Blindness & Visual Impairment Support Group

Hi. I'm new here, too.

I think you've made the right decision in seeking out other patients to talk with. How about talking to someone who lives with the specter of future total vision loss every day? Perhaps a comparison will help lift you out of these doldrums......

My MS has given me *total* *bilateral* blindness that lasted five hours due to a lesion in the Visual Cortex in my brain.

Since lesions get larger over time, we *know* with certainty that I will become totally blind in both eyes -- we're just not sure when.

In the meantime, I continue to suffer from Optic Neuritis (which prescription glasses cannot help -- the problem is behind the eye on the optic nerve), also due to my MS, in both eyes which gives me a dozen vision symptoms to deal with.....

Blurriness, double-vision, loss of peripheral vision, color loss, blind spots, dim vision, transient vision, bright flashes with eyes closed, blinded by bright lights, pain in eye, pain behind eye, night blindness, Uthoff's Syndrome, and more.

Maybe if you try looking at your loss as if the glass is half full, you might be better able to cope.... as in, "Life is so beautiful, and I'm so glad I can still see all its beauty."

I deal with over 20 other major, life-altering MS symptoms in addition to my eyesight problems, so I've also joined the MS group.

I hope my playing the devil's advocate, so to speak, has helped you. Time also has a way of helping chronic illness and ailments, and I hope that will be the case for you.

I wish us both the very best of luck.

Hi back Happy Poet,
I know you are so right. I'm always trying to remind myself that there's always someone with bigger problems than myself. (and you've certainly shown me that's true). I do have many things to be thankful for, I guess I'm just slow at adjusting to changes in life(especially bad ones). I'm sure life rarely turns out the way any of us expects it to. I'm sure this isn't how you'd have planned your life. I don't know why I should be the exception.

It's got to be hard for you to have lots of healthy people all around you (and they rarely appreciate the health they have) and wonder why life 'dumped' on you. I guess I feel that way sometimes towards others who have two good eyes. I know I HATE being the object of other people's pity but it is nice to have someone who will empathize with you and I do, for you. You sound like such a strong person and I'm sure the suffering you've lived through has contributed to that strength.

I guess I'll keep on pondering why life is the way it is and working on this acceptance part of grief that I can't seem to get to. They say everything happens for a reason though we may never understand it in this life.

I pray that the sometimes wonderful, sometimes inadequate medical profession can somehow someday help us both. You have a wonderful wisdom and attitude. I thank you for responding to my post, I will take your words to heart and try to see that glass as 'half full'. It will just take time. I need to re-adjust and figure out who I am.

I wish for you a miracle. I hope you find lots of support from others who suffer from MS.
Thanks again.

hi i was depply moved reading yopur jornal and wellits a hard time for you
i just around 4 months ago last the last of my vision i had lost the left eye on the 4 jan 2006 the right was hang on there for me and i always belived it would stay thay way i refused to listen to the medics i knew in my head it was going to be ok then it happen i woke one morning and hey it sdark wjhere is the light a few mins late rmy earth really came tomble down and the facts hit home so hard i cant even think now the different emotions that rush through my head i wa sjust scream so much it was hell
i was taken to new york and they told me then it was stupid to try as the risk was so high and once they try any future attemps wer e gone i took the chance and ok i came back with light in my eye i lied so much but they all knew i was as blind as before then in a matter of not even weeks the darkness once again engulfed me and it was then i finally accepte dthe end
ok i took it so bad so very bad i hit the why whty me stages of this but then my friends all sat me down and said ok so what u are blind u dont see
put your hand on my face and feel me then we had a nother girl join the project and she is blind as well so there i was a crying mess all the world against me then she was there and say look babe i never saw in my entire life so lets sit down and u describe to me the tjhings you remember whenu did see
we got on so well and soon it was clear to me i was so stupid
now 4 months on she is married to my cousin
she teach me how to feel a face and draw it ok mine is crap but they say is good but i know her are work of heart and one day i will i pray be as good
she teach me how to use a pen and tablet so now i hand write to my friends on msn and i use a digi scribble to make notes all day for my book i am writeing
i am now sail my boat ok i need help to see in that annia my friend is my eyes i have 2 girls on the boat in the project and they both are deaf to me thay are my eyes to them i can speak thay watch me an dread my lips we are a team ok 3 deaf or blind girls but wow we are have fun
every day now i look at as a challenge to my new life i do most things i take aparachute jump attached to a guy wow that was fun
but you know the best thing is accept this in my life and use it to my advantage and the support i get on this site from people ok i had 3 so far guys that are more suitable to adult sites but in the main i wake now every day to read my mail and all the othe r good thuing smy friends bring me in all ythis
i use a text to speech readr so in ways its very personal listen to the messages or read the jornals etc
i can type ok please excuase the mistakes haha or i can use my naturally talking softwware to talk and it type and sent to the other guy
but in all this i am not alone and dont think 50 is a hurdel w eare all the same in this i am 21 so shoulsd i stop and think hey i am 21 this is no good for me
ok i hope i offered you some hope or what ever and if you feel like chat or argue with my views or what ever i am here 50 or what ever age and to me u are a part of my daily strength
nat lots of love xxx

