Announcement

Collapse
No announcement yet.

Special Threads For VIP Members

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #46
    I find this incredibly sad and infuriating

    Originally posted by Daisycat View Post
    Kitty

    If someone wants to start a thread I can be positive and help with I’m there. Someone needs support about their pet I’ll be positive. About this disease I can’t.

    Someone is struggling in school... I can relate. A 50 page paper while working full time wasn’t fun but positive about this disease can’t do it.


    I hope I have decades , but I know my limits and it’s a very very fine line. I’m going to live like I have months because I don’t want regrets. I’ll keep doing everything I can to be healthy but I’ll not be positive about what I consider a death sentence.

    And most of my posts aren’t about accepting this disease. They are now related to issues such as relationships and drs and what they can force on me.

    Ive developed a good relationship with dr google.

    I really appreciate your words kitty I really do. I just feel like my entire life is a waste and a mistake because I have this. It is what it is though so I’m going to live every day as I’d it is my last and hope for decades before the line is crossed.

    You living in a selfish bubble where only YOU are right. How could you not even care an ounce about the rest of the folks on this board after all the attention you have received?

    I don't want new members to think MS is insurmountable. It's not a death sentence. You can live a long, happy life with MS. I find it heartbreaking that you can't see past your on problems in order to have sympathy for others. Would you treat an animal this way? Probably not. I come here because everyone is nice and they can really pick you up when you are down. But, I also make it a point to post on other's threads because I want them to know someone is listening and cares. You only care about yourself.

    I don't want you to leave the board. I appreciate your feelings and your right to express them. The problem is, you don't appreciate anyone else's. I really hope you can find it in your heart to think about others on this site who also need attention.

    Comment


      #47
      Originally posted by kittysmith View Post
      You living in a selfish bubble where only YOU are right. How could you not even care an ounce about the rest of the folks on this board after all the attention you have received?
      I continue to be surprised and disappointed by the ongoing and widespread concern with equity over who is getting the most attention.

      I also feel like there is a significant amount of piling on one member and that isn't fair or kind.
      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


        #48
        Support

        Originally posted by Daisycat View Post

        Someone needs support about their pet I’ll be positive. About this disease I can’t.
        And this sums it all up right here. The purpose of these boards are to support each other who have MS or whose loved ones are impacted by MS.

        We are here because we SUPPORT each other and we GAIN SUPPORT from each other.


        Here's a few words that the dictionary uses to describe support:

        a source of comfort or encouragement.

        "he was a great support when her father died"

        synonyms:

        moral support · friendship · strengthening · strength ·

        encouragement · buoying up · heartening · fortification · consolation · solace · succor · relief · easement · bucking up · comfort · help · assistance · tower of strength · prop · backbone · mainstay

        When we offer our support by responding to threads, we are usually offering these things. We take time away from ourselves to reach out to others. We look back to the experiences we've had and we extend encouragement to others to get through the hard times. We offer tips to each other to help.

        Others may never even join in the conversations--for whatever their own reasons--but they still read this information--they may gain support by just know they are not alone in this journey.

        I wonder, if you continually throw away the support people have offered, and you aren't willing/able to offer support to others, what then, is the purpose?


        IntoDust, thank you for bringing up this topic so that we all remember what the boards are about. People SUPPORTING each other. All of us.

        Kitty, thank you for being real and speaking frankly.

        Comment


          #49
          Kittysmith - I think the volume of activity on a post is just based on what people feel they can relate to. Lots of people come to ask questions, but rarely post on other threads.

          FWIW, I think the high volume on DC's posts just reflect some of the best things about this board, as well as the worst.

          The best - what we all saw was someone struggling, a struggle we all went through in diagnosis. A lot of people offered encouragement and advice to help get to acceptance and some type of truce with MS. For most of us, that is what has worked in life and we wanted to help someone else get there. We all related to the struggle.

          The worst - myself included, we kept trying to offer the same help even though DC stated she did not want that type of help. Why - for me, because I interpreted her posts as someone hurting and unhappy in life, whose denial strategy didn't seem to be working for her based on what I saw as contradictions in posts. I was ignoring her written words that she was ok and not paying attention to what she was seeking in her posts. I wasn't used to help being rejected and was frustrated by it. I couldn't understand her choice in life. But it dawned on me finally, it is her choice.

