The Rest Of What We Did On Holiday

So, I had a week to amuse myself while Mr Litlove made his chair. This year we both became members of the National Trust and I was keen to get some use out of my card, especially in order to visit more gardens. I am completely rubbish when it comes to identifying trees and plants and birds and I suppose I thought that visiting gardens would bring me the knowledge by a mysterious process of osmosis.

Getting in my car for my first visit, I realised it was a long time since I’d had to drive myself somewhere new, and I don’t have a satnav. Instead, I’d studied the maps and tried to commit the route to memory, something I was a little concerned about, given that these days I barely make it halfway up the stairs before realising I’ve forgotten what I’m going up them for. But I found my way just fine to Petworth House, an imposing stately home set in vast grounds designed by Capability Brown where the novelist John Wyndham lived (and his son, Max, still does).

What I didn’t realise was that I would undertake solo sightseeing as if I were a Marine commando on a mission against the clock. Memorise maps. Check! Drive to location. Check! Get map of house and grounds from National Trust lady. Check! Three times whilst said National Trust lady was trying to explain which path I should take to the house and what time the tea rooms closed, I rather thought she’d finished (prematurely) and made to take off on my mission. Eventually she asked me somewhat drily, ‘Are you in a hurry?’ and I said, no, no, sorry, just umm… And then I shot off into the grounds as if Big Chief I-Spy himself were in hot pursuit, waving his little tomahawk with menace.

After the glories of Parham, I found Petworth rather disappointing. It was a series of large, empty rooms, their walls thickly coated with paintings that were often hung too high or in strange shafts of light that made them hard to see properly. The paintwork in every room was in desperate need of refreshment and the whole place had a dingy aspect. There was plenty that was spectacular to see – you want a Turner? here’s five in a row. You like portraits of society beauties? Here’s a gallery entirely dedicated to them. You like wood carving? Here’s a room the size of a tennis court, with walls sprouting strange excrescences like a rampant if morbid form of fungi. The part of the house I admired most was the chapel, built in but sunk down a flight of steps, meaning you paused on the threshold at eye level with the scary pictures of saints and angels. It had a shivery power, inhabited by a vengeful god with a connoisseur’s eye for art.

At the end of the corridor that led past the great kitchen (where I doubtless slaved in a past life) and the shop and tea room, there was an entrance into the small town of Petworth itself, quaint and fairy tale-ish, its narrow cobbled streets built on a steep slope. And here I struck gold – the only book shop I found during the whole week, but the most delightful indie packed with excellent stock. I could have bought up the entire non-fiction section, but even I think I have a lot of books to read at the moment. So I made a concerted effort at restraint which I naturally regretted for the rest of the holiday. I bought Diana Souhami’s Murder at Wrotham Hill, a narrative non-fiction account of a crime that took place in the 40s, and James Wood’s short collection of literary essays, The Nearest Thing To Life. I spent longer in the shop than I did in the house and grounds.

The next day I had another stab at sightseeing, this time visiting Nymans and remembering to take the camera. It was a properly hot day and it took a while to get there, half an hour or so, a journey that began to seem to me like an awful lot of bother just to go look at a garden. I do realise I am not naturally gifted with the instincts of a tourist. Still it was a very pretty garden, and I saw it when the rhodedendrons (one of the few shrubs I can identify) were in flower.


I have a photo of much bigger specimens but it came out blurry! This was obviously the rhodedendron nursery.

Nymans itself was a much smaller place than either Parham or Petworth, and not many rooms were open. As we entered the hallway, the sound of piano playing floated on the dusty air, and there in the main drawing room was a little old hunchbacked lady, surely in her 90s, playing her heart out. It was both atmospheric and disconcerting. Inside the house it was like visiting your posh Granny, rather lovely portraits and small sculptures in niches, great quantities of chintz, tartan curtains, piles of books and magazines, a little too much furniture, cold slate floors but cosy throws and cushions.

IMG_2403Part of the house was a ruin, destroyed by a fire in 1947.

IMG_2406Outside the gardens were amazing, even I could understand that much. There were all sorts of features, a sunken garden, a rock garden, a long pergola, a rose garden (not yet in bloom), all sorts of outdoor rooms created cleverly.

