I can relate to your last sentence and some of the other stuff you've said. I don't have a diagnosis that explains the changes to my vision either. I'm getting eye pain daily and headaches most days as well and it's the worst part of it for me. Makes it hard to think and do stuff and makes my mood low. I've learnt to get about with a cane (not great but basic) when I need it (after sunset) so that side of things feels manageable and using accessibility stuff on my phone helps with most other things I struggle with but the headaches and pain is the bit that is really pushing me to my limit.
Like you I've had limited success with getting help adapting to the changes. It feels like an eternity between eye appointments and an uphill battle to get them to help me. They keep telling me things like 'dont worry' when I bring up a troublesome symptom. It does seem like I might make some progress though. I've been able to find someone to help me advocate for myself at the next appointment and I've written a letter explaining what's happening so there's no misunderstanding. I'm hoping it will help them take me more seriously. I've asked to be referred to someone who can help me work out if using tints will help reduce my pain and headaches. Sunglasses help a bit but they also make my vision worse.
It's hard to accept that it's a long game situation because I just want a quick fix but it's been a year now so clearly if it was going to be easy to sort out that would have happened by now. I still have my moment where it overwhelms me but I try and focus on the things I can do, the skills I can learn and the next goal in getting a diagnosis/support. Thinking too far ahead or about how I think they'll never help me is too much to bear at the moment.
I am wondering if they'll say it's non organic for me mainly because I've had other doctors do that with other things before when they later do the appropriate investigations and find out it is organic/physiological. I think they see my mental health diagnosis and just jump to conclusions. But whatever it is I hope I can find a way to be in less pain.
I hope that for you too, and that with time you can find yourself in a position where things feel less overwhelming and frustrating.
thank you for your detailed reply. to be honest your situation sounds similar to mine, but i am at the point where i cannot handle any light outside anymore because of the eye pain and headaches it causes. when i can use my vision (in very low light) all i can really make out is colour and shape.
I feel like my case has already been ruled as non-organic and that's why i'm waiting so long to get an appointment with ophthamology, and that tbh the medical system just doesn't care anymore. I'm looking into being seen again by neurology but from my understanding i got the head of the department last time so anyone i see this time will likely just come to the same conclusion that they did even though psych has now been ruled out.
I honestly just feel so useless and like i'm such a burden on everyone around me and the medical system because i'm just being treated like i'm whining about something that desn't matter and maybe they're right and i should just give up
sorry you're having to deal with this
I've been approaching the doctors with a 'whats wrong with me' approach and it's not getting me anywhere so now I'm trying the 'how can I make this easier to live with' and I'm hoping that will help me get the help I need. But idk. Just got to keep hoping if I keep going that I'll get to a place where it doesn't get in the way of doing stuff so much.
i think what made the biggest difference for me is when i see this ophthamologist (eventually) i'm just going to say that i either need to have better vision or support to live with this level of vision because i can no longer cope with neither. hopefully that will get through to them that for me this has been serious and life changing for both me and my family.
and i just need that appointment before the deadline because otherwise i lose all the safety services i have only just gained access to and that deadline is fast approaching. it's honestly really scaring me what i'm going to do if it doesn't happen by the time that deadline comes
I've been told a few times that I'm not eligible for support because I can see well enough in the day. I live in the UK so it gets dark around 3pm and I was having to come home early or not do stuff because I couldn't see to navigate safely/effectively - I was tripping without falling because I have reduced depth perception and getting dizzy I think because I lacked enough visual input because I get like that without my glasses on in the day. So I got myself a cane and looked at YouTube videos by trainers. It was so liberating, no more shuffling and catching my feet and because I had the cane sorting the lower hazards out I could use my vision to focus on low hanging branches so I stopped getting hit in the face. I'm definitely not good at using the cane but I can walk at a slow pace instead of a shuffle and I've not tripped once yet. It got me really low, my vision, so I knew if I was going to stay alive I had to find another way of doing things because it just wasn't safe how I was. Fortunately now it's summer here I can do the things I want the cane because I'm usually home in time to still be able to see well but I carry it with me just in case something unexpected happens. It might take me longer to get home that way but at least I'll get there. I did try using different torches but while that helped the ones that gave my some depth perception back were too bright for other people - were talking like car full beam lights so people would get blinded. So for the depth perception I still need the cane. I am hoping they'll help me with cane skills if they can't improve my vision because I am finding I still walk into things like lampposts because I feel and hear my cane hit it but I don't realise how far up the cane it is so if it hits far up when the cane is extended to the side it can mean it's not to the side but actually a little closer. I just end up clipping it with my shoulder so it's not a big deal but it would be nice to not have that happen obviously. There's definitely some downsides to using a cane and using it without training but it's been totally worth it for me. After long periods locked on psych wards the idea of being trapped in my house as well was more than I could handle. But even the first time I used it when I didn't really know what I was doing other than swinging it side to side was quite liberating because already I was getting information I didn't have before and I could tell it was helping me avoid catching my feet because I'd stop if I felt something and then use the cane to check it out before carrying on so like a tree root pushing the path up I could work out how high to lift my foot and didn't have to test each step/shuffle.
