Sometimes you have to get to the very bottom of things before it gets so desperate that there are no further choices: it’s decide to end it all (your current state of life) or start going up.
We descended to the bottom through layers of increasingly bitter shocks. There was the Venice honeymoon blighted by his ability to walk for any time or any distance before needing to sleep all afternoon while I got disconcertingly good at, and addicted to, playing solo electronic backgammon. There was the first time he said “Fuck You” and didn’t start laughing after a few seconds. Really meant it. Locking myself in the car once, because he scared me. Shocks of all shapes and sizes, constantly surprising, all slaps in the face. That was all him (or ME) shocking me. Waking me up to what this illness is and does. Once I was fully awake, we were miles apart, and he was furious with me. He was a stranger: angry, and resentful, and insecure, and full of rage. I dreamt his ME as a poisonous substance-abusing lodger called Brian, who we'd inadvertently invited in as a friend of a friend, who refused to move out, and now we were stuck with heavy drinking and emotional warfare. After that dream, I woke up to the realisation that my husband had become, was enveloped by, Brian.
But I never stopped wanting my first husband to return. Desperation pushed me to my own edges, until I started to do things that shocked him back. Six months ago I responded to the launch of another verbal assault by throwing a glass of water in his face.
Ever since then, by slow levels, we have been ascending to the light. Shocks from me to him help us surface.
Last week, realising the extent to which I was drowning without his emotional suport, I finally began to feel that if I couldn’t have it, when it came down to it, that I should start making progress, in a very real way, out of the marriage. I didn’t want him to move out; it isn’t that I don’t love him any more, because I do. Painfully so. But I had begun to feel that he treated me so much better when we weren’t married, and since treating me better was what I wanted him to do, I reasoned that maybe the best thing to do was to stop being married to him.
When the woman you love is lying there awake next to you at four o’ clock in the morning, and says, quietly, that she wants to get a divorce, it’s a one of the bigger shocks. What is telling is how a husband reacts, and mine reacted like my real husband. Became, in less than an hour of talking, my original husband, the man who genuinely loves me and is horrified to wake up in the middle of making his wife so very unhappy.
He came in a few hours later while I was reading people's comments on here and I didn't hide it. "It really makes me sad," I said, "that there's a bunch of people you've never even met who knows more about what's going on in my head than you do." We talked. I cried. He held me, and said sorry; he was truly, truly sorry.
This was last Thursday morning. It’ll be a week tomorrow, and things are feeling firmer and safer day by day. We’re getting better at being happy with each other, and enjoying having our connection back. We’re losing sleep for the right reasons instead of the wrong ones. For a long time now, my husband’s insomnia was lodged upstairs on a sofa, watching movies, passing the hours in draining isolation. For the last week we’ve had more positive forms of sleep-loss: long talks in each other’s arms, and kissing. We are lovers again, as we were right back at the beginning.
I’ve been wrong before. But let's hope I'm not.
Wednesday, 27 June 2007
Tuesday, 19 June 2007
Back On The Slide
It has become a necessity of our situation that I stay as buoyant as I can for as long as I can. Frequently, when I "crumble" in some way, he gets angry with me. He sees it these days as me placing unreasonable demands on him; as me, either blindly or selfishly asking him for emotional support when he is the one that needs support. He has said several times in the past he is tired of being the one to prop up my confidence when it flags. Yet he doesn’t do that now, hasn't done it for a couple of years. I relied upon him for this kind of support before he got ill, but I don’t think he sees it as his job anymore. As he points out, I do have other people around that are currently wonderfully supportive in the way I need them to be. But none of their support means as much as his would. If he felt he had the energy to give it.
These days, he just doesn’t. He can’t muster up the enthusiasm. His life has been taken apart piece by piece until there’s nothing left. Compared to what he is suffering, my losses are pathetic, not worth the energy. What on earth do I have to complain about? So some biggish piece of work has to be torn up and started again; so what? He can barely get through the day. Every day. You can see why he is unable to support me. But I miss having that part of him, the friend who won my trust with his support, because that man seemed to really care for me.
