUT it is related to the same condition that made me go blind. Do you understand what I mean?
Also, "avoid" is maybe the wrong term to use; I'm not here to accuse anyone of deliberately sweeping certain topics under a rug. I don't believe this is being done out of malice. I have simply noticed that people on this subreddit don't talk about these things and it made me wonder why. Maybe other blind people have no eye problems aside from being blind. Maybe I'm an exception. That would definitely suck but I'd like to find out.
OldManOnFire 2 points 1y ago
I think I get what you're saying now. Sorry I missed it earlier.
My eyes start hurting in the evenings, probably from straining all day. My ophthalmologist says it's because they're dry but I think he's wrong. I think my eyes remember what the world used to look like to me and they keep straining to make it look that way again, and by the end of they day they're tired from the effort. It causes a small headache most often and a moderate headache on rare occasions. And yes, I have avoided talking about it.
I haven't talked about that because it's not a big deal to me. A swig of NyQuil and the problem goes away. Not being able to drive? That's a harder one. NyQuil doesn't hand me the keys to my Nissan and guarantee I won't hurt anybody while I drive. That's the one I've written about because that's the one I can't take a Tylenol and make it go away.
You're a strong person to have endured everything you've described. I've had it pretty easy. I don't know why some people have so much more suffering than others. It doesn't seem fair. You might be the only one who has noticed our avoidance of these issues simply because you're suffering through them more than any of us.
I realize it's unrealistic to wish somebody's eyesight would return. Science is getting close but there are still a lot of types of blindness that are incurable and untreatable. But I hope you find comfort. I hope your pain is taken away and your stress decreases. It's hard enough being blind - I hope you can live without discomfort and anxiety.
If you ever need to vent my DMs are always open.
My eyes start hurting in the evenings, probably from straining all day. My ophthalmologist says it's because they're dry but I think he's wrong. I think my eyes remember what the world used to look like to me and they keep straining to make it look that way again, and by the end of they day they're tired from the effort. It causes a small headache most often and a moderate headache on rare occasions. And yes, I have avoided talking about it.
I haven't talked about that because it's not a big deal to me. A swig of NyQuil and the problem goes away. Not being able to drive? That's a harder one. NyQuil doesn't hand me the keys to my Nissan and guarantee I won't hurt anybody while I drive. That's the one I've written about because that's the one I can't take a Tylenol and make it go away.
You're a strong person to have endured everything you've described. I've had it pretty easy. I don't know why some people have so much more suffering than others. It doesn't seem fair. You might be the only one who has noticed our avoidance of these issues simply because you're suffering through them more than any of us.
I realize it's unrealistic to wish somebody's eyesight would return. Science is getting close but there are still a lot of types of blindness that are incurable and untreatable. But I hope you find comfort. I hope your pain is taken away and your stress decreases. It's hard enough being blind - I hope you can live without discomfort and anxiety.
If you ever need to vent my DMs are always open.
RollForParadise 7 points 1y ago
Wow this post really hits home for me! Not only focussing on legal issues, but now having very little vision combined with all of my other problems makes one complicated and shitty situation. And sometimes I really wish I could speak two people in a similar situation as me, but it seems even im at the extreme end of disability on Reddit…
When I was younger I had kind of bad vision but I could still draw and write and take photographs. I could also play on the jungle gym, swim, build snow forts and go to dance parties.
My disease is extremely aggressive, and just in the past four years I have lost almost all vision, become partially paralyzed and need an electric wheelchair, I need a machine to breathe at night and sometimes during the day when my spinal cord gets very bad.
Getting into cars is a nightmare, and heaven for bid if I want to go to a fair or a concert… I need three duffle bags and a nurse accompanying me at all times.
At this point I am glad that my vision was one of the first things to go downhill. It gave me a chance to familiarize myself with the tools and technology to keep me able to socialize on the Internet even though I’ve become more and more isolated. This is not what I want and some days I get so depressed that I don’t really know what to do with myself. But this is life and there’s nothing I can do to change its outcomes.
I’ve stayed fiery and hardheaded all of these years, at first I wanted to be a Broadway performer, and when that didn’t work I was going through to become an animator, my vision said fuck you, so then I studied video game design but then my body shut down step-by-step, now I take it hour by hour and enjoy creative writing and trying to spread awareness about inequality and accessible issues I’ve found in my life both in person and on the Internet!
I’m sorry I think I just needed to vent a little bit, this is such a nice community to help find answers when it comes to finding tools and help for visual problems. But I would like to see this become more of a chat community rather than people coming here looking for us to answer questions about their newest braille pen idea or latest survey or whatever. I like a lot of different things and it is hard to do it without vision or a body, so let’s try to make this community more of what we want to see and less of what the world wants to get from us. Is that a weird way to end this? Probably… I’m tired so it’s time for coffee :-)
When I was younger I had kind of bad vision but I could still draw and write and take photographs. I could also play on the jungle gym, swim, build snow forts and go to dance parties.
My disease is extremely aggressive, and just in the past four years I have lost almost all vision, become partially paralyzed and need an electric wheelchair, I need a machine to breathe at night and sometimes during the day when my spinal cord gets very bad.
Getting into cars is a nightmare, and heaven for bid if I want to go to a fair or a concert… I need three duffle bags and a nurse accompanying me at all times.
At this point I am glad that my vision was one of the first things to go downhill. It gave me a chance to familiarize myself with the tools and technology to keep me able to socialize on the Internet even though I’ve become more and more isolated. This is not what I want and some days I get so depressed that I don’t really know what to do with myself. But this is life and there’s nothing I can do to change its outcomes.
