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I'm Going Blind and Frankly, I'm Scared (self.Blind)
submitted by Glitterypuns
Hi folks. This is long, and I apologize up front for that.
I'm a 21 year old college student in the States, and yesterday I had a follow up eye doctor appointment from a car accident I was in in May. I had an allergic reaction to the dust in the airbags, and had to follow up.
In my month since my accident, I've drastically been losing peripheral vision--to the point where it makes me terrified to drive at night. I almost hit someone on my way home from work tonight. I run into people at work all the time.
I've also been having a TON of pain and pressure (feels like I have a sinus infection in my eye balls), and it feels like it almost takes my eyes longer to see? Like my reaction times are solid, and I'm okay, but my eyes aren't working.
So my doctor thankfully took all of this super seriously. She did a few tests (field of vision and a glaucoma thing) and says my eye pressure indicates that it's NOT glaucoma. Okay, cool. So she gets the results from my visual field and my eyes are both in the 50% and below range. It was so bad she frankly didn't believe it and wants to see if I can recreate these results.
So then, she decided to dilate my eyes. I've always had not-awesome eyes, so I've been dilated a lot, but she took a LONG time checking out my eyes. She then took me back to get pictures of my optic nerve.
Well--along with my prescription changing drastically in a month (I was -5.75 and -5.50 a month ago and now I'm around a -7/-8) my optic nerve has atrophied a ton. At this point my doctor admits to me that she has no idea what's going on, and wants to refer me to some specialists. I've been playing phone tag with the office of a Neuro Ophthalmologist since then.
I get chronic migraines, and I've been chronically ill for most of my life. I've had doctors tell me they thought I might be having strokes at age 19--but I've never had a doctor be so severe.
My doctor told me that she doesn't know why it's happening, but she firmly believes that if this atrophying keeps happening, I will lose complete and total vision.
I'm independent. I live alone, I have a dog. I have a car that's less than two months old. I work at a job that wouldn't be able to reasonably accommodate me--and I've been planning on staying with company to become a manager. I love my independence because it's allowed me to change my life without relying (read: inconveniencing) anyone.
I know I can still live independently as a person without sight, but I'm still scared. The hardest part is not knowing what is wrong right now, because if it's neuropathic, is it effecting more than my eyes? I can't make a plan, and I'm feeling really out of control of my situation and frankly, terrified.
I'm sorry if this isn't the right place. I've been trying to find blind blogs, or videos (because reading is so hard right now) and there's not a lot.
I'm a 21 year old college student in the States, and yesterday I had a follow up eye doctor appointment from a car accident I was in in May. I had an allergic reaction to the dust in the airbags, and had to follow up.
In my month since my accident, I've drastically been losing peripheral vision--to the point where it makes me terrified to drive at night. I almost hit someone on my way home from work tonight. I run into people at work all the time.
I've also been having a TON of pain and pressure (feels like I have a sinus infection in my eye balls), and it feels like it almost takes my eyes longer to see? Like my reaction times are solid, and I'm okay, but my eyes aren't working.
So my doctor thankfully took all of this super seriously. She did a few tests (field of vision and a glaucoma thing) and says my eye pressure indicates that it's NOT glaucoma. Okay, cool. So she gets the results from my visual field and my eyes are both in the 50% and below range. It was so bad she frankly didn't believe it and wants to see if I can recreate these results.
So then, she decided to dilate my eyes. I've always had not-awesome eyes, so I've been dilated a lot, but she took a LONG time checking out my eyes. She then took me back to get pictures of my optic nerve.
Well--along with my prescription changing drastically in a month (I was -5.75 and -5.50 a month ago and now I'm around a -7/-8) my optic nerve has atrophied a ton. At this point my doctor admits to me that she has no idea what's going on, and wants to refer me to some specialists. I've been playing phone tag with the office of a Neuro Ophthalmologist since then.
I get chronic migraines, and I've been chronically ill for most of my life. I've had doctors tell me they thought I might be having strokes at age 19--but I've never had a doctor be so severe.
My doctor told me that she doesn't know why it's happening, but she firmly believes that if this atrophying keeps happening, I will lose complete and total vision.
