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    Redefining relationships

    One of the most frustrating, and enlightening aspects of MS, for me, has been seeing who the true friends are in my life.

    The most frustrating part is the group of people who have no clue about the disease and suddenly feel they're an expert. I don't mind it when people send me information they've found. I absolutely hate it when people act like you're not fighting if you don't follow their advice and use some "snake oil" remedy they've come across.

    I don't hesitate breaking ties with that group. "Use ozone therapy! It will cure it!" "Read and use this diet book! It cured the author!" "Doctors don't want you healthy! They just want your money!"

    The second group is of those who act all concerned, but won't listen to anything you tell them about the disease and don't have 5 minutes to educate themselves. One minute they're telling you, "It's too bad you live so far away, otherwise I'd come help." and then the next they're telling you, "If you need ANYTHING, call me! I'll be right there to help!" A week or so later, they're trying to get you to come over and help them with something despite telling them numerous times that you're no longer able to do that type of stuff. Want you to drive 35 miles to their house, but in 15 years, they've never, even once, been to your house and have never helped you.

    I have found that I never have to say a word, or explain anything to those who truly care. They drop everything to help and always will. Those who pound the pulpit and swear they're the truly caring person are generally the last I'd call because when it comes time, they've got every excuse for why they can't be there for you.

    Living alone, it has its own challenges as many know. On a positive note, I do thank MS for helping me realize how important some people are and how useless/fake others tend to be. It feels like the garbage area in Star Wars. The walls keep moving in, confining you to a smaller world. Some will work tirelessly to make it stop and help you. Others will get back to you after they catch the great buffet they're having in the casino.

    #2
    "It feels like the garbage area in Star Wars. The walls keep moving in, confining you to a smaller world." skidder

    great analogy! I agree with your whole thread. It is surprising what you will find out, isn't it? I also found out who my "true friends" were, and also those that offered their help but found every to avoid it when it arose.
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

    Comment


      #3
      I went through the realization a few weeks ago that some of the people I'd previously counted as friends are only fine weather ones. It truly hurt because if the boot was on the other foot I would move heaven and earth to make sure they knew they mattered to someone.

      Comment


        #4
        yep

        Originally posted by hunterd View Post
        "It feels like the garbage area in Star Wars. The walls keep moving in, confining you to a smaller world." skidder

        great analogy! I agree with your whole thread. It is surprising what you will find out, isn't it? I also found out who my "true friends" were, and also those that offered their help but found every to avoid it when it arose.
        The one thing MS can't take is my attitude. It can take everything else, but that. I win. I can also decide how I want to spend my time and with whom. I choose to be happy and when I know a person or situation is contrary to that goal, I simply say "no". Those who look at what's in it for them will move on.

        Comment


          #5
          I have learned that when I am sick, nobody comes unless I pay them.

          Lisa
          Disabled RN with MS for 14 years
          SPMS EDSS 7.5 Wheelchair (but a racing one)
          Tysabri

          Comment


            #6
            Ugh

            Originally posted by 22cyclist View Post
            I have learned that when I am sick, nobody comes unless I pay them.

            Lisa
            I'm so sorry to hear that. Fortunately, there are good people, but this disease exposes humanity at its finest. It's amazing to see the religious posts on social apps. I'm convinced those people rarely leave home because I don't see the same numbers exhibiting the same behaviors in public. I think they are trying to convince themselves that they're good people.

            Comment


              #7
              I think that the ones who want to help most are those who can help the least....those who know what it's like to need help. I feel that vulnerable connection!

              Comment


                #8
                Originally posted by 22cyclist View Post
                I have learned that when I am sick, nobody comes unless I pay them.

                Lisa
                Oh wise one. You are correct. The only ones I expect help from are those who are paid.

                People with MS get it and no one else can really put theirself in our position. They are going to continue living their busy lives perhaps with a tiny sigh of relief that its us and not them. I get it as I would have been the same way, possibly attentive in the beginning but not in it long term.

                I expect very little from others and therefore am not disappointed. It is what it is.
                He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                Anonymous

                Comment


                  #9
                  much to think about

                  I believe that much of the apathy we experience from those that we thought could be "counted on," is due to the invisibility of the disease. Please understand, there are certainly those in our lives who decide that we can no longer be counted on; that we are always late... and the list goes on. Often, those we once believed would always "be there," no matter the problem/situation, rationalize and minimize lack of attention as, "I have a life and family that need me."

                  I, personally, have to take responsibility for my failure to reach out for help. I find it very difficult to articulate I need___, fill in the blank. I rarely answer the phone b/c I don't feel like it; nor do I return calls very often.

                  My issue is with family. The first couple of years I was so hurt by family members ignoring me, and hearing what they wanted to hear, that I became extremely depressed. Now, I, to put it bluntly, take what I can get. My mother passed away 10 years ago, and the family that's left are mostly males They can't fix the problem so they become an ostrich, with their head in the sand.