I’ve stayed fiery and hardheaded all of these years, at first I wanted to be a Broadway performer, and when that didn’t work I was going through to become an animator, my vision said fuck you, so then I studied video game design but then my body shut down step-by-step, now I take it hour by hour and enjoy creative writing and trying to spread awareness about inequality and accessible issues I’ve found in my life both in person and on the Internet!
I’m sorry I think I just needed to vent a little bit, this is such a nice community to help find answers when it comes to finding tools and help for visual problems. But I would like to see this become more of a chat community rather than people coming here looking for us to answer questions about their newest braille pen idea or latest survey or whatever. I like a lot of different things and it is hard to do it without vision or a body, so let’s try to make this community more of what we want to see and less of what the world wants to get from us. Is that a weird way to end this? Probably… I’m tired so it’s time for coffee :-)
Arcane_Panacea [OP] 3 points 1y ago
Thank you so, so much for your comment!! I really hope you will see my reply because reading it warmed my heart! I'm so happy and thankful to read about your experiences here. It feels so, so nice to know I'm not alone in this. Especially because some people on this thread were more like: "uhm, I don't get you, we talk about everything here." But we don't! I like this community and I'm not here to bash anyone but I often come here and feel like a lot of the problems I deal with in my daily life are not talked about. Maybe you and I are indeed exceptions... maybe we simply deal with stuff that most other blind/VI folks don't have to deal with.
May I ask what your disease/condition is called? As you were probably able to tell, I'm extremely lucky in that my condition only affects my eyes. I'm particularly lucky because my condition exists in two forms, a "mild" form (not really mild) and an absolutely horrific one. The "mild" form is called aniridia and this is what I suffer from; though I should say that my case is at the extreme end. My situation is worse than most of the other aniridia cases in the world. Aniridia is caused by the mutation of one single gene (Pax6). The more severe form is called WAGR-syndrome and it is caused by the mutation of an entire gene-sequence. This sequence includes the Pax6-gene but it also includes a bunch of other genes. People who suffer from this syndrome usually die in their 20s because the condition is so bad (multi-organ failure).
Knowing this, I cherish every day where I can walk, talk and do "normal" things like that. I live in a very deliberate, conscious way if that makes sense. But despite the fact that I "only" suffer from aniridia, my body is still affected in various other ways. For example the strong glaucoma medications that I've had to take during the past 5-6 years have permanently screwed up my body, especially my digestion tract. My doctors told me I'd be fine once I'm off those drugs but even now that I don't have to take them anymore, I suffer from stomach cramps, diarrhea etc. When I was a teenager, I was so fit and healthy. Only 15 years and I feel so frail... far too frail for my current age. I feel lke I'm freaking 80 sometimes and it sucks.
I couldn't agree more with the point you raised at the end of your comment! This subreddit has so many company/product related discussions and it annoys the hell out of me. No, I don't want to participate in your survey, no I don't care about your latest accessibility gadget that's really just the prototype of a prototype ugh. I totally agree with you, I wish this community was a little more like a self-help community. I'm from Switzerland and sadly, these self-help communities don't really exist here because the population is simply too small. There are a few offline communities but it's basically a handful of 80-year olds. That's partially why I come here. I enjoy talking to other people around my age. And again, I'm really glad you wrote this comment. It makes me feel less alone. I can identify so much with so many of the things you've said. I originally wanted to become an architect but that didn't work because of my eyesight. Then I really got into the idea of becoming a TV host; you know like a news reporter or something like that. But everyone in my social environment told me to quit making up castles in the sky. People said: "No offense but with the way your eye look, nobody will put you in front of a camera." I don't know if they were right or not... at least it was enough to discourage me. Finally, I found my absolute dream job. I wanted to become a teacher or a university lecturer. This was around the same time I began my studies, so I planned my whole future career with the assumption that one day I would be able to teach. But meanwhile, my eyesight is so bad that this is no longer possible. How would I even write things on the blackboard or see students when they raise their hand. How would I correct exams etc. etc. Having to accept I can't be a teacher is absolutely devastating. Now I only have one big passion left and that's creative writing (just like you :-)). Unfortunately, creative writing doesn't earn you enough to make ends meet... at least not during the first couple of years. So I have no idea what I want to do with my life at this point. The government just informed me they won't pay be any disability benefits anymore starting from next year because my studies have taken too long. Of course my studies have taken too long because of my disability, all the surgeries etc. but they don't give a shit about that. So now I'm financially dependent on my parents again and it absolutely sucks. I need to finish my studies as fast as possible and fine some sort of job, even if it's something I don't even care about. Sometimes I've got this fantasy where I win the lottery and have enough money to not worry about it anymore. Then I buy a house in Greece or Italy at the sea, with some olive trees in the backyard and spend my time writing novels.
Anyway... I'm sorry this became kinda long. I wish you all the very, very best for the future, I really do. You sound like a great person :-)
May I ask what your disease/condition is called? As you were probably able to tell, I'm extremely lucky in that my condition only affects my eyes. I'm particularly lucky because my condition exists in two forms, a "mild" form (not really mild) and an absolutely horrific one. The "mild" form is called aniridia and this is what I suffer from; though I should say that my case is at the extreme end. My situation is worse than most of the other aniridia cases in the world. Aniridia is caused by the mutation of one single gene (Pax6). The more severe form is called WAGR-syndrome and it is caused by the mutation of an entire gene-sequence. This sequence includes the Pax6-gene but it also includes a bunch of other genes. People who suffer from this syndrome usually die in their 20s because the condition is so bad (multi-organ failure).
