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?

 

 

 

 

 

Of False Correlations

I’ve been trying to think what’s been happening around here lately to tell you all, and can only come up with events that involve unusual modal tenses.

There are things I ought to have done but haven’t. For instance, several months back I was invited to chair an author event at the local bookstore. I did that thing where you look far ahead at a blank calendar and think, oh I shall be so free and well-rested in those empty days! And agreed to do it. After all, I used to chair a great deal, back in the university era. Well, I quite liked the idea of it for a good six weeks or so, and when I had a chronic fatigue relapse I thought, I’ll doubtless be fine when the time comes. I even bought a new pair of boots (any excuse!). Then, when we got to a couple of weeks before the event, I began to feel the stirrings of horror. Did I really want to have to stand up before an audience and talk? I always did have stage fright, but there was a time when I was very stern with myself about repressing it. Plus I was practised then and knew I would do the performing stuff well. I reminded myself that this was a local event which would probably have no more than twenty or so people in the audience, half of whom would be related to the author, half of whom would have wanted to come in out of the cold. But still I trembled and the chronic fatigue was settled in for the duration; knowing your body can give out on you at any moment is a fun thought to take into a stressful situation.

Preparation is the key, I told myself, and so I went to the bookshop and asked whom I should talk to, in order to have a look at the space we’d be in and familiarise myself. I was a little surprised to find the bookseller had no knowledge of the event. And when I looked at the advertising posters in the shop, it clearly wasn’t on them. I went home and checked the internet, nope nothing on the website either. See, I told my chronic fatigued self: this will be the best event ever, because it’s going to be just you, the author and the publicist! You can all go down the pub! But I was still chronic fatigued and easily stressed and I began to think that finding someone to take my place might be the best idea. But wasn’t it unethical to hand an event over to someone else, knowing as I did that it was going to be…well, intimate?

Just as I was getting tangled up in knots over the various strands of worry involved, I received an email from the publicist telling me the event had been cancelled due to ‘poor ticket sales’. I’ll say! It’s hard to sell tickets to an event no one knows about. Through the immense relief, I felt a stirring of sharp curiosity to know what had happened. Had the event been cancelled before I went in the shop or after? Was there someone in a London office somewhere tearing at her hair and yelling ‘Christ, I knew there was something I’d forgotten to do!’ or was it more the case that no one had the heart to disappoint that poor blogger, who was probably gagging to appearing in the real world rather than the virtual one? Either way, I was just relieved, and it was a good reminder to myself that my public speaking days are over at the moment. Just because you were good at something in the past doesn’t mean you have to keep doing it.

Then there have been things I wonder whether I shouldn’t do but am still doing. The cancellation of the event meant I felt able to commit to writing another chapter of the book I am STILL working on, knowing it would be a tiring thing to do. Since I began writing this book in the early summer of last year, there has been a string of disasters, some acute, some chronic, all unpleasant, that make me wonder whether the universe is not on the side of this particular project. Despite my best efforts, I cannot help but read omens and portents into the world around me, and maybe these scare tactics of fate are a way of saying: Give up! Do something different! And still I stubbornly trudge along, churning out stuff that probably no one will want to read out of some cussed conviction that what I start I ought to finish. Of course there is a line of theory that suggests life is random, and cannot be interpreted as if it were a narrative whose end is obscured by future time. But given that every part of my life has been bound up with stories one way or another, what sense would that hold for me? Surely a refusal to interpret would go against everything I have ever held dear?

Mind you, away from these mental minefields, there has been some straightforward stuff, too. My capacity for comedy accidents continues to astound me. On the way into the funeral last week, walking in the slow, solemn procession into the crematorium, I suddenly realised my forward progress had come to an abrupt halt as the heel of my shoe got stuck in a grating. The line of mourners snarled up behind me as I struggled to hoick myself out, and I wondered for a moment if I’d have to walk in barefoot. To the kind woman behind me who said in a most sympathetic voice, ‘That sort of thing happens to me all the time,’ thank you.

And then yesterday I noticed as I headed out to my car that an industrious and quite substantial spider had constructed a large web across the garden path. Ha! I thought, and avoided it by walking over the lawn. Yes, sure spiders are great, but not on me. When I returned, I remembered the spider and carefully walked around it again. And then, mid-afternoon, I realised there was a book in the library I needed and I thought I would nip out quickly and collect it. You know what’s coming next, don’t you? I really hope my next door neighbour was not working in his garage as there was rather a lot of squealing. And I did a little raindance, too. Proof that troublesome as my brain may be when it’s working, not much good comes of switching it off entirely.

