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.

New Year, New Us

This year I am determined I am actually going to make some changes. Every year it’s the same old resolutions and every year the default setting quietly settles back into place. And it’s understandable when the past three years have been fraught with violent upheaval. I find myself sort of annoyed at the universe for having given us such a persistent diet of unexpected changes, though in all honesty I suppose they were heading our way for a long time in each case. Anyway, it would be nice to focus just on the changes I actually choose, rather than those that have been forced upon us.

The first thing I really want to change is my tendency to book myself up with work and deadlines for months ahead. It’s an old bad habit and I’m tired of it. That means I’ll be cutting right back on reviews. I’ll do a few for Shiny (BookBuzz remains my prime responsibility) and I have a couple outstanding for this month. After that, enough for the time being. So this blog is also getting a shake-up as I’ll be writing here once a weekend and it will be more of a diary format. Given that my activities, such as they are, mostly include reading, there will still be some talk about books.

My related resolution is that I am going to try not to buy any books this year. No, Mr Litlove doesn’t believe I can do it either. And I might not be able to. But shortly before Christmas I began to tot up how many unread books I own and… well, let’s say it’s enough to keep me busy for a while. For years I’ve been a big supporter of the publishing industry, but I think it’s fair enough to let others take on that role while we have no income.

Last year was somewhat hogged by CFS, but the long-term resting strategy that I’ve been following since the autumn is gradually making a difference, I think. If I can keep going with the pacing, and stay patient, I might be able to improve my health significantly. And if I could work again, I have to wonder what I would do. Supposedly, since I left college in 2012 I’ve been devoting myself to writing, but then the past three years happened, and I haven’t had a decent stab at it. So my plan is to give it one last try, one more year, and if at the end of that I haven’t made any progress, then it’s time to think again. I’ve been considering finding part-time work as a counsellor of some kind, probably working with students one way or another. I have lots of experience but no qualifications, and the qualifications are really expensive to get and will mean going over ground I’m very familiar with. Well, we’ll see; it’s a way off yet. But when I think about what motivates me, I realise I have no desire to be an important person, but I really do want to do something that I think is important. I would like to feel useful again.

One way that I can be useful at the moment is supporting Mr Litlove. This is such an enormous change for him, leaving 25 years of life in industry behind to make furniture. This past week he has had a number of moments of – well, I think the technical term here is ‘wobbliness’. I thought back to when I was made redundant from college and what I remember most clearly is Mr Litlove telling me what a fantastic opportunity it was, and me feeling the most disinclination to write that I had ever felt in my entire life. In many ways, this is the sort of moment that I want most to capture. Because we think that when change comes along, or indeed when we try to be creative, it should all be plain sailing. We’ll make progress like people do in the films, when they show that five-minute training montage. But human nature is contrary, and it is complex. I think we seriously misunderstand creativity, what it feels like, what it demands of us, and that’s something I’d like to think about in much more depth. I daresay Mr Litlove will feel rueful about it at times, but he seems to have become my private study support student.

So, to sum up, 2016 is all about a sharper focus for me. I need a sturdy triage system and essentially this means that I’m only doing things that are a) important, b) really interesting to me and c) fun. And I’m going to try to give up feeling guilty about everything I don’t do (you would not believe my capacity to feel guilty about anything) – as if it helps! And I’ll try to keep myself honest and up to the mark in a weekly blog. This year I mean business – at least until the next thing happens to throw us off course!

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.

 

The Unexpected Pleasure of a Social Fail

Last week I was invited to a publisher’s event in London and despite my terrible track record at attending such things, I decided I would go. There are plenty of reasons why I hardly ever attend, beyond my chronic fatigue. They all seem to start at 6.30 p.m., for instance, which is a dreadful time if you are a creature of habit and like to eat regularly. To arrive in good time, I need to leave my house about half past four, which is too early for tea beforehand, and then if one stays to the bitter end at 8.30, this means eating dinner at home around 10.30 p.m. which is even past my bedtime. Obviously other people find their way around this, but I admit it perplexes me.