Knowing this, I cherish every day where I can walk, talk and do "normal" things like that. I live in a very deliberate, conscious way if that makes sense. But despite the fact that I "only" suffer from aniridia, my body is still affected in various other ways. For example the strong glaucoma medications that I've had to take during the past 5-6 years have permanently screwed up my body, especially my digestion tract. My doctors told me I'd be fine once I'm off those drugs but even now that I don't have to take them anymore, I suffer from stomach cramps, diarrhea etc. When I was a teenager, I was so fit and healthy. Only 15 years and I feel so frail... far too frail for my current age. I feel lke I'm freaking 80 sometimes and it sucks.
I couldn't agree more with the point you raised at the end of your comment! This subreddit has so many company/product related discussions and it annoys the hell out of me. No, I don't want to participate in your survey, no I don't care about your latest accessibility gadget that's really just the prototype of a prototype ugh. I totally agree with you, I wish this community was a little more like a self-help community. I'm from Switzerland and sadly, these self-help communities don't really exist here because the population is simply too small. There are a few offline communities but it's basically a handful of 80-year olds. That's partially why I come here. I enjoy talking to other people around my age. And again, I'm really glad you wrote this comment. It makes me feel less alone. I can identify so much with so many of the things you've said. I originally wanted to become an architect but that didn't work because of my eyesight. Then I really got into the idea of becoming a TV host; you know like a news reporter or something like that. But everyone in my social environment told me to quit making up castles in the sky. People said: "No offense but with the way your eye look, nobody will put you in front of a camera." I don't know if they were right or not... at least it was enough to discourage me. Finally, I found my absolute dream job. I wanted to become a teacher or a university lecturer. This was around the same time I began my studies, so I planned my whole future career with the assumption that one day I would be able to teach. But meanwhile, my eyesight is so bad that this is no longer possible. How would I even write things on the blackboard or see students when they raise their hand. How would I correct exams etc. etc. Having to accept I can't be a teacher is absolutely devastating. Now I only have one big passion left and that's creative writing (just like you :-)). Unfortunately, creative writing doesn't earn you enough to make ends meet... at least not during the first couple of years. So I have no idea what I want to do with my life at this point. The government just informed me they won't pay be any disability benefits anymore starting from next year because my studies have taken too long. Of course my studies have taken too long because of my disability, all the surgeries etc. but they don't give a shit about that. So now I'm financially dependent on my parents again and it absolutely sucks. I need to finish my studies as fast as possible and fine some sort of job, even if it's something I don't even care about. Sometimes I've got this fantasy where I win the lottery and have enough money to not worry about it anymore. Then I buy a house in Greece or Italy at the sea, with some olive trees in the backyard and spend my time writing novels.
Anyway... I'm sorry this became kinda long. I wish you all the very, very best for the future, I really do. You sound like a great person :-)
oldfogey12345 2 points 1y ago
Yes, vision loss really messes with your head. One day OP will read a story like yours and be uplifted because people have worse existences.
It just makes you feel less alone. It's just an emotion from a mentally damaged person.
Thank you for sharing and I wish you the best
It just makes you feel less alone. It's just an emotion from a mentally damaged person.
Thank you for sharing and I wish you the best
Arcane_Panacea [OP] 4 points 1y ago
I totally agree that vision loss messes with your head. I've experienced it for my entire life. Since age 4 or 5 I've been feeling as though I was suffering from cancer or something like that. I always knew it's going to end sooner or later but I couldn't do anything about it.
But aside from vision loss, visual diseases also cause a lot of other problems. Well, at least that's the case for me. And that's why I asked this question. Having to accept you can't do your favorite hobby anymore, or finish your studies or even something small like you can't see your S.O.'s smile anymore absolutely sucks. But what sucks EVEN MORE than this is when you don't get to mourn over these losses properly because you're also constantly in pain or you need to take medications that permanently destroy your body and shit like that. The reason I was so unproductive during the past 6 years is partially my vision loss. Being depressed and stuff like that. But partially it's also the indirect stress that's related with losing your eyesight. For example there were phases where I had hospital appointments 2-3 times PER WEEK. How on Earth am I supposed to do anything if I have to go to the eye doctor/hospital all the freaking time and spend a significant portion of my day taking eye drops?? Even now that I'm doing better again, I spend roughly 2.5 hours every single day taking eyedrops. This is time that able-bodied people can use in better ways... rest, work etc. Sometimes it really sucks when my wife goes to sleep and literally all she needs to do is brush her teeth and wash her face. She kisses me goodnight and I know that - no matter how tired I am - I mustn't go to sleep yet because first I need to go through a little eyedrop-Odyssey. These are things that aren't really discussed on this subreddit and I wish they were.
But aside from vision loss, visual diseases also cause a lot of other problems. Well, at least that's the case for me. And that's why I asked this question. Having to accept you can't do your favorite hobby anymore, or finish your studies or even something small like you can't see your S.O.'s smile anymore absolutely sucks. But what sucks EVEN MORE than this is when you don't get to mourn over these losses properly because you're also constantly in pain or you need to take medications that permanently destroy your body and shit like that. The reason I was so unproductive during the past 6 years is partially my vision loss. Being depressed and stuff like that. But partially it's also the indirect stress that's related with losing your eyesight. For example there were phases where I had hospital appointments 2-3 times PER WEEK. How on Earth am I supposed to do anything if I have to go to the eye doctor/hospital all the freaking time and spend a significant portion of my day taking eye drops?? Even now that I'm doing better again, I spend roughly 2.5 hours every single day taking eyedrops. This is time that able-bodied people can use in better ways... rest, work etc. Sometimes it really sucks when my wife goes to sleep and literally all she needs to do is brush her teeth and wash her face. She kisses me goodnight and I know that - no matter how tired I am - I mustn't go to sleep yet because first I need to go through a little eyedrop-Odyssey. These are things that aren't really discussed on this subreddit and I wish they were.
carolineecouture 6 points 1y ago
OP, it is hard. VI and blindness are not for the faint of heart. Lots of what I go through is like boiling a frog; things are getting worse relatively slowly, but I know if I live long enough, I'm likely to end up with very limited or no usable vision. Like you, it could also go very bad very quickly too.