I'm independent. I live alone, I have a dog. I have a car that's less than two months old. I work at a job that wouldn't be able to reasonably accommodate me--and I've been planning on staying with company to become a manager. I love my independence because it's allowed me to change my life without relying (read: inconveniencing) anyone.
I know I can still live independently as a person without sight, but I'm still scared. The hardest part is not knowing what is wrong right now, because if it's neuropathic, is it effecting more than my eyes? I can't make a plan, and I'm feeling really out of control of my situation and frankly, terrified.
I'm sorry if this isn't the right place. I've been trying to find blind blogs, or videos (because reading is so hard right now) and there's not a lot.
Amonwilde 9 points 6y ago
Being scared is a normal reaction to a major medical concern, especially if your prognosis is unknown. Obviously keep pursuing the medical angle aggressively and make any catchall health changes that need to be made (stop smoking if you're smoking, exercise if you're pre-diabetic, etc).
In the short term, there are a couple of failure states for you to watch out for. Paralysis or denial can prevent you from getting medical attention, but you seem to be moving quickly on that front. It can also prevent you from learning new ways of doing things if your vision doesn't recover or worsens. Depression about your valid medical concerns can mess up other areas of your life, so watch out for that and keep in touch with friends, family, exercise, and do all the things that will help to maintain your mental health as you work through this.
Two concrete pieces of advice for you right now--that's all I can offer since your situation hasn't stabilized and I have no medical advice for you. First, investigate learning screen reader technology. You mention that reading is difficult for you, and screen readers can be very liberating, allowing you to read (I use that term more generally) more fluidly again. THe easiest to get started with is VoiceOver on iPhone and iPad, but TextAloud on Windows, which is primarily aimed at dyslexic users, is a good entry point for people with substantial vision left, which if you're driving is the case with you. Learning something new will make you feel like you're taking charge of the situation and will hopefully start to show you that the worse case scenario is survivable.
My other piece of advice is to realize early on if you're unable to continue to safely drive. Many have learned the hard way after being in an accident or worse that they should have given up driving earlier. I'm not saying to stop driving right away, but monitor your ability to drive and only drive if you're certain you can. Continuing to drive after you're unable can be a source of lifetime regret in the worse case.
I hope you can find a diagnosis...come back here for more answers or support or reach out to people in the blind community. You can message me if you have questions about screen readers or adaptive technology.
In the short term, there are a couple of failure states for you to watch out for. Paralysis or denial can prevent you from getting medical attention, but you seem to be moving quickly on that front. It can also prevent you from learning new ways of doing things if your vision doesn't recover or worsens. Depression about your valid medical concerns can mess up other areas of your life, so watch out for that and keep in touch with friends, family, exercise, and do all the things that will help to maintain your mental health as you work through this.
Two concrete pieces of advice for you right now--that's all I can offer since your situation hasn't stabilized and I have no medical advice for you. First, investigate learning screen reader technology. You mention that reading is difficult for you, and screen readers can be very liberating, allowing you to read (I use that term more generally) more fluidly again. THe easiest to get started with is VoiceOver on iPhone and iPad, but TextAloud on Windows, which is primarily aimed at dyslexic users, is a good entry point for people with substantial vision left, which if you're driving is the case with you. Learning something new will make you feel like you're taking charge of the situation and will hopefully start to show you that the worse case scenario is survivable.
My other piece of advice is to realize early on if you're unable to continue to safely drive. Many have learned the hard way after being in an accident or worse that they should have given up driving earlier. I'm not saying to stop driving right away, but monitor your ability to drive and only drive if you're certain you can. Continuing to drive after you're unable can be a source of lifetime regret in the worse case.
I hope you can find a diagnosis...come back here for more answers or support or reach out to people in the blind community. You can message me if you have questions about screen readers or adaptive technology.
Glitterypuns [OP] 2 points 6y ago
Thank you so much.
I've been playing with voiceover on my iPhone, and it's been helpful! It's hard to get used to, but oh well.
I'm definitely keeping a close eye on my driving. I've stopped at night, unless I'm coming home from work. I don't want to hurt anyone else.