The things that were always important to me, like my work, don't get any less important to me now that he's ill; in fact, in some ways they become more important. I run to my work when I feel I don't matter to him like I used to. And so the gap gets wider again.
These days, he just doesn’t. He can’t muster up the enthusiasm. His life has been taken apart piece by piece until there’s nothing left. Compared to what he is suffering, my losses are pathetic, not worth the energy. What on earth do I have to complain about? So some biggish piece of work has to be torn up and started again; so what? He can barely get through the day. Every day. You can see why he is unable to support me. But I miss having that part of him, the friend who won my trust with his support, because that man seemed to really care for me.
The things that were always important to me, like my work, don't get any less important to me now that he's ill; in fact, in some ways they become more important. I run to my work when I feel I don't matter to him like I used to. And so the gap gets wider again.
Monday, 11 June 2007
Downs and Ups
Things seem to improve much more quickly, now, than they have been doing for the last year and a half. There are still some problems, some areas of conversation that are possibly still not ready to be discussed. But we are coming together more quickly after things go wrong. It frightens me when it collapses - I'm send right back into despair; everything feels insoluble. But he is less unreasonable than before. He is more willing to take steps towards me. When he sees I am upset, his resentment evaporates more quickly (instead of being provoked).
We had the nicest weekend I can remember for a long time. We just relaxed together, doing very little. He's still really ill from my overloading him (which finished ten days ago or so) and I'm doing what I can to help him feel better. On Saturday evening we went for a long, gentle stroll along the seafront, further than we have walked since we were courting. [Both of us, in the last seven years, have had health conditions that have prevented us walking very far at times.] We had our daughter with us; she was happy and playing, and clambering and "doing excercise" (she's not yet four) and saying the sorts of things that make adults laugh. It was so lovely to be together, and just talk about stuff. He was the man I remember, the man I fell in love with, explaining the world to me in a way that makes sense (his philosophies about the nature of people, and of happiness, always seem absolutely right - and are reassuring). I didn't want it to end; it was like being transported back to the time before ME, before we had a daughter.
This is hard to say, and I don't want to be misunderstood. I don't blame our daughter for Paul's ME in any way. She is a joy, and we are both devoted to her. But the ME coincided very closely with her arrival; the big viral event that he never seemed to recover from began less than three months after she was born. He was overdoing it. I had a pregnancy-induced instability of the pelvis (SPD) that meant I couldn't walk without great pain, and we pretty much sofa-bound for three months before and three months after the birth. Because he felt so responsible, in that way that impending and new fathers do, he was working two jobs - the job he loved, which didn't pay but involved being out until late every night, and a cash-in-hand physically demanding job - removals - which meant he had to get up early. He was also taking on more than his fair share of running the home because of my physical impairment. Once our daughter was born, he was also helping to look after her, doing nappies, taking her with him when he could, pacing or dancing her to sleep when she was restless. He was brilliant. He was totally over-doing though. Then he got a bad cold and he didn't stop for it. He said he "couldn't". I can't remember if he dropped removals - quite possibly not. It was Christmas, I wasn't working, had only state maternity benefit, and we were struggling financially. Nor did he drop the job he did for love, which kept him out till midnight, or later. Perhaps he cut down a little on looking after me and his daughter (my pelvis was stabilising, I could do more) but was still doting on us both, and therefore wanted to continue doing whatever he could. He said he would stop working and have a proper Christmas holiday from the 21st December; three weeks off. But at the end of that three weeks he was still ill. Six months later, he was still ill.
This whole three years since has been one long struggle to come to terms with this illness; to, on some level, accept it and accommodate it. We still fight it, both of us. I am still so angry, sometimes, when I think of what it has done to us. But there is no way out of here without accommodation. And there may still be no way out of here.
