I can't take it anymore.

[MoniqueU]

As a few of you may know I have a degenerative eye disease. I am already legally blind and it will get worse. As of now there is no cure just a few to me oddball herb or vitamin treatments. Anyway.
I can't take my family. My kids complain that I bump into them and make fun of me for falling over things and tripping. I have almost no peripheral vision so it makes it hard to get around especially when a kid is leaving a cupboard door open or moving a chair. I trip over my beloved dogs so often that they move to get out of my way which hurts me more. My husband is sometimes good about it but other times like when we were in Hawaii and the lady that took the admission fee to Kilaua was blind he snapped at her HERE. LIke HERE is the money. Other times he will laugh at my accidents too or expect me to do more then I can like sweep. I can't see the whole floor sweeping is a joke, I miss almost everything that needs to be swept up.

then there are strangers. For now until my sight gets a bit worse I wil not use my cane. Its my pride and it wouldnt really help as I can see enough to get by in daylight most of the time. Nighttime is a killer but I do the best I can. Lately I have had strangers come up to me and ask are you ok. Like the security guy on our cruise and some guy in a bar in Vegas. Sometimes I snap back and say YES are YOU ok. I really just want to be left alone. I am sorry I sometimes bump into people, I always apologize and most people are very rude about it. I can tell there really aren't alot of truly nice people in this world by the number that will accept a simple apology for an accidental bump in.

I feel like one of these days I am going to snap on one of these people that asks me if I am ok and say no actually I am not and tell them why and how they just ruined my day by making me feel less then once again. I know they mean well but I just really want to do my best to ignore the fact I am going blind for as long as I can.

Sorry for the pity post it is just really getting to me lately to not have very many people understand.

 

[Planogirl]

Geesh, you have nothing to be sorry for. You are obviously going through a very rough time and I think that you were downright kind in your post.

Your family sounds like they're having a hard time dealing and other people just don't get it. They're all just going to have to come around because you have more than enough to contend with.

 

[pearlieq]

I'm so sorry.

 

[momrek06]

Sorry for the pity post it is just really getting to me lately to not have very many people understand.

Ahhh...MoniqueU: Just come right here to the DIS and tell all of us! We are here for YOU!!!

 

[Cool-Beans]

Maybe you could carry a giant sign that says, "I AM BLIND!" Kidding, of course. My mother is losing her vision. We joke a lot.

When Mom could still read, I got her large-print books and she called them, "Books for the Blind."

I'm sorry for you that it is so tough. I'm a big one for ignoring things and wish you success in your endeavors to ignore your declining eyesight.

 

[mickeysgal]

Sometimes you have to let it all out. Thats what we're here for.

 

[Mimi Q]

 

[lucyanna girl]

Everybody needs a good cry every once in a while. I cannot imagine losing my sight.

Penny

 

[minkydog]

Have you had the opportunity to do any grief counseling? I get the sense that you are very angry. But I'm not sure it's everyone else you're angry with--I think you are angry with yourself. I think you are angry at the loss of control and the undeserved chaos this has imposed on you. And who wouldn't be? Losing your vision(or living with chronic illness) is a loss in the biggest sense of the word. It's blow to your self-image & your independence. It's very disorienting.

You're family doesn't know how to react. Your kids don't see you as you see yourself--you're the mom. Mom's don't get sick. They don't lose their vision. Sometimes teasing and laughter is a kids' way of saying, "please don't be sick.please be normal." It may be masking their own fear about what is happening to you, and consequently to them.

Two things I am going to recommend: 1) That you seek out a counselor, an objective third party who won't get their feelings hurt if you cry, cuss, rant and rave. Let it all out. 2) Call your local board of health and find out what vision services your community offers. Centers for Low Vision can help you learn how to deal with the practical side of living in your home and community.

One other recommendation, and you can take it or leave it: you may want to rethink the white cane. It is instantly recognizable. Even though you don't depend on a cane, the cane will alert people near you that you have low vision. Of course, carrying a cane tells the world that you are vision-impaired so you're going to have to deal with that.

I'm sorry you're having to go through this. I've not lost vision, but I'm married to a man with a serious chronic illness for which we have had to make many changes. It seriously sucks. But all we can do is accomodate and adjust.

Much love,
Cathy

 

[MoniqueU]

Thanks for all the posts.

Especially thank you for yours minkydog. Yes I am angry, bitter, confused, scsred and I just hate that at the age of 30 I lost my license and in a sense my capability to get my kids where they need to go and do for my own family.
My mom helps out but there is a constant fear of what happens when she can't help anymore. I did got to counseling for awhile, it didn't seem to help much.I could try again and see if it helps.
i know all the blind services in my town and some I don't quailfy for due to income and others are for those further along with thier RP then me so I tried to go to a few group therapy sessions and it was just kind of awkward and scared me even more. I do participate with RP support boards on the net and guess I need to get more heavily involved again..