I've been playing with voiceover on my iPhone, and it's been helpful! It's hard to get used to, but oh well.
I'm definitely keeping a close eye on my driving. I've stopped at night, unless I'm coming home from work. I don't want to hurt anyone else.
B-dub31 1 points 6y ago
iPhones have a digital magnifier built in. Once you enable it under the accessibility settings, you triple click the home button to activate it. You can add color filters to increase contrast (I use black background and white text). Comes in handy and while it's not really a replacement for a standalone magnifier, it is nice to use while out and about.
KillerLag 6 points 6y ago
In addition to what /u/amonwilde said regarding driving, also recognize when your peripheral vision has deteroirated to the point where you need to learn travel skills. Talk to your state's blindness agency regarding orientation and mobility training. With pheripheral vision loss, people often find they start clipping their shoulders into walls and poles (and people), or bumping their knees on coffee tables and other low objects, or find they don't knotice until after stepping off curbs and steps.
Also, a lot of people may not want to use a white cane because many people see it as a concrete symbol of something debilitating. I always remind people that a white cane isn't something that prevents you from doing things, it is a tool to merely keep you safe when travelling. It doesn't mean you are unable to do something, it just means you may need to learn new skills to travel and do things slightly differently.
Here is the website for Blind and Vision Rehabilitation Services in Pittsburgh. https://www.bvrspittsburgh.org/
Also, a lot of people may not want to use a white cane because many people see it as a concrete symbol of something debilitating. I always remind people that a white cane isn't something that prevents you from doing things, it is a tool to merely keep you safe when travelling. It doesn't mean you are unable to do something, it just means you may need to learn new skills to travel and do things slightly differently.
Here is the website for Blind and Vision Rehabilitation Services in Pittsburgh. https://www.bvrspittsburgh.org/
Glitterypuns [OP] 1 points 6y ago
Yeah, I run into walls a lot. And tables... and people at work. 🤦🏼♀️
I'm okay with using mobility aids. I'm not afraid of being disabled, but I am worried about HOW to be disabled. I've been making a running list of service dog organizations and just reached out to my university's disability services to see what they have to offer. I'm worried about the fact that I don't have a diagnosis yet, before reaching out to other orgs.
But hank you so much.
I'm okay with using mobility aids. I'm not afraid of being disabled, but I am worried about HOW to be disabled. I've been making a running list of service dog organizations and just reached out to my university's disability services to see what they have to offer. I'm worried about the fact that I don't have a diagnosis yet, before reaching out to other orgs.
But hank you so much.
KillerLag 1 points 6y ago
Not sure whether the organizations require a specific diagnosis. I know mine does require an eye report now, but that is to know generally what the person can and can't see. i've seen a few diagnosis of unknown causes.
Yeah, you want to reduce the likelihood of running into things. Especially coworkers (but even more especially, clients and old people). It doesn't look good and you may end up hurting yourself. Just today, I saw a regular sighted dude run into a pole near a sidewalk :O
For many seeing eye dog orgaizations, the aplication form will have a section an O&M instructor needs to fill out as well. I'm not sure about Australia, but I assume they will likely have similiar things. I have heard of schools where you only need some basics and they will train you the rest for advanced skills, but I don't know which ones (or if they don't do that anymore).
Yeah, you want to reduce the likelihood of running into things. Especially coworkers (but even more especially, clients and old people). It doesn't look good and you may end up hurting yourself. Just today, I saw a regular sighted dude run into a pole near a sidewalk :O
For many seeing eye dog orgaizations, the aplication form will have a section an O&M instructor needs to fill out as well. I'm not sure about Australia, but I assume they will likely have similiar things. I have heard of schools where you only need some basics and they will train you the rest for advanced skills, but I don't know which ones (or if they don't do that anymore).
aleeque 2 points 6y ago
tbh I call bulshit on the "definitely 100% sure not glaucoma" diagnosis. Eye pressure can double or triple at night. Unless that doctor has measured the pressure when you're sleeping she can't know for certain you don't have glaucoma.
Does your eye pain fluctuate a lot during the day in a specific pattern? Because if it does, maybe get a second opinion from a glaucoma specialist, NOT a general ophtalmologist.
