Snowchild

It's funny how much things have changed in four months. My life is a lot more peaceful, and my husband isn't ill anymore. There is some closeness to be rebuilt but we are both managing to sidestep arguments. Now the season of peace and goodwill comes along to add its special magic, and despite the pressures of planning and preparing for Christmas (with four children, and in my case, two dozen relatives to buy for!) we have kept the air light and relatively tension-free.
After a spell of great excitement about this new world I've stumbled upon (energy medicine sounds kooky when you come from as straight-laced a scientific background as I do) I have adjusted to the fact that the world is still ticking on in much the same manner, and that most of the time my reality must coincide with that of the people around me.

Everyone has to find their own way to peace and happiness; this has been mine. Most people aren't even sure that peace and happiness are achievable, so I guess I was lucky that I always had a strong conviction that life could be better, and a hope that we might get there again.

So Christmas is coming, and with it, the time to properly connect. We started this afternoon at our daughter's first ever Christmas show, organised (with great courage, I thought!) by her nursery. We were - for the first time in my life, I confess - front row parents, beaming at her and whispering admiring things to each other. Look what we created! Isn't she sweet?

I've been incredibly aware, these last four years, of the power of children to drive their parents apart, no matter how strong the parents' love. It's good to become aware, also, of the power of children to bring their parents together. All this recovery, in some sense, and all of our battle (and eventual ceasefire) to stay together was underpinned by our determination not to damage our daughter. It was lovely to sit together and watch her beaming from the stage, dressed as a "snowchild", with a carrot for a nose.

Merry Christmas to each one of you, and may the mid-winter festivities warm you.

Healing The Dog

This morning, I was coming out of the shower when my husband came down to tell me that our dog (13 years old) had just collapsed, peeing a little in the process. He said he'd heard the scrabbling of feet, exactly the same sound that had preceded our last dog (this dog's mother) dying about five years ago. When I got to the dog, he was looking very unwell, too weak to stand. He had peed, it seemed in shock, and was lamely, really sadly, trying to lap it up (something he would not normally do with his own pee - but it was like when animals eat their own sick, perhaps they are trying to clean up. He looked really embarrassed, ashamed, as well as being shaken and clearly unwell.

I started doing EFT on the dog very early on, after only about 6 weeks of using EFT on myself; first on his kennel cough, which seemed to me to be associated with his loneliness (and so keeping him on a lead, as the vet advised, was actually aggravating it). I wasn't sure if it would work, but I hugged and held him and concentrated mentally on his tapping points. The cough went away. Could be fluke, obviously.

But he was booked in for a castration at the time because of a prostrate problem; and at just this time I started reading accounts of people healing their animals with EFT and I just knew I didn't want him to go through that operation (poor old man), the pain and humiliation, if it wasn't necessary. Let alone the fact we don't have £200 to throw around in this house. So I figured it was worth a try. I read a particularly useful account about a woman working with her cat, made a mental note of the technique, and then - while I was walking the dog one night - I just focused mentally on all his points, doing as best I could to mentally "tap them" while saying affirmations for him about his frustrated desire for local bitches (he'd had a particularly teasing encounter with an alsation in heat the previous day and was due, I suspected, another flare up.) I also worked for a couple of rounds on the physical pain, his swollen prostrate gland. What harm could it do?

That's two and half months ago, and his prostrate hasn't flared up since. Previously it was happening every time the chemical castration injection wore off. He hasn't needed to go the the VET since I took up EFT. A couple of other problems have been observed, worked on and disappeared: weakness in his spine and backlegs, an infuriating itch in his back. So this morning, as soon as the dog collapses, I'm called for. It's lovely to be able to help him - gentle, and simple.

He was well enough, within fifteen minutes, to get up and go for a big drink of water. We took him out for his usual walk - I went along to check he was fully better. He's right as rain now, and curled up snoozing in his basket.

My Ordinary Everyday Reality

I'm not going to come on here and tell you things are all roses and will forever be, but there is a sense that the drama has died down, and we are more aware of each other. There is much mending to be done, after the ragged damage inflicted on us by the last two years.

You'll see I've changed the Profile blurb for this blog... this blog is no longer about ME, because this is no longer the largest feature of our lives. It might at times be about trying to mend a marriage that has been ravaged by the pressures of the last four years (since our daughter, youngest of my brood, was born, which included my husband's chronic illness (brought on, I've no doubt, by the stress of overwork). But more often, I suspect, it will be about the positive impact on our lives of the extraordinary healing tool that ME led us to.