I don't wish we'd never had our daughter. Enjoying her, together, was a large part of what made Saturday night so special. She is the bridge that enables us way to fight our way back to each other. She is so precious to us, and we are both so proud of her, and thank goodness, when times get really tough, we have something we can agree on.
We had the nicest weekend I can remember for a long time. We just relaxed together, doing very little. He's still really ill from my overloading him (which finished ten days ago or so) and I'm doing what I can to help him feel better. On Saturday evening we went for a long, gentle stroll along the seafront, further than we have walked since we were courting. [Both of us, in the last seven years, have had health conditions that have prevented us walking very far at times.] We had our daughter with us; she was happy and playing, and clambering and "doing excercise" (she's not yet four) and saying the sorts of things that make adults laugh. It was so lovely to be together, and just talk about stuff. He was the man I remember, the man I fell in love with, explaining the world to me in a way that makes sense (his philosophies about the nature of people, and of happiness, always seem absolutely right - and are reassuring). I didn't want it to end; it was like being transported back to the time before ME, before we had a daughter.
This is hard to say, and I don't want to be misunderstood. I don't blame our daughter for Paul's ME in any way. She is a joy, and we are both devoted to her. But the ME coincided very closely with her arrival; the big viral event that he never seemed to recover from began less than three months after she was born. He was overdoing it. I had a pregnancy-induced instability of the pelvis (SPD) that meant I couldn't walk without great pain, and we pretty much sofa-bound for three months before and three months after the birth. Because he felt so responsible, in that way that impending and new fathers do, he was working two jobs - the job he loved, which didn't pay but involved being out until late every night, and a cash-in-hand physically demanding job - removals - which meant he had to get up early. He was also taking on more than his fair share of running the home because of my physical impairment. Once our daughter was born, he was also helping to look after her, doing nappies, taking her with him when he could, pacing or dancing her to sleep when she was restless. He was brilliant. He was totally over-doing though. Then he got a bad cold and he didn't stop for it. He said he "couldn't". I can't remember if he dropped removals - quite possibly not. It was Christmas, I wasn't working, had only state maternity benefit, and we were struggling financially. Nor did he drop the job he did for love, which kept him out till midnight, or later. Perhaps he cut down a little on looking after me and his daughter (my pelvis was stabilising, I could do more) but was still doting on us both, and therefore wanted to continue doing whatever he could. He said he would stop working and have a proper Christmas holiday from the 21st December; three weeks off. But at the end of that three weeks he was still ill. Six months later, he was still ill.
This whole three years since has been one long struggle to come to terms with this illness; to, on some level, accept it and accommodate it. We still fight it, both of us. I am still so angry, sometimes, when I think of what it has done to us. But there is no way out of here without accommodation. And there may still be no way out of here.
I don't wish we'd never had our daughter. Enjoying her, together, was a large part of what made Saturday night so special. She is the bridge that enables us way to fight our way back to each other. She is so precious to us, and we are both so proud of her, and thank goodness, when times get really tough, we have something we can agree on.
Sunday, 3 June 2007
Payback
Well, I guessed there would be some come-uppance, but for a while there I thought I’d got away with it. No such luck. Over the last two days, my husband has switched out of "coping" mode, and we’re back to a very familiar and painful place.
Again, it’s my working that’s the issue, my lack of flexibility, now captured in the phrase “5-day-week-family”. “I never wanted to be a 5-day-week family,” he says. That's true. At the time he became really ill, he was running a little venture that was a 7-day-a-week job. He says "that was flexible" but it wasn't. It was demanding (on all of us). For the last year he was doing it, it prevented me working (at all), and for the entire two and a half years interrupted most weekends and the significant majority of our evenings. I was alone (with a small baby) for five nights out of seven. In the meantime my husband was getting so tired that I'd need to have our daughter for long stretches of the day as well, because even if he wasn't doing paperwork, he'd need to rest. He was working (but earning no money). I couldn't work because he was either working or resting and there was a baby to look after. Without the illness, we could have done it (we could have shared both work and childcare). But the only way to enable him to keep working at his labour of love while he was ill was to give over my life to that cause.
