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.
Sunday, 27 May 2007
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.
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.
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