Various Unmentionables

I was driving north in a car with a man that clearly I knew, though I couldn’t place him. It was some kind of escape, a getaway. We needed a place to stay for the night and so we stopped with some friends of his, just beyond the border. There was a teenage boy doing his homework at the kitchen table, and upstairs, a very young girl child, asleep. We were given a bed for the night, and as darkness fell, I suddenly realised that I knew how this story ended. It ended with a stranger slipping into the house and knifing all the inhabitants, except for me. How did I avoid the massacre? I wasn’t sure; I thought maybe if I rolled out of bed and hid beneath it, I could pass unnoticed, but then I would have to witness what happened next.

A sane voice spoke to me, saying. I think this is a dream? And if this is a dream, maybe you want to wake up now? Because I really don’t like the road we’re on.

I  came to; darkness in the room, but definitely in my own bed. The clock said 3.15 am. I lay back and started playing Julie Andrews on the soundtrack inside my head, singing ‘My Favourite Things’ as a soothing technique. Mr Litlove was stirring. ‘It was just a nightmare,’ I told him. ‘Do you want to tell me what it was about?’ he asked. I thought about lying in the silent darkness with one anxious brain cell functioning, describing knife-wielding maniacs. ‘It was so bad, I don’t even want to,’ I replied. ‘Uh,’ said Mr Litlove.

I should point out here that Mr Litlove has mastered the art of talking to me in his sleep. In the morning, he has no recollections of what he has said. At that point I realised what else was odd: I didn’t have my mouthguard in. This much-detested contraption came about because I bruised a nerve in my gum one night, an experience I have no desire to repeat so I put up with the mouthguard despite the fact that it is too big for my mouth and hateful. I felt about on my bedside table, but it wasn’t there. So I really wondered what I’d done with it. Had I maybe thrown it across the room? I judged my subconscious was wholly capable of such an act.

‘Now what’s the matter?’ Mr Litlove asked. ‘I’ve taken out my mouthguard and I can’t find it,’ I told him. ‘Well I think you’d know if you’d swallowed it,’ he said, a statement that amused him greatly when I repeated it to him in the morning. I put my hand straight down on the duvet and there it was. This was good news; if this was the kind of night my brain was having, I felt that teeth-grinding might well be a part of it.

I am 46 going on 47 and the perimenopause is a reality. There has been a notable increase in nightmares these past few months, and if my chronic fatigue is worse, I think my hormones have a lot to do with it. Fatigue, anxiety, poor sleep, muscle aches and brain fog are all perimenopausal symptoms, and they are chronic fatigue symptoms too. So I feel like I’m getting a double dose. But what I also notice is that this isn’t something that women are allowed to talk about much. It’s not a cultural story, even though every woman alive will go through this rite of passage. And it’s quite a rocky journey for some of us; even at our luckiest we’ll have four years of being hot, clumsy, forgetful and volatile.

Can anyone name me a novel in which one of the main female characters is going through the perimenopause or menopause and this is a significant part of the story? (The spellchecker on this site doesn’t even register the word ‘perimenopause’.) I’ve been thinking but I can’t come up with any. Even women don’t write about it much, maybe because of some dim historical memory of being considered ‘irrational’ one week in four and therefore denied the vote. It’s just another taboo, too much icky information, and very little in the way of glamour or heroism. They don’t print t-shirts saying ‘I survived the menopause’ (and if they did, they’d be sold for male partners to wear). And yet it’s such a powerful, vivid experience.

I tend to think that menopause is the emotional last-chance saloon. Any issue that you haven’t dealt with up until now is going to rise up front and centre. My reasoning is that hormones magnify; their task is to take the small thing that bothers you and whack the volume up until your internal ears are bleeding. Denial may no longer be an option.