It's been nearly four months since I first learnt EFT and I have to remember constantly that to other people it seems very weird. To me, now, it is becoming increasingly ordinary - although I am constantly gratified (and still, sometimes, surprised) by the positive effects it has on me and on the people around me.

Some of it sounds a little crazy, I know, but you're just going to have to take my word for it - I'm completely sane. The fact is, you can not only heal yourself with EFT, but you can heal others. If you read the science around EFT, you can understand why this might be possible - but it is still something many find hard to accept, because it is so new (and yet, which might worry them most, is as old as 2000 years ago).

I know, if you're not doing EFT, all this is bound to sound odd, and you might think I've ever so softly and harmlessly flipped. But this is a true account of every-day reality in his household. And you know, as realities go, I vastly prefer it to my previous one. And so do my husband, children, and pets.

The Dawn of Peace

To update this account of my own rather bumpy journey towards reclaiming my husband from this chronic and debilitating illness, we are being softer with each other. He watched the first EFT DVD yesterday, all the way through. As long as I give him some time to himself every day, he will spend some time doing EFT (which is what we both need him to do). This is held in balance against me needing to spend long hours sorting out my feelings at my desk before I start work (I work for myself, luckily, so I don’t get complaints from the boss). And then actually getting some work done, because I am being funded by public money and what I produce better be something good. It would be so nice to be able to get straight down to work, and then I could probably do everything I needed in half a day (as equality and fairness in this partnership requires). So that’s why EFT continues to be my daily necessity. It offers insights and new perspectives. It’s about developing the art of communication, and good communication is what we all need (both good broadcast and good reception).

I must get down to work now, but I thought I’d assuage any concerns about me. My husband has agreed this must be worked out in peace rather than aggression. The more progress I can make in reducing my own problems, the easier it is to just be there for him.

This Demon Doesn't Want to be Exorcised...

I am down here in my basement office, and Brian - yes, Brian, my darling husband's violent alter-ego - is upstairs polishing off a bottle of whiskey. He is very, very angry (at the throwing things stage) so I have left him to it. At the end of the last post I said I thought things would be alright so long as he kept tapping. He stopped tapping just after I wrote that post.

Had this been a few months ago, after all the verbal assaults that have just come my way, I would have been down here crying. As it is, I am typing very calmly. Why? Because EFT works.

Why, then, has my lovely husband disappeared and Brian returned? Because EFT works, and Brian is very, very angry about that. Angry, so he shouts at me tonight, that he has been looking for some kind of spiritual answer all his life and I have found it. He can't accept that I should be the one to find something that works. He likes to find answers for himself.

What could I do, though? He wasn't looking for a way out. He was accepting his illness and the massive impact it had on all our lives (there are six of us in this house). He wasn't trawling the internet for anything that might help (as I did almost daily for three years). Even if he had been looking, brain-fog prevented him from reading. And even if he had been able to read, he hates "other people's answers". He has always despised self-help books and those who read them. He hates "being told what to do." Hates school and anything that looks like school. He doesn't believe in learning from other people. He doesn't believe in "easy answers" so how can he accept this one, even when he has proof that it works? That it worked for him (as far as he was willing to tap, which isn't far) and is working daily (and profoundly) for me. The more he can see that it works, the more he has drawn away from it.

He stopped tapping because he said he needed to understand better how it worked, and until he understood how it worked, he didn't want to tap. He hasn't made any attempt to get any further with finding out how it works (and the understanding is out there, if you want to learn) but he now says he is "suspicious" about EFT. For a while just me tapping on myself, and surrogate tapping on him, was helping him get better. He kept saying he would start tapping again when he had finished reading the manual. He would watch the EFT DVDs when he had finished reading the manual. But he would rather watch lots and lots of Top Gear videos than read the manual. He made it an extremely low priority, and is no further on in the manual (which took me two hours to read) than he was a month ago.

Not surprisingly, therefore, and with a sense of depressing inevitability, I have watched him slowly become overwhelmed, again, by the negative emotions that have been trapped inside his body ever since he was 11 years old. I've watched his face grow slowly more fearful and less friendly, more tired and locked up, putting up his defences against me so that even warmth and friendship can't penetrate. An increasingly number of miscommunications were occurring, and I could sense he was projecting stuff on me from his past, and reading me wrongly. Seeing me as the enemy. I handled all this much better than usual (thanks to EFT) but that seems to have made him even angrier.

