Sisyphus and Me

I’ve been thinking a lot about patience, lately, and what true patience means, and what this means for how I go about the business of living right now.

The reason for this is that I’m more limited in function than I’ve ever been. At the end of last year, I had to give up showering (and bathing), and using the stairs. Conversations have also become difficult. I can manage a few sentences, but it’s tiring, especially listening and trying to process what is being said to me; most of my conversation with my mum is by text.

But, slowly, very slowly, I’m trying to build my capacity back up again. Progress is measured in months, not days or weeks – perhaps every month or so, I manage to add a minute on to the amount of time for which I can sit upright. I recently hit 22 minutes; a minor triumph.

So, patience is key. It’s a hard and painful life. My back hurts if I lie down too much, but I need to be lying down almost all the time. There’s no easy solution to this. I can’t do physio to strengthen it up. I can’t not lie down. Plus there are the usual, weird ME symptoms – a tree of fire spreading across my back one day, burning skin the next. Getting through each day is hard; but get through them I do, and they slip away, taking me closer to recovery.

In the meantime, I have to practice patience. But what does patience really mean? I’ve been thinking about Sisyphus: the Greek king who crossed Zeus and was condemned to pushing the same boulder up the same hill every day, only to have it roll back down the hill so that he’d have to start over the next day. (In some versions, when it rolls down the hill, the boulder hits him in the face; if you can think of a better metaphor for ME, let me know.)

My question is this. It seems to me that we have a choice, Sisyphus and I, in how we approach this. We could maintain the same attitude from day one: this is awful, I hate it, I can’t wait for it to be over. Needless to say, this is not clever; it makes things worse. Even though it is, in many ways, awful, it doesn’t help if we make it so that the awfulness is the only thing we see.

We could try to make it as fun as possible. Maybe I can turn my boulder into a glitter ball, and play funky music in my head, and disco my way to the top each day. But this feels wrong as well. The experience is the experience. You can’t blank it out, or paper over it. I feel that pretending there is no difficulty would be as sure a route to depression as focusing solely on the difficulty.

So here’s where I’ve got to: in some way, I need to find a way to appreciate the experience for what it is. I don’t mean to say that pain can be enjoyable – it isn’t. But I can learn to love what it’s doing for me. The small moments of relief that come over me like I’m sinking down into a fresh, cold pool. The time I’ve had to focus on myself, my inner self, to really come to know me, what I value, what I want, who I love. The strange, deep connections I’ve made with people, now that I can’t speak to them or see them in the way that I used to. The ability to let go and accept whatever comes. And the knowledge of my own endurance, tested and tempered over time, which paradoxically has made me softer.

Still, it’s hard. And although I understand that the hardness is the point, I haven’t yet reached a state of non-resistance. That is: even though I can appreciate what it’s doing for me, I would like it to be over. But I think my powers of acceptance are increasing; I think I’m nearly there.

So for people who doubt that being Sisyphus can be worthwhile, for fellow ME sufferers and for anyone else who’s pushing that same boulder up that same hill and can’t see an end to it, these are my words. You may hate the landscape you’re in, but maybe you can learn to appreciate it, even though it’s pretty barren. Maybe you can learn to enjoy parts of it, even though pleasure is hard to come by. Maybe you can find some warmth and belonging, even though the air is cold and there’s no one around. Maybe you can find the appreciation and the pleasure and the warmth within yourself.

Maybe one night, you pass your hands across the rough surface of the boulder. You get to know every crack and every sharp edge. You find an indentation, a smooth curve, just the right size upon which to rest your cheek. And you realise: the night is cold, but the rock is warm.

Maybe you think about what being a rock really means. You become aware of the strength and the fortitude that’s being ground into your body and your heart, day after day, as you toil up the hill, together. 

You fall asleep with your cheek cradled by your burden.

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A Good Girl (Part Three)

We’ve been looking at the idea of blame in chronic illness. When I look at how this story tends to play out, as I said at the end of Part Two, we haven’t even got to the worst part yet. The worst part is this:

You, a person with ME/CFS, do all that work, and you finally come to realise that it’s not your fault, and although bad things can happen, it doesn’t mean the world is an entirely bad place. You’ve adjusted your worldview and got over your depression. But the rest of the world has not. This, here, is the worst part. The rest of the world still believes that if they (or you) are good, then good things will happen to them (or you).

To illustrate the problem, here comes Amanda Knox (didn’t see that coming, did you?). At the start of the recent excellent Netflix doc, Amanda looks to camera and says, very deliberately:

“There are those who believe in my innocence, and there are those who believe in my guilt. There is no in-between. And if I’m guilty, it means that I am the ultimate figure to fear. Because I’m not the obvious one. But on the other hand, if I’m innocent, it means that everyone’s vulnerable. And that’s everyone’s nightmare. Either I’m a psychopath, in sheep’s clothing; or I am you.”

