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  • September 2, 2012 at 1:09 am #7424


    So, as  I’m sure a lot of you know, I’m 19 and I was diagnoised shortly after my 16th birthday.

    I wanted to know from others out there who have their family helping them out; do you ever feel like you’re taking advantage of them, or that they’re doing more then they should be doing?

    I mean my mom has come with me to every possible appointment that she can make along with helping out her husband as he’s been sick the past year, and working a full time job.

    Sometimes I feel like my disease is a burden to her, taking time away from things that she could be doing during those times.

    I love my mom, keep that in mind, but I feel bad when she has to miss work to come to my appointments with me, or when she has to leave early for them.

    September 5, 2012 at 8:21 pm #7626


    I’m pretty sure your mom doesn’t mind being with you at all. Now that I have kids, I know that nothing would stop me from being there for them if they were going through something scary and uncomfortable. You shouldn’t feel bad. You should also tell her how you feel and see what she says.

    When I went through all of my first experiences with MS, I kinda closed off everyone. It must have been really hard for my parents. I’m going to see them soon and I think I’m going to ask them what they remember from those days.  That was 100 years ago so they probably don’t remember anything.



    September 20, 2012 at 4:21 pm #7686


    Hey KaylaS,

    I’m definetely with Aaron on this!
    I don’t have my family helping out, but my boyfriend. Sometimes I feel like taking advantage of him too but he assures me that it is not like that. He loves supporting me and is very sorry whenever he can’t make it to one of my appointments.

    I think your mom being with you every possible step along the way is a great gift. This shows how much she loves you and cares about you.
    When I was diagnosed at the age of nineteen my mom didn’t come to any of my appointments because she was preoccupied with work (she could have skipped, she is one of two bosses of a small company and her collegue and employees would have understood completely). She skips all the time to see my sister horsebackriding, but she never accompanied me to my neurologist. She occasionally panics and she wanted to have a say in my decision about the meds I’m taking but that’s basically it. I never felt real emotional support from her and I probably never will.
    So what I’m saying is: Be happy that your Mom is with you and thank her for that (you know, with the little things ;D) but don’t think you are a burden for her. I’m positive that she loves dedicating her time to you and that is the greatest thing a mother can do.

    October 6, 2012 at 12:44 am #7729


    I am going to speak up as a mum of a 21 year old. (Though I am the one with MS, not my son.) IF my son had MS or any other health, I would drop everything to be by his side and support him. It’s not even something I would have to give a thought to. It’s what mothers DO. I would never want my son, or anyone I love and care about to think that they were a burden to me or that they couldn’t come to me if they needed my help.

    A few months ago, I was in Vancouver for an evening meeting. Just as I was boarding the skytrain to commute home, he texted me to tell me he had seriously injured his hand (sliced it wide open when a glass broke while he was doing dishes) and asked if I could meet him at the ER. He no longer lives at home, but in that moment, he wanted his mum. I went straight there and sat with him while they stitched him back together. (It was pretty painful and gruesome.) It was late, I had not had dinner, I was exhausted, but never occurred to me not to be there. It’s just what mums do.

    I know it can be hard to ask for and accept help. It can feel like you are putting the other person out. The thing is, it’s an opportunity for someone else who loves you to feel like they are doing something to help you. When you get diagnosed with MS, it’s not just YOU getting diagnosed. Everyone who loves you feels the impact of it too and usually they wish they could DO something. By letting them support you when you need someone just to listen, to drive you to the doctor’s or to go with you to your appointments, it allows them to feel like they are helping you fight MS. It’s their way of letting you know they’ve got your back and you are not alone. It’s a gift.


    October 17, 2012 at 8:39 am #7780


    As a mom of a 17 year old girl who was diagnosed with MS at the age of 16, I accompany her to every appointment. When she’s on the phone for her monthly check in with MS Lifelines I try to stay in the room and listen; making sure she lists all side effects, symptoms and signs, unless she asks me to leave the room.

    When she’s too overwhelmed with everything, I do her injections for her and though it scares me beyond belief and I could never imagine myself doing it before, I now do it without second thought. Its the least I can do for her. I think I speak for most parents when I say that I would take over her burden in a heartbeat, so that she can live a healthy, carefree life she is supposed to have.

    I just hope to know when to back off and give her space, but I am confident that she will let me know. Until then,  you couldn’t tell our shadows apart.

    All the best to you, and don’t shut your mom out unless her attention is smothering you.

    October 26, 2012 at 11:48 am #7882


    Hey girl hey 🙂

    First off as soon as i saw it was you posting i wanted to sing

    BLACCCCCCK socks they never get dirty the longer you wear them the stronger they get:) Hope that made you smile

    Second of all, I am positive you Ma does not mind doing appointments for you. One thing having MS has shown me is that the people who love you will do anything to be there for you when you need it. If I could I would fly myself to you when you need me.

    My Ma has been involved with all my appointments, as I have moved away for school now she is involved and on the phone with me for everyone! My best friends and Aunt who all live near me at school volunteer to do my monthly IVs with me, rather then see me go alone. In fact my Ma often calls me before I call her for my appointment, or sits waiting desperately for my call after I meet with my neurologist. I couldnt keep my Ma away! 😉

    Basically never feel like a bother to the ones who love you, to the ones who really love you, you are most defs not a bother!

    Only one more thing to say to you girlly and it is …..

    Ooooooo there is a camp i know … 😉

    Miss ya 🙂

    Jess xo

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