I started this blog pretty much in a state of despair, exhausted by all the arguing, all the physical effort of keeping going, carrying the weight of the loved one, heavy and altered with illness, and the children (who need both parents but rarely get the best of one) and the need to pay the bills and keep the roof over our heads and the food in our mouths, and the even-more-strongly-burning need to still be myself, live a good and full life, earn my living doing what I love... dealing with the reality of a husband too sick to work, and too exhausted and angry with life to even be nice to me. Phew.
Now I feel like a fraud. That's how life's been, for so long that I had given up thinking it was going to end. Though we'd had a period of respite around Christmas - where we managed to reconnect, and returned, with huge relief, to the love, respect, support and kindness that had forged us into a couple in the first place - we were back once more in the dark and separate places we'd inhabited for most of the previous year. Again, I found myself crying my eyes out as I drove down the motorways to yet another piece of paid work that I'd relish and enjoy if only I felt I had a secure, happy marriage to go back to. And a secure, happy man. The diary entries, scribbled in staff meetings, in car parks if I arrived somewhere early, on my lap in a dark corner of the house if it was late, so often ending on the same, tear-splodged note:
I've lost him. I've lost the man I love. I want him back.
I miss him so much. So much.
Where is he?
And although sometimes I'd sort myself out with something like armour - I'd decide that I would live with it, I would deal with it, because I had to, what choice did I have - I couldn't really stop crying about the beautiful thing - US - that I had lost. I had a long history of bad relationships before I met him - twenty-two years, in fact, of disasters of the heart. But this one was different. I know that sound like the most terrible romantic cliche, but we knew it, and eventually every we knew, knew it as well. We were the kind of couple to whom friends said: "If you two ever split up, then there's no hope for any of us."
I always felt - we both felt - that something about our love was exceptional. I suppose a lot of lovers feel that - don't you have to? Isn't it something about the beautiful "story of us" that makes you fight for each other during the hard times, when you find yourself a thousand miles apart in the same bed, when silence has warped into neglect, erupted into vicious verbal assaults, and retreated back into silence, each time icier, harder, and less possible to live with and sleep on? It was far, far worse between us, when the illness started nibbling at the relationship, because we both knew, it had been so exceptionally good. We both felt blessed to be with the other. I thought I'd been loved two or three times before but when he loved me, I realised he was the first, and that not one of others I'd imagined had loved me, had loved me. This was love. Experiencing what it really meant was an education, and made me understand all the ways in which I hadn't been loved before.
Illness has wreaked havoc on us. It's a loss that both of us find hard to bear. Our love isn't perfect anymore. It isn't enviable. It isn't a source of pride like it used to be: we are humbled. Our diamond has flaws. Our glorious union is cut down to size.
But it is incredibly solid. That I had begun to suspect it wasn't is one of the worse consequences of living with this illness. We both want - above everything - to be close again, and be able to look back at this, one day, as a terrible (but temporary) diversion, that forced us off the smooth roads onto a potholed track that took us nowhere, except to get us lost in a forest, panicking without a map, frightened and beginning to snap at each other, the rain coming on, fuel running out, the sky darkening, imagining the gleaming eyes of wolves coming out of the forest...
Well, its the next day in the fairy tale, and the sun is out and we're sitting in a layby eating emergency sandwiches that I suddenly remembered I had packed ("just in case") in a tupperware containers, and we find we *do* have a signal on the phone at last, and one way or another we feel a whole lot more confident about finding our way back on the journey we had originally started (and were intending to finish).
It's two weeks since Brian was banished and, despite some creaks on the floorboards, we are still okay in each other's company. Affectionate too, at least a couple of times a day. My original husband is still only there in flashes (the energy for that level of transmission is hard to come by) but the one I'm living with is pretty good, by anybody's standards. He's friendly, reasonable, thoughtful, and as supportive as is possible. I'd still like my old husband back, but I realise I'll have to be patient. There's a way to go yet before we get back on the adopted roads, the ones where you can put your foot down and have some fun. I've got a companion to talk to and at the moment, the mood is fairly light. My original husband was the best of the lot, but compared to Brian, this one will do very nicely indeed.