Do I wish this wasn't so? Yeah, I do. And I also know it's who I am and what's helped make me who I am today. That person has good days and bad days.
We are here for each other. Be well.
Do I wish this wasn't so? Yeah, I do. And I also know it's who I am and what's helped make me who I am today. That person has good days and bad days.
We are here for each other. Be well.
Arcane_Panacea [OP] 3 points 1y ago
Thank you, I appreciate your answer. Do you experience any physical pain? Or side effects from medication? Anything that's related to your condition but has nothing directly to do with your vision loss? I'm curious because I feel like these are things that aren't discussed here and I wonder why. I'm not trying to downplay the other struggles. Of course going blind totally sucks, too. I'm just curious whether that immediate problem, your condition causes you other problems because it is that way for me.
carolineecouture 2 points 1y ago
My physical discomfort is minimal. That's one reason why I take so many eye drops to prevent discomfort. I do have dry eye, but that's managed with over-the-counter drops. I'm sure dealing with physical pain and emotional pain takes a toll. I'm sure people try to deny/minimize your pain just like they do with vision issues. While I don't have pain like that (yet) I can sure understand how isolating it can be. Be well.
bradley22 6 points 1y ago
I don’t have conditions like that and it sounds really rough but the doctor I’ve seen does think I have anxiety.
You’re not alone in the sense that people may have other conditions apart from blindness.
You’re not alone in the sense that people may have other conditions apart from blindness.
Arcane_Panacea [OP] 3 points 1y ago
Thank you, I appreciate your answer.
bradley22 2 points 1y ago
No problem.
YALLWOLF 6 points 1y ago
I am going blind and the mental obstacles are a lot harder to hurdle than the physical ones.
MostlyBlindGamer 5 points 1y ago
My first post here was about carrying eye drops and I got suggestions from people who travel on RVs to keep theirs frozen.
We talk about that and all sorts of things, around here.
We talk about that and all sorts of things, around here.
QuentinJamesP89 3 points 1y ago
Your story is quite similar to my own. I was born with a rare genetic eye condition and low vision and have been blind in one eye most of my life. At age 32 I'm already pushing 30 eye surgeries. The fluctuations in vision, the discomfort and pain, and the anxiety of undergoing different procedures and not knowing what the outcome will be is very difficult. Not to mention the financial costs of all the surgeries, check ups, and medications, and the time commitment and inconvenience to my family of traveling nine hours every few months to see my specialist. What you mentioned about there being tons of things you couldn't do also resonated with me. Growing up there were many things I wasn't allowed to do that friends and siblings did, because of my high risk of retinal detachment.
Though I've never been able to drive I, too, used to be able to bike places and function okay despite my poor eyesight. Last year my vision loss progressed pretty drastically and I crossed the line between functioning well with what vision I had, to barely being able to see, needing to use a cane, braille, etc
Still more emotionally devastating is the fact that I've passed this condition on to my newborn son (we just found out and it's extremely painful for me to think about).
Though I've never been able to drive I, too, used to be able to bike places and function okay despite my poor eyesight. Last year my vision loss progressed pretty drastically and I crossed the line between functioning well with what vision I had, to barely being able to see, needing to use a cane, braille, etc
Still more emotionally devastating is the fact that I've passed this condition on to my newborn son (we just found out and it's extremely painful for me to think about).
Arcane_Panacea [OP] 3 points 1y ago
Thank you so, so much for this comment!! I've read through all the responses to my post now and unfortunately, most didn't get me. They were all kind and stuff but most people here don't seem to get what I mean. They keep looping back to "yeah I know, vision loss is really tough" but that's not what I'm talking about. So I didn't feel very understood.
There are, however, two people that I feel extremely understood by and one of them is you. So, I really appreciate you having written this comment because it makes me feel less alone!!
Your situation does indeed sound very similar to mine. May I ask what your condition is called? I suffer from Aniridia, which is also a rare, genetic disease. It can be passed on but in my case it was caused by spontaneous mutation. Aniridia is made up of a whole bunch of medical issues that affect virtually every part of the eye. This is partially why I've had to undergo so many surgeries in my life. As soon as one thing was fixed, another thing was making problems again. My eyes are a construction site that never ends and the costs are astronomical by now.
I can relate to everything you've said, especially the inconveniences that we have to endure due to our disability. Fortunately, my specialists (I've got a bunch of them) are much closer but I also have to visit them more frequently. At the moment it's beaable but during the past 6 years, I've had phases where I had to go to the hospital or the specialist's office literally 3 times per week (especially after surgeries). How on Earth am I supposed to live any sort of normal life if I spend so much time traveling to hospital and doctor appointments? Let alone the fact that taking eyedrops also wastes a ton of time. These days, I need roughly 2.5 hours every single day to take all of my eyedrops (some take longer than others). These are things that have nothing directly to do with vision loss but they are still related to being disabled and I wish they'd be discussed more on this sub!