Again, as before, he's started telling me (both explicitly and by his behaviour) what a shit person I am. Yesterday, he thundered down the stairs in a rage, accusing me of "breaking promises" to our daughter, because I had put a few dishes into the dishwasher before coming upstairs with her warm milk (but I was making the milk even as he thundered downstairs). And this was at the end of a day spent together with our daughter in the countryside; a good day, and I spent the last hour playing piano with her on her mini-keyboard, Mary Had A Little Lamb over and over again, singing loudly. We were having fun. He pretended to be having fun right up until the last moment when it turned out he was at the end of his tether.

EFT works, but only if you do it. I've been doing it every day, and it's been extraordinary. A week ago, for example, I was out for the evening (we were supposed to be out together but he cried off at the last minute) and halfway through the night my nose started running, my eyes watering, and I had the repeated urge to sneeze, and I could feel something "coming on" - that horrible lurgi that one of my friends (who I insisted on hugging even when she was ill) kept assuring me I would get. I went to the loos to get a whole load of loo-paper for the running nose, and did two rounds of tapping while I was there. Within 15 minutes, all the symptoms disappeared. I had directed my immune system to spring into action and - bless it - I guess it did. The next afternoon, symptoms returned briefly but I tapped them away again and haven't had a problem since. Yes, that's right, ladies and gentlemen, a cure for the common cold.

No wonder my husband hates me. From his perspective, I'm starting to look like a witch.

I did realise about three weeks ago that me doing EFT (while he steadfastly avoided starting it) was putting distance between us. I am really sorting out some serious stuff, getting a real sense of control over my life and that emotional freedom the name of the technique promises. It has been so immensely helpful in getting me through the difficulties of every day that I made the decision that I could not abandon my use of EFT, even if it increases our distance. He will (until he decides to take steps to do otherwise) continue to go through these cycles of depression, rage and self-destruction whether I'm able to handle it or not. I choose to handle it, and EFT works where crying and despairing never did.

I really wanted him to come with me on this; I asked him to. I wanted us to do it together; doing EFT together brings you closer. He refused. So I was obliged to make this journey alone when I'd have much, much rather had his company. Had he come with me, we wouldn't be having these problems now.

So my husband isn't languishing with ME any more, but he's about a million miles from okay. I'm not happy about that, obviously. I would like the other husband back, please, the one who loves and appreciates me and who can see me as I really am, the one who isn't blinded by his rage and jealousy and sense of injustice. But I can't make the man tap. The solution's right there if he wants it, but he doesn't want it, because he's afraid it'll take away his anger and he feels his anger - at me - is justified. (He thinks everything in his past is "dealt with".)

He's wrong of course. This anger should have been levelled at others. At the boys who bullied him and chased him and beat him up and called him "paki", at the parents who didn't notice their son was too afraid to leave the house for five years, the mother who smothered him with her anxiety and fears for his safety (don't climb on that wall, don't go near water, don't do anything adventurous in case you get hurt) at the same time as calling him "scruffy" and "lazy", the father who he knew as "the man dozing in the chair on Sunday afternoons" and who, these days, bulldozers his son with his incessant one-sided conversation, and God knows how many other people that have pissed him off or let him down or abused his good nature in the last forty years.

Unfortunately, he is not in a position to see any of that. Unfortunately, all the anger that should be associated with the people from his past is now associated (in his mind) with me.

There's nothing I can do, then, but look after myself, keep tapping for my own emotional and physical health, and hope this crisis will bring him to some kind of awakening.

A Return to Normal Life

I have been hesitant to say this, as it is so often the case that the moment you start to relax and think things are going well that it all turns bad again. But for the first time since my husband's last major relapse in February 2006, we are living what feels like a normal life. This is something I've craved for so long it seems bizarre that we have slipped into it almost unnoticed. I have been scared to acknowledge it in case it turned out to be a mirage. But we have finally arrived at a place where I can book things into my diary without causing problems between us.

For a long time now, I have had to consider my husband's illness every time I try to schedule work; every date has had to be negotiated carefully, and gaps left for him to recover if anything I do will lead to him being overloaded with childcare. I could never, for example, do two days work (out of the house) in a row. Yet next month, I'm going away to Yorkshire for five days, with his blessing. The proof of that pudding will be in the eating, and I hope it's not a dangerous experiment, but its quite something that he feels strong enough to agree to it.