IMG_2398I speed-walked my way around lots and lots of plants. Goodness knows what they were.


By judicious hanging around in the shop I managed to stretch my visit out to an hour and a half. I mean, I’d looked, it was lovely, what else was there to do? Mr Litlove asked me which parts of the houses I was most interested in and would most like to take home, and I said, the stories. The history of the houses does really interest me, but Nymans had to remain a mystery, as the guidebook the NT produces was out of print and they were trying to persuade the publisher to bring it back. I bought Patrick Barkham’s book Coastlines in lieu of it, even though there was no coastline in sight.

So Thursday it rained all day, and Friday was our last, and the one I had to vacate our cottage since it was a Friday-Friday let.  On our last holiday, I’d struggled under similar circumstances, waiting all day for our journey home and then too anxious to undertake it. So this year, we booked a hotel for Friday night, so I wouldn’t have to face the M25 on its worst time of the week. And yet, still I woke that morning full of anxiety. The owners of our cottage had kindly invited me to spend some of the day with them, which I did. And then late morning I drove out to Arundel for something to do (enormous castle on a hill, its petticoats full of tea rooms), and then I drove to Mr Litlove’s workshop for the afternoon. I was very tired and very anxious by now, though the workshop was fun in its way and I was glad to visit. Anyway, to cut a long story short I was pretty much gripped by anxiety until we were finally home early on Saturday (very early, I wasn’t sleeping anyhow so we thought we might as well do the drive).

What had gone wrong? I’d been fine all week. When I saw my reiki practitioner a few days later, she suggested it was a ‘safe place’ issue, and the light dawned. Most of you fortunate, normal people out there probably carry your safe place around inside you. Perhaps what distinguishes the phobic and the anxious is that our defences feel insufficient, and some other, physical, form of protection is required to reach basic safety levels. I was okay using the holiday home as a temporary base, but stuck in limbo on Friday my anxiety began to rise. And as anyone who suffers anxiety knows, it’s all too easy to reach the point of no return. Still, you live and learn, particularly when you have a preternaturally insightful reiki practitioner. And we did have a lovely week.

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!

Chronic Fatigue Gets A New Name

So, The New York Times reports that the Institute of Medicine has suggested a new name for chronic fatigue syndrome. The proposal is that it should be called ‘systemic exertion intolerance disease’, which is quite a mouthful. But maybe an almost-unsayable name is appropriate for an almost-intolerable illness. Basically, the name is designed to reflect a significant symptom of the condition: ‘a sustained depletion of energy after minimal activity, called postexertional malaise.’

I used to describe the experience of the illness as akin to having a leaky car battery. You could charge and charge that battery, but as soon as you started doing anything you could feel the energy draining away. Quicker than seemed possible you’d be reaching the point of exhaustion. Sleep makes no difference. So during term at the university, I’d be struggling by about the second week in, watching my symptoms come earlier every day in the third, and running dangerously on empty from the fifth onwards, knowing I was just going to feel sicker and sicker and trying to manage the panic about that.

The harder you try to push through the fatigue and the illness and keep going, the worse it will all be when you finally stop. In fact the worse it is day in day out. I always thought that if it was only tiredness I felt, that really wouldn’t be a problem. The difficult part is that you feel extremely ill. There’ll be symptoms – nausea, headaches, general aches and pains, sore throats, dizziness, all that sort of thing – but the hard part to deal with is a kind of essence of all illness. You lose control of your temperature, your heart rate, your blood pressure. All of these experiences are invisible. The habitual words do not convey the reality of the feelings. No one will understand.

When I finally came off work, the suggestion from medics was that I try ‘pacing’. I began with no more than one hour’s activity a day, and would stick to that for a week. If all went well, then the following week I could increase my activity by five minutes. And again if all went well, five minutes more the week after that, and so on and so forth. There would be relapses. I remember several years ago, Mr Litlove and I were on a beginners’ tango course. This was a big ask for me – three hour sessions every weekend. Towards the end it was becoming too much and I intended to miss a session. My mother-in-law, who had been visiting, couldn’t understand it – I didn’t want to miss out, did I? If I was tired the next day I could just sleep in. Of course healthy people think this way. For me, I knew that completing the session would mean three days or so in bed, followed by a long, slow, increase of activity afterwards. And it’s hard to enjoy things when you are aware how expensive they are going to be.