                  My husband will do whatever I ask of him, and I know that I am blessed. I get really angry with him, too often, because he forgets important factors surrounding multiple sclerosis. My 17 year old daughter and I have always been extremely close... she deals with the fact that her mother has MS by pretending it's not there. She counts on me to always be there for her when she has a problem; and that is as it should be. I hope that as she gets older, we can be there for each other.

                  I am grateful for this thread/posts because it has inspired me to TRY. Try answering the phone and try reaching out when I have a need that my spouse can't fulfill. Everyone has to find their path to be okay and to get their needs me. I 100% agree that those friends who now ignore you, need to be let go of--- really, were they true friends pre-MS? There are many that I let go of, and am all the better for doing so...like all of you.

                  Don't give up on finding people who want to befriend you and offer help when you need it; because they're out there. Hugs to all.
                  [COLOR="#Shalom, Suzanne0000CD"][/COLOR]
                  You never fail, until you stop trying__Albert Einstein

                  Comment


                    #10
                    Looking for advise

                    Not sure if I am in right place but I recently started dating a women with MS she is 20 years younger then I 65-45 just for a starting point. I am trying to understand the moods I am by definition a caregiver and honestly old school guy who believes in love at first sight which happened. Anyway I guess sometimes I am overbearing trying to help and maybe or probably move to fast? She says I am smothering her and move way to fast wondering if anyone has any similar experiences.

                    Comment


                      #11
                      Originally posted by Grizz View Post
                      Not sure if I am in right place but I recently started dating a women with MS she is 20 years younger then I 65-45 just for a starting point. I am trying to understand the moods I am by definition a caregiver and honestly old school guy who believes in love at first sight which happened. Anyway I guess sometimes I am overbearing trying to help and maybe or probably move to fast? She says I am smothering her and move way to fast wondering if anyone has any similar experiences.
                      Hi and welcome.

                      Please take this in the spirit that it is intended which is to encourage your reflection. To me your comments raise huge red flags for both of your well being. I'm more of a believer in chemistry on first sight and when I read a 65yo is attracted to 45yo that seems like a no brainer and for some reason women historically seem willing to make allowances a man would never even consider.

                      What is worrisome to me is that not only is this woman significantly younger she also has a chronic, progressive illness and you have said you consider yourself to be a caregiver and overbearing. Quite a turn off imo for an independent, self respecting woman and if it is a turn on consider what kind of person you will be getting.

                      I'm a big fan of therapy for everyone but it sounds like it might assist in exploring why you have sought out an age inappropriate relationship with a person who is by all accounts probably vulnerable. If it actually has the components of a healthy, respectful partnership therapy will only help, imo.

                      The bottom line is that at your age she is the one more likely to need to be your caregiver going forward rather than vice versa so I hope at the very least her insight and boundaries are intact if she decides to pursue this relationship.

                      I do wish you good luck and hope you are able to sort through and reflect on your need to be a self -proclaimed caregiver.
                      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                      Anonymous

                      Comment


                        #12
                        Originally posted by Skidder View Post
                        One of the most frustrating, and enlightening aspects of MS, for me, has been seeing who the true friends are in my life.

                        The most frustrating part is the group of people who have no clue about the disease and suddenly feel they're an expert. I don't mind it when people send me information they've found. I absolutely hate it when people act like you're not fighting if you don't follow their advice and use some "snake oil" remedy they've come across.

                        I don't hesitate breaking ties with that group. "Use ozone therapy! It will cure it!" "Read and use this diet book! It cured the author!" "Doctors don't want you healthy! They just want your money!"

                        The second group is of those who act all concerned, but won't listen to anything you tell them about the disease and don't have 5 minutes to educate themselves. One minute they're telling you, "It's too bad you live so far away, otherwise I'd come help." and then the next they're telling you, "If you need ANYTHING, call me! I'll be right there to help!" A week or so later, they're trying to get you to come over and help them with something despite telling them numerous times that you're no longer able to do that type of stuff. Want you to drive 35 miles to their house, but in 15 years, they've never, even once, been to your house and have never helped you.

                        I have found that I never have to say a word, or explain anything to those who truly care. They drop everything to help and always will. Those who pound the pulpit and swear they're the truly caring person are generally the last I'd call because when it comes time, they've got every excuse for why they can't be there for you.

                        Living alone, it has its own challenges as many know. On a positive note, I do thank MS for helping me realize how important some people are and how useless/fake others tend to be. It feels like the garbage area in Star Wars. The walls keep moving in, confining you to a smaller world. Some will work tirelessly to make it stop and help you. Others will get back to you after they catch the great buffet they're having in the casino.