And after a year and a half of not being able to arrange an evening out because my husband is always too ill - too ill to come, and too ill to be left alone to cope with the children - I am finally getting back some kind of social life. For a long time now there has always been a price to pay for going out in the evening; my husband's illness would be worse for a few days; often, he would be angry with me about the position it put him in, the fact that he would feel worse as a result. Agreement to anything that would leave him alone to cope with putting our daughter to bed was given grudgingly; his ME always in precarious balance with my need to live "a normal life". (Something that, in my times of despair, I have mourned the loss of).

In the last couple of weeks, normal life has been there for both of us, as if it never went away. I've been out several times without it causing any kind of problem. I've been able to work full days and emerged to find my husband cheerful and in good health. Even though I've had a heavy week of work, he has managed to hold the fort, and not suffered any kind of setbacks. He 's only marginally more tired, at the end of the day, than I am; and occasionally, less. On Saturday, we going to a party together. It has been a long, long time since he has felt able (or been willing) to go to a party. I'm the gregarious type, and I've very much missed being out with him; being a couple in public.

He's picking up his life again. Friends are beginning to drop in us like they used to; he's started to develop some of his interests, now that he can do the research without getting brain-fogged. He did a full day's work yesterday - performance workshops with primary school children - the sort of thing that, not long ago, would have knocked him back for a week. Yet he was in a better state to get our daughter to nursery this morning than I was, and is currently working at a laptop on the kitchen table, with no sign of malaise or post-exertion fatigue. EFT consistently delivers things that look like miracles, so at some point I should stop being surprised.

I'm fairly confident, too, that he's not overdoing it (as has so often been his downfall in the past) - he is being careful now about what he takes on, and is still listening to his body and resting when he needs to. But his body is giving him less trouble than it has for a long time. No doubt there will be challenges, possibly even setbacks. But we are, at least for now, living what feels to me like the normal life I have been craving ever since his ME took over our lives.

He's not as involved with EFT as I am, yet, but he has turned towards it, and is learning in his own time. He appreciates what it can do for him; for us. I think it's probably harder for people with ME to do their own EFT because of the energy-depleted state of the body; he reports the effects as being much weaker when he does it on himself than when I do it for him. But as his cells slowly repair, this should change.

I can't tell you what a relief it is to live like this; health is one of those things whose value you don't appreciate until you are forced to live without it. I'm actually a little afraid to trust that my husband is going to continue to be well, and be fully restored to me - at this stage, I'm holding something of myself back in case it collapses and proves to be an illusion. Trust needs to be rebuilt on both sides, and strangely, my husband is now rebuilding his trust more quickly than I am. But good and significant things are happening, and so long as he sticks with EFT, I believe we will be alright.

Possible breakthroughs

I'm a few weeks into using EFT for myself now. It's without question the most powerful and effective healing tool I've come across. For physical pain it has proved itself consistently more effective than any chemical kind of pain relief (for both of us). But EFT's effectiveness on emotional issues is nothing less than profound. It can facilitate the kind of changes that our culture has led us to believe are impossible. The things EFT makes possible are not the sorts of thing you can tell people; it sounds like nonsense. A person has to experience EFT themselves, and feel it work.

My husband was fine with EFT until he realised it would mean digging up the past. Sometimes we think we have dealt with something, but it is still there. My husband was quite sure he had dealt with the "demons" that came out of his being bullied and racially abused as a child - and on one level he certainly had - but on another level (his subconscious) he hasn't. Our subconscious mind controls more than our conscious mind ever can, especially in terms of our automatic emotional responses. We haven't had any effective way of rewriting the software of our subconscious minds before now - counseling, for example, makes you aware of why you react the way you do, but is close to useless in helping you change those reactions. I've found EFT to be brilliant for this, by comparison. In the last couple of weeks, backing up what I was learning through EFT, I read Bruce Lipton's The Biology of Belief; an astonishing, eye-opening book if ever there was one. Here, a cell biologist explains the science behind my new appreciation that we can choose not to be the helpless victims of our childhoods, or of our "incurable" illnesses, or of our DNA.

I found EFT only, in the first instance, because I was looking for us to find a way out of my husband's illness. Not just the depression which goes along with ME, but the ME itself. And is the ME lifting? The answer is yes, but not because my husband is practicing EFT himself. I've been doing EFT daily on myself, but in the last two weeks I've also been tapping surrogately for him (now that I've a better grasp on the whole thing), because he felt "unready" to go any further with EFT after initially finding it very helpful for symptom relief.