Lastly, I need to say a word regarding your baby son. Congrats for the baby and I'm really, really sorry that you passed on your condition to him. I can 100% feel your pain, frustration and worries because I'm in a somewhat similar situation. While I'm not a father yet, I'm now 33 and thus at an age where it's getting time to have my first child. My wife is 32 and I fear that if we keep waiting for too long, it will eventually be too late. I've been wanting to have a child for a very long time but my wife is super worried. She fears that I won't be able to take care of it because of my disability and that, because of this, she will have to do everything on her own. I've been trying to tell her she shouldn't worry about it and that I will help in whatever capacity I can but she's still very scared. She and I are also both very scared about passing on my condition. My wife is completely healthy but aniridia is genetically dominant (and I have a particularly aggressive/severe version of it). I can't imagine seeing my child having to go through exactly the same misery that I've had to go through. At least my parents had no idea but I can't use this excuse. My doctors told me that the chance of passing on my disease is 50%. Obviously, this raises the question of what my wife and I should do now. We have considered pre-implantation diagnosis but it's not realistic. We went to a couple of appointments and they told us it would cost around USD $30,000 per child (maybe even more). Insurance companies don't cover this procedure in our country and we don't have this kind of money. The whole process of pre-implantation diagnosis (plus artificial fertilization) also takes multiple years and when they explained it to us, it sounded extremely exhausting and stressful. So, this leaves us with only two options and neither is great. Either we decide to remain childless and if we do so... this will be incredibly difficult for me. It has always been a huge dream of mine to become a father. Or we decide to go the natural way and have an abortion if the check-up during the first trimester finds that the child does in fact suffer from the same conditon. But although my wife said she'd be willing to go through an abortion, I think I would feel super guilty towards her. I'd feel as though I was forcing her to go through the abortion. Sometimes, in very dark hours, I wonder if my wife ever thinks: "ugh, this is so frustrating, I should've just married an able-bodied guy, it would all be so much easier." It would break my heart if she really thought this but at the same time... I also couldn't really blame her. I mean, this disability does make our lives a hell of a lot harder than they could be.
Anyway, thank you again so much for your comment. It really made me feel better!!
There are, however, two people that I feel extremely understood by and one of them is you. So, I really appreciate you having written this comment because it makes me feel less alone!!
Your situation does indeed sound very similar to mine. May I ask what your condition is called? I suffer from Aniridia, which is also a rare, genetic disease. It can be passed on but in my case it was caused by spontaneous mutation. Aniridia is made up of a whole bunch of medical issues that affect virtually every part of the eye. This is partially why I've had to undergo so many surgeries in my life. As soon as one thing was fixed, another thing was making problems again. My eyes are a construction site that never ends and the costs are astronomical by now.
I can relate to everything you've said, especially the inconveniences that we have to endure due to our disability. Fortunately, my specialists (I've got a bunch of them) are much closer but I also have to visit them more frequently. At the moment it's beaable but during the past 6 years, I've had phases where I had to go to the hospital or the specialist's office literally 3 times per week (especially after surgeries). How on Earth am I supposed to live any sort of normal life if I spend so much time traveling to hospital and doctor appointments? Let alone the fact that taking eyedrops also wastes a ton of time. These days, I need roughly 2.5 hours every single day to take all of my eyedrops (some take longer than others). These are things that have nothing directly to do with vision loss but they are still related to being disabled and I wish they'd be discussed more on this sub!
Lastly, I need to say a word regarding your baby son. Congrats for the baby and I'm really, really sorry that you passed on your condition to him. I can 100% feel your pain, frustration and worries because I'm in a somewhat similar situation. While I'm not a father yet, I'm now 33 and thus at an age where it's getting time to have my first child. My wife is 32 and I fear that if we keep waiting for too long, it will eventually be too late. I've been wanting to have a child for a very long time but my wife is super worried. She fears that I won't be able to take care of it because of my disability and that, because of this, she will have to do everything on her own. I've been trying to tell her she shouldn't worry about it and that I will help in whatever capacity I can but she's still very scared. She and I are also both very scared about passing on my condition. My wife is completely healthy but aniridia is genetically dominant (and I have a particularly aggressive/severe version of it). I can't imagine seeing my child having to go through exactly the same misery that I've had to go through. At least my parents had no idea but I can't use this excuse. My doctors told me that the chance of passing on my disease is 50%. Obviously, this raises the question of what my wife and I should do now. We have considered pre-implantation diagnosis but it's not realistic. We went to a couple of appointments and they told us it would cost around USD $30,000 per child (maybe even more). Insurance companies don't cover this procedure in our country and we don't have this kind of money. The whole process of pre-implantation diagnosis (plus artificial fertilization) also takes multiple years and when they explained it to us, it sounded extremely exhausting and stressful. So, this leaves us with only two options and neither is great. Either we decide to remain childless and if we do so... this will be incredibly difficult for me. It has always been a huge dream of mine to become a father. Or we decide to go the natural way and have an abortion if the check-up during the first trimester finds that the child does in fact suffer from the same conditon. But although my wife said she'd be willing to go through an abortion, I think I would feel super guilty towards her. I'd feel as though I was forcing her to go through the abortion. Sometimes, in very dark hours, I wonder if my wife ever thinks: "ugh, this is so frustrating, I should've just married an able-bodied guy, it would all be so much easier." It would break my heart if she really thought this but at the same time... I also couldn't really blame her. I mean, this disability does make our lives a hell of a lot harder than they could be.
Anyway, thank you again so much for your comment. It really made me feel better!!
QuentinJamesP89 1 points 1y ago
I've had many, many different procedures on my eyes, and it feels like one thing just leads to another, like cataracts probably a result of my last vitrectomy with the use of silicone oil after a detachment (now I need cataract surgery on my "good" eye, which is kind of terrifying), secondary glaucoma etc.
I agree; it's very true that everyone seems to focus on the vision loss itself, but the pain and inconvenience of having ongoing eye issues is often overlooked and it's just as big a deal in many cases.
I can certainly relate to the feelings of doubt and inadequacy; much as she protests, I very often wonder if my wife wishes she had married someone else and chosen an easier life for herself. Many times we go out for check ups or procedures we're not even sure how long I need to take off work or book a hotel because we don't know what they'll find or what will need to be done and how long we'll need to stay for follow ups etc. I also hate that my wife has to drive me all that way. Now there will be two of us who need to be seen. I feel very deeply the burden of having to inconvenience her with so many things that I wish I could take off her plate; I do my best to do what I can to offset all the extra work and driving she has to do. Hard as it is for me, it's not easy for her either.