Monday 30 April 2007
Wednesday 25 April 2007
Demons
I've been away (for work) for just over 24 hours, which I knew was going to be a real strain on my husband, but it saved me about six hours of driving, so we agreed an overnight stay was best. By the time I got back last night he was pretty much on the edge of things, so I've been doing everything I can to give him rest and peace (he gets very sound sensitive). But complete rest and peace are impossible in a house full of children (I have three from my first marriage, and we share a daughter) so it is hard to create the environment he needs. Plus there is always the wolf to keep from the door, and later today, unfortunately, I've got several more hours of work out of the house which involve leaving him to cope alone when he's really in no fit state.
These are the places where he starts going backwards (in terms of recovery) and he tends to get very angry about that. So far, he has kept Brian at bay (which takes, I imagine, great strength of will), but I'll have to manage the next few days very carefully if I'm not to provoke him into returning.
Whatever demons a person has, even if you thought them long gone and dealt with, an illness like ME seems to open up a crack and let those demons come back (sometimes, for a time, taking full possession). My husband's demons are paranoia and anger (the main part of the personality that constitutes Brian) - which he thought he had sorted out twenty years ago, during his recovery from a drug-induced breakdown (long, long, before I knew him). In conquering his demons, he became one of the loveliest men I'd ever had the pleasure to meet. But ME has brought them back to life, which has been a shock for both of us.
It has been peaceful here, despite practical difficulties, for a week and a half now - and I'm very grateful for that - but I'm aware the situation is precarious. My husband's demons are hanging around his illness, provoked by his symptoms and encouraged by his weakness, and constant vigilance is required to make sure they don't take him over again.
These are the places where he starts going backwards (in terms of recovery) and he tends to get very angry about that. So far, he has kept Brian at bay (which takes, I imagine, great strength of will), but I'll have to manage the next few days very carefully if I'm not to provoke him into returning.
Whatever demons a person has, even if you thought them long gone and dealt with, an illness like ME seems to open up a crack and let those demons come back (sometimes, for a time, taking full possession). My husband's demons are paranoia and anger (the main part of the personality that constitutes Brian) - which he thought he had sorted out twenty years ago, during his recovery from a drug-induced breakdown (long, long, before I knew him). In conquering his demons, he became one of the loveliest men I'd ever had the pleasure to meet. But ME has brought them back to life, which has been a shock for both of us.
It has been peaceful here, despite practical difficulties, for a week and a half now - and I'm very grateful for that - but I'm aware the situation is precarious. My husband's demons are hanging around his illness, provoked by his symptoms and encouraged by his weakness, and constant vigilance is required to make sure they don't take him over again.
Friday 20 April 2007
When The Going Gets Tough...
Supporting someone with ME can be hard on all sorts of fronts. The emotional difficulties are, for me, the worst - but when you've got a family to look after, and one of you is chronically ill, it can physically tough, too, holding it all together.
The last couple of days, I've been on the go from 6.45am until past midnight. Wednesday was a fairly typical day. I got up at 6.45am to get a swim in the "early bird" session. Swimming helps me enormously, both mentally and physically. As well as keeping me fit and staving off the flab, it's like an active meditation, clearing my head. The pool is a place where I become aware of what's going on for me mentally or emotionally, become aware of any sticking points, and mull over what I've got to do. It also helps me with my back, which has been increasingly problematic over the last couple of years. I try to swim three times a week.
If I swim, though, it's hard to get back in time to take my daughter to nursery (it's usually 8.45 by the time I get home, and I'd need to be back by 8 to get her dressed, make her packed lunch and catch the bus). There's been a whole spate of mornings over the last couple of months when my husband hasn't been well enough to take her himself, and that means I've hardly swum over the last 8 weeks. This is never a good thing. My back problems starting getting worse again and I was missing that precious bit of me-time (rather than ME-time) where I could clear my head and get a handle on things. Without the regular swim, my life seems to start falling apart. So I'm trying to get back into the routine, even though it can lead to very long days.