Losing health is very hard, and sometimes I think that losing sight or hearing must be the hardest of all. When we lose things, we have to grieve that loss. It is a process. It takes time. Everyone goes through it at a different pace. Yours may be slower than you would like, but you will get through it. Some day, you will wake up and realize, "I really can live a wonderful life with this!" In the meantime, be patient, and if you need to talk, I am here. Hugs for you.

Wow, you girls all made me cry (in a good way). Thanks for being kind and gentle, if you were bitter people you could have really blasted mefo all my self pity. I see a therapist who says exactly what Boodles tells me. Just give it time... wish I could fast forward through this time in my life. They say in grieving you go through something called 'the desert experience'. That lonely transition between what was and what will be. I'm there in that desert. I believe that God's sends us angels along our journey to help us find our way. You are certainly my angels. I pray God sends you lots of angels in your paths also. Thank you, I'm glad I found this site. God bless.
Brenda

From Another guys point of view.I am leageally blind myself. Along with these ladies. I just want to thank you for joining us. Ever want to talk we are all here to help each other. As I see things we are all family here. at least thats my peception of it.

Jason

I know how you feel. I lost my sight in one eye back in 2003. I was only 38. They told me I had macular degeneration. My depth perception is all messed up. I have had to give up my motorcycle and I can not drive at night anymore. There is a huge chance at this will also happen to my other eye. At first I freaked out, thinking of all the things I love to do that needs vision like my photography, reading watching movies etc. But now I am greatful for the vision that I have left. I try to enjoy life as much as I can.

I am so sorry of your other medical problems and also the cost. You still have a lot of life left. Don't let this get you down.

Hugs!

I started O&M this week. the only advice i can offer is this: breathe in, breath out, move on. the cycle will repeat, but the idea is to get through each moment until the going gets easier. talk to people, cry, pound a pillow, hold on to friends & loved ones, make love, learn new things, relearn old things, meditate, pray, ask for help, do things for yourself. stay in motion, even if it's slow. don't allow yourself to stall.

the only easy day was yesterday.

Randa

PS: write me. I'll listen to you and help all i can. later on, you'll be the one helping me or another in need.

WOW -
So much of your post had similarities to things that have happened here. My Mom (who passed away last year) had pseudomonas December/January 2006/07. As her caregiver, I had to fight to keep her home and get daily injections instead of transporting to hospital.

I thought I'd slowly get my life back on track despite the sadness after losing her. But I've now been diagnosed with what seems to be retinitis pigmentosa, and I may lose my license upon renewal this year. Which means no work - and how do I get anywhere? I have expenses, too. And I understand that after attending bereavement counseling, I'm finding all thos same words on the vision loss sites - anger, loss, grief.

Mama's Child,

I had to surrender my license and sell my car recently. Now I get vouchers to subsidize cab rides. Surrendering that license was hard on me, so I do understand. Let me know if i can help.

I lost my job, too, and now i have an ADA suit waiting for a court date. Until then, I'm on Social Security and public assistance until I find something. I am DETERMINED to find something!

What job skills do you have?

Randa