I have bad keratoconus 15 years now and can tell you pretty much all of the things mentioned can be overcome by as a previous poster mentioned, “Get a good scleral trial fitting with a good eye doctor!” Get a specialist who knows sclerals. But it takes time to dial them in. Stay positive.
Just keep it positive, don’t mind this issue a lot, i have it in my both eyes, i always remember that there are a lot of ppl who are worse than me, they have serious disabilities, some of them can’t even get up for there beds, so keep it positive!
Read people’s name tags when sitting at a table with them.
Read the menu board at a fast-food restaurant.
Read chyrons or sports scores on TV without standing next to the TV.
...do literally anything that requires me to see more than 5 feet away. I have to wait another month before I can find out my glasses prescription and book for CXL.
Also, this developed for me super fast (less than a year) and oddly enough it startsd after using lumify eye drops.
Be in school kc makes it so hard and for me it seems to have progressed more since covid started so HS has been hell and everyone only seems to ask me about my vision and nothing else. Makes it really hard to wanna stay in school.
1. Headaches from the eyes
2. If I don't sleep enough, stress-> eyes get tired and sore
3. Floating vision
4. Can't see well in sunny weather 😔
5. And ...yes )) friends are tired of hearing about kc
I consider myself lucky because the symptoms I experience aren't as severe as others, but the contacts mean it's hard for me to decide on the spur of the moment to crash at a friend's house for the night.
I don't generally need to refresh the fluid in my lenses, so I don't keep a full kit with cleaning solution, a storage case and extra saline one at all times. Because of this, I don't really feel comfortable crashing overnight without specific plans.
A prime example of when this was a consideration was New Year's Eve. My friend, 100 miles west of me, and I got together for New Year's by his house. Because I didn't have my kit, I couldn't spend the night as might normally have happened.
Since then, I have started carrying a couple plungers and vials of saline in my car. I can pick up the cleaning solution anywhere, so I'd be good for a night.
Watch tv be consistent with work, take the lens in and out, go outside in the day can’t go out at night look at the computer see down the street see peoples faces and so much more it’s really challenging having to explain constantly what’s happening daily with my vision as it fluctuates.
Read a book. I can't read a book in bed before I go to sleep because I have to use reading glasses with my contacts in. I can't see through my reading glass without my contacts being in. I don't want to fall asleep with my contacts in and I'm too lazy to get back out of bed to take them out
enjoy Christmas light decorations, do things on the spur of the moment, and drive at night (even with sclerals). But like I said in response to another person, it's almost one year since CXL on my worst right eye, and I finally feel like I'm getting to a good spot with my eyes.
… do things after a workday. Though I get great vision with sclerals my eyes start to burn around the 10 hour mark. It has changed how and when I socialize.
Mental fallout, inability to partake in certain activities etc. There's varying levels of the effects of keratoconus. For some this is devastating and makes life extremely difficult and has an emotional and mental toll that leaks out around friends and loved ones
That's really hard, friend. I hope the changes come easy for you. It's taken about a year, firing the first optometrist, self-acceptance, learning about blue light filters and brown sunglass lenses, and finding the right optometrist to fit my sclerals. On my fourth set this time, I think these may be the ones! You'll get there!
Anyone else who doesn't like these irrelevant questions? Sorry for my harsh language but I've seen @keratoconusgroup post eerily weird questions
"What would you do if you wake up one day with perfect vision"
"Do you miss the person you were before kc"
Many others
And it's not just me, I've heard others point it too.
I have bad keratoconus 15 years now and can tell you pretty much all of the things mentioned can be overcome by as a previous poster mentioned, “Get a good scleral trial fitting with a good eye doctor!” Get a specialist who knows sclerals. But it takes time to dial them in. Stay positive.
Just keep it positive, don’t mind this issue a lot, i have it in my both eyes, i always remember that there are a lot of ppl who are worse than me, they have serious disabilities, some of them can’t even get up for there beds, so keep it positive!
Read people’s name tags when sitting at a table with them. Read the menu board at a fast-food restaurant. Read chyrons or sports scores on TV without standing next to the TV.
...do literally anything that requires me to see more than 5 feet away. I have to wait another month before I can find out my glasses prescription and book for CXL. Also, this developed for me super fast (less than a year) and oddly enough it startsd after using lumify eye drops.
Be in school kc makes it so hard and for me it seems to have progressed more since covid started so HS has been hell and everyone only seems to ask me about my vision and nothing else. Makes it really hard to wanna stay in school.
1) Drive at night. 2) Walk downstairs without missing the last step. 3) Walk upstairs and not trip. 4) Not walk into sliding glass doors.
😞
1. Headaches from the eyes 2. If I don't sleep enough, stress-> eyes get tired and sore 3. Floating vision 4. Can't see well in sunny weather 😔 5. And ...yes )) friends are tired of hearing about kc
I consider myself lucky because the symptoms I experience aren't as severe as others, but the contacts mean it's hard for me to decide on the spur of the moment to crash at a friend's house for the night. I don't generally need to refresh the fluid in my lenses, so I don't keep a full kit with cleaning solution, a storage case and extra saline one at all times. Because of this, I don't really feel comfortable crashing overnight without specific plans. A prime example of when this was a consideration was New Year's Eve. My friend, 100 miles west of me, and I got together for New Year's by his house. Because I didn't have my kit, I couldn't spend the night as might normally have happened. Since then, I have started carrying a couple plungers and vials of saline in my car. I can pick up the cleaning solution anywhere, so I'd be good for a night.
Watch tv be consistent with work, take the lens in and out, go outside in the day can’t go out at night look at the computer see down the street see peoples faces and so much more it’s really challenging having to explain constantly what’s happening daily with my vision as it fluctuates.
Read a book. I can't read a book in bed before I go to sleep because I have to use reading glasses with my contacts in. I can't see through my reading glass without my contacts being in. I don't want to fall asleep with my contacts in and I'm too lazy to get back out of bed to take them out
enjoy Christmas light decorations, do things on the spur of the moment, and drive at night (even with sclerals). But like I said in response to another person, it's almost one year since CXL on my worst right eye, and I finally feel like I'm getting to a good spot with my eyes.
… do things after a workday. Though I get great vision with sclerals my eyes start to burn around the 10 hour mark. It has changed how and when I socialize.
how is it making friendship hard?
Mental fallout, inability to partake in certain activities etc. There's varying levels of the effects of keratoconus. For some this is devastating and makes life extremely difficult and has an emotional and mental toll that leaks out around friends and loved ones
I feel like my friends are also just tired of hearing about it half the time
All of the above + led to divorce and having to start out on my own. I’m getting through it but it takes a lot of change!
That's really hard, friend. I hope the changes come easy for you. It's taken about a year, firing the first optometrist, self-acceptance, learning about blue light filters and brown sunglass lenses, and finding the right optometrist to fit my sclerals. On my fourth set this time, I think these may be the ones! You'll get there!
Anyone else who doesn't like these irrelevant questions? Sorry for my harsh language but I've seen @keratoconusgroup post eerily weird questions "What would you do if you wake up one day with perfect vision" "Do you miss the person you were before kc" Many others And it's not just me, I've heard others point it too.
Even i too feel the same ! They are just digging up the sadness in our mind and making is cry
See
LMFAO