I got back from swimming and walked the dog. (Whoever doesn't take our daughter to nursery has to walk the dog; my husband can't do both). Then I got down to work. I'm self-employed, and the sole financial support of the family. My husband has been unable to work since he had a major relapse 14 months ago. He takes on very small pieces of work here and there just to feel useful to the world but is basically too ill to do more than that. Half a day at a time is as much as he can do without provoking seriously debelitating symptoms (which has a knock-on effect for the whole family). I worked right through until he arrived home from picking our duaghter up again (2pm) and it was time to take over looking after her. I had a bite to eat and then took her to the park for the afternoon, walking the dog at the same time. It was a nice interlude, as it happens, meeting a friend and her daughter. But I had to remain fully vigilant and responsible, being in charge of both young 'un and beast, who seem to delight in running off in different directions. Just before 5 we got home - I was pretty tired by this point. Ten minutes panic and fluster while I fail to find a book I realise I need, and then I set off (slightly late) for my teaching job - I teach mature students one night a week, from 6pm to 9pm.
After my teaching I went to the library to get some books out for the project I'm working on, and was out of there just as it was closing at 9.30. It took me 45 minutes to get home (walking/train/walking) - 10.15 by the time I got in the door - and then the dog needed his last walk of the day so I did that too, grabbing a left-over sausage roll from the fridge as I did so. It's often hard to eat properly when there's so much to do - an actual meal can be hard to come by. When my husband was well he used to make sure I ate properly, and would sometimes have a meal ready when I got home from teaching but that's all long-gone. At 11pm, I finally sat down with my husband and a cup of tea to say hi and talk over the day. His legs were pretty bad so I gave him a leg massage, which I try to do every night unless I accidentally fall asleep first (it happens) or my back is really bad. An hour of this and I was done: it was midnight and I needed to go to bed. Then I realised I hadn't printed off the details of the place I had to go to early the next morning, so it was another half an hour of sorting stuff out and packing my bag until I got to bed at about 12.35am.
This day wasn't unusual; yesterday was just as long, and just as non-stop, involving travelling to Chichester for a job interview. They say ME's all about balance between doing and resting but I'm not sure how much balance I'm getting in my own life.
Still, on the positive front, I'm getting exercise again at last, and my husband is still behaving reasonably like the person I married. I feel positive about the job interview and hope to hear something good from them early next week. Brian (for the moment) is nowhere to be seen.
The last couple of days, I've been on the go from 6.45am until past midnight. Wednesday was a fairly typical day. I got up at 6.45am to get a swim in the "early bird" session. Swimming helps me enormously, both mentally and physically. As well as keeping me fit and staving off the flab, it's like an active meditation, clearing my head. The pool is a place where I become aware of what's going on for me mentally or emotionally, become aware of any sticking points, and mull over what I've got to do. It also helps me with my back, which has been increasingly problematic over the last couple of years. I try to swim three times a week.
If I swim, though, it's hard to get back in time to take my daughter to nursery (it's usually 8.45 by the time I get home, and I'd need to be back by 8 to get her dressed, make her packed lunch and catch the bus). There's been a whole spate of mornings over the last couple of months when my husband hasn't been well enough to take her himself, and that means I've hardly swum over the last 8 weeks. This is never a good thing. My back problems starting getting worse again and I was missing that precious bit of me-time (rather than ME-time) where I could clear my head and get a handle on things. Without the regular swim, my life seems to start falling apart. So I'm trying to get back into the routine, even though it can lead to very long days.
I got back from swimming and walked the dog. (Whoever doesn't take our daughter to nursery has to walk the dog; my husband can't do both). Then I got down to work. I'm self-employed, and the sole financial support of the family. My husband has been unable to work since he had a major relapse 14 months ago. He takes on very small pieces of work here and there just to feel useful to the world but is basically too ill to do more than that. Half a day at a time is as much as he can do without provoking seriously debelitating symptoms (which has a knock-on effect for the whole family). I worked right through until he arrived home from picking our duaghter up again (2pm) and it was time to take over looking after her. I had a bite to eat and then took her to the park for the afternoon, walking the dog at the same time. It was a nice interlude, as it happens, meeting a friend and her daughter. But I had to remain fully vigilant and responsible, being in charge of both young 'un and beast, who seem to delight in running off in different directions. Just before 5 we got home - I was pretty tired by this point. Ten minutes panic and fluster while I fail to find a book I realise I need, and then I set off (slightly late) for my teaching job - I teach mature students one night a week, from 6pm to 9pm.