I couldn't do it. I have a life too, and what the illness seems to constantly ask of me (via my husband as a conduit) is to give my life to it too. Sacrifice all my desires and ambitions to the monster that has consumed the husband I love. Like it didn't have enough of me, already, having swallowed my husband.
So, here we are, back at the nub of it: that he feels angry that my work is prioritised (because it earns money) while his work isn't (because it doesn't). And maybe he's right, maybe it's nothing to do with his illness. But him being ill means I can't discuss it with him (he gets angry), and he was the only person I used to be able to sort things out with. Without him, I'm lost.
*
This argument came about because I was trying, for the second time, to get him to enter into some conversation with me whereby I could explore my feelings about some stuff going on in my birth family at the moment. So I could share it with him on some deeper level, so I wouldn't feel so alone with it, so that he would know what I’ve been going through.
But he’s having none of that. He is not the slightest bit interested in what I’ve been going through. He’s been going through far too much as a result of my recent spell of work, and this is where it starts coming out. (When it is over; when I am taking extra time off to help him recover).
And I feel gutted, because I didn’t realise he was in that place. He’d done such a good cover-up job that I believed him. I thought he was tired, yes, but I still thought he was right next to me. Instead, it turns out that he, my husband, is miles away. And the one who doesn’t know me (but thinks he does) is here. He’s pissed off with me. And he’s no protection from the one I call Brian, who has probably been woken up by the arguing. The stranger husband won’t stand in Brian’s way when he comes. He just can’t care about me right now. He’s ill. That’s the only thing he can think about.
Again, it’s my working that’s the issue, my lack of flexibility, now captured in the phrase “5-day-week-family”. “I never wanted to be a 5-day-week family,” he says. That's true. At the time he became really ill, he was running a little venture that was a 7-day-a-week job. He says "that was flexible" but it wasn't. It was demanding (on all of us). For the last year he was doing it, it prevented me working (at all), and for the entire two and a half years interrupted most weekends and the significant majority of our evenings. I was alone (with a small baby) for five nights out of seven. In the meantime my husband was getting so tired that I'd need to have our daughter for long stretches of the day as well, because even if he wasn't doing paperwork, he'd need to rest. He was working (but earning no money). I couldn't work because he was either working or resting and there was a baby to look after. Without the illness, we could have done it (we could have shared both work and childcare). But the only way to enable him to keep working at his labour of love while he was ill was to give over my life to that cause.
I couldn't do it. I have a life too, and what the illness seems to constantly ask of me (via my husband as a conduit) is to give my life to it too. Sacrifice all my desires and ambitions to the monster that has consumed the husband I love. Like it didn't have enough of me, already, having swallowed my husband.
So, here we are, back at the nub of it: that he feels angry that my work is prioritised (because it earns money) while his work isn't (because it doesn't). And maybe he's right, maybe it's nothing to do with his illness. But him being ill means I can't discuss it with him (he gets angry), and he was the only person I used to be able to sort things out with. Without him, I'm lost.
*
This argument came about because I was trying, for the second time, to get him to enter into some conversation with me whereby I could explore my feelings about some stuff going on in my birth family at the moment. So I could share it with him on some deeper level, so I wouldn't feel so alone with it, so that he would know what I’ve been going through.
But he’s having none of that. He is not the slightest bit interested in what I’ve been going through. He’s been going through far too much as a result of my recent spell of work, and this is where it starts coming out. (When it is over; when I am taking extra time off to help him recover).
And I feel gutted, because I didn’t realise he was in that place. He’d done such a good cover-up job that I believed him. I thought he was tired, yes, but I still thought he was right next to me. Instead, it turns out that he, my husband, is miles away. And the one who doesn’t know me (but thinks he does) is here. He’s pissed off with me. And he’s no protection from the one I call Brian, who has probably been woken up by the arguing. The stranger husband won’t stand in Brian’s way when he comes. He just can’t care about me right now. He’s ill. That’s the only thing he can think about.