If you don't understand how EFT works, I'm sure this'll sound weird, but towards on Wednesday last week I tapped for his fear of whatever it is that is stopping him from doing EFT, and within hours it all came out (which wasn't, for me, a pain-free experience; be careful what you wish/tap for!). The upshot - his revelation that he no longer trusts me since I wasn't able to stop working when he needed me to - is not easy to deal with. But now that it has been acknowledged, it has cleared the ground between us. We've had a weekend of being closer together and he feels ready to move forward.

He is already a lot better (i.e. less exhausted, less allergic, less in pain, less clouded by brain-fog) than he was a few weeks ago. He openly wondered at the weekend whether part of this was due to the fact that I had been working on him remotely (he understands how and why that is possible) and I admitted that I had. He wasn't upset about this; he was enjoying feeling better, and he'd already intuitively worked out where some of that might be coming from. He has now decided to pick up EFT again and start working actively on clearing the ME himself.

In the belly of the whale.

I have to help myself, and I have to do it alone. I can’t help my husband be alright, I can’t break through his defences in any way right now, but I can at least provide as much support as possible to myself. If that means me spending hours away from here, down here, trying to heal every hurt that life is throwing or has thrown at me, then at least that is doing something positive. If I can find a way of handling his anger, resentment, fear, negativity, rejection, withdrawal, irritation, criticism, depression, sickness, suffering… then I will be doing the best I can do.

EFT is a genuine route to a sense of well being and personal peace. In the last month I’ve achieved this, for hours and sometimes days at a time, through EFT's simple self-administered tapping routines, and know that continued use of EFT will help me make sustain and expand these profound positive changes. Yesterday was one of the happiest days of my life, and the happiness was from deep inside me, its release facilitated by my progress with EFT. Though I have often depended on others to make me (or keep me) happy - which my husband doesn't have the resources to do right now - real happiness can only come from the self, as we all know. It's brilliant to have found a tool that makes genuine, from-the-inside-out happiness so accessible.

But it's hard to accept that when I am suffering and desperately need the man who was once my closest friend to reach out to me, he can't . That’s why I have been practising EFT and expanding my knowledge of it so fervently – so that I can be okay without his support. Sometimes just get through the day, but other times thrive. Unfortunately, right now, only one of us is in a position to inject some positive energy into the marriage and into the family, and that’s me.

EFT is helping me enormously me to help myself, but I can’t help him. Right now, and this is related to depression rather than ME, he doesn’t want to get better. He’s seen the chink of an open door and not only can he not go through it right now, he has turned his back on it. His illness is clinging onto him, and he is clinging on to his illness.

It is very familiar, a very close cousin of the depression in which I found him when we first met, only he can’t see that, because he is still in the darkness. As he always told me (in the years after he conquered his last depression), people keep themselves ill, they cling on to their depression, argue for it, take courses of action that sustain it, because it feels safer than facing their problems. And yet, as he knows from his three previous bouts of severe depression (and has repeatedly advised depressed friends when he is well), once faced, the problems are never as huge and scary and insoluble as they seem when you push the door shut again and turn your back to it and lock yourself in the darkness.

He has been watching The West Wing relentlessly for two weeks now. He started on the first episode of series one and is now on the second disk of series 7. He won’t challenge himself on this. He says he needs it. He does it in every spare moment he can; the minute I leave the room he resumes it again from the point where he paused it when I came in. He watches it for hours every day, and when he is looking after our daughter, he sits *her* in front of DVDs for hours at a time so he can watch *his* on the laptop. He says it is helping him. He says that watching West Wing is his way of thinking about where he is and sorting himself out. Except I know from watching West Wing with him the first time through that the dialogue is so fast-paced it fills up your brain and doesn’t allow you any time to think at all, which, when you watch three or four episodes back to back like he does, is its purpose. It is his way of sorting himself out, he says.

And how much less ill is he 6/7^ths of the way into the West Wing? He is, of course, exactly as depressed as when he started, and significantly more withdrawn. Connection between us became increasingly fragile and has now has broken down. Tonight, we had a serious row.