After my teaching I went to the library to get some books out for the project I'm working on, and was out of there just as it was closing at 9.30. It took me 45 minutes to get home (walking/train/walking) - 10.15 by the time I got in the door - and then the dog needed his last walk of the day so I did that too, grabbing a left-over sausage roll from the fridge as I did so. It's often hard to eat properly when there's so much to do - an actual meal can be hard to come by. When my husband was well he used to make sure I ate properly, and would sometimes have a meal ready when I got home from teaching but that's all long-gone. At 11pm, I finally sat down with my husband and a cup of tea to say hi and talk over the day. His legs were pretty bad so I gave him a leg massage, which I try to do every night unless I accidentally fall asleep first (it happens) or my back is really bad. An hour of this and I was done: it was midnight and I needed to go to bed. Then I realised I hadn't printed off the details of the place I had to go to early the next morning, so it was another half an hour of sorting stuff out and packing my bag until I got to bed at about 12.35am.
This day wasn't unusual; yesterday was just as long, and just as non-stop, involving travelling to Chichester for a job interview. They say ME's all about balance between doing and resting but I'm not sure how much balance I'm getting in my own life.
Still, on the positive front, I'm getting exercise again at last, and my husband is still behaving reasonably like the person I married. I feel positive about the job interview and hope to hear something good from them early next week. Brian (for the moment) is nowhere to be seen.
Wednesday 18 April 2007
Letters From the Front Line
Funny how, the minute things really come to the sort of head that has me looking up the phone number for Relate, everything suddenly (if temporarily) resolves.
Putting my feelings down in type has long been my solution to almost every problem and clarifying them in the process of starting this blog, I wrote my husband (the nice one) a letter. Things have got to be pretty bad, I figure, when you are reduced to writing letters to the person you live with - someone, indeed, who you know is sitting upstairs as you compose it. Only realising the extent to which verbal communication between us had become impossible drove me to do it. But maybe I should try to do it sooner next time.
The first letter created a ceasefire. Though a ceasefire is vastly preferable to constant bombardment, airstrikes and sniper's bullets as you make the foray across open ground to fetch water, after 24 hours I couldn't even bear that (you have to understand it's been so bad for so many weeks that civility is just another depressing form of non-communication). So I wrote a second letter, which finally broke through to its intended recipient (my husband, rather than the bastard Brian).
As a result, and to my huge relief, Brian's been absent for a full four days and counting. Every now and then I have to check - when my husband's looking a little drained as the result of some exertion (collecting our daughter from nursery, for example), the cast of Brian can fall over his face. You're still there, right? I ask. So far, every time, he has been.
I know Brian's only waiting for a chance to move back in, and that I can't take any of this for granted, but am glad, at least, to have the man I love back with me for a while.
Putting my feelings down in type has long been my solution to almost every problem and clarifying them in the process of starting this blog, I wrote my husband (the nice one) a letter. Things have got to be pretty bad, I figure, when you are reduced to writing letters to the person you live with - someone, indeed, who you know is sitting upstairs as you compose it. Only realising the extent to which verbal communication between us had become impossible drove me to do it. But maybe I should try to do it sooner next time.
The first letter created a ceasefire. Though a ceasefire is vastly preferable to constant bombardment, airstrikes and sniper's bullets as you make the foray across open ground to fetch water, after 24 hours I couldn't even bear that (you have to understand it's been so bad for so many weeks that civility is just another depressing form of non-communication). So I wrote a second letter, which finally broke through to its intended recipient (my husband, rather than the bastard Brian).
As a result, and to my huge relief, Brian's been absent for a full four days and counting. Every now and then I have to check - when my husband's looking a little drained as the result of some exertion (collecting our daughter from nursery, for example), the cast of Brian can fall over his face. You're still there, right? I ask. So far, every time, he has been.
I know Brian's only waiting for a chance to move back in, and that I can't take any of this for granted, but am glad, at least, to have the man I love back with me for a while.
Friday 13 April 2007
Something Symbolic...
...that stands in pretty well for me and the state of my marriage. If only I could get Blogger to recognise the Flickr address as a valid url, I'd use it as my profile photo. But I'd want to change it regularly. Brian changes the furniture around too quickly for me to be able to find anything like a sense of permanence.
Married to ME
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.
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.
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