Sunday, 27 May 2007
Cups of Tea
Nothing for a month and then two in two days. But there are good things going on, and since the situation so often seems pretty hopeless, I thought I'd write something positive for a change.
Having been so absent from home the last few days with work, and knowing how much my husband was suffering as a result - but not having yet had the time to even have a decent discussion with him because we were both exhausted - I was sure I was going to have to deal with the fallout of my recent spree of overworking. I was thoroughly expecting to be punished for it, in that my husband would be feeling so awful, and so resentful of the fact that I had caused this, that he wouldn't be able to avoid at least snapping at me a little. He was so ill on Friday morning, when I was having to leave to catch an early train, that he couldn't actually get our daughter to nursery, even though not being able to complete that journey would mean he'd have her all day instead of having the morning to rest. I felt incredibly guilty and torn about leaving him that day, and completely deserving of whatever horrible treatment he would dish out to me on my return.
But everything is much better than expected. He doesn't seem to be blaming me at all, and is not only being positive and loving, but is taking some small but very significant steps towards helping himself feel better. I'll explain.
About eight months into his illness, when it began to dawn on us both what it was (and yes, it took that long to overcome our denial), I started doing the research, reading everything I could about it. Amongst other things I paid a tenner or so to download an e-book called something like "How I recovered from ME", figuring that it wouldn't be a waste of money if it even gave me one helpful thing I could use to help my husband get better. (And when I think about the thousands of pounds I've spent since in the hope of relief - thousands of pounds we essentially don't have, added to our debts - it was a good buy!) It was a very comprehensive guide to completely cleaning up your life - nothing unnatural, no additives, no chemical cleaning products, organic food only, anti-allergen dust covers on the pillows and mattress, no caffeine, no sugar, no alcohol, and shedloads of daily supplements - from specific vitamins and minerals to EFAs and chlorella. (The supplements were the first significant ME-related expense, many of them imported from America at considerable cost.) My husband agreed to try it for three months - basically, until Christmas - which he wanted to celebrate in the usual manner (normal food, alcohol).
We went at it full-tilt - including things like a parasite cleanse (though he point-blank refused the coffee enemas!). Or rather, I went it at full tilt, and he followed my instructions reluctantly. He hated the boring quality of healthy food, no matter how "interesting" I attempted to make it, and the huge number of pills (albeit supposedly "natural") that he was taking. The things he missed most were tea and coffee (four or five cups a day, always with two sugars).
When he came off the diet that Christmas the first thing he had, after taking the kids to the pantomime, was a slice of pizza and a glass of milk. He had an almost instantaneous allergic reaction - his face swelled up, and he had difficulty breathing. Not enough for us to go to hospital with, but enough to be quite shocking. What could be so harmful about a slice of pizza and a glass of milk, for goodness sake! We didn't realise how sensitised his "purified" body had become. That was followed in the next few days by allergic reactions to a) a single glass of Baileys and b) the needles of the Christmas tree. Although we talked about his going back on the diet after Christmas, he couldn't face it. He said he felt strongly that although it appeared to protect him from many of the symptoms of the illness (he felt a great deal better on the regime) it wasn't the path to health either, because the underlying illness was still there and supplements like chlorella only seemed to "mask" the actual state of it, meaning that he couldn't judge so easily (by the pains in his legs) when he was over-doing it. And in any case, he argued, if he couldn't have a cup of ordinary tea with two sugars, life frankly wasn't worth living anyway.
At times over the last couple of years, especially when he's was feeling worse than usual, I tried to gently suggest that he cut out the tea and coffee, but his reaction to this was usually irritation that I was trying to "meddle" in his health without any understanding of how it feels to be chronically ill, and that he was feeling rough enough without being made to feel guilty about having a cup of coffee, which he counted as a treat.