In a small calm between his outbursts of anger, my attempts to find a bridge to him, and my copious tears (and utter despair) when those attempts hit wall after wall, I did at least get some sort of agreement from him that he will watch the EFT DVDs with me [which he previously refused to do, saying he had to read the rest of the manual first. When I asked him, as gently as I could, when he thought he might have a go at continuing to read the manual he said he didn’t know because he can’t really read because he’s too ill. He said he wanted to understand how and why it works before he did any more of it (even though it helped him feel better)... but then stopped reading the manual, began to suffer again, and is now, he says, too ill to read. It is the perfect circular argument for your own prison].

Anyway, he’s softened on this one point (a point on which he was adamant before tonight) and has said he will, but I can’t be sure it’s going to happen any time soon. Chances are he’ll find ways of avoiding it. He would be angry with me for saying this but my strong sense is that he needs his depression, and spends what little energy he has fighting to sustain it. He can’t get better from ME without getting out of depression first, but he has withdrawn further into depression (and ME) because the fear of what will be uncover in the proces of tackling it (including the void of what comes after) is overwhelming. I know EFT can help him. We have already seen it help him. But he got scared. He is, I suspect, deeply afraid this will prove to be another massive disappointment, a last hope smashed against the rocks, leaving him powerless forever. So he pre-empts the assumed non-solution by simply turning away from it, saving himself from the imagined pain.

This is me trying to understand what is happening; he would vehemently refute most of it. Depression is not a place where one can think straight or find insight. It is hard to see something clearly when you are locked inside it. He doesn’t recognise that this is depression, even though he has had severe depression several times before.

And I do understand, because I’ve been the same when I was depressed. It’s hard to recognise the familiar monster that has swallowed you, when you are in the darkness of its belly.

Sorting Myself Out First

We've been having a bad couple of days; the first bad patch for 8 weeks. There are numerous reasons (aren't there always) but chief amongst them have been my husband's struggling to complete some work that he took on months ago, and some emotional fragility on my side brought on as the result of my trying to tackle some of my long-standing demons with EFT.

The EFT started with me, and my husband feels strongly (and I've now agreed) that I'll have to work on myself first, and my husband second. I have a huge backlog of issues from my past that mean I react badly to many of the things that ME throws up in our lives. EFT is really helpful in allowing me to deal with those issues as they arise, but it seems a whole pile of ancient history is arising now, practically queuing up to be dealt with, and as I have also taken on pretty much 100% of the household chores, I've been feeling quite overloaded at times, and have reacted badly, a couple of times, to my husband snapping at me when he is tired.

Recovery from ME is not a smooth path, so this isn't a setback. In the end, I hope it will prove to have been a positive development, a way of making progress. I'm desperate for my husband to be well again, but desperation is a negative emotion, and creates a sense of pressure. So I'll see if I can tap away my desperation, as well as many of the other negative emotions that loving a man with ME brings up in me - all of which are rooted in my childhood (where I was routinely misunderstood and underappreciated).

I'm still very sure that EFT is going to be our way out of this. It's remarkably powerful, and I feel the benefit of it every day. Yesterday, some melted plastic dripped onto my thumb knuckle when I was stoking a fire, and even though it blistered up instantly, I managed to tap away the pain in less than a minute. Emotional pain is more knotty and multi-faceted, but I am making progress there too, piece by piece, event by event. It's just going to take some time. And when I'm more solid, I'll be in a much better place to help the man I love.

On No Longer Being Useless

One of the things that used to really get to me about my husband's ME is that I couldn't do anything about it. No matter how hard I tried to help him, I couldn't make him better. I felt so helpless (and hopeless) in the face of this relentless illness that for the last two years I have often avoided being with him when he has been at his most ill because hanging around his ME was so frustrating and depressing.

Particularly, I'd be working (I work from home) and would hear him having a sneezing or coughing fit - a sure sign that he was having a bad day and getting worse - and I would just try to blank it out and plough on with my work, knowing that when I emerged, he would most likely be angry and miserable. I knew he would want me to stop and take over the childcare, but I was resistant. ME would have me doing childcare 24/7, and who would earn a living, pay the bills? I did what I could but I also felt that what I could was pretty much nothing. Barring giving up my life completely, what could I do? ME had already swallowed his life - I'd be damned if it swallowed mine too. Damned if we fell into debt for it, lost the house. And anyway, it seemed that no matter how much I looked after our daughter, my husband would continue to be chronically ill.

