My husband bought himself new work shoes yesterday, because his old ones had worn out so badly that he had to wrap gaff tape around them so he could still walk in them for the rest of the day. He said he felt guilty about buying them, because we’re so broke. He works 7 days a week for months on end, no breaks. Then he comes home and takes care of me. I’m extremely high maintenance in that I can’t do my own shopping or pick up my meds from the pharmacy, or prepare food more complicated than cereal or canned soup. I’m stuck in bed all day. I’m fatigued and I hurt all over and the cornucopia of meds I’m taking does little more than take the edge off most of my symptoms. So it’s not as bad as it could be, but still bad.
He says he feels guilty about buying himself something that he actually needs for work.
I’m finding that each new day and each new diagnosis he becomes disillusioned, and even resentful. We got married less than a year before I was diagnosed with MS, and even though I had no idea it was going to happen, I can’t help but feel like I roped him into marriage due to a pregnancy, only in my case, I became the baby. I need constant help, constant attention, and he never gets a break. WE never get a break.
But it doesn’t always feel like a “we” or “us” anymore. It’s not as if I don’t suffer all day long, the only problem is that I don’t get paid for my suffering and he does. He works too much, sleeps too little, and it seems he no longer cares about things like cooking or cleaning, he just comes home from work with some bags of fast food then plops down next to me and we watch Tv. I try to engage him in conversation, he’s too busy chatting with people or reading articles on his phone. He doesn’t listen to me, doesn’t respond, and sometimes this leads to errors on his part because he didn’t listen to my instructions. But, that’s my fault too. Somehow lately everything is my fault.
Sometimes I think that everything is okay, that things will get better when he can get a raise or I can get social security or we move to someplace with better weather, because the heat of the desert just kills me, and I know he’s tired of long commutes in the hot sun. Other times I think that we’ll keep going on the way we are and we’ll both be so angry and resentful and overcome by grief and guilt, and if I suggested we split he’d happily cut and run. But you know, I don’t believe that he’d ever leave me. He’s an honorable man and he knows I have no place to go and no way to take care of myself on my own. But, he would hate it. He hates it now, he just won’t tell me, and I don’t even know how to talk to him anymore.
He really doesn’t know what life is like for me now and it’s almost as if he doesn’t care, or that he thinks he understands me but he just doesn’t. He really doesn’t. How do you describe colors to a blind person? How do you explain to someone who is not chronically ill what it feels like each day, and especially if they don’t care enough to listen?


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