friends

[salamandertom]

Well, not all of them, but many of them are just disappointing me. I know what happened to me is scary, but imagine how *I* feel. I should know better than to expect more of people. I have just a couple friends that even care, I don't even know if the other ones WANT to know what is happening with me. I think they probably don't want to know. I have called several people to make plans this week, and noone wants to call back and confirm, they are all blowing me off. I am just miserable. This is alienating. I forgot how much it hurts when people avoid you.

[stalo]

Sasha, I am SO sorry! I am sure your friends are just trying to adjust to your dx. Focus on the ones that show they care & spend your most moments with them!

[heliotrope]

You hit right on it. They're scared. And probably, don't know what to say to you. I've had more than a few people just stop calling over the last year (since I was diagnosed)
Unfortunately, that means that you get stuck figuring a way around it... I'm sure someone can help.

[justacowgirl]

You know..I just don't expect too much out of people.

[Marie12]

I don't have all the answers, but I'd like to tell you the mistakes I've made

I don't have all the answers, but I'd like to tell you the mistakes I've madeIt only took me years to figure out a way that will help me. Yes, I'm still not there yet, but it's taken me years to figure out even a little. I now realize that I am not and never will be the same person I used to be. I am now different and ever changing, both mentally and physically. I have very little mental and physical capacity. One thing I finally realize is that I am not going to try to interact with people who don't understand what I am going through. I know that doesn't sound kind, but I've already constibuted my entire life, dealing with people who don't understand. Now it is very important to make my life as comfortable as possible. And the last several months, that has really helped me. Believe me, it has made a big difference in my life. I don't know if my story will help you or not, but I want you to know that you are very important, and who you deal with now is very important to your mental and physical health, which considering what you are dealing with, is extremely important.
Take care, Marie

[aitch10]

You know..I just don't expect too much out of people.

I kind of feel that way too, but I'm often disappointed

[justacowgirl]

aitch10...

just give them grace.

[salamandertom]

I don't have all the answers, but I'd like to tell you the mistakes I've madeIt only took me years to figure out a way that will help me. Yes, I'm still not there yet, but it's taken me years to figure out even a little. I now realize that I am not and never will be the same person I used to be. I am now different and ever changing, both mentally and physically. I have very little mental and physical capacity. One thing I finally realize is that I am not going to try to interact with people who don't understand what I am going through. I know that doesn't sound kind, but I've already constibuted my entire life, dealing with people who don't understand. Now it is very important to make my life as comfortable as possible. And the last several months, that has really helped me. Believe me, it has made a big difference in my life. I don't know if my story will help you or not, but I want you to know that you are very important, and who you deal with now is very important to your mental and physical health, which considering what you are dealing with, is extremely important.
Take care, Marie

thank you Marie. I am going to follow your advice. I know better than to expect so much of people. I have just always been such a good friend. I have been there for these people, and listened. I need them now, and silence. It sucks. It hurts. I will get over it, but I will not forgive them and when they come looking for a smile when I am sick or something to make themselves fell better I won't give them that. I may be bitter and mean, but I cannot be a lesson or a project for someone. I am a real life person with feelings. I am not a sounding board. I should be able to say things that are hard to hear. No I didn't get this b/c I didn't drink enough water. I got this randomly, and yes it could happen to you. Life is unfair. Yes, your kid could also get some scary unfair things like mine did. Yes it sucks, yes it is unfair. Yes I am a big package deal reminder of all of that.

Sad thing is that I had made some new friends and now even some of them are ignoring me and this diagnosis. I hate it. I should just tell them how I feel, but why bother if they don't ask.

[SpringOwl]

Too tired to talk

I don't know if any of you get to tired to talk but after talking for about 10 minutes I get to tired to talk.

My Mom (who is a nurse) gets very frustrated with me when I am too tired to talk or can't walk fast. She says if I ate better or exercised more or did something right, I would be better.

It definitely hurts when people don't understand. I agree I too have isolated myself and it just works for me. I have lots of friends that don't call or they don't know what to say when we do speak but that's what these forums are so helpful for.

Think of the generations before us who had no technology or medication for that fact. It must have been horrid.

I like myself and keep myself busy with my 10 & 11 year old and for now that sustains me but we will always want things in our life to be different and that's just life.

My Aunt told me once if you can find one true friend your whole life you are very lucky and I believe this now.