EFT has changed all that, because now I feel there is something I can do that genuinely helps. When I hear him sneezing, or notice some other symptom that is the start of the daily downhill slide, I stop what I am doing, go to him, sit him down, and encourage him to do some EFT. He feels cared for, I feel useful, and above all, we have something that helps him feel almost immediately better.

Last night he had a severe headache; when I got in I relieved it with EFT in minutes. As always seems to happen after a late session of EFT, he then relaxed into an unusually deep and solid sleep, which helps him enormously. It is my goal to tap him every evening if I can for just this reason, if I can.

He's doing a little EFT himself but it seems much more effective when I tap him than when he taps himself, and I'm very happy to be in the position of "healer" rather than "person running away and exacerbating the illness." There is a long way to go, of course - and we are miles away from core issues, which he will come to when he feels ready - but for now we have drug-free instantaneous pain-relief, refreshing sleep and healing at our fingertips.

EFT is empowering - not only because it's so good to be able to help him, but because it helps me banish my own negativity and health problems, leaving me more able to cope with anything extra his ME might need me to deal with. So even though he is still unwell, he is a great deal better than he was a couple of weeks ago, and I am thrilled to be instrumental in healing him.

I am hopeful that he will be considerably better by Christmas. Time will tell.

Energy and the Lack of It

As you might have noticed, I haven’t been blogging. For the last few weeks I have been putting my energies exactly where they are needed, which is into sorting my husband out. While he was being Brian, his angry, depressed, illness-centred alter-ego, spending more time with him and giving up six to eight hours a day to childcare and housework wasn’t in the slightest bit appealing. But we finally reached the bottom and both had something to kick against. We are on our way up, and I have every hope that we will be surfacing in a matter of only months. Not from depression and marital strife – that has happened already – but from ME.

For the first time in two years, I genuinely believe he is going to recover now, and that we will be able – at last – to fully live the life we deserve. Enjoy a healthy, happy, life together.

When we first visualised his recovery, some time ago now, I pictured (as positive thinking demands) the image of us that would signify his recovery. I said going on holiday and being able to do the amount of walking and sightseeing and doing that we both want to. Venice (our honeymoon) was ruined by the ME. It was the first time realisation really dawned. He had been ill for six months but both of us were in denial. Neither of us wanted it to be ME. So it wasn’t. We didn’t want to talk about. But just a short walk out to get breakfast and see one sight would exhaust him. We’d go back to the apartment (a beautiful apartment not far from the fish market and The Rialto Bridge) for lunch and he’d go to bed for the rest of the afternoon. As I think I’ve mentioned before, I came back from my honeymoon an expert level electronic solo backgammon player. I think that was probably the time I started getting (ever so gently, and deniably) depressed.

ME is all about energy. Lack of it. And with all I’ve read about this illness, all I have thought about it over the last three and half years – coming at it from many angles, both physical and psychological, has benefited from what I already know about human biology (which I have to degree level), and my interest in energy fields and energy moving, and my yearning to understand, and to able to allow something you might call “spirituality” despite my scientist side.

In ME, something is wrong with energy-generating capacity of the body. At the cellular level, research has shown that the mitochondria (the energy-producing organelles) of people with ME don’t function normally. Under stress (such as the exertion of exercise) they fail and even die.

Energy medicine is where all my research seems to come together.

This post was written six days ago, when my husband was very ill, meaning I didn't have the time to finish it.

EFT & ME

Some of you will have heard about EFT. You can learn it for free from Gary Craig’s website. It sounds ridiculously simple to the point of impossible: you tap on the ends of the energy meridians (those that are used in acupuncture) while repeating an affirmation, and you can heal yourself: of emotional trauma and physical ailment alike. From toothache to Post Traumatic Stress Disorder.

Oh come off it, you say.

But it only takes two minutes to apply, it’s easy to do, you can self-administer at a moment’s notice. What if it works? And what if it can cure M.E.? I watched the 7 minute video and tears came to my eyes. I want my husband to be well. We have suffered his illness for three and half years, and its about time we clawed our way out the other side.

Over the last three years I have spent hours studying the condition in order to understand it better. I understand it is a severe physiological illness, involving the immune system, the nervous system, and pretty much every part of the body. But here is a man who says EFT has allowed him to completely recover from Multiple Sclerosis. How could I not give it a try?

I downloaded the free manual and read it in a couple of hours. I tried it on some shoulder tension (which usually leads me to headache). The shoulders seem to loosen and relax some. I tried it on my back pain. A couple of times. The back pain went. The next day I started to develop a headache. I tapped for it but it didn’t go completely away and after a few hours I had to resort to painkillers. I was disappointed.