          My takeaway - I offer what I perceive to be insight once, if rejected, I drop it. If I can help with the help requested, then I will. If I can't because I can't relate or don't understand it, I will just not post. This is my takeaway for all posts, not just one person's.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #50
            Originally posted by kittysmith View Post
            You living in a selfish bubble where only YOU are right. How could you not even care an ounce about the rest of the folks on this board after all the attention you have received?

            I don't want new members to think MS is insurmountable. It's not a death sentence. You can live a long, happy life with MS. I find it heartbreaking that you can't see past your on problems in order to have sympathy for others. Would you treat an animal this way? Probably not. I come here because everyone is nice and they can really pick you up when you are down. But, I also make it a point to post on other's threads because I want them to know someone is listening and cares. You only care about yourself.

            I don't want you to leave the board. I appreciate your feelings and your right to express them. The problem is, you don't appreciate anyone else's. I really hope you can find it in your heart to think about others on this site who also need attention.

            I do agree with this post. I come here to get answers to questions about MS and the different symptoms. It's such a complicated disease!
            Marti




            The only cure for insomnia is to get more sleep.

            Comment


              #51
              Originally posted by pennstater View Post
              My takeaway - I offer what I perceive to be insight once, if rejected, I drop it. If I can help with the help requested, then I will. If I can't because I can't relate or don't understand it, I will just not post. This is my takeaway for all posts, not just one person's.
              Good take away, pennstater!

              Personally, I don't have any 'extra' emotional or mental energy to waste on anger or frustration (or other negative emotions), especially here at MS World.

              Take Care
              PPMS for 26 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #52
                Thank You

                Kitty, thank you for being real and speaking frankly. [/QUOTE]

                I feel bad speaking frankly. I don't want to hurt anyone's feelings. I don't want to discourage anyone from speaking honestly. I also don't want new members to come on this site and think their life is over because they have just been diagnosed. To give us a list of the things one is willing to talk about is not looking at the big picture and showing a glaring lack of empathy. I come here to both get and give support. I appreciate everyone's opinion.

                Comment


                  #53
                  Pennstater


                  I think I have started to say I am not going to be positive in my threads , but for the most part I avoid posting questions here now since my view of this disease is extremely different than anyone else here. When I can have my attention on other things *– my real job and my side jobs , working out , plus other stuff I can be content. When I am reminded of the reality of how I know my life will end up I am miserable and wish I had never been born. I am sorry if that offends anyone but it is how I feel and I am not going to change that ever.

                  As for copays as of this year it is still counting to my deductable , but knowing any year could basically be my last is kind of upsetting.. but it Is what it is and that is another reason I can never be happy. I know that my semi acceptable life could be stolen even more than it already has.

                  And my “truce” with this curse is as long as it stays away I’ll avoid my trip. I can’t make any other truce because I refuse to live a life without my freedom.

                  Kittysmith

                  Do you REALLY want me posting my opinion on this disease on someone else’s thread. I can tell you right now it would be negative and I think that is kind of selfish for someone wanting help. I am not going to change how I see this disease. Denial and avoidance are the ONLY thing that has made my life tolerable now.


                  And no I do not have a long and happy life with this disease. I have however long until I cross that line and that could be one second or 10-20 years, but I am honest enough to know I will never retire on my animal rescue like I wanted. And I would do everything possible to help an animal who was suffering , but if the animal was suffering from something that there is no cure for and they were only getting worse and losing interest in daily activities I would not force their owner to make them suffer. I know the rules for animals and people are different, but allowing an animal to live in constant pain is cruel just like it is in humans.

                  If you want me to post in other people’s threads I can gladly add my negative thoughts, but I think it is more respectful to NOT do that. I respect other people’s view; I just know that it is not one I will share. I will never be happy losing my independence, vision, ability to work and walk, control of my bowels/bladder, plus 1000 other things I know could happen. If someone can be positive about that great for them, I can’t and that is why I am doing that I said and living everyday as if it is my last. I am not planning a trip anywhere just yet, but I don’t want to regret anything when that time does come.


                  And trust me I have looked at the big picture. I know what this disease can and will do and I refuse to live like that. I am sorry if other people can’t accept that but it is my “life” and I have the right to do with it as I want.

                  Jules ,
                  Agree 100%.