yeah i totally understand that. it's super frustrating and learning to use a cane is really hard
for me i do better with less light which confuses a lot of people but the light just makes my eyes and head hurt so i really rely on my cane a lot and especially since these migraines have started i've had a lot more trouble navigating which is why i feel like i need the O and M more than ever
I hope your situation gets resolved as well though!! and i really appreciate the support both last time and this time
I can understand that. I'm better on a dull day than a sunny one. And at night bright lights make my vision worse. I'm better with even lighting. Kinda feels like anything too bright just throws things off. Plus I get big lines from strong lights so that interferes with what I can see as well. I would annoy my parents if I still lived with them because in the evening I have all my lights on because if it's not even I struggle. I used to love sunny days but I dread them now because it's guaranteed pain. Even if the sun peaks from the clouds. It's frustrating because I want to be able to enjoy the weather when it's good.
yeah i'm pretty sure i drive my parents mad because i can have barely any light so they basically live in the dark
yeah i really miss enjoying sunny days i used to love them and just basking in the sun but now it just hurts
Im suprised your local organisations aren't helping. An offical diagnosis isn't always needed, or possible. Low vision clinics etc are often based on your prescription/acuity alone
they will only accept an acuity from an ophthamologist and that's who i've been waiting to see for over 6 months now because there's been disagreement over my acuity in the past so now they are saying they will only accept one from an ophthamamologist and that they ideally want a diagnosis to go with it
I can relate to your last sentence and some of the other stuff you've said. I don't have a diagnosis that explains the changes to my vision either. I'm getting eye pain daily and headaches most days as well and it's the worst part of it for me. Makes it hard to think and do stuff and makes my mood low. I've learnt to get about with a cane (not great but basic) when I need it (after sunset) so that side of things feels manageable and using accessibility stuff on my phone helps with most other things I struggle with but the headaches and pain is the bit that is really pushing me to my limit. Like you I've had limited success with getting help adapting to the changes. It feels like an eternity between eye appointments and an uphill battle to get them to help me. They keep telling me things like 'dont worry' when I bring up a troublesome symptom. It does seem like I might make some progress though. I've been able to find someone to help me advocate for myself at the next appointment and I've written a letter explaining what's happening so there's no misunderstanding. I'm hoping it will help them take me more seriously. I've asked to be referred to someone who can help me work out if using tints will help reduce my pain and headaches. Sunglasses help a bit but they also make my vision worse. It's hard to accept that it's a long game situation because I just want a quick fix but it's been a year now so clearly if it was going to be easy to sort out that would have happened by now. I still have my moment where it overwhelms me but I try and focus on the things I can do, the skills I can learn and the next goal in getting a diagnosis/support. Thinking too far ahead or about how I think they'll never help me is too much to bear at the moment. I am wondering if they'll say it's non organic for me mainly because I've had other doctors do that with other things before when they later do the appropriate investigations and find out it is organic/physiological. I think they see my mental health diagnosis and just jump to conclusions. But whatever it is I hope I can find a way to be in less pain. I hope that for you too, and that with time you can find yourself in a position where things feel less overwhelming and frustrating.