As far as having children, our first child doesn't have it, for which we're very thankful. We always knew the risks, and it's a very difficult decision, but we leave it in God's hands, as did my family before me (my father has this same condition, so they had to consider this as well). And at the end of the day, difficult as it is living with an eye condition like this, I would certainly not rather have not been born. But I can for sure understand the fear and guilt surrounding the decision whether to have children, and it's a very hard one.
Thanks for sharing. I feel the same way...it's incredibly helpful to know you're not alone and talk to others going through similar things. Even though on the outside I'm technically moving on with my life, and getting training, all of this weighs on my mind and emotions almost constantly and that's something many people don't really understand. All the best to you and your family.
I agree; it's very true that everyone seems to focus on the vision loss itself, but the pain and inconvenience of having ongoing eye issues is often overlooked and it's just as big a deal in many cases.
I can certainly relate to the feelings of doubt and inadequacy; much as she protests, I very often wonder if my wife wishes she had married someone else and chosen an easier life for herself. Many times we go out for check ups or procedures we're not even sure how long I need to take off work or book a hotel because we don't know what they'll find or what will need to be done and how long we'll need to stay for follow ups etc. I also hate that my wife has to drive me all that way. Now there will be two of us who need to be seen. I feel very deeply the burden of having to inconvenience her with so many things that I wish I could take off her plate; I do my best to do what I can to offset all the extra work and driving she has to do. Hard as it is for me, it's not easy for her either.
As far as having children, our first child doesn't have it, for which we're very thankful. We always knew the risks, and it's a very difficult decision, but we leave it in God's hands, as did my family before me (my father has this same condition, so they had to consider this as well). And at the end of the day, difficult as it is living with an eye condition like this, I would certainly not rather have not been born. But I can for sure understand the fear and guilt surrounding the decision whether to have children, and it's a very hard one.
Thanks for sharing. I feel the same way...it's incredibly helpful to know you're not alone and talk to others going through similar things. Even though on the outside I'm technically moving on with my life, and getting training, all of this weighs on my mind and emotions almost constantly and that's something many people don't really understand. All the best to you and your family.
oldfogey12345 3 points 1y ago
There is just nothing positive about losing sight. If I am perfectly honest, I envy you for being able to tour places just by getting refrigerated eye drops.
When I was young I lacked the money to tour Europe. Now I have the funds and may go anyway, but it will be just sounds and smells.
You are not alone, but that level of grief is an extremely personal process.
Also, there are plenty of people on here who have been blind sense birth.
They are generally very good people. You want some info on braille or adaptive tech? They will be more than happy to give you reliable info.
They just can't conceptualize what you are losing because they never had it to begin with.
You want some truth? Your life is going to get worse and worse over the next decade or so. You will look back on the day where you only needed frozen eye drops and yearn for it.
You will hear about people dying from cancer and wish your life was so simple
You will come out the other side though. It's just gonna be a hell of a trip.
When I was young I lacked the money to tour Europe. Now I have the funds and may go anyway, but it will be just sounds and smells.
You are not alone, but that level of grief is an extremely personal process.
Also, there are plenty of people on here who have been blind sense birth.
They are generally very good people. You want some info on braille or adaptive tech? They will be more than happy to give you reliable info.
They just can't conceptualize what you are losing because they never had it to begin with.
You want some truth? Your life is going to get worse and worse over the next decade or so. You will look back on the day where you only needed frozen eye drops and yearn for it.
You will hear about people dying from cancer and wish your life was so simple
You will come out the other side though. It's just gonna be a hell of a trip.
Arcane_Panacea [OP] 2 points 1y ago
I wasn't sure if I should even reply to your comment because I don't think you were compassionate or understanding when you wrote it. But I'll have a go anyway.
The eyedrops were only one example of something that is very frustrating about my disability and is not directly related to vision loss. Sadly, you and many others on this thread didn't get my main point. Yes, vision loss sucks like hell. Nobody needs to tell me this, I've been experiencing it for my entire life. I've been busy grieving over my constant loss of vision all my life. Every time I got 2-3 years of stability and had the chance to emotionally accept the new situation, it would then start to go downhill again.
But that's NOT the point of my post. The point of my post is that ASIDE from vision loss, there are struggles related to being blind or VI that suck just as much or (in my case) EVEN MORE. The eyedrops were one example for this. I gave other examples in my post, though. For example I have spent a significant portion of my life in hospitals and undergoing surgery. When other kids or teenagers were outside playing, I was at home in agonizing pain, trying to recover from my latest surgery. I could also mention how the glaucoma medications I've had to take during the past 6 years have completely destroyed my body. Their side effects were so bad that I was struggling with various bodily issues that are not directly related to my eyes but still related to my overall visual condition because without it, I wouldn't have had to take those drugs of course. I'm talking excruciating stomach cramps, severe diarrhea, dizziness, constant fatigue, muscle aches, erectile dysfunction etc. etc.
My point is that going blind is more than simply losing your eyesight and getting depressed over that particular fact. It is also chronic pain, trillions of doctor appointments, spending a significant portion of one's day taking various eyedrops and many other things like that. Maybe not everyone is affected by this and it surely sounds like you aren't - but I felt like there must be a few others who go through the same misery. That is why I asked this question.
