I hate being me

[Nalla]

I have bad vision, and while my service dog is helpful (she's primarily med alert, and is learning guide work), I'm still frustrated.
I can't see in low light or dark, and now that it's getting to be winter there is less and less sunlight. I can see for less and less of the day, and I spend most of my day frustrated because I know that come 4pm my vision will start to go. I can't take my little dog for his own walks now because when I get home around 4 or 5pm I already can't see. I have to walk him while using my guide, which annoys him because he wants his own walk. During the summer I take each dog separately (my two and whatever others happen to be staying with me at the time), and now I can't.
Every season change where it starts getting dark like this, I get upset and frustrated. I know it's dumb to get all worked up over it, but I do it anyway. My vision has gotten worse and worse over the past few years, and I had gotten used to summer, where I can get myself around well enough during the day (and sun lasted until 9pm) and even dawn/dusk I managed not seeing because I knew I had lots of time to be able to see.
I feel like I'm missing things. My mom tried to cheer me up, telling me I still have like nine hours a day when the light is good enough for me to see. But how would she feel, having only nine hours or so a day when she can see? I mean, she doesn't know, she can even see in the dark (at least as well as most people), and her eyes don't freak out and take forever to adjust to light changing. I'm missing out on a lot of time because I can't see, and when I can I'm worried because if the lights dim I won't be able to and once it turns dusk I won't be able to.
I'm doing my best to learn to get myself around without seeing, but it's hard. I hate it.
Sorry to rant.

 

[edamethyst]

This might sound like a crazy question but its just a thought. Have you ever tried night vision goggles? I wonder if they would allow you to see at nite. It wouldn't be perfect vision but even if it allowed you to make out images and see what was going on it might be worth a shot.

 

[MinnieVanMom]

I am sorry this is upsetting you so much. I can't say I know what is like because I don't but it must be very hard to know that as sun sets so does your vision. You have a right to feel upset but don't stay there too long. Try to look at what you do have and not linger on what you don't too often. Easier to say than to do.

You are very lucky to have your mom for support and it sounds like you have something to do during the day and that keeps you busy.

Sometimes I can't help to wonder if it is ok to just say that we hate our disability, have a bit of pity party and then come back trying even harder to do our very best!?

Good luck and try not to be so hard on yourself. Give the dogs a big hug for being so good.

 

[quasar4legs]

This must be very frustrating for you and I can't imagine how difficult it must be during the winter when the light is so limited.
I guess mums just want their children to be happy and I am sure I too have been guilty of pointing out all the 'positives' to my son.
It is unfair that some people have so much more to deal with and I truly sorry that you are losing your vision.

I'm in Australia and at the moment I'm cursing the extra summer sunlight as it triggers my migraines. So all I need to do now is find a way to send you some of the sunshine I don't like.

Hugs to you and the doggies

Trish

 

[mechurchlady]

Big hugs hun and glad to see you posting.

How about a walk to the end of the block and back with your little dog. You could use a cane to stay on the side walk and mom could toss marshmallows at you as you pass your house, lol. Don't give up and try little walks with the little dog. At least he would get some time just with you even if it is 50 feet to the neighbor's driveway. In time you might get used to the lay of the land and go even further. Even with a guide dog people start off on short trips then longer ones. Is there a near by well lit park you mom could take you and your little dog?

Chin up and remember this board and all of our hugs. I know you can do this. I have read your posts and you are a pretty smart kid. Right now it is gloomy but knowing you it will get better.

HUGS
HUGS
HUGS
HUGS
Laurie

 

[alizesmom]

Being restricted by your body has to be terribly frustrating especially when it seems like day and night are also conspiring against you. Go ahead and feel angry but try to use the anger to help yourself. Sending hugs. Karen

 

[Nalla]

I'm still annoyed, but feeling a little better.
I think I'm going to run courses with my little dog, since I can do that in the backyard. It's not walking, but it's alone time for him and he does like agility. Though sometimes he gets halfway through the tunnel and then just sits in it. He loves the tunnel. haha.
My SD's harness finally broke completely, I knew it was going to (it was a training harness, and has been fixed many times before). Thankfully my new one comes today or tomorrow.
This whole thing is so annoying.

 

[Talking Hands]

Nalla
Sorry you get so frustrated but at least you have your hearing. You have a guide dog and many blind don't. This weekend I meet a blind woman who is learning sign language to become an interpreter for deaf-blind. She also has chemical sensitivity. That must be incredibly frustrating. No dog, just a cane.

 

[mechurchlady]

The important thing is quality time with your dog. See you have come up with a solution to your problem. Have you tried the tunnel? Your mom may come out and find the two of you snuggled up in the tunnel, lol. Things will work out as you are one smart kid.

Big hugs
Laurie

 

[Turk82]

Nalla,

I was just trying to PM you, but it said that it wouldn't let me until my posting count was 10 (this is my 9th post!) Anyway, I would love to connect...I have also recently lost my vision and would love a friend who could relate to my frusterations and struggles.....I'll PM after another post!
Megan

 

[SnowWhiteMommy]

I normally don't read this board, but your title caught my attention. I can't imagine what it would be like to be in your shoes. Please keep posting here, talking any problem over helps. What does your doctor say about this? Maybe there's some resource or organization you're not aware of yet? Please let us know about the night vision goggle idea, that's interesting. And know that we're pulling for you.

 

[DisDreaminMom]

I can't imagine how I would react if in the same "shoes". We're all thinking supportive thoughts.

I'd rather rant here than take it out on someone at home...We don't take it personally, and ones at home somehow manage to turn it into "their" problem. You are just mad at the situation, not everyone around you. I get it...Give your dogs a big hug. I know mine make me feel so much better. They make me so happy. My kids say I like my dogs better than them. Maybe some truth to that sometimes...But it's only the kids who can go with me to WDW

 

[Nie0214]

This thread is a little dated, but I wanted to say you aren't alone. My mother has the same issues you have with her eyes. She has Retinitis pigmentosa and is in her early 40s, and it is so frustrating to her to not see after 4pm in the winter. It's especially frustrating when you're fine all day but the second the sun goes away, you feel like your life is being taken away. (Can't run errands, can't drive, etc.)

Just sending to you in a struggle that I see through my mom everyday.