So I was surprised to find that one of the things that has happened during last week is that he has cut out ordinary tea and coffee completely, and taken up drinking jasmine tea without so much as putting a smidgen of milk or honey in it. My husband is not a herbal tea drinker by any stretch of the imagination, and though we have quite a few fruit teas, and redbush (for guests and for me), jasmine tea is a completely new addition to our cupboards. As if his choosing to switch to jasmine tea weren't enough of a surprise, he seems quite astonishingly good-humoured and well-disposed towards me, and yesterday we laughed a lot and had a good day together.
This has been such a rare thing over the last year or so that it is worth noting in itself, but the decision he has made, for himself, to switch away from caffeine and sugar - in this most gruelling of weeks, when he would usually be resorting increasingly to artificial props - seems to me the most significant indication that there is some genuine hope of things getting (at least a little bit) better. Certainly, despite being at a relatively low ebb, he seems more positive in himself that I have seen for a very long time.
Having been so absent from home the last few days with work, and knowing how much my husband was suffering as a result - but not having yet had the time to even have a decent discussion with him because we were both exhausted - I was sure I was going to have to deal with the fallout of my recent spree of overworking. I was thoroughly expecting to be punished for it, in that my husband would be feeling so awful, and so resentful of the fact that I had caused this, that he wouldn't be able to avoid at least snapping at me a little. He was so ill on Friday morning, when I was having to leave to catch an early train, that he couldn't actually get our daughter to nursery, even though not being able to complete that journey would mean he'd have her all day instead of having the morning to rest. I felt incredibly guilty and torn about leaving him that day, and completely deserving of whatever horrible treatment he would dish out to me on my return.
But everything is much better than expected. He doesn't seem to be blaming me at all, and is not only being positive and loving, but is taking some small but very significant steps towards helping himself feel better. I'll explain.
About eight months into his illness, when it began to dawn on us both what it was (and yes, it took that long to overcome our denial), I started doing the research, reading everything I could about it. Amongst other things I paid a tenner or so to download an e-book called something like "How I recovered from ME", figuring that it wouldn't be a waste of money if it even gave me one helpful thing I could use to help my husband get better. (And when I think about the thousands of pounds I've spent since in the hope of relief - thousands of pounds we essentially don't have, added to our debts - it was a good buy!) It was a very comprehensive guide to completely cleaning up your life - nothing unnatural, no additives, no chemical cleaning products, organic food only, anti-allergen dust covers on the pillows and mattress, no caffeine, no sugar, no alcohol, and shedloads of daily supplements - from specific vitamins and minerals to EFAs and chlorella. (The supplements were the first significant ME-related expense, many of them imported from America at considerable cost.) My husband agreed to try it for three months - basically, until Christmas - which he wanted to celebrate in the usual manner (normal food, alcohol).
We went at it full-tilt - including things like a parasite cleanse (though he point-blank refused the coffee enemas!). Or rather, I went it at full tilt, and he followed my instructions reluctantly. He hated the boring quality of healthy food, no matter how "interesting" I attempted to make it, and the huge number of pills (albeit supposedly "natural") that he was taking. The things he missed most were tea and coffee (four or five cups a day, always with two sugars).
When he came off the diet that Christmas the first thing he had, after taking the kids to the pantomime, was a slice of pizza and a glass of milk. He had an almost instantaneous allergic reaction - his face swelled up, and he had difficulty breathing. Not enough for us to go to hospital with, but enough to be quite shocking. What could be so harmful about a slice of pizza and a glass of milk, for goodness sake! We didn't realise how sensitised his "purified" body had become. That was followed in the next few days by allergic reactions to a) a single glass of Baileys and b) the needles of the Christmas tree. Although we talked about his going back on the diet after Christmas, he couldn't face it. He said he felt strongly that although it appeared to protect him from many of the symptoms of the illness (he felt a great deal better on the regime) it wasn't the path to health either, because the underlying illness was still there and supplements like chlorella only seemed to "mask" the actual state of it, meaning that he couldn't judge so easily (by the pains in his legs) when he was over-doing it. And in any case, he argued, if he couldn't have a cup of ordinary tea with two sugars, life frankly wasn't worth living anyway.