                  Hsmaldo

                  I don’t respond to other people because denial and avoidance isn’t exactly what most people want to here. Most people also don’t want to hear about my planned trip once certain things happen and because of that I have no advice for anyone because I do view this disease as a death sentence. As I have said before I died on September 21 of 2017 and am basically just occupying space. So since my view is so very different from everyone else I try to avoid posting on other threads.

                  Comment


                    #54
                    Originally posted by Daisycat View Post

                    Kittysmith

                    Do you REALLY want me posting my opinion on this disease on someone else’s thread. I can tell you right now it would be negative and I think that is kind of selfish for someone wanting help. I am not going to change how I see this disease. Denial and avoidance are the ONLY thing that has made my life tolerable now.


                    And no I do not have a long and happy life with this disease. I have however long until I cross that line and that could be one second or 10-20 years, but I am honest enough to know I will never retire on my animal rescue like I wanted. And I would do everything possible to help an animal who was suffering , but if the animal was suffering from something that there is no cure for and they were only getting worse and losing interest in daily activities I would not force their owner to make them suffer. I know the rules for animals and people are different, but allowing an animal to live in constant pain is cruel just like it is in humans.

                    If you want me to post in other people’s threads I can gladly add my negative thoughts, but I think it is more respectful to NOT do that. I respect other people’s view; I just know that it is not one I will share. I will never be happy losing my independence, vision, ability to work and walk, control of my bowels/bladder, plus 1000 other things I know could happen. If someone can be positive about that great for them, I can’t and that is why I am doing that I said and living everyday as if it is my last. I am not planning a trip anywhere just yet, but I don’t want to regret anything when that time does come.


                    And trust me I have looked at the big picture. I know what this disease can and will do and I refuse to live like that. I am sorry if other people can’t accept that but it is my “life” and I have the right to do with it as I want.


                    Actually, Daisycat, I'm sick of all of this. Enjoy your misery. Take care. I still hope the best for you. Beyond that, see ya.
                    Last edited by Mamabug; 02-01-2019, 10:11 PM. Reason: Fixed quote symbols

                    Comment


                      #55
                      Once again everyone... be mindful of what you post here. There actually are children reading. They don't need negative, depressing posts on their minds. I know some of our situations are downers and some people really need a sympathetic ear. But it seems like that ship has sailed as far as the recent prolonged posts and there doesn't seem to be any more benefit from repeating and repeating.

                      Remember, kids take everything to heart. And most adults don't need or want to hear too much about these subjects either. We just want answers and suggestions about dealing with the here and now of MS.
                      Marti




                      The only cure for insomnia is to get more sleep.

                      Comment


                        #56
                        I think that this thread is really beginning to speak for itself and is proving the point of why I posted this in the first place.

                        Before going any further, there is one misconception that I believe needs to be cleared up: When I brought up the amount of attention given to a certain member I didn't mean to imply that anyone else was jealous or wanted the same amount of attention for themselves. From what I've experienced here, most of us are grown adults and do not exhibit attention seeking behaviors in an attempt to feel validated or important.

                        Instead of suing the word attention, perhaps I should have said "focus". It seems that "attention" has been misconstrued and has become something of a dirty word. So, I will say: By putting so much focus onto one member we are losing sight of what these boards are all about. This is a community in which we are supposed to share with each other. We are supposed to both give and receive here. When the focus turns onto a sole member it can leave many of us feeling we are giving, giving and giving until we have nothing left to give. This person has received so much wisdom and encouragement but has given very little, if anything at all, back into the community.

                        Now, back to the point of this post.
                        There seems to be a very real disconnect between what this person needs and what they are getting. It has been made clear that they do not want or appreciate the encouragement, advice, support, wisdom or even the facts in most cases. No matter what opinion anyone gives it is flat out rejected and at this point it comes off as a compulsion to be oppositional and argumentative.

                        You can not help someone who doesn't want it.

                        No one is going to expect everyone to agree with them. We all come from different walks of life and we're all on a different path as far as the course of this disease will take us. If I took the time to reply to every person who disagreed with me on here, the page number would be much higher than it currently is. I'm not going to counter everybody's response in the vain attempt to make sure my opinion is heard over and over again. I'm pretty confident all of you know exactly how I feel about this.