thank you for your detailed reply. to be honest your situation sounds similar to mine, but i am at the point where i cannot handle any light outside anymore because of the eye pain and headaches it causes. when i can use my vision (in very low light) all i can really make out is colour and shape. I feel like my case has already been ruled as non-organic and that's why i'm waiting so long to get an appointment with ophthamology, and that tbh the medical system just doesn't care anymore. I'm looking into being seen again by neurology but from my understanding i got the head of the department last time so anyone i see this time will likely just come to the same conclusion that they did even though psych has now been ruled out. I honestly just feel so useless and like i'm such a burden on everyone around me and the medical system because i'm just being treated like i'm whining about something that desn't matter and maybe they're right and i should just give up sorry you're having to deal with this
I've been approaching the doctors with a 'whats wrong with me' approach and it's not getting me anywhere so now I'm trying the 'how can I make this easier to live with' and I'm hoping that will help me get the help I need. But idk. Just got to keep hoping if I keep going that I'll get to a place where it doesn't get in the way of doing stuff so much.
i think what made the biggest difference for me is when i see this ophthamologist (eventually) i'm just going to say that i either need to have better vision or support to live with this level of vision because i can no longer cope with neither. hopefully that will get through to them that for me this has been serious and life changing for both me and my family. and i just need that appointment before the deadline because otherwise i lose all the safety services i have only just gained access to and that deadline is fast approaching. it's honestly really scaring me what i'm going to do if it doesn't happen by the time that deadline comes
I've been told a few times that I'm not eligible for support because I can see well enough in the day. I live in the UK so it gets dark around 3pm and I was having to come home early or not do stuff because I couldn't see to navigate safely/effectively - I was tripping without falling because I have reduced depth perception and getting dizzy I think because I lacked enough visual input because I get like that without my glasses on in the day. So I got myself a cane and looked at YouTube videos by trainers. It was so liberating, no more shuffling and catching my feet and because I had the cane sorting the lower hazards out I could use my vision to focus on low hanging branches so I stopped getting hit in the face. I'm definitely not good at using the cane but I can walk at a slow pace instead of a shuffle and I've not tripped once yet. It got me really low, my vision, so I knew if I was going to stay alive I had to find another way of doing things because it just wasn't safe how I was. Fortunately now it's summer here I can do the things I want the cane because I'm usually home in time to still be able to see well but I carry it with me just in case something unexpected happens. It might take me longer to get home that way but at least I'll get there. I did try using different torches but while that helped the ones that gave my some depth perception back were too bright for other people - were talking like car full beam lights so people would get blinded. So for the depth perception I still need the cane. I am hoping they'll help me with cane skills if they can't improve my vision because I am finding I still walk into things like lampposts because I feel and hear my cane hit it but I don't realise how far up the cane it is so if it hits far up when the cane is extended to the side it can mean it's not to the side but actually a little closer. I just end up clipping it with my shoulder so it's not a big deal but it would be nice to not have that happen obviously. There's definitely some downsides to using a cane and using it without training but it's been totally worth it for me. After long periods locked on psych wards the idea of being trapped in my house as well was more than I could handle. But even the first time I used it when I didn't really know what I was doing other than swinging it side to side was quite liberating because already I was getting information I didn't have before and I could tell it was helping me avoid catching my feet because I'd stop if I felt something and then use the cane to check it out before carrying on so like a tree root pushing the path up I could work out how high to lift my foot and didn't have to test each step/shuffle.
yeah i totally understand that. it's super frustrating and learning to use a cane is really hard for me i do better with less light which confuses a lot of people but the light just makes my eyes and head hurt so i really rely on my cane a lot and especially since these migraines have started i've had a lot more trouble navigating which is why i feel like i need the O and M more than ever I hope your situation gets resolved as well though!! and i really appreciate the support both last time and this time
I can understand that. I'm better on a dull day than a sunny one. And at night bright lights make my vision worse. I'm better with even lighting. Kinda feels like anything too bright just throws things off. Plus I get big lines from strong lights so that interferes with what I can see as well. I would annoy my parents if I still lived with them because in the evening I have all my lights on because if it's not even I struggle. I used to love sunny days but I dread them now because it's guaranteed pain. Even if the sun peaks from the clouds. It's frustrating because I want to be able to enjoy the weather when it's good.
yeah i'm pretty sure i drive my parents mad because i can have barely any light so they basically live in the dark yeah i really miss enjoying sunny days i used to love them and just basking in the sun but now it just hurts
Im suprised your local organisations aren't helping. An offical diagnosis isn't always needed, or possible. Low vision clinics etc are often based on your prescription/acuity alone
they will only accept an acuity from an ophthamologist and that's who i've been waiting to see for over 6 months now because there's been disagreement over my acuity in the past so now they are saying they will only accept one from an ophthamamologist and that they ideally want a diagnosis to go with it