At times over the last couple of years, especially when he's was feeling worse than usual, I tried to gently suggest that he cut out the tea and coffee, but his reaction to this was usually irritation that I was trying to "meddle" in his health without any understanding of how it feels to be chronically ill, and that he was feeling rough enough without being made to feel guilty about having a cup of coffee, which he counted as a treat.
So I was surprised to find that one of the things that has happened during last week is that he has cut out ordinary tea and coffee completely, and taken up drinking jasmine tea without so much as putting a smidgen of milk or honey in it. My husband is not a herbal tea drinker by any stretch of the imagination, and though we have quite a few fruit teas, and redbush (for guests and for me), jasmine tea is a completely new addition to our cupboards. As if his choosing to switch to jasmine tea weren't enough of a surprise, he seems quite astonishingly good-humoured and well-disposed towards me, and yesterday we laughed a lot and had a good day together.
This has been such a rare thing over the last year or so that it is worth noting in itself, but the decision he has made, for himself, to switch away from caffeine and sugar - in this most gruelling of weeks, when he would usually be resorting increasingly to artificial props - seems to me the most significant indication that there is some genuine hope of things getting (at least a little bit) better. Certainly, despite being at a relatively low ebb, he seems more positive in himself that I have seen for a very long time.
Saturday, 26 May 2007
Do Parents With ME Have Lower Recovery Rates?
Having not posted for nearly a month, you may be forgiven for thinking perhaps that everything was sorted out now. Of course, that isn't the case (though I really wish it was). But I took on a lot of work this month - and some other work that was supposed to be over has suddenly come back into play as well - and I've had so little time left over that what I have had has been necessarily given to husband and family. Not that they've had enough of me by any means. In fact another reason for staying away from here (even if I had felt, at any point, I could snatch half an hour to write something about the state of play) is that I have been avoiding thinking about the damage I am doing.
Is this wrong? There are times when I just have to close my eyes and knuckle down to work, even though I know my husband can't stand the current level of activity. I tell myself that it is only temporary; that it is necessary; that someone has to bring money in, and that someone has to be me. Because I'm freelance, work doesn't always come in manageable chunks - sometimes, the necessity to say "Yes" to almost everything (because there can be long periods of drought) leads to temporary overload.
So I've stayed away from here partly because I know he had been getting iller, and that my work (work I enjoy and want to do) has been the cause. There will be payback - both in terms of the longer time he will take, now, to recover, and because there is a good chance his increased level of illness and capacity - provoked by me going out there and having a life - will lead to problems between us. I don't want to be the cause of these problems. I long for what I still think of as a "normal" life where we both have stuff we do, and both is happy the other is doing stuff, and what I'm doing isn't the direct cause of his pain; a husband in good health, able to withstand the extra domestic duties that come from a brief spell of increased busyness on my part. I know this isn't what I have, so when I occasionally plough ahead regardless in a slightly bloody-minded way, I try to suppress my guilt.
Brian, interestingly, has not come back. I guess this is the point where I should stop being surprised about that and recognise that my husband has entered a new phase - he has gone from anger (about not getting better) to resignation (that he's not going to). Acceptance of the illness is a necessary stage, I gather, in getting better - but this seems much more like resignation than acceptance, and I'm not sure it's going to help him any more than the anger did. It's a great deal easier for me, in some ways - I much prefer not being constantly shouted at and having my personality flaws constantly exposed to scrutiny - my inadequacy as a nurse, my inability to plan properly etc. But he is completely without hope - he now says "I'm not going to get better". And the mind being a powerful thing, I can't help thinking he's making it true by saying it.