I saw my reiki practitioner last week, and she was describing the experience of working with a hormonal woman – ‘like she had a thousand volts flooding through her system’ – who was then given HRT: ‘and she was perfectly calm and back to normal; I wouldn’t have believed it if I hadn’t seen it.’ So biology is to blame, as it is with chronic fatigue, essentially, but all we have is our psychology to deal with it, in the absence of drugs that is. I’d been talking to my practitioner about my ongoing issues with my eyes, the worsened chronic fatigue and the perimenopause kicking in, and her advice was to focus on three things: 1) empty my brain and try to avoid overstimulation, 2) practice grounding and 3) try and be grateful where possible, alongside any frustrations. So I have been doing those things, and the result has been good; it helps. But my dreams have been much more vivid.

And it occurred to me that my nightmare could be analysed very usefully. I think my deepest fear is that I will escape what is intolerable, only to end up in an even worse catastrophe. This can grind me to a halt, unable to move forward. On a more everyday level, I think my problem is I treat even small difficulties with the things I feel disempowered over but emotionally invested in (my son, my health) as if they had the potential to become a multiple homicide. I do struggle to maintain a sense of proportion in situations that worry me. Mr Litlove thinks that things will just come right, if he watches television until the crisis passes. Whereas I think things will only come right if I throw masses of my energy at them. We both seem to have lived the truth of these beliefs, and we both recognise that, at present, we need to become a little more like the other. Maybe I can use those pesky hormones to motivate me.

Recovery

A week on from our various disasters and Mr Litlove is pretty much healed. Now the only actions that bother his shoulder occur in front of the computer, when too much mouse-work can make his arm sore. It was a revelation, watching his recovery process, however. He simply stopped, until the aches and pains from his trapped nerve had gone away, and then he gradually started moving again, easy household tasks to begin with – January’s been a washout work-wise but we’ve done a lot of de-cluttering – and then starting to exercise and return to his workshop. I am forced to realise I have never been that patient and accepting of my lot in my life. As for me, the optician was delighted with how much my eye had improved, and I don’t need to go back unless it flares up again. But ever since, I’ve had gritty, uncomfortable eyes, made worse by reading and looking at the computer screen. I’m typing quite fast here, hoping I can get through a post before the discomfort kicks in. I should be more like Mr Litlove, I suppose, content to stop until the problem has gone away, but I am not like him, alas.

the outrunBut the topic of recovery has been in my mind since reading Amy Liptrot’s memoir of alcohol addiction and tentative recovery, The Outrun. This is an exquisitely written first book that marries degradation and disgrace in London with a growing love of nature and its healing powers in Orkney. Liptrot comes from Orkney originally, where her mismatched parents went in search of a good life. Her father is a manic-depressive, her mother, since their divorce, a born-again Christian. Liptrot wanted nothing more than to escape the islands when she grew up, and moved south to London to pursue a university degree and a career in journalism. But the demon drink got a hold of her too. A self-confessed sensation-seeker, she fell so easily into the ready excesses of life in an isolating city, and her unflinching memoir gives a clear account of the humiliations consequent to too much booze. She loses the man she loves – which gives her even more reason to drink – gets chucked out of many a house share, is nearly raped by a stranger one drunken night, can’t hold down a job. London can do that to you, I think; the combination of opportunity and loneliness is a difficult one to negotiate.

If London can be a place of downfall, then the obvious thing to do is find a place of healing. After a course in rehab, Amy heads home, not for any better reason that she has nothing much else to do, and staying sober is hard, treacherous work. The cravings of the alcoholic never really go away, no matter how much damage is done to the self, and so the fight for sobriety is one that has to be fought daily. But the Orkney islands turn out to offer more solace than she at first imagines. She finds a job with the RSPB tracking the remaining corncrakes on Orkney – a tiny brown bird with a distinctive call that has almost become extinct due to modern farming practices. And this proves such an improving thing to do that she takes on a tiny cottage in the small island of Papa Westray for the winter. One thing about the Orkney islands: they are very windy. On one of her walks, Amy describes how: ‘I ascend the hill in a crouched position, probably watched by amused islanders in the houses below.  I lie forward into the wind, like a mattress of air: it takes my breath and exhausts me –  a full-body experience. It’s loud enough to hide in.’ She describes another windy day – one noted in Orkney history no less, when ‘tethered cows had been flying in the air like kites.’ It seems clear that this sort of wildness is congruent with Liptrot’s inner wildness, one that could not be appeased by alcohol, although it looked like it would suit the task, but can be calmed in a weather system that’s powerfully bigger than she is.

