I only keep in touch with a few people out of the big group I used to consider my friends.

Lynn is right. Most folks are self-absorbed. I hate to think I was ever like that before MS entered my life. I feel fortunate to have been given a huge eye-opener because of my dx.

If I ask someone how they are I really want to know. It's not just a formality. If I didn't want to know I wouldn't have asked. I just wish others would do the same.

Surprisingly enough the one person who asks me how I'm doing and truly wants to know is the cashier at the Publix I go to. I'll stand in her line even if there are shorter lines available. I ask her how she's doing and wait to hear. I listen to her and she does the same for me. She remembers that I need to hold onto the buggy because of my balance and will remind the baggers to let me push the buggy to my car. Some of the baggers are starting to remember, too. I know it's a small thing but it touches me to know that these folks take the time to notice. Most people are just too involved with their own problems and issues but ultimately they are the ones missing out. They really are.

Focus on those people who make an effort to keep in touch with you and know how you're doing. Like me, you might find that it's just a couple of folks. But it's easier for me to keep up with a couple of people than it is a large group.

So true, Kelly. Why waste time thinking about those who pretend to care and start hugging the Peeps who do.

I completely understand where you are coming from. I asked a friend once why I had to hear all her sad tales and she never listened to me... "Well your life is perfect and you don't have problems." Yeah...

I'm thankful for my husband and two sons. They listen and they "see".

Isn't it funny how others see us.......nothing like we envision ourselves or how things truly are. I had a "friend" tell me once that I had it made. And she would sure like to get on "that gravy train" meaning SS Disability. I told her I'd gladly trade my MS for her job. She still doesn't understand.

Awwww Dej!!! I'm sorry I sent you that old picture of the house we use to live in and triggered those OCD feelings to clean!!!!

I've found if you grab them by both sides of the collar (or grab their shoulder blades if no collar) and shake like crazy while screaming at them, they listen much better j/king but dang I've sure felt like it at times.

Now, get that phone number changed (promise I will only give it out to your sister)

I sit more blind than sighted, stumbly, and tipsy as I try to explain to these folks that I am simply not able to see their machine well enough to fix their programs anymore, but good news! I found a nice young man who is willing to take on your troubles, but while he is a PAID service, he has agreed to a sliding scale (as I trip on my own shadow) for your machine. (as I get interupted) yes, but if you could just peek at my machine today, I would be happy to call him next time. (i squint and say im sorry, I cannot make out anything on your screen, heck I cant make out anything on my 26 inch screen, so im sorry, you will have to call shawn) as I pick up the phone and dial his # for them, (unable to see the #s on the phone I am clearly struggling as he answers. As I explain I have a client who needs to be seen now, but needs a sliding scale, could he squeeze them in? (I try to sit in the chair and almost miss as I tip towards the edge, not the middle) As my client who is now in front of me keeps interupting that "yes, but I HERE NOW can YOU just peek at it?"

So, NO! folks dont listen. They dont hear me. I may as well be speaking swahieli or some such long forgotten dialect. They keep talking over me to express THEIR needs. Clearly blind to my ragged condition, the fact that I keep rubbing my furrowed brow in pain from the strain, and the fact that I have excused myself 4 times from the room for a potty break due to the blistering bladder infection, but If I could just peek at their machine!

They have arrive UNannouced, unprepared, unable to pay for services which are now required because they keep touching buttons and programs that I ask them not to. I have listened to every one of them bad mouth their spouse, talk smack about their kids, I have hand held when they had knees or hips replaced, and listened with great attention as they cried over financial troubles, begged me to do work for FREE, even tho I see them at the hair salon getting their manicure done or throwing steaks in that grocery store basket, or surprise! guess who made the bus trip to the casino and has pictures to share?! So...part of me is extremely happy to be done. In the last few weeks I have seen just how many were only my "friend" because of what I could do for them...for FREE of course. Bah...I give up.