Anyhoo, I boarded the train with my emergency supplies of a Marks & Spencer wrap, made it to London and walked to the venue which was just off Charing Cross Road. I visited the new Foyles as I had a a little time to spare, and found it very spiffy to look at, but a tad confusing in layout. Mind you, it’s definitely a step up from arranging books by publishers. Then I walked to the venue, eating half the wrap as I went (and trying not to drop lettuce into the folds of my scarf) and still arrived a bit early. I cased the joint, as the old gumshoes used to say, from the other side of the street, and saw people going in. At the door there was a young woman with a clipboard taking names, and I feared things were not going to go well when she could not find my name although I had written to rsvp. I had my invitation printed out in my bag, but it seemed she didn’t want to challenge me, just hastily added me to the bottom of her list and waved me on to coat check. The people in front were having their coats taken, and when that young woman never returned, I thought it wouldn’t hurt to keep my coat with me, which was a good decision in the end.

I sat in one of the alcoves in the bar, watching London publishing people arrive and flicking through the publicity brochure. This is when I realised I had made a mistake in not checking beforehand whether any other bloggers were going to attend. I’d been so sure somebody would be there who I knew, but as jolly partygoers poured in, I realised there was no face I recognised. They all knew each other though. They were doing that social clumping thing, where they separate into little, dense groups of furiously chatting people. When I finally saw a face that was familiar it took me a while to place it. Then I fervently hoped I hadn’t been staring. I think it was the owner of a book store who I met several years ago now, offering to create content for a website for the shop. This person was dead set against any idea of a website and we parted company less than pleased with one another. Yikes.

Well, half an hour had passed and I was very bored, and nothing seemed to be happening and I really had no desire to talk to the only person who might know me. And so I put my coat back on, slipped through the crowds in the room, and left without anyone noticing. Then I walked back to the station, got on the train and ate the other half of my wrap for dessert. It was one of those sleepy trains with the final few commuters of the evening all happy to nap in their seats or read. Across the aisle from where I was sitting an Indian gentleman slept through the first half of the journey and then when he woke up, he took a book from his bag. Inevitably I craned my neck to read the title and was intrigued when I saw it was a memoir by Michael Greenberg called Hurry Down Sunshine about a severe breakdown his daughter suffered. I’ve had it on my shelves for a couple of years without having read it yet (same old story!). Well, the gentleman saw me looking and smiled, and I smiled back at him and it was clear we both were on the brink of saying something but were a little too reserved. Ten minutes later, as the announcer said we were arriving home, and we were all shifting and leaning forward in our seats, we just started chatting (he was enjoying the memoir, though it was very sad, so maybe enjoy was not quite the right verb). And I had my bookish conversation after all.

When I told this story to Mr Litlove with the stated intention of blogging about it, he wasn’t sure I should mention it. I think this is because Mr Litlove is an alpha social animal, who would never be intimidated by a room of strangers and would find an easy, natural way to enter a conversation other people were holding. I do admire him for that. But that’s not me. I dislike parties, and travelling, and I fear being stuck in social situations I’m not enjoying. I was quite pleased that I took the decision to leave and to conserve my energy which is still in short supply and precious to me.

And it’s very intriguing why I should have found it easy to talk to the stranger on the train and impossible to talk to the strangers at the party. All I can say is that the train felt like a level playing field, socially. At the party, the people there knew each other already and I was at a disadvantage. And on the train, we had made a connection over the book; it was a tiny thing, barely perceptible, but it made all the difference. Something real had occurred, and the real is always simple to capitalise upon. When the connection is artificial, you have to work so much harder.

In case you’re interested, I had a bowl of cereal when I got home, to round off my nutritionally impoverished evening and I still managed to come down with a chronic fatigue relapse a few days later, which goes to show that evenings in London are probably still beyond me physically as well as socially.* But the experiment was interesting in all kinds of unexpected ways.

 

* And yes, Dark Puss, you are top of my list for when I am able to spend a bit more time in London!