                        This post wasn't meant to be a pile on but considering what has been going on the last few months, I believe that it needed to be addressed. There is nothing unfair or unkind about it. In fact, it shows that you will eventually receive exactly what you give.
                        “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

                        Comment


                          #57
                          Originally posted by IntoDust View Post
                          I think that this thread is really beginning to speak for itself and is proving the point of why I posted this in the first place.

                          Before going any further, there is one misconception that I believe needs to be cleared up: When I brought up the amount of attention given to a certain member I didn't mean to imply that anyone else was jealous or wanted the same amount of attention for themselves. From what I've experienced here, most of us are grown adults and do not exhibit attention seeking behaviors in an attempt to feel validated or important.

                          Instead of suing the word attention, perhaps I should have said "focus". It seems that "attention" has been misconstrued and has become something of a dirty word. So, I will say: By putting so much focus onto one member we are losing sight of what these boards are all about. This is a community in which we are supposed to share with each other. We are supposed to both give and receive here. When the focus turns onto a sole member it can leave many of us feeling we are giving, giving and giving until we have nothing left to give. This person has received so much wisdom and encouragement but has given very little, if anything at all, back into the community.

                          Now, back to the point of this post.
                          There seems to be a very real disconnect between what this person needs and what they are getting. It has been made clear that they do not want or appreciate the encouragement, advice, support, wisdom or even the facts in most cases. No matter what opinion anyone gives it is flat out rejected and at this point it comes off as a compulsion to be oppositional and argumentative.

                          You can not help someone who doesn't want it.

                          No one is going to expect everyone to agree with them. We all come from different walks of life and we're all on a different path as far as the course of this disease will take us. If I took the time to reply to every person who disagreed with me on here, the page number would be much higher than it currently is. I'm not going to counter everybody's response in the vain attempt to make sure my opinion is heard over and over again. I'm pretty confident all of you know exactly how I feel about this.

                          This post wasn't meant to be a pile on but considering what has been going on the last few months, I believe that it needed to be addressed. There is nothing unfair or unkind about it. In fact, it shows that you will eventually receive exactly what you give.

                          Once again... agree. Move on. One thing... if anyone is planning the future... tatoos, trips etc, they are still hanging onto life and see a future. Maybe just a little alarmist in character.
                          Marti




                          The only cure for insomnia is to get more sleep.

                          Comment


                            #58
                            Dcat,

                            It seems that you are looking at a binary choice when it is a continuum. Instead of happy vs. denial or happy vs. Switzerland, there is acceptance and resilience in the middle. The goal for life is not happiness anyway. The goal is purpose and meaning. If you need an extreme example, there is Stephen Hawkings. The man managed an affair while in a wheelchair.

                            In regards to your fasting- I was reading that the 16/8 is also effective.

                            Comment


                              #59
                              Daisycat --

                              Originally posted by Temagami View Post

                              ... acceptance and resilience in the middle.
                              Good advice. Look for a middle ground.

                              No one expects you to be happy about having MS.

                              But living in denial just isn't reality or emotionally healthy.
                              ~ Faith
                              MSWorld Volunteer -- Moderator since JUN2012
                              (now a Mimibug)

                              Symptoms began in JAN02
                              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                              .

                              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                              Comment


                                #60
                                Originally posted by IntoDust View Post
                                Is it a common occurrence for certain members of MS World to not only monopolize the boards, dominate the conversation and even get special threads with their username in the title? It’s turning into a bizarre VIP treatment.
                                Or is this a rare situation?
                                I haven’t been a member for very long so I’m hoping one of the older members can chime in here.
                                I haven’t been posting much and to be honest, I’ve been really turned off by what the boards are turning into. I said months ago when I first began posting that I was disappointed but I held out hope that things would turn around. They haven’t. While it’s a little quieter right now, it’s a lull and it will start back up again. It’s a predictable pattern at this point.
                                I understand wanting to help someone in need, but at what cost? Is all of this special attention actually helping in a meaningful way or is it feeding into other issues such as a need for attention?
                                Just look at the amount of replies in specific threads and tell me what it says to other members who have their own questions, issues, rants or stories to share.
                                Is the “increased traffic” really worth it if others don’t feel they have a safe place to share their equally valid posts?

                                An accurate assessment.
                                Marti




                                The only cure for insomnia is to get more sleep.

                                Comment

                                Working...
                                X