I wonder how often it is that we do not want what we think we want. I wonder how often we live in circumstances that do us damage in the long-run because we can’t think beyond our immediate solutions, and lack the courage or the motivation to try something else. I remember reading somewhere that humans tend to shy away from change because it’s so hard to do, and unless we’re really up against it, we’ll bumble on as we are.

The book has two rhythms. The first half is a rapid, forceful descent into the darkness of alcoholism, and it’s immensely gripping. The second part is a much more languid and dilatory affair, with chapters exploring different aspects of life on Orkney and Amy’s slow rehabilitation. It makes for a slightly uneven book, but I actually appreciated the honesty of this. Recovery does not happen in linear fashion. It goes back and forth, picks up new hitches and secondary issues, returns us time and again to things we thought we were done with. ‘I still have nervousness around other people,’ Liptrot writes. ‘When you’ve spent so long messing up, covering up and apologising, it’s hard to shake the feeling that you’ve done something wrong and default to the secretive and even sneaky behaviour that addiction involves. I often have a flickering sense that I must have said or done something terribly misjudged.’ Although Amy Liptrot is, in theory, not my kind of person at all – an extrovert, a sensation-seeker, a louder-than-life person, I found myself relating effortlessly to her situation, her determination to recover and her courageous honesty. Only the truth will save us, they say, and that’s about right. This is a very truthful book, searingly so, and all the better for it. I wanted to tell her at the end: stay sober, Amy, so you can keep writing.

And in the hope of furthering my own recovery, I’ve signed up for an online course with the Optimum Health Clinic, the specialist chronic fatigue centre. ‘Conscious Transformation’ it’s called, and is about finding the right mindset to get through the illness and out the other side. I know what a long, slow process recovery can be, and I do hope that this will make a difference. It starts in February and I don’t doubt I’ll tell you about it as I go through the tasks.

 

A P.S. – I love your comments and appreciate them so much, but staying away from computer screens has put me behind in replying. I will catch up as soon as possible.

Best Laid Plans

If you do not believe in the workings of a thing called fate (which can be tempted), I suggest you figure out a watertight plan and then see what happens to it. Yes, last Sunday’s grand designs rather fell apart this week as both Mr Litlove and I suffered physical setbacks. In all fairness, we had already suffered them when I was typing my last post but we didn’t realise how much trouble they would cause.

The previous week, Mr Litlove had pinched a nerve lifting weights at the gym but he hadn’t thought too much about it and continued as normal. That Sunday morning he had gone out on the river for rowing races, and after a long, cold sit in the damp at the bottom of the reach, he had really hurt himself during the race. The previous week, I had written half of an article on Nobel prize winner, Patrick Modiano, for the lovely Numero Cinq magazine, and then, although I was a little tired on the Saturday, I had gone out to tea with some friends. On Sunday morning I woke with a cold sore and a strangely bloodshot eye. Funnily enough, the same thing had happened to the same eye just after Christmas, but it had calmed down okay on that occasion. I wasn’t really worried, but I made an appointment with my optician just to be reassured, I’d hoped.

