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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Sometines I wish...

I am in my middle 50s and have gradually been losing my sight over the last three years. The vision loss stems from congentital rubella syndrome.

I have lost my cetral visionn and can only percieve light, color and motion in my peripheal vision with little defination. To add to this I am painfully sensitive to light. I wear sunglasses that screen all but 4 percent of visible light and it still hurts to go out on a sunny or partly cloudy day. Cloudy days I can just maneage with the aforementioned sunglasses. Indoors the light must be very dim for me to be comfortable at all. I am told by my doctors that nothing further may be done to improve my vision.

With all this I sometimes find myself wishing I would go ahead and lose my sight compleatly so I may have relief from my painful glare and the struggle my vision bring to my life.
I am aware of the problems total blindness will bring but I feel life would in some way would be easier.

Has anyone else felt this way with their vision loss and the difficulty coping with it?

Am I crazy and ready for a white coat with long sleeves for feeling this way?

I look forward to hearing your comments and advice.

Thank-you

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Re:Sometines I wish...



Hi my names Lindsay and i'm legally blind i know how you feel last year in school i wore sunglasses all year cause the light hurt so much and i had no relief all i can say is hang in their


Re:Sometines I wish...



Hello, my name is Paulina and i also have ROP and i can see lights and shadows like Elphys bestfriend and i think that my remaining vissione helps a lot and i think that you will be ok if you just hang in there and be possitive good luck Paulina


Re:Sometines I wish...



I'm 22 and I am legally blind. I have sometimes thought it would be better to lose my sight completely, though I should feel lucky that I have as much useful vision as I do. It's just frustrating being in between blindness and having normal vision. It seems like it would be easier to ask for help if I were totally blind, but because I have some sight I can be stubborn and not ask for help even when I might really need it. It's also hard to explain to people just what being legally blind means. They seem to think in black and white, you can see or you can't.


Re:Sometines I wish...



Hello Jeannie

Thank-you for your thoughtful comments. Aren't Grandchildren wonderful.

I'm sorry to hear of your difficulties and pain with your eyesight. I have never heard of Auto retinopathy what is it and how does it affect the eye?
In reply to your invitation to correspond I would enjoy that very much. Please refer to an earlier post of mine for the e-mail address. Meanwhile I believe you will find something from me in your inbox.

Best Regards


Re:Sometines I wish...



You are not alone out there!
My name is Jeannie N I am 47 and I too go through the same thoughts about sometimes it might be easier to get my eyes out. But then on just the right situation if I have slept well, on a cloudy day ,early in the morning when my eyes are first up I can see my Grandchildrens faces really close up for just a few minutes I can see a smile from them It is worth all the pain I have to go through every day with all the pain and light sensitivity . I have auto retenopathy . I use the blindfolds at home. I use a white cane for travel. You are not nuts for feeling the way you do. Email me any time and we can chat. Jeannien@centurytel.net. Hang in there you are not alone.


Re:Sometines I wish...



Hello Jillian

Thank-you for your thoughts.
I am sorry to hear of your difficulties and of course I understand somewhat the struggle you are undergoing.

I would be most happy to xchange e-mail with you.
mine is bill@samobile.net

I look forward to hearing from you


Re:Sometines I wish...



hey there, my name is jillian and you are not crazy for feeling that way!! i feel that way all the time! i have retinopathy of prematurity and have recently had 4 suurgeries from dec to june and i feel that all the time, sometimes i think it would be easier to be compltly blind than deal with it. but we have to do you have an email?? i would love to email you :)
hope to hear from you soon!!
jillian


Re:Sometines I wish...




thanks Elphie

I will check into the Cocoon sunglasses. I am currently using Noir sunglasses which only admit 4% of the visible light. They tend to be a bit uncomfortable. I too resort to a hat with a brim to aid with the glare. I have also used something called a Mindfold which blocks out all light. The Mindfold is like a sleepmask but has a stiff plastic front with a foam rubber backing that has holes in it that allow one to open and close the eyes without being rubbed by the mask. It does do the trick but is a bit too warm to wear all the time. I understand that it is used by some O&M instructors.

Thanks again for your response, I was feeling strange for wishing what I was.


Re:Sometines I wish...



Hi There!
I'm so sorry to hear that you are having such a tough time with your vision. I can relate to the painful glare issues. I have two eye conditions that contribute to my glare issues. My eye doctor that I saw who specializes in the eye diseases of the visually impaired, suggest I wear these sunglasses called cocoons. They fit over my corrective glasses and they are tinted for my particular eye condition. These cocoons come in three different shades.
When the sun is really too much as far as glare I try to wear a hat of some kind to shade my eyes. This helps tremendously!
This is just my feeling and I have a best friend who has no vision, but has light perception and can see shadows. This person believes they would be sad if they lost that light perception. It would make them a little more disoriented and it would be hard to navigate.
It's comforting for them to have that light all the time.
I hope someone else will come along and lend their support and suggestions too.
Keep strong


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