Living blind and coping with multiple sclerosis

Hi everybody. Please excuse my typos as I'm learning how to use a talking computer and have not found backspace tee hee.

I never really posted here much and was scrolling through the forums today and thought it might help. I used to be a moderator here on pc until I went blind seven and a half months ago. I was diagnosed with multiple sclerosis in oh six when the vision in my right eye died. I didn't work for awhile, dedicating my life to sobriety and pc. After about a year and a half I went back to work in a doctor's office, struggling to manage fatigue. I ha been denied sdisability and family had been supporting me.

I loved my job and had just moved into an apt with my bf when the unthinkable happened.

The nerologist said my other eye would be fine bu he was wrong. Back in April my other eye went leaving me blind. I sometimes see shadows and can sometimes make out light and dark, but no more reading, or seeing anything.

I fell into a deep depression, not just from going blind but from leaving here, no longer shooting pool, no longer driving, no more independance.

For people who know me, you know how important my sobriety is to me. I went blind on my three sobriety anniversary. I barely bmade out the three year chip before the vision slowly went. I did not drink.

I was unwilling for a long time to get any training with blind life skills. I could not accept that I would not see. A friend helped me understand that I could accept it just for today, the way I live sober. She ordered me a white cain on the net. I started therapy for grief and loss, and that along wtwith my recovery program, my faith, my friends and my bf, has helped me take the initiative to get my life back.

I began training with the cane and this friday I got a Mac laptop with a reader built into the OS. My friend ca got me a talking ipod nano. I discovered talk radio lol.

Now though, I'm struggling with the fatigue that comesw with MS. Getting more active and taking my life back has its downfalls with how my body can handle it.

I miss being a mod here and maybe one day will be again. Clye er, Clyde and Chalmette called on a regular basis which helped me feel like I was still a part of pc.

Now I'm back and wanted to share my story. Are there any other blind people on the site? I just needed to kind of unload oall that to the community which saved my life....I found pc before I got sober, and I believe that fif I hadn't found pc, I might not have survived long enough to find sobriety.

Any tips on fatigue issues with autoimmune? I know I should go to nerurotalk but I haven't ventured anywhere other than here lol.

Thanks and hugs,
Rayna

ray hon you have always shown me strength. I am so happy you are now willing to learn to live blind. I can not begin to imagine what you are and have gone thru. Know I and the rest of us are here for you hon. We love you and are happy to have you back! (((hugs)))

((Rayna))) i can relate to alot of your story, not the part about coping with blindness and i have always considered the gift of vision a real blessing.. im inspired by your strength of will and positivity its so good to have you back with us again

Hugs to you both. Part of my coping is with humour and I gotta say that Levi the computer voice says Nowheretorun like "no hair to un" teeee heeeeeee heeeeeeeee.

(((((((( Raynaadi )))))))))) Hugs

I have worked with deaf and blind people in the past. One of the deaf people I worked with, was just amazing. He never let it stop him, and his other senses became more tuned in. He was more able to sense and feel things. I worked with a blind boy also, the most amazing thing about him is that he learnt to throw a ball, and catch it just as good as anyone else! His hearing became more acute, so he could work out where to throw it. He also became a whizz on the computer.

Go easy on yourself, it's only been a short time and you are bound to get extra tired with learning new things each and everyday.

Hugs Peg. Thank you for your encouraging words. Its '[;good7o6know that the blind boy was a whiz on the comp. I'm takiNG
taking it easy. Spinelli keeps walking on key1b2orrrboard lol.

Hi Raynaddi.

My avatar is a huge elephant balancing with one foot on a Tiny ball with a comment that says .

Alright who greezed the ball again. I'll dedicate it to you.
I'm honoured to meet you.

Love , Aurora

Ray....Gosh you're are so inspiring and strong

Dearest (((Rayna)))

You have no idea how good it is to have you back on PC. You have been missed terribly. Personally I have missed the jokes and laughs we've had and I hope we can have them again very soon!

As to the autoimmune fatigue....that's a tough one hon. From my experience, you can't plan for it because you just have no idea how it will affect you when it hits you or when it will hit you. Try different things. If you find you have more energy in the morning generally, then try to get to the real important things that need to be done then. The rest is just gravy the rest of the day to get to what you can when you can. And don't feel guilty woman when you find you can't get to something you hear me?? *wink wink*

xoxoxo
sabby

((((((((((((((((Rayna))))))))))))) It's so good to see you here. I don't have autoimmune fatigue, but I can understand getting tired out from learning new things. I had to start a new job and it took so much out of me to learn. All the focus I could manage was spent trying to learn new programs and such. By the time I came home, I was so exhausted I couldn't think anymore. It wasn't physical labor but it sure felt like I'd been moving mountains. My entire body felt it.