It was Mr Litlove who was really suffering. He couldn’t find any position that was comfortable for long and was just hanging on in there until his Tuesday lunchtime appointment with the physio. Tuesday morning we went our separate ways. I knew I was in trouble when the optician started being very kind to me and taking photos of my eyeball. I had inflammatory cells in my eye – they show as just a small white line within the circumference of my iris – and he didn’t understand why. He was going to refer me but after checking with a colleague decided to monitor me instead. The problem wasn’t with my eyesight, but with my health. ‘You must be run down,’ he said. I protested that I couldn’t possibly be as I hadn’t done anything. ‘You’ve got that,’ he said, pointing at my cold sore. ‘And you wouldn’t have it if you weren’t run down.’ I thought I might as well tackle the worst. ‘It’s not that you suspect a brain tumour but don’t want to tell me?’ I asked him. He laughed and said no. ‘You’re just… interesting… at the moment,’ he said. ‘Think of it like that.’

Interesting was what I’d hoped to be about Patrick Modiano; this was very much the wrong kind of interesting. The fact it was so small but obviously a problem was bothering me too. I felt like I’d maybe got a layer of semtex in my brain and this was the first tiny harbinger. I got home and started looking things up on the internet. It was an autoimmune issue, the sensible and accredited website told me. It could indicate – in rare cases – awful things, or something common like arthritis, and it was also a symptom of the herpes virus. I stopped reading there. I thought that would suffice as an explanation, but the situation had triggered my anxiety and I was having a hard time getting it back under control. Then Mr Litlove came in, having been put on the rack by the physio, and he was in awful pain. Somehow we staggered through the day; me nursing an urgent anxiety, him nursing his agonised shoulder. That night neither of us could sleep. I found myself downstairs at 3.30 am nibbling at a (somewhat stale) oatcake to combat the nausea of fatigue, anxiety and low blood sugar while Mr Litlove thrashed about upstairs trying to find a way to lie down that wasn’t painful. At one point, he told me the next morning, he had knelt on the mattress and put his head face down on the pillow, like he was praying to Mecca, and he’d actually lost some time that way; he must have dropped off, that most awkward position being the most comfortable he’d found.

Well, things have improved since then. The optician rang me to say he had done some research and was sure my eye problem was a symptom of chronic fatigue. This was good news in that I could remain with only one big health issue; but it was frustrating how little I’d done to bring it on, after all those autumn months of rest. Mr Litlove managed to get his special painkillers from the doctors and they helped, as did a period of prolonged inactivity. He is moving much easier now, and my eye looks a lot better, just a ghost of a mark that only someone searching obsessively could see.

A couple of days ago we went to do our supermarket trip together, thinking to prop each other up. It was as well I was there as Mr Litlove was quite quickly in pain again (standing, he was only comfortable with his hands on his head, as if he were being taken into police custody); we shopped quickly and came home. It is strange for me to watch Mr Litlove when he is ill. It reminds me that my own cluster of anxieties are not from cowardice or feebleness as I so often fear, but from the experience of chronic illness. ‘Think about how you felt today,’ I urged him, ‘and you can see how I might feel, when every time I go out, I run the risk of feeling bad. If this dragged on for months and years, do you understand how you might come to feel limited? How you might worry about doing anything?’ Chronic fatigue can be a lonely business sometimes, and I so wanted him just to hold this moment and understand, but he only smiled at me as sympathetically as he could, and I knew he didn’t see it at all.

AdamSmithThe real casualty of the past week has been our creative projects. They sit abandoned again. But what kept coming back to my mind was a brilliant book I finished shortly after Christmas, Katrine Marcal’s Who Cooked Adam Smith’s Dinner? In it she argues persuasively against the existence of ‘economic man’, the model citizen for all model-based economics. For economic man, everything is a choice; he is rational, selfish, motivated by greed, has little in the way of ethics and wants only to be as rich as possible. He is a ‘bodiless, sexless, profit-seeking individual without family or context.’ So no one resembles economic man, apart from bankers and a few under-5’s, Marcal argues. Back in the 1930s, Maynard Keynes thought that economic man modelled the way we would have to behave for a while, to get past the great depressions of that era, but that once we’d eradicated poverty, we could give up such unnatural behaviour and return to loving art, working and earning less, and spending time with those we loved. What happened instead was Margaret Thatcher, Ronald Regan and neo-liberalism. With the result that, although people do not naturally resemble economic man, this ideology reorganised society in order to force us all to behave like him. The market became all-important, the way we understood and arranged all our interactions – even those like healthcare and education, that were in radical opposition to the way the market functions.