Dear Dej,

I've seen this thread on my last couple of visits and resisted even reading it because I knew exactly what you were going to say and share with everyone.

I understand you may not care what I have to say or how I may say it and that's fine the choice is always yours.

I have grown well passed this stage you are currently experiencing. Not that it is a good thing or a bad thing, it just is, with me anyway. Several, alright everyone who has responded knows exactly what you are experiencing and it sucks worse than a Dyson vacuum cleaner, not to mention it is painful.

The bottom line with all humans, what they think and care about most is themselves. The best conversation any person seems to have with anyone is when the other person says nothing and lets the talker continue on and most of the time oblivious they are the primary talker and the subject is themselves. However, when it comes to the chronically ill, the treatment is almost overtly rude.

I read some where in this type of situation where people ask, "how are you," 9 out of 10 are only looking for the obligatory, "Fine!" When it goes passed that 50% flat don't care and utilize the tactics you've experienced and the other 50% are glad to hear it thinking, "better you than me."

We are powerless to change them, only ourselves. To protect myself and try to maintain self-respect when asked, "how are you," I look them dead in the eye and ask, "do you 'really' want to know or will the answer 'fine' satisfy you?" What a difference that question made. Even then some would truly listen, most not and that's fine.

We learn quickly once we reach this stage of illness and lack of functionality who our real friends are. I use the qualifier, 1) will you cry at my funeral? 2) will you come to my funeral? Well, if you won't cry or even come to my funeral, why should I place any credence in what you think or say about me? Don't even ask me about the turn-out if there is no food or worse, it rains. We each have to deal with this grossly unfair and uncomfortable situation in our own comfortable way. Thus, I have no answers.

Only know Dej, you are NOT alone and this is why this board exist. Your venting has even been cathartic for me and I thank you for being so forthright. All I can add Dej is you will be in my thoughts and prayers.

Peace be with you.

I just thought I was past the stage of allowing my feelings to get hurt by others. and YES it must be given permission to be allowed in the door. I think several factors are at play.

1. I am grieving for the loss of my hobby
2. I am over tired from having DS here
3. I am frustrated and not yet at peace with the loss of my eyes
4. I always knew folks are ME ME ME centered, but I was surprised at how many elderly and professionals talk OVER me.
5. I know the "but you look so good" thing is at play here.If you look good, you must feel good, no?
6. its ME that needs to make peace with this, not them, and their sympathy, or kind words wont change where I stand on my path. its me that must walk it, they have their own hill to climb.
7. I cant expect folks to mirror my actions, for then they wouldnt be mine, it would just be common practice
8. I need to count my blessings, not my failings.
9. I need to get over myself. I provided a service for these folks. I am not from their town, their circle, their social standing, or their emotional circle. I AM and outsider who was helpful, nothing more. no matter what I do I wont change that.
10. I need to know that only folks who have lived what I live can understand. There are those in this circle who have no idea what its like to be more blind than sighted from optic nerve damage, anymore than I know what its like to be incontinent, or the limits of the wheel chair. So, MS is like a fingerprint. This is mine, and I need to claim it.

Thanks for the pep talks, both public and private. I really did have a moment on my hands, no?

"WOW DEJ!"

The clarity and precise listing in this last post is amazing!

You are "spot on" for so many people here including the lurkers. You've brought thoughts to the forefront of my mind I have not experienced in a long time. Not knowing if I was falsely comfortable keeping them back there or was I really past that point. Maybe it's a coping mechanism and being human we never get past the ability of having our feelings hurt, either intentionally or unintentionally. Much of what you list is simple to identify, simple to say or write, but darn difficult and not easy to do.

Should I have moments of such clarity of thought. You are and continue to be an inspiration Dej.

When he asked about your eyes then cut you off, it was your call where that conversation went next. I'm ****** cause I set something up last night but they forgot & called me too late after rental places closed. Dej maybe next time someone asks how i'm doing, depending on who's asking, i'll ask "are u asking for generic conversation or really give a ----?