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Just venting - parents not understanding MS

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    Just venting - parents not understanding MS

    There is this huge heat wave going on in Europe which unfortunately has made me bed ridden for days now. I can still get out of my bed and stuff but it is SO tiring. We have no airconditioning in the house, just a small fan that blows hot air onto my body but it's some heat relieve.

    The frustration, are my parents. They just don't get it and they never will. My room is an absolute mess and I know that but I just don't have the energy to clean it all up. I've been trying to clean it half an hour a day but even that is too tiring. It's also so frustrating to clean a room when you have certain disabilities. I have to sit on the floor while cleaning the floor. I can't bend down to pick up things so I have to sit on a yoga ball. Using a wet towel to clean off tables and what not means my hands will cramp up, hurt and feel like 200 pounds. I mean there is just nothing fun about me doing chores around the house if it means I'll get confronted with this disease all the time.

    Because I never help around the house and my mum does most of the cleaning around the house I decided to clean the kitchen this week. I was so tired after it but I was happy I could help a bit. With the heat wave I haven't been doing much, just staying in my room watching some films on my laptop.

    My mother got mad at me for doing nothing around here, so I told her I have MS and I do my best but my best isn't good enough for her. It's either everything or nothing. So she goes "so? I have 2 hernia's in my back ya don't see me complaining about doing chores around the house". At that point a switch flipped and I turned into the Hulk I'm afraid. My father later confronted me about it saying "what's your problem"and I told him my mother is the problem. She's the one telling me I abuse my disease whenever I want so I don't have to do chores which is NOT the case! He goes "well she's saying the truth, you never do anything around here do you?" so I explain to him again that I have MS and that it's hard. He goes on this tangent that I can still help for 15 minutes around the house doing little chores etc.


    Honestly am I crazy or what? Is it so wrong of me that I seriously sometimes do not care how messy the house is because I'm too busy dealing with the MS? What's wrong with them that they can't acknowledge my disease and be kind, instead of shouting every day that I don't do a darn thing in this house? If you're a parent and have a kid with MS or you're someone in this position or was please give me some insight because I can't take it anymore.
    Last edited by Seasha; 07-04-2015, 12:42 PM.

    #2
    try to find some kind of information, Multiple Sclerosis International Foundation http://www.msif.org/
    i don`t know if you can find it, but, "MS for dummies" is excellent. best of luck!
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

    Comment


      #3
      Look this is a tough spot for both sides. MS is miserable both physically and emotionally for all involved and any time someone is living in someone else's house there is likely to be discord.

      I think educating them on MS would be helpful but I also think it might be worthwhile to attempt to either come up with a list of duties that you are able to perform on a regular basis to help out the household or find a way to move out of their home.

      Try to avoid getting nasty with your parents because it sounds like they are supporting you financially and struggling with their own problems also. Best of luck to you and I'm so sorry all of you are having to deal with this thanks to this horrible disease.
      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


        #4
        I am so so sorry that your parents are being so diffucult. I don't have any words of wisdom just tons of hugs. Others do not get it.
        Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

        Comment


          #5
          Originally posted by Jules A View Post
          Look this is a tough spot for both sides. MS is miserable both physically and emotionally for all involved and any time someone is living in someone else's house there is likely to be discord.

          I think educating them on MS would be helpful but I also think it might be worthwhile to attempt to either come up with a list of duties that you are able to perform on a regular basis to help out the household or find a way to move out of their home.

          Try to avoid getting nasty with your parents because it sounds like they are supporting you financially and struggling with their own problems also. Best of luck to you and I'm so sorry all of you are having to deal with this thanks to this horrible disease.
          Honestly I've tried educating them about it so many times and for some reason they just won't listen. It's as if they don't want to know and just stay ignorant. My father hasn't even asked for a while how I'm dealing with this disease even though I go to the hospital every month for the Tysabri. My mum will quickly ask how the Tysabri went and answer with "ok".

          As far as financial, they haven't really been supporting me. I pay pretty much everything from my phone bill, school (uni) to my own clothes. Which I don't mind but it's getting more difficult as I can't work anymore because of the MS.

          Maybe it is time to move out. That way they don't have to deal with me or the MS. Thanks for the support guys!

          Comment


            #6
            Good luck with whatever you decide and please keep us posted.
            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
              No personal experience other than I would probably be driven insane if I had to live with either parent. Every time I took my meds my mother would say, "that's poison you know. You're going to get cancer. You're going to wind up in a wheelchair."

              Is it possible to change your sleep schedule so that you're up really late and sleeping during the day? I do this during the summer just because it comes naturally to me. This would have advantages for you, like you can shuck down to boxers and a bra (or just boxers if you're a dude). It would be cooler at night, quieter outside, and best of all your parents would be unconscious. Doing that and putting a cool washcloth on the back of your neck may help. Here in the U.S. the MS Society will buy you an AC unit if you can't afford it. Maybe your parents would change their tune if you were Bringer of the Free Air Conditioning. I got a spray bottle and do the back of my neck and wrists and it helped a great deal. There are also evaporative coolers that are cheaper than a regular model.