Amy

[babygirl_vic]

You really do "find out who your friends are"

Sasha, I have been having the same problem also. I'm 27 and have two boys. And you really do find out who your true friends are, I have a couple friends that absolutely did as much research on MS as I did and they were just on top of it and tried to figure out any and every thing they could do to help me.....then I have several friends that don't even call anymore and when I call or email they will NOT reply. I know how aggrevating it is. One of my friends that has "disappeared" used to blow-up my phone and we'd get together for playdates, go shopping, go have breakfast/lunch and I haven't spoken with her in over a month!! If it weren't for my husbands dad and step-mother I don't know what I would do with my kids on the bad days!! And I have a couple friends that call me at least once a day to check on me and see if I need anything, but I think that's because I voiced my "rage" about the friends that have "disappeared"!! I hope everything gets better for you, but I think everyone on here understands and have gone through the same situation, it will get better in time...

[macarolina]

no idea

one thing to keep in mind-- while your dx is your overwhelming thought process and reality right now, some of your friends likely have no clue. I think it is very difficult for anyone who hasn't gone through a reality changing health or life change to relate to someone who is in the middle of one. I know when I was dx'd, it was all I could think of for 24/7, for months and months. Before my own dx, I don't think I could have guessed how the mind takes on a huge piece of news like that and churns at it so much-- I now find I'm a great resource for other friends who have received first time bad-health news, whether it be MS or something else.

I know that a little outreach goes a long way, and that even a "I know this is a really tough time/mental whammy" is so appreciated. Your healthy friends just have no idea... I tried to cut my friends some slack-- often they didn't know what to say, or if I would think they were prying if they asked, etc. Friends are really important as you go through this journey-- some will be good sounding boards, some will be a source of help (rides, errands, food), some will be laughs-only, and others will be at a loss of how to help/scared of the situation. Priorities of friends will likely shift around during this time, but even those who had backed off at first are back in my life, and that is ok w/ me.

[Marie12]

you're very smart, it will come

Like I said, I don't have all the answers. But I do know that when all this started for me, it was difficult to figure out, "now what?" The prior me used to work full time, and volunteer the rest of the time. I'm not going to tell you what to do, just post some ideas.

Nursing homes today, are basically like vacation resorts, at least the ones I've visited. I like them because they are very handicapped accessible. You can visit, and ask if they need help with bingo or other activities, etc. I really enjoy the residents and their historical stories of memories in their life. I gained so much. I love to hear about history, and they love to tell me about their life in the 1920s.

And/or google for MS groups in your area. Many are around which enables you to meet new people, just similar to you. I was actually surprised the first time I went to a meeting, and found many who had lives similar to me. Or if there aren't any in your area, and you have enough strength, you can organize a MS group in your area. Either post notices in online newspapers, church bulletins, ask your neurologist if you can leave info on the bulletin board in his waiting room.

Like I say, these are not a specific answer for you, but as you can see, I know you will find an interest that you will have interest in, and enough strength to make it comfortable for you. And I know you will meet many people are going through what you currently are stating

***Message broken into paragraphs for readability. Some of our members have vision problems with large blocks of type.***

[jumpinjiminy]

one thing to keep in mind-- while your dx is your overwhelming thought process and reality right now, some of your friends likely have no clue. I think it is very difficult for anyone who hasn't gone through a reality changing health or life change to relate to someone who is in the middle of one. I know when I was dx'd, it was all I could think of for 24/7, for months and months. Before my own dx, I don't think I could have guessed how the mind takes on a huge piece of news like that and churns at it so much-- I now find I'm a great resource for other friends who have received first time bad-health news, whether it be MS or something else.

I know that a little outreach goes a long way, and that even a "I know this is a really tough time/mental whammy" is so appreciated. Your healthy friends just have no idea... I tried to cut my friends some slack-- often they didn't know what to say, or if I would think they were prying if they asked, etc. Friends are really important as you go through this journey-- some will be good sounding boards, some will be a source of help (rides, errands, food), some will be laughs-only, and others will be at a loss of how to help/scared of the situation. Priorities of friends will likely shift around during this time, but even those who had backed off at first are back in my life, and that is ok w/ me.

This.

I don't remember how long you've been going through it, ST, but for me it's been since August. When I started handling it better and reaching out to my friends in my normal way, they got more comfortable with me and things got better. It was the really tough stuff they had a hard time with. Even my therapist had a hard time with that and how long it took me to get through it. That's when the doc had to step in and help.

If neuro doc had done HIS job better, it wouldn't have gone on so long, but alas, water under the bridge. I'm here in one piece and better than before, mentally at least, with a better organized life and more support from my household members and friends, so that's an improvement.

I found out a long time ago, being the always supportive one like yourself, very few people know how to give that back, but almost everyone who needs it knows how to find someone that gives it. It's a lonely place to be when you need it and all you hear are crickets chirping. But when that someone does come along, and there are some wonderfully supportive, soothing souls on this board, their words are like water on parched lips in the scorching midday sun of an Arizona summer.

My post is coming along late here, I've been dragging tail for days. I do hope you're feeling better.