As for traveling: just to give you the full context, I don't have much money either. I'm from Switzerland where the concept of disability benefits like they exist in the US or other developed countries doesn't exist. In Switzerland, it is basically an insurance company and because it's an insurance, they try to get out of paying disability benefits whenever they can. Just a few weeks ago I received a letter that, starting from January, I will not receive any benefits anymore because my studies have taken too long. Nevermind the fact my studies took too long because of my vision loss and all the surgeries I had to go through. How can you finish your studies if you constantly need to interrupt them for a couple of months? But of course they don't give a shit about that. So now at age 30+, I will be financially dependent on my parents again and I can assure you it sucks like hell. I love traveling and it is a great hobby of mine but it's not like I'm touring the world nonstop. My struggles are definitely bigger than carrying around frozen eyedrops.
Oh and just as a last point: I don't want to know about braille or some accessibility tech. I also don't want to participate in stupid surveys which are constantly posted on this sub by some company. I don't want to know about the prototype of some new, probably unnecessary tech gadget. I'd much rather this community was a little more self-help oriented. I understand that questions related to this are also asked and discussed here but only ones that directly relate to vision loss. But, like I said, being disabled is more than just losing your eyesight. At least for SOME of us.
The eyedrops were only one example of something that is very frustrating about my disability and is not directly related to vision loss. Sadly, you and many others on this thread didn't get my main point. Yes, vision loss sucks like hell. Nobody needs to tell me this, I've been experiencing it for my entire life. I've been busy grieving over my constant loss of vision all my life. Every time I got 2-3 years of stability and had the chance to emotionally accept the new situation, it would then start to go downhill again.
But that's NOT the point of my post. The point of my post is that ASIDE from vision loss, there are struggles related to being blind or VI that suck just as much or (in my case) EVEN MORE. The eyedrops were one example for this. I gave other examples in my post, though. For example I have spent a significant portion of my life in hospitals and undergoing surgery. When other kids or teenagers were outside playing, I was at home in agonizing pain, trying to recover from my latest surgery. I could also mention how the glaucoma medications I've had to take during the past 6 years have completely destroyed my body. Their side effects were so bad that I was struggling with various bodily issues that are not directly related to my eyes but still related to my overall visual condition because without it, I wouldn't have had to take those drugs of course. I'm talking excruciating stomach cramps, severe diarrhea, dizziness, constant fatigue, muscle aches, erectile dysfunction etc. etc.
My point is that going blind is more than simply losing your eyesight and getting depressed over that particular fact. It is also chronic pain, trillions of doctor appointments, spending a significant portion of one's day taking various eyedrops and many other things like that. Maybe not everyone is affected by this and it surely sounds like you aren't - but I felt like there must be a few others who go through the same misery. That is why I asked this question.
As for traveling: just to give you the full context, I don't have much money either. I'm from Switzerland where the concept of disability benefits like they exist in the US or other developed countries doesn't exist. In Switzerland, it is basically an insurance company and because it's an insurance, they try to get out of paying disability benefits whenever they can. Just a few weeks ago I received a letter that, starting from January, I will not receive any benefits anymore because my studies have taken too long. Nevermind the fact my studies took too long because of my vision loss and all the surgeries I had to go through. How can you finish your studies if you constantly need to interrupt them for a couple of months? But of course they don't give a shit about that. So now at age 30+, I will be financially dependent on my parents again and I can assure you it sucks like hell. I love traveling and it is a great hobby of mine but it's not like I'm touring the world nonstop. My struggles are definitely bigger than carrying around frozen eyedrops.
Oh and just as a last point: I don't want to know about braille or some accessibility tech. I also don't want to participate in stupid surveys which are constantly posted on this sub by some company. I don't want to know about the prototype of some new, probably unnecessary tech gadget. I'd much rather this community was a little more self-help oriented. I understand that questions related to this are also asked and discussed here but only ones that directly relate to vision loss. But, like I said, being disabled is more than just losing your eyesight. At least for SOME of us.
zersiax 3 points 1y ago
That does sound rough, OP. I know of very similar cases that opted for prosthetic eyes in similar situations, for pretty much the exact reasons you state here: Having to deal with those is not exactly pleasant either I hear, but this sounds magnitudes worse. I don't know to what degree it would help or be an option , but might be something to consider if you haven't already.
Arcane_Panacea [OP] 2 points 1y ago
Thank you for your comment. Yes, I have already considered it. In fact, there was a doctor who recommended the removal of my real eyes to me. The problem is that I still have eyesight left on one eye. It's not much but I cherish it immensely. I can see light and colors and even some blurry shapes. I can even read a bit if I make the font really big. If I decided to get prostheses, I would of course lose this. Another reason why I have decided against them for the moment is the fact that some of my doctors believe future medical technology might be able to help me. What I need is an artificial cornea implant but the ones that currently exist don't work for me. It's a bit complicated to explain but essentially I'm dependent on further progress in stem cell medicine. My doctors believe that in roughly 20 years, I might be able to undergo such a surgery and it would triple or even quadruple my current eyesight. This requires my pressure to remain stable and of course it also requires me to keep my natural eyes. So it's a tough dilemma. I really don't want to give up this hope but that means I'll have to leave with my current struggles, chronic pain etc. for another 15-20 years.
If I was old, I'd say screw this but I'm only in my early 30s and in 20 years I'll be in my early 50s. If the technology really comes and I can take advantage of it, there will still be a lot of time to enjoy my increased eyesight, pick up some old hobbies that I can't do anymore now etc. At the same time, I don't actually know if this technology will be developed and how long it will truly take. So, it's a very tricky situation. But for now, I have decided that I want to wait and hope for the best, despite what this means for me at the moment.
If I was old, I'd say screw this but I'm only in my early 30s and in 20 years I'll be in my early 50s. If the technology really comes and I can take advantage of it, there will still be a lot of time to enjoy my increased eyesight, pick up some old hobbies that I can't do anymore now etc. At the same time, I don't actually know if this technology will be developed and how long it will truly take. So, it's a very tricky situation. But for now, I have decided that I want to wait and hope for the best, despite what this means for me at the moment.