The next day I was feeling really energised, having tapped myself to wake up for an early swim. About three in the afternoon I started to develop allergic cold symptoms (runny nose, sneezing). I thought about all the times this has happened in the past year or so and it is always on a day when I’ve been swimming in the morning. Then it dawned on me – it was the chlorine making me ill. I reread the section about why EFT sometimes doesn’t work, it became obvious that chlorine was acting as an inhibitor – because the day I’d developed the headache that wouldn’t respond to tapping, I’d also been swimming first thing. And now, I had the warning signs of a migraine.

I scrubbed myself thoroughly all over with water (no soap or detergent), got into clean clothes, and did two rounds of tapping. My migraine went away. In minutes. Without drugs. Since then I’ve had success with what you’d call recurrent infections: women will be familiar with these regular visitors. But I banished each one of them through a few minutes of tapping. Aren’t they supposed to be caused by infectious agents? Then how come I could heal them completely with my mind?

I desperately wanted to tap on my husband from the outset, but he was sceptical and when I talked about what it involved, got rather angry about it. It was the affirmations, in particular, that he found offensive. Which I do understand, but I also knew I was having some astonishing results. So I decided I should just carry on using it in my own life and see if at some point the patent benefits might intrigue him. I thought a change of heart might take weeks, but it took only a couple of days. There's a reason why they're called wisdom teeth.

My husband has wisdom teeth coming through, and has been in a lot of pain. He saw a dentist six weeks ago who said one tooth was so near the nerve that he was afraid to operate in case of nerve damage, so there was nothing for it but take painkillers and wait it out for weeks or even months. The pain had increased day on day, and now the painkillers couldn't touch it: my husband was in agony to the point that he couldn’t look after our daughter for even five minutes at a time, meaning I couldn’t work, so the whole house was ruled by his toothache. I, on the other hand was benefiting so hugely from using EFT (including ensuring that I didn’t fall ill myself) that I was able to handle everything he threw at me (not, I hasten to add, literally).

He could see that it was having a very real and positive effect on me, and finally, after I'd been tapping myself for a week, he asked me to tap out his toothache.

In five minutes it went from “severe throbbing in tooth and jaw” to “dull ache and throbbing in tooth and jaw” to “dull ache in jaw” to “strange feeling in my tooth”. Painkillers hadn’t worked, but EFT had reduced his pain to zero in a few minutes.

Ever since then I have been using EFT on my husband. He finds it hard to tap on himself and finds the effects much more powerful when I tap on him, which I guess would make sense given our very different energy levels.

We’ve been working symptom by symptom, to start with. Usually he’s in pain by the end of the day so it’s pains we’ve been eliminating, and I’ve been longing to get past these to his chronic fatigue: his having no reserves, his being so easily drained. EFT has appeared to help him sleep better (even though we haven’t tapped for that) which has helped him make gradual improvements over the week (he’s only been doing it for a week) so last night we had only a minor pain to tap for. So last night, at last, we tapped on his "feeling drained" and on his “fuzziness”. The key seems to be, as the EFT masters stress, find ingthe right words. We will do that more often, I suspect, as we get better at this.

We are on the way out of the ME nightmare. My husband's health is improving. It’s very noticeable. He woke this morning with more energy than he’s had in months, and so far, he has been able to sustain it. For quite a few months now, my husband – if he has slept at all - has woken exhausted. The last good spell was so long ago I can’t really remember when it was. He said the other day that he can’t actually remember what it feels like to feel healthy.

Today, he woke refreshed and feeling pretty good. It must be two years since he woke up not feeling exhausted. Five hours later he is still good - he can do maybe an hour or two of activity more today than he could do yesterday; he’s been up for five hours, and he seems in very fine fettle. A week ago, he was exhausted and in constant pain.

EFT has given us a way to eliminate pain and every symptom of ME that we have so far tapped on. But what’s more, it is – I am certain about this – relieving the underlying condition.

So we have peace and happiness here. We have tenderness, affection, and an enthusiastically renewed sex life. Above all, as we repeatedly experience the effectiveness on EFT on specific problems, we have hope.

The trick now is to my husband’s ME into its elements – its myriad specific contributors - and zap each one.

Losing Sleep For The Right Reasons

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Something Symbolic...

CNV00021, originally uploaded by milopics.

...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.