I still think of energy as money. Some activities are a lot more expensive than others – for me, socialising, travel and stress are the most costly (this differs from person to person). But everything costs a little – being excited about something is as energetically demanding as being anxious. Laughing takes energy. Engaging in an intellectual activity doesn’t come cheap. Television is more expensive than a book. I have an expensive personality – my normal demeanour is bright, cheerful, engaged. Even being myself was more than I could afford some days, and of course the sense of outrage and unacceptability is so overwhelming when you cannot even behave like your own self that you (I) tend to push through regardless, out of frustration and stubbornness, and build up a large debt that then takes forever to repay.

Doctors have long wanted to push for depression as a key part of chronic fatigue, but I think that’s putting the cart before the horses. It’s hard to stay positive sometimes when you have an illness that is like a punishment for living. And inevitably, the sort of mindset you need to get better – calculating all the time what amount of exertion you can afford, always playing it safe, shying away from anything demanding – affects your confidence over time. Doing something new, or something you haven’t done in a while, can be frightening when you have no idea how you will feel afterwards.

I write about chronic fatigue for two reasons. The first is to raise consciousness, because it is still such a misunderstood and stigmatised condition. I’ve had a lot of time to think about it, and I’m motivated to find ways to express the reality of living with it. The second reason is that for a long time, I felt terribly ashamed of myself. I thought it was my fault. I didn’t want to confess to all the things I couldn’t do without severe consequences. I hated not being able to live like a normal person. But you know what? Denial is a very expensive habit, and I came to realise it was far better for me to accept the condition, to understand it was part of me, like it or not. And it still is a part of me. The past eighteen months have been a very stressful time for me and my family, and for most of it I kept up a reasonable level of activity. This was encouraging – I thought I was seeing the back of chronic fatigue. But then when things finally calmed down towards the middle of November, I felt the familiar old exhaustion. In December I caught every bug going, every time I tried to raise my level of activity even a little. I resigned myself to more of the same in January. This month, I’ve felt more like myself, but I have to calculate my energy every day and make decisions accordingly (hence minimal blogging for which I apologise).

But even the experiences that take the most away, do give something valuable back despite themselves. If there’s one thing this condition has taught me, it is the resilience of the human spirit. Since 1997 I’ve been on a wild cycle of ups and downs, but no matter how low I have been brought, I have always risen back to the surface. There has always been a return of energy, a renewal of appetite, an improvement in my overall wellbeing. And each time that happens, I have felt acutely, exquisitely, how precious life is. I live a very quiet, peaceful life, but living quietly and peacefully with much time for contemplation turns out to be something I cherish and for which I am profoundly grateful. Not many people have the luxurious time and space that I do for observation and for thought. The blessings only come from accepting the truth of the situation, and that can be hard with a condition that is so poorly understood. In the absence of a cure, perhaps a new name (however awkward!) will help the healthy and the sick understand what’s at stake, and deal with it better.



Medical Misadventures

On Friday, Mr Litlove fell off his bike on his journey to work. He was rounding a corner when the bike slowly slipped from under him, and it wasn’t until he was on the ground that he saw the sheet ice. A couple of builders working nearby came over to check on him, but by then Mr Litlove was back on his feet and brushing himself down and being thankful he hadn’t broken any bones. He’d bruised his ribs and his hip, though, and when he limped in on Friday evening after work, he was clearly a man who had sustained injury and wanted some sympathy. Need I say more?

‘So you won’t be going rowing in the morning, then?’ I asked him.

Mr Litlove’s eyes slid away from mine. ‘I expect I’ll be fine,’ he said.

And so of course, the stubbornness of the male being unparalleled, he was up at 6 am and off to the river. And then we went out to lunch, so it’s possible that he overdid things a tad because by Sunday he was very stiff and sore indeed.