                        I get it completely I can usually count on one hand the people that will help and those that say they are going to do something and never do it. Then they judge you and when you were health you would help anyone in the world but na I have seen how people are and they wounder why we are the way we are.
                        Good luck though I hope for the best for you. I know that it's not easy I usually try and take care of things myself and as long as I don't raise the Barr to high I won't be disappointed in the way they act or treat me. I don't know if you can get it or not but don't let anyone bully you ether because there's going to be a time when they will try I know that much and sometimes it is needed and sometimes they are way out in left feild so to speak.

                        Comment


                          #13
                          Originally posted by Skidder View Post
                          One of the most frustrating, and enlightening aspects of MS, for me, has been seeing who the true friends are in my life.

                          The most frustrating part is the group of people who have no clue about the disease and suddenly feel they're an expert. I don't mind it when people send me information they've found. I absolutely hate it when people act like you're not fighting if you don't follow their advice and use some "snake oil" remedy they've come across.

                          I don't hesitate breaking ties with that group. "Use ozone therapy! It will cure it!" "Read and use this diet book! It cured the author!" "Doctors don't want you healthy! They just want your money!"

                          The second group is of those who act all concerned, but won't listen to anything you tell them about the disease and don't have 5 minutes to educate themselves. One minute they're telling you, "It's too bad you live so far away, otherwise I'd come help." and then the next they're telling you, "If you need ANYTHING, call me! I'll be right there to help!" A week or so later, they're trying to get you to come over and help them with something despite telling them numerous times that you're no longer able to do that type of stuff. Want you to drive 35 miles to their house, but in 15 years, they've never, even once, been to your house and have never helped you.

                          I have found that I never have to say a word, or explain anything to those who truly care. They drop everything to help and always will. Those who pound the pulpit and swear they're the truly caring person are generally the last I'd call because when it comes time, they've got every excuse for why they can't be there for you.

                          Living alone, it has its own challenges as many know. On a positive note, I do thank MS for helping me realize how important some people are and how useless/fake others tend to be. It feels like the garbage area in Star Wars. The walls keep moving in, confining you to a smaller world. Some will work tirelessly to make it stop and help you. Others will get back to you after they catch the great buffet they're having in the casino.
                          I loved the whole thing you sumed it up perfectly. My family and old friends are the same way.
                          I have a relative that has been getting paid to take care of me and my Outlook is not good at this point.
                          I used to be able to do most of the things on my own and I just can't even get up at times and cook and clean like I used to be able to. Now I used to help him out and anyone else who needed my help and now I'm stuck but I'm trying to get the help I really need. I had an x girlfriend who would yell at me and threatened me and made me feel like I was worthless. And he knew acactly how she treated me if she didn't want to do something. Well same thing all over again. But he's getting paid to take care of me. They all know how I'm being treated and don't do anything about it or they think I deserve it. I can't change the past only the future. So I can pretty much agree with you.
                          Last edited by Seasha; 07-31-2018, 02:03 PM. Reason: edited per guideline #4

                          Comment


                            #14
                            Originally posted by Skidder View Post
                            One of the most frustrating, and enlightening aspects of MS, for me, has been seeing who the true friends are in my life.

                            The most frustrating part is the group of people who have no clue about the disease and suddenly feel they're an expert. I don't mind it when people send me information they've found. I absolutely hate it when people act like you're not fighting if you don't follow their advice and use some "snake oil" remedy they've come across.

                            I don't hesitate breaking ties with that group. "Use ozone therapy! It will cure it!" "Read and use this diet book! It cured the author!" "Doctors don't want you healthy! They just want your money!"

                            The second group is of those who act all concerned, but won't listen to anything you tell them about the disease and don't have 5 minutes to educate themselves. One minute they're telling you, "It's too bad you live so far away, otherwise I'd come help." and then the next they're telling you, "If you need ANYTHING, call me! I'll be right there to help!" A week or so later, they're trying to get you to come over and help them with something despite telling them numerous times that you're no longer able to do that type of stuff. Want you to drive 35 miles to their house, but in 15 years, they've never, even once, been to your house and have never helped you.

                            I have found that I never have to say a word, or explain anything to those who truly care. They drop everything to help and always will. Those who pound the pulpit and swear they're the truly caring person are generally the last I'd call because when it comes time, they've got every excuse for why they can't be there for you.

                            Living alone, it has its own challenges as many know. On a positive note, I do thank MS for helping me realize how important some people are and how useless/fake others tend to be. It feels like the garbage area in Star Wars. The walls keep moving in, confining you to a smaller world. Some will work tirelessly to make it stop and help you. Others will get back to you after they catch the great buffet they're having in the casino.
                            Happy for you <3
                            Last edited by Seasha; 11-01-2018, 05:19 PM. Reason: URL edited out

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