And then human beings became understood as ‘human capital’. Adam Smith first uses the term: ‘People’s education, skills, talents and competencies can, according to Smith, be seen as a form of capital.’ We can be equated to machines, run like businesses, Marcal explains: ‘every person has been transformed into an entrepreneur in the business of selling themselves… Your life is your small business and the capital is, in this case, you.’ So we bear the full responsibility for the outcome of our lives, good or bad, and every decision we make – to do our coursework, to whiten our teeth, to buy a pair of shoes, becomes an investment that may or may not come off. If we think of ourselves as just a piece of human capital, rather than an individual, then we all become very equal, ridiculously equal. ‘The man who waits for his fake documents outside the airport at Dakar,’ Marcal writes is just ‘like the CEO who stretches his legs out in his aeroplane seat to catch a few hours’ sleep before his next meeting on the other side of eight hours in business class.’ The raw material is the same, neo-liberalism tells us: the CEO has just done better with his.

This is complete nonsense, of course, harmful, upsetting nonsense that confuses the kind of equality we need in society with the exact-sameness of two pieces of factory-produced machinery. And yet I was so struck when reading this that I do think this way when it comes to myself. I was a child of the Thatcher era, and I do think I should function just like any other person, that if I invest a certain amount of time in myself, I should be able to produce what I decide needs to be produced. Neo-liberalism changed what it means to be human, Marcal argues, and I do look at myself as an abstract proposition, not as a human who should put the body first because being human is about being in a body before it’s about anything else. Yet what I experience, over and over, is that this new idea of being human breaks down hopelessly when it comes to misfortune and to creativity. (Also when it comes to motherhood, but that’s a post for another day.) In other words, in matters that concern healthcare and education, the two most important institutions in human life to which the most wrong has been done by market-driven economics.

Except perhaps the idea of being human, which should never have been moved away from the immediacy of our lived reality. If Mr Litlove and I want to enjoy our very different life, if we want to create in a way that interests us (not just to pander to some commercial ideal that we care for not at all) because we want to live a simple life that is about a much deeper, richer sense of purpose than earning as much money as possible, we need to think about ourselves very differently too.

 

In Which I Learn More About Chronic Fatigue Syndrome

This year has not been good for chronic fatigue; I’ve been low in energy for most of it, apart from a brief spell over the summer during which I crammed in as much writing as I could, probably not the wisest idea. About three weeks ago, I was so annoyed by this extended period of low quality health that I started looking about on the internet for information. I hadn’t done this in a long while and it occurred to me that research might have moved on.

I was, in fact, surprised, shocked and motivated by what I found out. The information I’m about to pass on comes from two main places: the website of Dr Sue Myhill who seems to have devoted her research to CFS, and the Optimum Health Clinic, who have been dealing solely with CFS/ME/Fibromyalgia sufferers since 2004.

Both places argue that chronic fatigue syndrome is caused by mitochondrial failure. If we compare the body to a car engine, ‘mitochondria are the engines of our cells – they supply the energy necessary for all cellular processes to take place’. Whilst we might have all kinds of different cells, they all gain energy by the same means: the supply of ATP (adenosine triphosphate). As we use energy, ATP converts to ADP and back again, but when we stress the body, demanding more energy than we are creating, this convertion happens faster than we can recycle ADP back into ATP. So ADP builds up and converts to AMP – a ‘metabolic disaster’, because it is lost in urine. So, our ATP levels drop, meaning energy is supplied more and more slowly, and now the body is struggling to create new ATP, a very slow and complex process.