 

How Far Do You Go?

‘Tell him to man up,’ said the taxi driver as we sat in the usual London traffic jam. ‘That’s what he needs to do: man up. Take me for instance. I’ve just divorced my wife of twenty-two years, but do you see me crying?’

We inched forward in the line of nose to tail cars and I tried to concentrate on what he was saying because it was clear he meant well. It was just hard to hear him over the beating of my heart, and hard to sit still when I really wanted to launch myself out of the cab and run away.

I had come to London because my son had told me he was feeling suicidal. This was the second time he had used the dreaded word. The first he had been embarrassed and tried to downplay his emotions, saying he realised it was just the sort of signpost that indicated the need to take action. But since then, a series of long conversations had taken place, each time his emotions had reached a pitch that he couldn’t handle. And each time, as his grief rose steadily to the surface while the initial shock receded, he had been more violent in his speech, more obviously devastated, more deeply upset.

I paid off the cabbie, who drove away with further reminders about ‘manning up’ and stood outside my son’s student accommodation block, consumed with anxiety about what I would find and what I would need to do. I felt wholly responsible, and knew at the same time it was the last thing my son would want. I knew it bothered him that he could not go through this alone; he would much rather be self-sufficient in his sorrow. But he couldn’t. And he turned to me because I have some sort of experience at dealing with this sort of thing; I wouldn’t tell him to man up, or scorn him, or chide him, or try and jolly him out of it. But nor would it be like the movies, with me producing some wonderfully wise maxim at the right moment that would turn him around. It would be ordinary and messy; he would fight me because it got rid of some of his anger, and be inconsolable as it got rid of some of his grief, and I would soak that excess up, because it’s effective and what else do you do?

I have come to the conclusion that emotion is a form of compacted energy, and that it can be passed from person to porous person. And when you have that sort of contagious, toxic energy inside you, it turns into anxiety and, in my case, evil hormomes.

That day seemed to be a turning point with my son, and afterwards his situation improved quite swiftly. He found for himself, and as if from nowhere, the courage to start making things better. For a while we were all happy to my exquisite relief. And then I seem to have made the fatal error of relaxing, as instantly I was down with a stubborn infection. It still returns as soon as I do anything notably energetic. Mostly I haven’t because I’ve been bone weary, and more anxious than normal. When I sit and meditate (which I should do more often), I can feel six months of tension leeching out of me with the density of the ectoplasm that swirled around a 19th century medium.

Then last week, a tragedy. One of my closest friend’s husband had an unexpected but massive heart attack. He never regained consciousness and died three days later. This is bad enough in itself, but my friend suffers from advanced multiple sclerosis. She needs a scooter to get around and can’t always use her hands. She is able to teach still at the university, but had relied on her husband for cooking and shopping and picking her up when she fell over. When her motorised scooter broke down on her way home a few weeks ago, she could ring him and he rescued her. They have a teenage daughter.

Now which of us would that taxi driver command to man up, I wonder? It would be me, right? If I can do something to help my friend, shouldn’t I do it? Well, I figured that my friend’s widowhood would last longer than this particular lapse in my health. There would be plenty of time down the line to support her, and my recent experience of grief is that it lasts a long time and grows more acute before it goes to sleep. Plus, something I could barely admit: when I saw my son that last time, I had confessed that I was growing to hate our conversations because I felt like his emotional punchbag. I’d kept my own feelings to myself up until that point, but I was running out of storage capacity inside. I felt intensely guilty afterwards, and afraid that I had ruined a necessary outlet for him. But it was also true; I forget myself in that sort of intense interaction. Despite the fog of concern and guilt, it seemed imperative now to remember myself.

Then today a meeting was called for the friends of my friend, a strategy camp to consider what practical aid can be provided. I excused myself though said I would certainly hope to help in the months to come. Another couple wrote to say that they had cut short their stay in Spain (supposed to last to mid-September) and were flying back to help. It then transpired that the wife (who has some severe health issue herself) can’t stand or sit for more than ten minutes and could we please meet somewhere with a car park nearby and provision for her to lie down?

And there’s me staying home because I’m a bit tired. Let me tell you, being selfish is tougher than it sounds.