February 12, 2013
Share your experience with managing relationships and MS. Get the conversation started.
March 7, 2013
Daily, I try to remember to stay calm (not always done); Take a break if I need it; and let people know when I need, 'space.'
March 10, 2013
Josh, It's good to know that I'm not the only one who recognizes that they need to take breaks. I'm still working on letting people know I need 'space' before I am actually desperate for that space in order to avoid impatient explosions. My loved ones and I are getting better at it though.
August 13, 2013
My greatest struggle is looking different than I feel. The old "but you look so good" thing never seems to go away. I enjoy looking good and put a lot of effort into keeping myself up. But when my body says my batteries are drained, I feel like people consider me lazy or "high maintenance" because they can't "see" my disability. I often just "push through" to hide this "slower/ lesser" side of me (that I still struggle to accept). This is extremely frustrating at home. Though my husband is very loving and supportive on the whole, it never fails that when I'm at my worst- feeling exhausted and run down, we fight. Hmmm, feeling bad tends to put me in a bad mood??? And telling my husband (usually in a not so soft tone) I need help with the kids and chores, he gets mad and thinks I'm "using" my MS as an excuse. Sad, I know. It tends to happen because I've overwhelmed myself, not really because he doesn't help. He does help. I just want more out of my body than it can give. I wish I could "gauge" my energy level for the day and be better able to disperse it, but what most wives/ moms do on "normal" days is very hard on me. Sure, I can do it, but it takes everything I have. I'm often exhausted by the end of the night. And I feel like I have to give up so much of what I "want to" do becasue I don't even have enough energy for what I "have to" do. As much as I would like my husband to "pick up my slack" it just isn't enough. Our standards may be the same but our willingness to achieve those standards (and I'm talking house work, etc.) is vastly differnet. I'm learning to live in an unkept home with so much less than I ever thought I would. Taking a lower job, provides lower wages. Since I can't pay someone to help with the house, kids, yard, etc, I have to do it all myself - and I usually just can't, so it doesn't get done. I'm holding on to the belief that as my two sons get older they will assist me more in the things I want to do.
March 8, 2014
Managing relationships with MS is so hard! I have been married for a long time and always considered us to be a strong couple. We have a family, we both worked and earned money equally. I had friends and nursing colleagues, outside interests and ongoing study to keep me stimulated.
MS hit me hard a year ago with so many back to back relapses leaving me increasingly disabled.
I feel like I have become a dependent person, I can no longer work and I don't feel like I have a purpose anymore. I can't work and have feel I have become a financial burden.
My husband always tells me that he doesn't mind and that I worry too much but my husband now drinks a whole lot and our friends have started to cut us loose because of that and the fact that I have Ms
We don't get invited to the same get together s we used to have with our friends and neighbours but I know the other friends all still have them without us.
I feel like I have lost my way when I got MS. My marriage is getting more damaged as I don't cope and neither does my husband.
I am trying to keep it all together for the kids but it is a struggle as I think we are falling apart.
Sorry to sound so desperate but Whenever I read posts on the internet about MS struggles it always seems that someone says that they have been there and it got better. Have got my fingers crossed that there is someone out there who can help xx