I was expecting a skype call with our son that morning. He has an essay paper to do this year and I offered to lend a hand, given that he’s not written one in several years. The topic is science communication, which turns out to be rather fascinating. It’s a jolly good idea for the public to have some notion of what science is up to, but as with all these vague mission statements, things become tricky when we actually get down to nuts and bolts. How much information do we need to have any sort of useful judgement about current developments in science and technology? Who needs to know? And who is going to tell us in the ‘right’ way? When scientists talk about public understanding, what they often mean is public appreciation – getting the power of mass influence behind their research in order to secure more funding. Whereas what often happens is panic or aversion thanks to sensationalist and inaccurate media stories.

Let me give you a little example of some of the issues involved. Back in the 1950s a medical researcher, Alice Stewart, started to collate the figures on infant deaths by leukemia in women who had been x-rayed during pregancy. The statistics spoke for themselves; up to a child a week was dying from the disease and the mortality rate was almost 40% higher in children whose mothers had been x-rayed. Stewart published her findings in the Lancet in ’56, in the British Medical Journal in ’58 and yet the Medical Research Council absolutely refused to accept her conclusions. Stewart was a lone female voice without the backing of a large organisation. Doctors were in love with the technology, which they believed could only be useful. They were unwilling to take any one else’s word on a problem they had not identified themselves – the more authority at stake, the more unwilling people are generally to admit mistakes. And finally, they believed that as doctors they were always healing people; they simply could not hear the opposite. Too many cherished assumptions needed to be overturned and so for the next 25 YEARS doctors continued with the x-rays, and thousands of children died.

Science needs to be in the public eye, because keen public observation keeps people more honest. And the general public is a useful moral barometer, reacting strongly when science moves into territories where ethical issues are complex. But then we have to think about the scares over the MMR vaccine, which were sparked by one set of results that have since been called into question. The real problem is in the calculation of risk, which we are not encouraged by the media to do with any pragmatism. And anyhow, when our health or that of loved ones is at stake, it’s hard to be cool-headed.

I have an interesting calculation of risk of my own underway at the moment. Last week an invitation from the NHS popped through my letterbox to attend a cervical smear test. Oh joy. It’s not the test itself that bothers me, it’s the inaccuracy of the results. One in twenty women screened will register a false positive and have to go through an unpleasant medical procedure in consequence. One in twenty is a lot. On any given day, assuming a 50/50 gender split, ten women will read this blog who have been scared and treated invasively for no reason at all. I’m tending to agree with Germaine Greer on this one.

I readily confess that I am not good with medical procedures – a touch phobic, for sure. And I am terrified by the prospect of falling ill again, having so recently regained (most of) my health from the worst of chronic fatigue. Am I sensible about this? No, of course not. I had a bad viral illness and it took me 13 years to get over it. How could I possibly be sensible after that? But I know for sure that the stress and anxiety over the test and a false positive result would result in another stretch of chronic fatigue for me. More months lost to illness, when I’ve lost too many already.

Don’t worry; I am the least reckless person you’ll ever meet and I daresay I’ll go and talk it through with my nice doctor. But I have a little fable involving Mr Litlove to tell you about. When I expressed my displeasure at the arrival of the summons, Mr Litlove sighed and clearly wanted to say something he thought better of.

‘You think I should go and have it, don’t you?’ I asked.

‘Well yes, I suppose you should just get it over with,’ he replied.

‘You men should try it once in a while. Some sort of unpleasant, embarrassing test with an uncertain outcome. Something that involves shaving your balls and having them weighed or some such. How many men would do that?’

‘Oh don’t make me laugh,’ said Mr Litlove, clutching his sore ribs. ‘Please don’t. It hurts.’

‘And that reminds me. If those ribs are no better on Monday morning, you should go to the hospital and get an x-ray.’

The look on his face was transparent. It said: NO WAY.

‘Casualty won’t be too bad on Monday morning, I expect.’

‘My sister’s coming to stay on Monday,’ Mr Litlove mumbled. ‘I’ll ask her.’

Back in the day his sister was a GP and now works in academia in public health, none of which to my knowledge has gifted her with x-ray vision. But this is typical. He’ll tell me soon enough what to do, but he’d rather walk around with cracked ribs than go to a doctor. What has understanding science got to do with our behavioural choices, I wonder?