My husband has been ill with ME for three and a half years. After a long, long period of resistance, a determination to treat life "as normal", I am still struggling to accomodate it. I resent in every way. I have come to feel that ME is pretty much the dominating factor of our lives. We live and breathe by it. We are together or apart through it. It forces us to sleep in different rooms. It is the cause of nearly every one of our arguments. I'm sick of it.
No more, I'm sure, than he is. Don't think me unsympathetic to ME sufferers in general or my ME sufferer in particular. If my life was taken from me the way my husband's has been, I, too, would be very, very angry. But I can't help feeling I wouldn't take it out on him to the same extent that he's taking out on me.
The last eighteen months have marked a gradual decline in all the good things that were once the hallmark of our relationship - a relationship I felt blessed with, that I considered ideal. Slowly, ME has been eating the heart out of everything good that was once between us. We are left with gaps, silences, occasional inflammation, poisonous outbursts and rotting canker.
There is less and less I can say to my husband now because everything makes him so angry. Just me having my life makes him angry. And I'm not having by any means as much of a life as I would like to, just because it makes him angry. He can't come out with me, because he is too ill, but he doesn't want me to go out without him. ME has changed him into a different person. From being confident, positive and outgoing, secure in us, and proud of my independent life, he has become insecure, depressed, reclusive and controlling.
The ME has become my nemesis. It has taken over my life almost as much as it has taken over his. I feel suffocated, demonised, defeated by it. And my husband might as well be possessed by an alien lifeform for all the similarities he bears to the man I fell in love with. ME makes me unacceptable to him. Everything he once loved about me now sticks in his craw. He resents my energy; despises my passions; is jealous of my successes; restricts my movements.
I hate his ME. Detest it. In one of many recent bad dreams, my sub-conscious turned it into a foul-mouthed, unwanted, substance-abusing lodger called Brian – a friend of a friend I'd agreed could have one of the kids’ room for a couple of nights - who then bedded in, claimed squatters rights: swearing, drinking, playing loud music and refusing to budge. It’s my substance he’s abusing.
Sadly, it turns out I am mostly married to Brian this days, and hardly ever married to the lovely, funny, kind, generous and supportive man I thanked my lucky stars for meeting. It's Brian's persistent cough I hear hacking away in the kitchen. Brian's bad-tempered roaring at the kids that pulls me away from my desk. Brian's despair that draws me towards him. Brian's insults that send me, exhausted (though never as exhausted as Brian), to bed. I don't know if I'm ever going to get my old husband back, but I long for him. Sometimes I cry remembering how lovely he was.
He was the person I used to share everything with. Now there's only Brian, and Brian doesn't want to hear anything about me or my feelings because he's got feelings the size of a crashed double-decker, and none of them are very well disposed towards me, seeing as how I've failed so consistently to help him get better. (In the last year or so, Brian has persuaded my husband that his failure to recover from ME is pretty much entirely my fault.) Talking always explodes into rows these days, and Brian gets very angry if I even talk about talking to a counsellor. I hate badmouthing my much-loved husband to my friends, so I'm here, in cyberspace, badmouthing Brian instead. And casting about for a community of people who might care, in the hope of finding some replacement support to shore me up against the loss of my once very supportive husband.
2 comments:
I am moved by this. It is a strange bereavement you are experiencing - the apparent loss of the one closest to you, still physically there though hijacked by this other entity. It might be that if he can deal with his own bereavement - the loss of a life he thought he had - that your husband will come back for increasingly longer periods. And of course his strength may come back in some measure. But with this terrible illness one can't predict anything.
I never hear much from the partners of people with M.E. There must be many out there - silent. It's good you're speaking.
Thank you for your comment; it is really appreciated. "Hijacked" is a good word. I certainly feel he has been taken over. And you're right about his sense of bereavement, too. I think for the first couple of years he was really sure he was going to lick it pretty quickly but it's got to the point now where we've tried so much, and there's nothing that really looks like "progress" anymore, and we've both begun to think this could go on forever; perhaps this is how life is going to be from now on, and we have to face that. It's really hard to accept the loss of your own life in this way. I can't imagine how you can come to terms with a thing like that, and I don't blame him for his anger. I only wish that so much of it didn't seem to be directed at me.
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