It’s one of those great corporeal wobbles; once the body is out of balance, it’s difficult to get back on track again, and since all our cells are running on low speed, we clock up other forms of damage to the body: our immune systems are poor, hormone production is compromised, brain function suffers. Essentially, the heart (which is nothing more than a big muscle) is impaired, which is why CFSers really badly want to lie down. Standing up, we may be in borderline heart and organ failure. But the problem doesn’t show up on an ECG. I remember reading on a website several years ago that ‘fatigue’ is so much the wrong word for what we are feeling, and that ‘prostration’ would be better. CFSers feel so ill they are prostrated, and this is why; the imperative to protect our heart function is overwhelming.

It’s serious stuff this, and more problematic because the way medical authorities have treated CFS has not been helpful. Graded exercise and anti-depressants have no impact whatsoever on the root cause. What does make a difference? Well, you’ve got to cure your mitochondrial function, which means most importantly, not to make more energetic demands on the body than it can cope with. You’ve got to live at the level of ATP you are managing to produce. Then you need to sleep really well, and eat really well and supplement any deficiencies in magnesium, B3, B12, Co-enzyme Q10, and acetyl L-carnitine. Detox helps, oh and by now you’ll probably have a host of other issues in your liver, immune system, hormone glands and digestion that also need fixing. All of which will challenge your ability to eat and sleep well, never mind anything else. It’s hard to know where to begin.

I have to say this chimes perfectly with my experience.

And when we do finally get back to better health again, the chances are that we will trip our systems once more. The clinic (which supplied me with a very informative brochure) argues that CFS comes about as a combination of physical weakness with personality type. There are four personality types pre-disposed to CFS because of their tendency to maladaptive stress response – a bodily ‘high alert’ in the face of chronic stress. They are ‘helper’ types, who put the needs of others above their own, ‘achiever’ types, who push themselves and are perfectionists, anxiety types, which is self-explanatory, and finally those who have experienced trauma. Oh good news! I tick ALL FOUR boxes. And the experience of CFS itself tends to exacerbate the high alert response that causes all the trouble. The whole thing is like a big vicious circle.

Let’s talk briefly about adrenal glands. Adrenaline has obvious functions in stress, sport and all sorts of performing, but it’s essential every day. Adrenaline gets you through when a busy day is followed by an evening event. Adrenaline also acts as a buffer to anything that’s in the least stressful – which is why CFSers jump a mile when the telephone rings. Without enough adrenaline in our systems we end up hypersensitised, everything is much more stressful to do, and has a greater impact. And if you have properly fried your adrenals, it takes on average TWO years to heal them.

So, you might be wondering how I felt, as someone who’s had CFS on and off, mostly on, for the past 18 years. I felt: YIKES. I felt it was time to get myself in order. I suppose I have always been persuaded by the idea that CFS was no big deal, that it was a silliness on my part, my own fault for being a stressy sort of person, and that I really needed to keep working whenever I could. But to think I am doing long-term damage to my cells is not comfortable. Mitochondrial production goes down with age – I have effectively aged my body too fast. It’s a scary thought. And what about my poor toasted adrenal glands? No wonder I’m anxious about ordinary things; I’m wringing those poor old glands and barely a drop of adrenaline comes out.

I told all of this to my reiki practitioner, who has a wonderfully pithy way of summing things up. ‘So do you understand now that you are not weak or oversensitive, but there is a biochemical basis to your illness that has to be healed?’ Well, I said, if you put it like that. ‘And are you able to forgive yourself for not meeting your impossibly high, fear-fuelled standards?’ she continued. Hmm, trickier. I only like myself as a helper and an achiever. Now they tell me I have to be selfish, underachieving and calm about it?

When I was discussing this with Mr Litlove, the cat barged through the door, flopped down between us with his paws up for some fussing, and then fixed us with the deathstare that says: you’ve got hands, don’t you? Why aren’t you putting food in my bowl? ‘There’s your role model,’ said Mr Litlove.

So I have to live like a cat. Well, a cat that can read and cook, at any rate. We’ll see how that goes.