Thanks for the support guys.

 

[minkydog]

I hear you. It's not fair and it sucks. Try a different counselor--perhaps vision services knows of a counselor who has dealt with people who are losing their vision. It is possible to live your life as an independent blind woman; all you need is to proper tools and a little support along the way.

 

[holycow]

Hugs to you!


I think I would sit my family down and talk to them about how you are feeling. We joke alot in my family too to cover up hurts or other issues but when it comes down to it really getting bad it always feels better to get it out in the open. Maybe your kids could help (you didn't mention their ages) sweeping in the kitchen or cleaning up so you don't bump into things.

I also know you said you don't like the cane but I think it would help people understand and maybe not be so rude to you. (and if you were in Vegas and they were rude...that is a Given! when we went mostly everyone was drunk anyway and bumping into people.)

You deserve to vent! Here's another hug!

Holycow

 

[The Mystery Machine]

Well, when I get into the "I can't take it anymore" feeling, it means something has to change.

I can't even imagine going through what you are going through. Maybe you are ready to make some leaps of faith with something. Perhaps people around you need to be more sensitive. Family counseling could be what is in the plan for you.

{{{HUGS}}}

 

[Serena]

 

[CathrynRose]

I'm sorry.

My mom was "legally blind" before she passed away in January at age 55. She had diabetes and lost her site due to that.

We laughed and joked with her too, and generally she joked too, but I understand what youre going through. She'd sometimes get SO upset - and I'd feel terrible.

As another poster mentioned - the jokes arent really making fun of you, it's just a way to handle the stress of the situation.

Feel better.

 

[Disney Ella]

That must be very difficult, watching your eyesight gradually fade away. Do you have retinitis pigmentosa? I worked for the RP Foundation years ago and met many people struggling with diminishing vision. It's a big adjustment and very frustrating knowing that right now there is nothing that can help.

 

[elizke]

I knew from your description it must be RP. And I'm so sorry!

Three of my brothers have that as a part of Usher's Syndrome, which adds a hearing impairment. They have struggled all of their lives, especially the one who has it the worst, more with the hearing impairment when they were young affecting their speech, etc. It's been very tough. Imagine being a teenager and the "clumsiness" and the "huh" all the time. They never had it easy.

Brother 3, who has always had both the hearing and vision loss the worst, was never able to drive and was legally blind by 16. (In this type the peripheral vision is bad from the beginning.) But as he got older he got cataracts and glaucoma added to the mix, and now there is very little left.

He has struggled with acceptance too. He is 46 now, and finally using a cane thank goodness. It helped so much. There are so many helps available that you can't take advantage of until you accept the new you.

As a previous poster said, you are angry, and your family is too. It's so hard for all of you, and I'd be mad too!! But imagine yourself at some future point having accepted it all, being a brave confident blind woman with a sense of humor and cool tools like talking thermostats at the ready. Just imagine that person and admire her!!

I happened to meet a man here in town who has just RP, and he is like that. He's a husband and a father of two and has a great job, and has his house equipped with visual aids and seems so happy all the time. I asked what his secret was, thinking of how to help my brother, at being so successful and happy. He said "I accepted it, embraced, and took control."

A support group would be great if they have one in your area. If not there are on line RP resources for sure!

Venting was a great place to start!!

E.

 

[Stepharoonie!]

 

[Bbgrizzle]

I'm so sorry you are going through such a hard time. I wish you well.

 

[Hannathy]

I really think you need to get the cane..for 2 reasons The first is to beat your family over the head, except the dog at least in it's limited brain capacity it is trying to help! That's terrible that they are doing this, can your Mom talk to your kids about it? You are a much better person than I, I would have flipped on them by now. The 2nd reason is with the cane I think people will know what is going on and either not bother you or be more understanding. I know it is hard to admit you are different but it will help. IMO the people who ask if you are ok are not being rude I think they really are concerned and are expressing it the only way they know. Use the cane it will make things easier. I'd try the blind association again they really were very helpful and nice to my Mom when she was loosing her eyesight. The drove her to eye appointments even those 1 1/2 hrs away, gave her suggestions,tips etc. She also fought it and didn't admit it to anyone and found out when she did admit it and accept help she could do many of the things she used to again and was much happier. Possibly they have a group your family could go to to learn how to accept your problem and learn to help you or at the very least a group you could talk to and vent.

You are an amazing women to be dealing with what you are without support and not to have crawled into a corner and given up! Vent away if anyone deserves it you do! Talk to your dog they are the best listeners, I hope things get better soon.