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  • #75465
    Feeling alone. Partner with Bethlem myopathy/ulrich

    Hi. As I write this I feel like the worst partner but equally I am so full of sadness. I try so hard to maintain a normal life and have things that I do for me but these things always come across as ‘fads’ because I can never adhere to them. My partner can pretty much lead a normal life but suffers from extreme fatigue if he over exerts himself. He has a job, working from home, and we have 2 children (one of which also has MD). The only constant I have, that is me, is my education. I’m in the third year of my degree but despite getting good grades in my previous years I haven’t had as much support from my partner this year. He is trying to do the right thing according to society and work more hours to support the family. We are financially secure and there is no need for him to do this but he will not stop and keeps taking on new projects. I feel that I give up myself and who I am for him but I don’t see that being returned. I used to rock climb and mountaineer among other sports. He tells me that I bully him. That I don’t consider his feelings when I arrange a weekend with my friend (my mum has offered to look after the children while I’m away) because it’s a weekend for him without the children. Its odd how differently two people can interpret the same event. We have been together 9 years. Any advise would be great. I’m not ready to throw in the towel but I’m also not far away either. For the sake of the children it needs to stop being this way. We are 32 and 33 years old and the boys are 2 and 4. Its the 4 year old that also has MD.

    Sorry for the rant. And thank you.

    Posts: 4
    Joined: 23/12/2013
    Re: Feeling alone. Partner with Bethlem myopathy/ulrich

    There will be bumps and ruts in life’s road … sometimes it is just frustration at circumstances but it can come across as a personal issue. It is hard for anyone to have to deal with what their MD denies them, and a weekend minus children to some might be a great break but for others a reminder of an inability.

    Communication is all there is, being comfortable to make comment and not fear it being thrown back at you sometime later. Your partner is doing amazingly well with working and trying to be active, it was a hard decision for me to stop working, it became necessary and I saw that after a long physical struggle and mental going and froing.

    Good luck with your degree :yes:

    I'm always the animal, my body's the cage

    I blog about nothingness

    Posts: 4,751
    Joined: 05/03/2015
    Re: Feeling alone. Partner with Bethlem myopathy/ulrich

    Have you thought about couples counselling, Relate would be able to help, is this something your husband would consider, or could you just go, it often helps to talk to someone who is not involved or related to you.

    Posts: 1,015
    Joined: 05/03/2015
    Re: Feeling alone. Partner with Bethlem myopathy/ulrich

    Hi, I think I am in a similar situation, my wife has Limb Girdle, we are both 60 and I’ve known her for 10 years. She is in a wheelchair and gave up up work about 6 years ago now. It was all great whilst she was working and living in London, but when she gave up work and we moved to the country she suddenly became a recluse, her attitude to life and people mainly, changed. She doesn’t want to go anywhere these days, she doesn’t keep in touch with friends unless they make the effort and over the years intimacy has gone. She’s quite happy with the situation, though sometimes she does complain of being stir crazy!!! Even then it becomes a shopping trip. She has the capacity to do things, cinema, shows, country parks, events etc, we used to do all this in London, but she’s rather stay in on her PC playing games. I’m her full time carer as she doesn’t want anyone else dealing with her personal hygiene so I am limited in what I do and how long I can be away. I took this on when she was a gregarious woman with a vitality for life and people, I have no problem in caring its just something in my nature that I’m ok with, but I have become disabled aswell, I can’t start hobbies that take up too much time as I have to stop and deal with toileting/meals/housework etc, I love old motorcycles and rebuilding them, have tried twice to start projects but gave up because I couldn’t spend enough time on it. I can’t take up anything outside the home because of the time away, usually 2 hours is the limit and when you live in the middle of the countryside that’s taken up with driving. I swim once a week, she has a sister near whom I visit and a family friend also near, I go for a coffee but those are short visits, wife isn’t interested in visiting, doesn’t feel the need.
    So yes its disabling for the partner/carer we do love them and we do care about them and we didn’t go into these relationships with rose coloured specs but even couples without limitations have their seperate lives to lead too, and we can feel lonely and trapped sometimes, its only human nature. I’ve had conversations as I’m sure you have with your husband too. I don’t have any answers I’m afraid, but just so you know you are not alone out there.


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    Joined: 27/01/2014
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