              I also read an article, I think it was entitled Are you Afraid of the Sun. The author will take a cold shower and use that to buy her time so she can go out in a sun for a little bit and take her daughter to school. I am sorry that your parents are lacking in empathy. Depending on where their frustration is stemming from it may be impossible to appease them, but it's not your fault.

              Comment


                #8
                This is a much more common problem than one would think.

                I do not live with my parents, but I do live near them.

                My Mother is absolutely vicious and not understanding about my MS. Additionally she is embarrassed and hurtful. No empathy whatsoever. She has her good moments, but not many. She is constantly reminding me how much her two children let her down. My sister was an OB/GYN and died unexpectedly. I was a Military Officer, but got MS. She blames both of us.

                Just talking to her makes me depressed. Some of her comments make me retreat to my bed for days.

                Look very carefully at your finances and if you can escape them, please do so. If you can't leave the home, get a good therapist...you will need it. I was lucky to be financially independent.

                My parents were with me at diagnosis and went through counseling...waste of time. I am the one that had to change in order to have any sort of relationship with them. To be honest, if I was not their only living child, I would have "divorced" them years ago. My Upbringing prevents me from doing so. I try to take the higher road...each and every single time.

                I have lots of friends...but I trust NO ONE. And I never will.
                Katie
                "Yep, I have MS, and it does have Me!"
                "My MS is a Journey for One."
                Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                Comment


                  #9
                  Sending huge virtual (((((())))) to you and Katie. You are not crazy! It's bad enough when friends and acquaintances seem to misunderstand and lack compassion, but it's extremely hurtful when our family does the same thing.

                  Do you have access to counseling? It has been an emotional lifesaver for me. It helps me feel understood and it gives me skills to deal with these situations, since I can't change peoples' attitudes I can only change my attitude towards them. And hopefully walk away! You should not have this type of stress when you're not feeling well. Our situation is difficult enough!

                  dyin has some good suggestions…I hope you can find a resolution to this soon. We're all behind you.

                  Comment


                    #10
                    I'm finding that my adult children and one of my sisters don't get it either. This is the very first time I can't do for them. And they don't get it.

                    Comment


                      #11
                      Originally posted by KatieAgain View Post
                      This is a much more common problem than one would think.

                      I do not live with my parents, but I do live near them.

                      My Mother is absolutely vicious and not understanding about my MS. Additionally she is embarrassed and hurtful. No empathy whatsoever. She has her good moments, but not many. She is constantly reminding me how much her two children let her down. My sister was an OB/GYN and died unexpectedly. I was a Military Officer, but got MS. She blames both of us.

                      Just talking to her makes me depressed. Some of her comments make me retreat to my bed for days.

                      Look very carefully at your finances and if you can escape them, please do so. If you can't leave the home, get a good therapist...you will need it. I was lucky to be financially independent.

                      My parents were with me at diagnosis and went through counseling...waste of time. I am the one that had to change in order to have any sort of relationship with them. To be honest, if I was not their only living child, I would have "divorced" them years ago. My Upbringing prevents me from doing so. I try to take the higher road...each and every single time.

                      I have lots of friends...but I trust NO ONE. And I never will.
                      Thanks everyone for responding, I've read every comment and it helped a lot. Sorry for responding so late, had some stuff to deal with.

                      After this whole ordeal my mother came up to me and said I had to apologize, to this day I still don't know for what I had to apologize. I did however, just to keep the peace. Strangely enough they bought me a second hand car after this. Guilt feeling, I don't know? But I'm trying to pay the insurance and what not with my own money which is not easy as a young driver. But I have to, just to get my driver's license as fast as possible so that I can leave this place for my own sake.

                      We're back to square one however as I've had another fight with my mother. @Katieagain: sounds like you're describing my mother lol. She's vicious as well and the hurtful comments she'll make sounds as if she hates me. She hates me for being the loser daughter with MS. I can just tell in her attitude she does. If I eat with my left hand she'll get pissed and tell me to eat with the right, even though that arm can't lift up a fork at that moment. Like whut? Yesterday she asked me if I could go with her to an appointment and I told her my leg was hurting but I'll see in the morning how I feel and if it's better I'll go. She got mad at me, swore never to talk to her again and that I as a person have no use at all. Ehm okay then? Same day she yelled at me that I had to pay the car back, I was like, ehm no problem you'll get that money back. If you're going to give something to me as a "gift" and use it in each argument as blackmail then there is no point to it.

                      This time she expects me to say sorry again, but it's not happening. If this is it, then so be it. But I will not let myself treat like a dog, I don't deserve that. So if she wants to loose me then so be it.

                      @Katieagain: I respect you a lot for being able to deal with her like that. I honestly hope for your sake she will change someday and treat you with the respect you deserve. No one should be put down mentally by their own mother.

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