I hope you will give yourself time and be patient with yourself. I think you're doing amazing and you are such an encouragement.

So glad you are back home with us here Rayna. We've really missed you. Huge hugs.

Its good to meet you too Aurora. Thank you for describing your avatar. I couldn't understand what it says though? Maybe if you space it out a little my reader will read it clearly?

Moonkin so good to see you hon. I gotta get over to your thread in general. I hope things are better, or will be soon. I feel like I've watched you grow up tee hee.

Sabby, you're right about never knowing when it will hit. My best friend has chronic fatigue and she was talking to another woman about what she does when she gets tired and the woman said "I sleeeeep. And I don't feel bad about it." I had to remember that yesterday when I could barely move. I miss our laughing too. Hopefully soon I'll get back into chat.

Wantto, congrats again on modship. I totally know what you mean about learning being so tiring. While this isn't physical it sure drains me. Kimmy deleted all the images and graphics for me so its making navigation a bit easier. I have to admit, at first I was sad that I was no longer a mod, but now its nice to just be able browse around casually wink.

I'm really working on accepting that I am an inspiration.....at first I just said "you don't know what you can handle until you have to handle it". My T is really helping me to say thank you.....and understand that while I'm just doing what I need to do, others find it inspiring, and if that means I can help people, then thats my purpose. No clue what my next career witll be....thinking about teaching mac to blind people? Or counceling? Or public speaking? Or manybe an activist for the visually impaired? Sky's the limit....apparently thats the same for my fatigue lol.

I feel like I'm complete again being back here. October was my four year anniversary here. Sooooo glad to be home.

Hugs,
Rayna

((( Rayna ))) I, too, am so glad to see you back here with us. You are an inspiration. My daughter is legally blind. She can see some, but very little. She works with some type of talking computer at school. I wish I knew more about it, but I don't. I haven't been able to afford to get her one for home just yet, but I hope to do so in the future. She really has a gift, though. She can tune into people like you wouldn't believe, if that makes any sense. She just amazes me with some of the things she can sense without having sight. People tell me she's an inspiration, too. She behaves just like any other child would, though. She was born with vision issues, so it's all normal to her. I hope she's like you when she's an adult. Willing to take on the world and live life to the fullest. You truly are an inspiration.

Jenn

Ray, my heart aches for you but I really do admire your tenacity and strength. You are an incredible person!

Jea oops lol

Jenn, thank you for your words...I had forgotten about your daughter's vision problems. Though she probably doesn't see it as problems...I'm almost there lol. Any government programs to get the reader at home? ? There's a program called jaws for windows, don't know if thats what she uses at school. There's a government program here that would have provided me the software if i had wanted to wait. I don't know how you'd look into that but if I can be of any help, let me know. What state are you in? Maybe my people would know....does she know the white cane?

Sabrina, so good to "see" you tee hee. Thank you for your encouragement.

I got so frustrated last night....fatigue has been bad, and before when things were easy I could handle it better. Now that everything is hard its even harder when I'm tired. I can't figure out the pm's here now and its driving me nuts. Gotta be patient, the apple store will be able to help. Jenn, maybe check with app;e....who knows what they might have in the way of assistance for the blind. I'm on a mission to get the word out to the blind community. We'll get her a computer at home by next year....mark my words. Insert smilie. Give her a hug for me, and please tell her there's a woman on your forums who she's helping.....

Hugs,
Rayna

Jenn had another thought, apple's desktops are like the size of a cigar box. She wouldn't need a monitor, just a keyboard and headphones....so I'm not sure sure what that would cost, but the voise over software is already in their OS. I said we'd get her one by next year, forgot thats next month lol. so by christmas next year tee hee.

Hi Raynaadi,

I haven't really talked to you before you left the site, or at least not enough so I would remember lol. I can't even begin to imagine how scary that must have been to suddenly be completely blind! I lost vision in one eye about eight, nine months ago. And I still remember how shocked I was about that and still sometimes get frustrated with it. Though it was because of an accident, not a disease. I am sure there must be a few more blind people and or people dealing with fatigue or ms on here. I hope you will find some to talk with *smile*. And I suppose there are also forums like this, dedicated to both. Maybe that is worth looking into. Either way, take care! Seems like you are on the right track.

Blue

Hi Blue. Its scary to even loose one eye. I had lost my right first, so I experienced living with only one eye. Its amazing how the other one adjusts and picks up the slack. I haven't tried any other sites lol. Its enough just to re learn pc so I haven't tried other sites. Might branch out today...not sure. Lots of catching up to do for now since I was gone for a week, and fatigue is pretty bad recoviering from my trip.

((HUG)) just wanted to say hi and i read your post and you go girl.

Aawwww thank you and good to meet you. Hugshugs.

yep i suppose that would be hard enough! Maybe someday when you've relearned PC. Or not. Up to you!