He's not open to any discussion about his approach to ME (believe me, I've tried), so I feel there's nothing I can do about this but be there for him and wait until he works through this phase and gets to the next. Trying to persuade him that he might get better only provokes anger (tickling the outer edges of the sleeping Brian). He's recognised that family life doesn't allow him the rest he needs to recover and that until at least some of the kids have grown up and left home (and the youngest become older and more independent) he won't get it. But we're talking easily ten years here.
I wonder - and I'm assuming the answer's no because of the appalling lack of research into ME generally - whether there is a significantly lower rate of recovery from ME amongst people with families. I read somewhere that the chances of making a "full" recovery decrease signficantly after the first two years. We're already a long way outside that timeframe (18 months outside), so it may be true that statistically, his chances of recovery to anything like normal health are slim. If having children around you keeps you ill because you cannot rest, does that mean ME sufferers who are also active parents are amongst those not very likely to ever make a full recovery? It's a depressing thought, and not one I really want to leave with, but people are beginning to wake up, and after my recent bout of overwork, my husband needs me to be present.
Is this wrong? There are times when I just have to close my eyes and knuckle down to work, even though I know my husband can't stand the current level of activity. I tell myself that it is only temporary; that it is necessary; that someone has to bring money in, and that someone has to be me. Because I'm freelance, work doesn't always come in manageable chunks - sometimes, the necessity to say "Yes" to almost everything (because there can be long periods of drought) leads to temporary overload.
So I've stayed away from here partly because I know he had been getting iller, and that my work (work I enjoy and want to do) has been the cause. There will be payback - both in terms of the longer time he will take, now, to recover, and because there is a good chance his increased level of illness and capacity - provoked by me going out there and having a life - will lead to problems between us. I don't want to be the cause of these problems. I long for what I still think of as a "normal" life where we both have stuff we do, and both is happy the other is doing stuff, and what I'm doing isn't the direct cause of his pain; a husband in good health, able to withstand the extra domestic duties that come from a brief spell of increased busyness on my part. I know this isn't what I have, so when I occasionally plough ahead regardless in a slightly bloody-minded way, I try to suppress my guilt.
Brian, interestingly, has not come back. I guess this is the point where I should stop being surprised about that and recognise that my husband has entered a new phase - he has gone from anger (about not getting better) to resignation (that he's not going to). Acceptance of the illness is a necessary stage, I gather, in getting better - but this seems much more like resignation than acceptance, and I'm not sure it's going to help him any more than the anger did. It's a great deal easier for me, in some ways - I much prefer not being constantly shouted at and having my personality flaws constantly exposed to scrutiny - my inadequacy as a nurse, my inability to plan properly etc. But he is completely without hope - he now says "I'm not going to get better". And the mind being a powerful thing, I can't help thinking he's making it true by saying it.
He's not open to any discussion about his approach to ME (believe me, I've tried), so I feel there's nothing I can do about this but be there for him and wait until he works through this phase and gets to the next. Trying to persuade him that he might get better only provokes anger (tickling the outer edges of the sleeping Brian). He's recognised that family life doesn't allow him the rest he needs to recover and that until at least some of the kids have grown up and left home (and the youngest become older and more independent) he won't get it. But we're talking easily ten years here.
I wonder - and I'm assuming the answer's no because of the appalling lack of research into ME generally - whether there is a significantly lower rate of recovery from ME amongst people with families. I read somewhere that the chances of making a "full" recovery decrease signficantly after the first two years. We're already a long way outside that timeframe (18 months outside), so it may be true that statistically, his chances of recovery to anything like normal health are slim. If having children around you keeps you ill because you cannot rest, does that mean ME sufferers who are also active parents are amongst those not very likely to ever make a full recovery? It's a depressing thought, and not one I really want to leave with, but people are beginning to wake up, and after my recent bout of overwork, my husband needs me to be present.
Monday, 30 April 2007
Changing Husbands
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.
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.
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