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Major venting..plz don't be offended...

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    Major venting..plz don't be offended...

    Let me give a brief background before my rant. My 32 yo daughter was diagnosed with MS 6 yrs ago. This is not my first experience as my Dad also had MS for 25 yrs before he passed, not related to MS. She and my Grandson live with me as do my other daughter and 2 grandDaughters.
    ..now getting to the point...

    I won't say I 'undcerstand' what she goes thru but believe me we all live it with her. 'She' does not have MS..WE have MS. Why?, because she is such a bear to live with that we all have to walk on egg shells around her until I have reached a boiling point and tell her to just go to bed. Sound crude? rude?..Maybe!
    She refuses to get involved in ANYthing, community, church, volunteer or find a support group. Lazy?..You don't want to hear that word, but let me tell you, if her behind gets off the couch and off the pc more than a few times a day, I will be surprised. Let a friend call to go somewhere and she finds all kinds of energy!

    There is no reasoning with her. Everyone is against her, no matter what goes on it is her fault. Almost paranoid.

    Now I know stress is not good for MS but at what point does demand that the world revolve around them stop??
    As long as She is in a good mood the home is 'normal' and a Real family. We laugh, play, talk and enjoy each other.

    I read many posts about ppl getting invoved in activities, trying different foods even. I have spent hrs and hrs researching MS websites for info to help or disduss with her. The last time she said she was 'tried of hearing all my quack ideas and bulls&%#'. Waiting for 'good' days to come back really takes it's toll on the entire household!

    Sorry so long. I need some input and feedback on how to help her thru these episodes and how to protect the hurt feeling she inflicts on the rest of us all during these times.
    thanks for letting me scream here

    #2
    I understand what you're going through

    My BF is not lazy, but I know how you feel as far as the household being affected by his moods and energy level. Good days for him are good days for both of us. Bad days just screw everything. It's frustrating to have the unknown every day, but I'm trying to get used to it. It helps to know others are going through it too.

    Comment


      #3
      Thaks Augusta! So we are not alone..whew! Yes that helps. Is there ANYTHING that motivates to get involved with anything? I declare when the Drs said 'disabled' she took it to mean 'I can't do anything"..yes it is a quote.
      thanks again

      Comment


        #4
        Sounds like she is depressed

        Maybe find a group in the area for people with MS? Find a therapist for her to talk to?

        I would say, since she is living in your house, there are certain things she should HAVE TO do. I'm sure you can find simple things that will make her contribute to the household work in SOME way. To a certain extent, you have to be understanding of the illness, but also you have to encourage her to be an independent productive adult.

        SHe will live her whole life with this. 32 is not a time to give up on life.

        Comment


          #5
          i think she is depressed. :/

          I was depressed and i won't lie, it still get teary eyed. I am not really concerned with what i can't do the same anymore. my biggest fear is becoming a burden to my family.

          MS does give me mood changes and the heat doesn't help. i have to constantly remind myself to relax. i get irritated easily now. Unlike your daughter, I don't like to bug anyone... so if i need something done.. i will try to do it or if i am in pain..i try to cover it.

          i finally went to my doctor to get meds for my symptoms which i was dealing with for 2 mths now.

          i think she is angry and her way of dealing with it is ignoring it. i was angry too..and some days when its bad...i still am.

          you don't have to walk on eggshells. treat her normally but realize she has limitations. i would suggest going with her on her next appointment.

          you thread is a reminder to me, and maybe others... that MS not only effects those who have it but those around us.

          I am sorry.

          Comment


            #6
            In my opinion MS can make us a bit self-centered based on the survival instinct in all humans and the realization that we may or do need to depend on someone else. Depending on what level of maturity or coping skills we had to begin with and of course any lesion locations that involve affect and judgement it can be messy.

            She does sound depressed and like Augusta Girl said since she lives in your house I would add some ground rules which for me would include counseling and medication if prescribed. MS is a horrible mind screw but if you don't get your business done while you can it is a waste of valuable time. Personally I'm working like a dog now to have some money saved for the time when I am not able to provide for myself.

            I feel for you because I can't imagine having all those people in my house and wonder about the other dynamics that have resulted in both adult daughters not living independently.
            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


              #7
              Agree with everyone that she sounds depressed.

              It took some time for me to convince my bf (diagnosed in April) to seek counseling or medication or both but he finally did. Had he held out any longer, Id have probably taken some time off with him. I have expressed to him how important it is to me for the people in my life to strive to be as healthy as possible physically, mentally and emotionally.

              Also agree that its fair for you to set ground rules if shes living in your house. She needs to contribute to the household (even if it is in small ways, as her abilities will allow) and seek treatment as necessary.

              Comment


                #8
                I couldn't agree with you more about the "we" have MS. I used to be pretty self centered about my MS. I would complain and whine when I didn't feel well, and I just expected that not only would people sympathize, but they would go out of their way to accommodate me. I wasn't helping out around the house a whole lot, or contributing in general.

                I have a *very* understanding partner, but one day when I was having one of my fits I said something like "you don't know what it's like to have MS!" to which he shot back "boy, do I EVER!"

                It really made me stop and think. I realized all this time I was acting terrible (justified or not), I was being completely selfish. Never once did I take his feelings into account. I only thought about how this disease affected *me* and *my* life, not the life *we* had built together. From that moment on I promised myself to always take a minute before I start to rant. I go out of my way to make sure he understands how much I appreciate him being there for me. If I do end up throwing a fit and I am in the wrong, I go out of my way to apologize for acting like a major jerk. I also help out around the house as often as I can, even if I don't feel as well as I could. I can always find something to help out with

                I think we get so caught up in how much MS personally changes our own lives that we forget that it can cause some pretty major collateral damage to those we are closest to and love.

