I know that as I get older, this might get easier. But we are still in the new stages of this disease we call MS. Although I am not the one it directly affects, its my husband, who I live with, who I try to depend on for many things and now I feel as though I can't. So when he was diagnosed, I felt like the diagnosis was directed at us both. I mentally and physically knew I had to take on a lot more then I already did. And I often feel as though, others don't really understand that. I try not to verbalize that too much because then I feel as though I look selfish.
Man, ugh...trying to find the balance between being there for my husband physically, emotionally, and everything and still come off as non-selfish and that is what I here to do. I married for better or for worse, in sickness and in health.....but its really hard sometimes. And those are the time I find myself alone, just crying about it all, trying to regain that inner strenghth that everyone needs me to have.
I feel like even the family and friends we have who have MS don't get it, because they aren't paralyzed the way my husband is. Not all MS is the same. My mom who can't walk tries to identify and all I can think is....you have had your life, you watched your kids and grand kids grow up, this man still has a young family and half his life ahead of him, you don't know exactly what its like.Then that thought makes me feel like I am being an ass to my mom.
I can sit there and clean all day, on top of working, and running the kids everywhere, and paying the bills, with the attitude of "I got this!!! " But then he will come home from work, and I see him getting himself food and drink, but too lazy to get back up and put the stuff away (a fight we have always had), and I grow angry. I am sitting here busting my butt to try to do as much as I can do you don't have to, and you can't even throw your trash away. Then I think how he just pulled a 8 hr work shift, dragging his leg around, running around a store with employees and customers who don't care. Why can't he forget to throw out his chip bag and put his cup in the sink? But its usually too late for that thinking, as I have already thrown a fit. Then there is guilt.
I get jealous that he can just go up to his room and fall asleep for a nap whenever he wants like its no big deal. I wonder if he might want me to come and lay down with him if only for a few minutes. Then a child yells and needs tending to whether it be they are hungry or need help with homework. I can't just disappear - there are 3 young girls who parental attention....
OMG...parental attention. Bring on that guilt too. Trying to assure that each child gets the attention they need. And the one child who really needs it, is the one I tend to treat as if she is an adult already. Expecting that she knows better about things. And she's 11....i try to attend to her mood swings but its sometimes so hard. I find myself thinking "Really??? You are crying over THIS?? I cry everyday - you have no idea what real stress is about." Of course I don't say this to her but the thoughts are there.
People always say they are there for us and to ask for help but...i don't feel like I can. Other people can't ensure that we will each have a job 6 months down the line.Other people can't pay for us to have a new house or to pay for us to live in a nice apartment with no stairs. Other people aren't going to take my fears and worries away. What I DO need from other people is something I can't ask. I need people to come and hang out more often without me having to ask & pretty bug nag and beg them, because when i do, they give me the run around (due to their own busy lives) and it makes me feel more like they really don't want to be bothered. I need other people to help me clean my house every few days, so i can stop stressing about it which ends up in me yelling at my children.I need people tp jump in and take over when I feel like I need a break. All selfish requests.
On top of it all...I fell like I am physically failing as well. And feel if I complain about it, I am being selfish because you know....at least I don't have MS. No, I don't. I have dental work that is very obvious as its front and center in my mouth. I have constant aches and pains that everyone attributes to me getting older or my weight, and I feel like if that is what I will be diagnosed with, I might as well not bother. I feel as though I don't have the time to make it to the gym anymore because if i go, that load of laundry wont be done, or I will have wasted an hour and half when i could be doing something more productive. And with my health failing comes the thoughts of "what if my children don't have capable parent to help get them through their childhood"?
I am always analyzing everything I do and think -- is that selfish of me? Am I allowed to be selfish AT ALL anymore? Am I just supposed to now swallow who I am and what I feel and ignore ME? Or am I just being selfish for having selfish thoughts????