I feel humiliated. I have had turns and bouts of feeling very unwell over the past year, am two years past my last op which included a hysterectomy. I was never fully positive and excited after my last op because I knew I'd never be fixed and would probably be ill again, but my boyfriend thought I was being horribly negative. Sure enough, a year post opthings startedto go tits up again and I have long spells of pain and bowel problems, all due to this godforsaken illness. And then I occasionally come out of it and I feel almost completely well (aside from the mechanical problems with my colon due to adhesions, but I'm coping and I don't talk much about that because I'm not currently in pain so it hardly matters). For the past week or two I have had more energy and feel stronger than I have in a long time, and I'm grabbing it with both hands and getting exercise, feeling like my old self, even trying to have "normal" sexual contact with my partner. He seems disinterested though. Turns out he is too worried now about if my health goes south again, he doesn't think he can cope with it. He hasn't said as much that he'll leave but he "doesn't know what he'll do" but he can't ride this positive wave right now while we have it. I don't know if he's met someone or if there's any point in begging him to stay, as I can't promise him that I'll stay well. I hate that I might lose him because of this f*cking disease. I am laying awake here unable to sleep because in sleep I forgot that my worst nightmare was nowmy waking nightmare. I woke up to realise that this time him laying beside me wasn't the reassurance I have always had. And we've been working on buying a house together and I've been blindly taking that as a positive sign that despite all the sh*t I have to go through, he and I are ok.
I don't know what to do. He has every right to feel betrayed by my lack of ability to be the fun, outdoorsy girl I was before we got together. I'm 42, I'm not dying but occasionally not living because of this stupid disease, and I'm sitting here while he sleeps in our bed thinking I may have to just make the decision for him and move myself out so I'm not left high and dry when I'm not feeling ok.
I'm sorry but I'd rather be dying than slowly deteriorating. I don't know what to do.