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Struggling with lack of sex life

My husband was diagnosed with MS 2 years ago when he was 28. Initially he was basically a quadriplegic, but over time he regained almost everything but he really struggles with fatigue, panic attacks, mood swings, depression, impotency, and tingling in his hands and feet. I work from home so when he's having bad days I'm able to take care of him. I feel bad thinking about my needs. I devote as much of myself as I can to my husband, but I'm really struggling too. Sometimes if I bring up how hard it is for he makes me feel bad about it so I try not to talk to him about it. I just turned 31 and we have sex a few times a year at this point. And when we do, he doesn't have the energy to be a dominant partner which is always what I've preferred. I waited to have sex until I was really in love and found the person that I wanted to marry, thinking that I had plenty of time. I now find myself regretting that decision and wishing I had more experiences prior to at least think about. I have a very high libido and I'm going stir crazy. I don't want to leave my husband, I quickly brought up the idea of adding a partner to our relationship or having an open relationship, but he got very upset. I don't want to cheat on my husband either and if I was older maybe I'd be a little more ok with all of this. But I thought my sex life was just beginning, not realizing it's basically over. On top of that I really want a family, but I don't see how that could happen naturally. I feel like there's no good decision here. Stay with the man I truly think is my soul mate but not be fulfilled sexually at all or leave and break his and my heart.