FaerilyRowanwind 3 points 1y ago
That sounds really really rough. I have a question. Would inoculation be something that would help you? It sounds very miserable to have those things happen to your eyes.
Miscsubs123 7 points 1y ago
I think you meant to say enucleation.
FaerilyRowanwind 2 points 1y ago
Thank you!
Arcane_Panacea [OP] 2 points 1y ago
Yes, it is absolutely miserable. I have to go through a ton of physical pain. It's not just the pain though. For example during the past 5-6 years, I was virtually unable to be productive in any way because the glaucoma medications I had to take (especially diamox) gave me really bad side effects. I'm talking non-stop diarrhea to the point where I was almost incontinent, stomach cramps, dizziness, constantly wanting to sleep, muscles aches, suicidal thoughts evey day... it felt like being 90... I felt like my body was literally falling apart. It was so, so frustrating. I told my doctors about these things and they told me they were really sorry but for the moment, nothing could be done. Fortunately, I'm now feeling better again because I underwent multiple surgeries and don't have to take those medications anymore. But I feel like the past 5-6 years of my life were basically lost. I don't even remember what exactly happened during this time... it all feels like a haze or a nightmare. So, I've always been wondering if other blind/VI people also go through things like this. Maybe not quite as rough but y'know, something like it.
To answer your question: no inoculation wouldn't help because it's not caused by bacteria. I apologize, my word choice was inaccurate (not a native English speaker), it's not an infection but more like... an irritation? I guess? But it's really bad sometimes. Like, imagine washing your hands with soap a hundred times every day. It's kind of like that but on my eyes. The only thing I can do is take moistorizing eyedrops and, if it becomes really bad, eyedrops that contain cortisone. Sometimes my cornea breaks open and then I need to take eyedrops that contain antibiotics.
Sorry if this was TMI but yeah, it really sucks. Thank you very much for your sweet/compassionate comment though, I really appreciate it.
To answer your question: no inoculation wouldn't help because it's not caused by bacteria. I apologize, my word choice was inaccurate (not a native English speaker), it's not an infection but more like... an irritation? I guess? But it's really bad sometimes. Like, imagine washing your hands with soap a hundred times every day. It's kind of like that but on my eyes. The only thing I can do is take moistorizing eyedrops and, if it becomes really bad, eyedrops that contain cortisone. Sometimes my cornea breaks open and then I need to take eyedrops that contain antibiotics.
Sorry if this was TMI but yeah, it really sucks. Thank you very much for your sweet/compassionate comment though, I really appreciate it.
FaerilyRowanwind 2 points 1y ago
So. You would still have the problems even if they removed your eyes? 😟
oldfogey12345 2 points 1y ago
Not with that level of vision. There may be a time in the future though. That happens when you would rather be out of pain than to see anything
Arcane_Panacea [OP] 2 points 1y ago
Yes, exactly. I had a doctor who suggested taking out my eyes and putting in "glass eyes" (that's what we call them in German). But he told me if I did that, I would of course lose all of my remaining eyesight. And though it is not much that I have left, it is incredibly important to me. I cherish every day where I can see light, enjoy colors etc. My doctors also tell me that in 15-20 years, there might be a new medical technology to give me an artificial cornea (I know they already exist today but an implantation wouldn't work for me with the current technology). So I have chosen to wait and hope. If I somehow manage to keep my eye pressure at an acceptable level and this new implantation/stem cell technology eventually comes around, I might be able to see quite a bit more again. But this means I'll have to deal with this pain until I'm 45 or 50 so... it's a dilemma.
oldfogey12345 2 points 1y ago
That's something we have in common, we have both been to doctors who can't conceptualize how much we use that tiny little bit of vision we have left and how important it is to us.
That little bit of vision is not something to be traded away lightly.
That little bit of vision is not something to be traded away lightly.
bradley22 2 points 1y ago
I jjust reread yoru post and while most of us may no talk about these things, because we don't know about them; that doesn't mean you can't.
Feel free to write as many posts as you like, you may not get many responses but with this being reddit you might, either way; venting is a good thing; it helps people feel heard and understood.
Feel free to write as many posts as you like, you may not get many responses but with this being reddit you might, either way; venting is a good thing; it helps people feel heard and understood.
oldfogey12345 2 points 1y ago
I didn't mean to come off as rude. It wasn't my intention anyway.
Vision loss comes in many different forms and each of those comes with it's own special set of side issues. You and I could talk all night and not say one thing to help the other because our experiences are so different. It's isolating, and a painful side issue on it's own.
Someone could post about their issues, but unless they are in a forum dedicated to their specific condition, they are not likely to find too many people who their message resonates with.
That's why you don't generally see a lot of vision loss created stuff anyway.
Vision loss comes in many different forms and each of those comes with it's own special set of side issues. You and I could talk all night and not say one thing to help the other because our experiences are so different. It's isolating, and a painful side issue on it's own.
Someone could post about their issues, but unless they are in a forum dedicated to their specific condition, they are not likely to find too many people who their message resonates with.
That's why you don't generally see a lot of vision loss created stuff anyway.
mdizak 2 points 1y ago
To be honest, I feel for you. I'm actually quite happy that when I went blind it was just sudden and total blindness. There was no "let's test this and try that with hopes it gets better" bullshit, and instead it was just you're totally blind and have fun with that.I don't really know what to tell you as we all have our own ways of working through these things. One thing I've found that helps me at least is learning history. When I listen to a documentary about the average lives of a soldier in Ancient Rome, it helps me pick myself up and continue pushing forward.
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