Does your eye pain fluctuate a lot during the day in a specific pattern? Because if it does, maybe get a second opinion from a glaucoma specialist, NOT a general ophtalmologist.
Glitterypuns [OP] 1 points 6y ago
I'm seeing another ophthalmologist because my actual doctor feels he might have some ideas, before we go the Neuro path.
I wouldn't say it's a specific pattern, but the pain does fluctuate.
I wouldn't say it's a specific pattern, but the pain does fluctuate.
mermaidinamerica 1 points 6y ago
The way I see it, you have the advantage of time here. A lot of folks are not that fortunate. You're doing the right thing by researching it now. Most states offer services for college students and/or jobseekers and can help you navigate figuring out reasonable accommodations--here in MD it's the division of rehab services (or "DORS"). Are you sure that your current employer would not/could not offer an accommodation? Keep pushing to get in to see a specialist as well. Keep calling every day to check for cancellations. Consider it and early lesson of self-advocacy--you really need to push to have your voice heard. The sooner you know what's happening, the sooner you can accept it, cope, and make a plan. Best of luck to you!
Vicorin 1 points 6y ago
Honestly, you're going to be frustrated as things progress. Lost my sight like 4 years ago in the middle of high school, and that was honestly the worst part. Like you, I really value my independence. There's a bit of a learning curve, and it's not necessarily an easy one. It definitely gets better though, and there's plenty of organizations out there that can help you make the adjustment as seemless as possible.
I'd recommend getting your vision checked, like what you have to do to get a drivers license. It might suck if you need to stop driving, but it's better to be realistic and safe, than harm yourself and/or someone else in a car accident.
As a fellow university student, and someone who's gone through what you're going through, I understand how everything feels. if you need support or someone to talk to, my inbox is open.
best of luck OP.
I'd recommend getting your vision checked, like what you have to do to get a drivers license. It might suck if you need to stop driving, but it's better to be realistic and safe, than harm yourself and/or someone else in a car accident.
As a fellow university student, and someone who's gone through what you're going through, I understand how everything feels. if you need support or someone to talk to, my inbox is open.
best of luck OP.
B-dub31 1 points 6y ago
Being worried and uncertain is a natural reaction. I'm 38 and over the past year, I went from 20/20 both eyes to legally blind due to bilateral optic nerve atrophy. The vision in my left eye is pretty much gone. In my right eye, I have one small patch of good vision. I'm having a hard time coping, not with daily living, but with the emotional aspect. I have a graduate degree and had a career I loved, but I couldn't be accommodated either due to the nature of my job (driving required, needed to read signs at a distance, read detailed diagrams and maps). I can no longer drive either.
Get checked for blood disorders that cause abnormal blood clotting. I have what's called Protien S deficiency. I had a stroke ar 38 despite having good bloodwork. Then in March, I developed a blood clot in my brain. Turns out it is a genetic condition. Gave me blood thinners, and I nearly bled out because of an ulcer. It damaged my right optic nerve.
It sounds like you have a good doctor and definitely see a neurology-opthomologist too. Hopefully, you will get some answers. Be proactive in your care. Reaching out here is a great start. Check and see if there is a local, regional, or state organization for the blind. They are good resources even if you still have sight and the people there will understand your circumstances. Get counseling if you are having trouble coping. I'm not sure what your job is but the state vocational rehab will often help you with training or covering some of the costs of accommodations so you can remain employed.
Get checked for blood disorders that cause abnormal blood clotting. I have what's called Protien S deficiency. I had a stroke ar 38 despite having good bloodwork. Then in March, I developed a blood clot in my brain. Turns out it is a genetic condition. Gave me blood thinners, and I nearly bled out because of an ulcer. It damaged my right optic nerve.
It sounds like you have a good doctor and definitely see a neurology-opthomologist too. Hopefully, you will get some answers. Be proactive in your care. Reaching out here is a great start. Check and see if there is a local, regional, or state organization for the blind. They are good resources even if you still have sight and the people there will understand your circumstances. Get counseling if you are having trouble coping. I'm not sure what your job is but the state vocational rehab will often help you with training or covering some of the costs of accommodations so you can remain employed.
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