                Comment


                  #9
                  Originally posted by andeolus View Post
                  I couldn't agree with you more about the "we" have MS. I used to be pretty self centered about my MS. I would complain and whine when I didn't feel well, and I just expected that not only would people sympathize, but they would go out of their way to accommodate me. I wasn't helping out around the house a whole lot, or contributing in general.

                  I have a *very* understanding partner, but one day when I was having one of my fits I said something like "you don't know what it's like to have MS!" to which he shot back "boy, do I EVER!"

                  It really made me stop and think. I realized all this time I was acting terrible (justified or not), I was being completely selfish. Never once did I take his feelings into account. I only thought about how this disease affected *me* and *my* life, not the life *we* had built together. From that moment on I promised myself to always take a minute before I start to rant. I go out of my way to make sure he understands how much I appreciate him being there for me. If I do end up throwing a fit and I am in the wrong, I go out of my way to apologize for acting like a major jerk. I also help out around the house as often as I can, even if I don't feel as well as I could. I can always find something to help out with

                  I think we get so caught up in how much MS personally changes our own lives that we forget that it can cause some pretty major collateral damage to those we are closest to and love.
                  What an insightful person you are! I'd like to see this posted in the general forum because we could all probably benefit from remembering that MS isn't a picnic for our family members either and we can't just check out when there are contributions that we can continue to make.
                  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


                    #10
                    Originally posted by Jules A View Post
                    What an insightful person you are! I'd like to see this posted in the general forum because we could all probably benefit from remembering that MS isn't a picnic for our family members either and we can't just check out when there are contributions that we can continue to make.
                    I wish I could take all the credit, but it really took the initial shock of being called out on my bad behavior by my partner to force me to realize what a jerk I was turning into and how that just wasn't acceptable.

                    And to the OP, as a former terror myself I want to say no, you should NOT tolerate that kind of behavior. Everyone has the right to feel comfortable in their own home and shouldn't need to be afraid to upset someone else even if they do have extenuating circumstances. Looking back, I am absolutely ashamed of the way I treated others and using my disease as a reason wasn't right.

                    MS does not give us license to blindly lash out at others and just expect to be excused. I think it's also pretty bad that daughter isn't as active as you are when it comes to research and being proactive. I WISH my mother was as involved as you are! You deserve a pat on the back for what you do. All I can say is hang in there and definitely set some boundaries. Help her understand your side of things. Let her know that you love her and are there for you but understanding and support is a two way street.

                    Comment


                      #11
                      Originally posted by andeolus View Post

                      I have a *very* understanding partner, but one day when I was having one of my fits I said something like "you don't know what it's like to have MS!" to which he shot back "boy, do I EVER!"
                      I love this. It was totally different when my BF and I did not live together. But now I am more affected by his day to day ups and downs. I am the only one who sees what his life is really like--he can't hide it from me.

                      Some days that is a good thing, others a bad thing.

                      Comment


                        #12
                        Originally posted by Jules A View Post
                        What an insightful person you are! I'd like to see this posted in the general forum because we could all probably benefit from remembering that MS isn't a picnic for our family members either and we can't just check out when there are contributions that we can continue to make.
                        I love this quote too! No matter how frustrated I may get with my own physical limitations I know full well that DH knows as well as we're going through.
                        Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

                        Comment


                          #13
                          Thanks to all of you for the replies! I will continue to search thru the site for any info and helps. Please keep posting your tip and hints..you never know who you are helping

                          Comment


                            #14
                            Originally posted by HereToLearn View Post
                            Let me give a brief background before my rant. My 32 yo daughter was diagnosed with MS 6 yrs ago. This is not my first experience as my Dad also had MS for 25 yrs before he passed, not related to MS. She and my Grandson live with me as do my other daughter and 2 grandDaughters.
                            ..now getting to the point...

                            Sorry so long. I need some input and feedback on how to help her thru these episodes and how to protect the hurt feeling she inflicts on the rest of us all during these times.
                            thanks for letting me scream here
                            Did I read this right? You have SIX people living in your house, counting you, too, as I don't think you do? The daughter with MS is 32 years old and she and her son live with you, along with your other daughter and her children? How old are these grandchildren who are sponging off you? Wow, you must be a very giving person!

                            The problem seems to be that they're taking advantage of you and your good nature. It is your house and of course you have the right to set rules, as other posters have said. They do not have the right to have everything done for them while they sit and whine about how everythng happens to them, and have a poor me attitude.
                            As far as possible without surrender, be on good terms with all persons.

                            Comment


                              #15
                              Yes Des..You read right. The Daughter with the 2 Grands, ages 10 & 12 is here for better schools for the girls. A new and better job is about to happen for her.
                              The other Daughter and Grand Son ..was the reason for writing, are here also.
                              All I can say is, I guess ppl would have to live here to actually believe what I have to say..lol
                              Bottom line is..(and feel free to assume whatever)... if this heat and weather dosen't break SOON, I'm not sure how much more I can tolerate it..or it's effects cause a melt down within the home.
                              She had read the origional post and unhappy is only a tip of the reaction, and will probably read this one too.
                              I have my health/mental/hurt limits too. It is my sincere hope that others can help or at least let her know she is not alone in this Life Fight..because she totally shuts me down/out. Sorry yall but I Do have feelings too. As of tonights episode..I'm just done for a while.
                              I have my own healing to do for now. God knows I hope she finds somewhere/one for help, for now theres just nothing left for me to do except be here for her..IF this damned MS would allow her to Reason and not just react. I'm not sure anyone dx with it sees what it does to themself ..and if only yall would hear what others try to say and not be so defensive and take it so personal. Yes people..us 'Others' hate it as much as you do..maybe more.

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