Amanda recognised that it was actually less scary for many people to believe she was a murderer, that she deserved to have been locked up for years and subjected to intense pressure under interrogation and equally fierce scrutiny from the press; her diaries, her sex life, all fair game. Because if not – if she was just a normal girl who had lost a friend and then been treated in that way – well, it would be monstrous, wouldn’t it. Something like that happening to someone like you? I didn’t know it until Amanda spelled it out for me, but that would have been too frightening to believe.

It’s much easier, much more comfortable, to believe that people in those types of scenarios have genuinely done something wrong – even if that something isn’t their original crime. (Amanda, if nothing else, seduced that poor Italian boy; she also carried condoms and I’ve even heard that once, she did a cartwheel.)

If we are good, then good things will happen to us. And if bad things happen to someone, why then, they must have deserved it.

This belief permeates the language of illness – chronic or otherwise. Keep fighting, we tell people with cancer and ME/CFS alike. I know you’ll beat this. You’re strong! You’re brave! You’ll figure it out!

When our friends and family speak to us like this, they are (usually) trying to be supportive. Unfortunately, it’s a conditional support with a dangerous undertone, whether or not they realise it. If I don’t beat it, if I don’t figure it out, have I not fought hard enough? Have I not stayed positive enough?

Or maybe I’ve done all of those things, but I was a bad girl in the first place. Maybe all that travel, all that busy-ness, in both my work and my personal life, was too greedy. Maybe I didn’t give my family enough time. Maybe I cared too much about the way my body looked and I trained too much. Maybe I was too ambitious. Maybe I was bossy and controlling. Maybe I partied too hard. Maybe I slept around. Who knows what sins lie beneath that good girl exterior? There must be something, surely; it couldn’t just be…blind luck.

This thinking is borne of a desperation to keep ourselves safe – insulated both from the moral sickness and the sickness itself. And this thinking is also at the heart of our treatment of people on benefits (scroungers), immigrants (job-stealers and scammers), and refugees (liars, fortune seekers, terrorists; or worse, not-even-human swarms of roaches).

It’s not just about illness. This judgement is everywhere. It falls on the homeless person begging by the cash machine, it falls on the greedy banker who loses his job, it falls alike on the female politician daring to show ambition and the pop star who tries to express an opinion. And if we don’t all try to cultivate a better attitude, one day, it could be you. You’ll be the one facing judgement, and you’ll realise, too late, that you have already been found wanting.

A Good Girl (Part Two)

My depression was a reaction to losing my health, my partner, my home and my work life. Fair enough, and true enough, at one level.

But I’ve been reading up on psychoanalysis recently, and a possible psychoanalytic interpretation is this:

To lose belief in a world which is just – a world in which you get what you deserve – would be too frightening (it’s very important, this, and we will come back to it later). So instead I chose to believe that I had not been good, and thus that I deserved the punishment I had been given. This is a classic depressive position. It leaves your beliefs intact; you merely have to sacrifice your sense of self worth. (Bye!)

Did I really believe this? Certainly not consciously. I do remember feeling a lot of loss, frustration and despair. I remember looking in the mirror (crying, of course, out-of-control crying, but even that seemed an inadequate expression of the screaming inside of me) and thinking: how did this all happen to me?

So, yeah, I was sad and I was sad that I’d been made sad. My best take on my depression is that it was down to a loss of belief in a just, safe world and in my ability to control that world, if that’s not too much of a compromise position.

I don’t want to gloss over the depression, although that’s not what this post was supposed to be about. I will say three things on the subject: first, it was extremely unpleasant. Second, due to the severe state of my ME, it had excellent source material with which to work: the dark thoughts seemed very real. Finally, I don’t think you can solve a mental health problem simply and neatly and never worry about it again. Those types of feelings tend to return whenever my health worsens, and it’s a case of remaining watchful without getting stressed or anxious about it, that wonderful trap which besets the over-thinker.

(Another aside, following a twitter discussion: it may also be that the misfiring biology behind ME/CFS helps to create some of these issues – perhaps I overthink because I have ME! Some people with ME report experiencing the physical symptoms of anxiety without the emotion behind it, which may be the sympathetic nervous system in overdrive; although naturally we also sometimes experience both emotion and physical manifestation. I’ve also noticed that on the first day of a bad relapse I always get a drastic change in mood that feels ‘chemical’, in the same way that PMT does.)

Anyway, good news: I was lucky enough to be depressed for a relatively short time. I came to see what was wrong with me – it took a while because I was convinced that my feelings were a completely normal reaction to being dumped whilst horribly ill, which of course they were, in a sense – but with the help of my loved ones I realised that I was clinically depressed.

The GP was great, we found some drugs that worked, and in tandem I tried to change my patterns of thinking – as we have already established, I’m nothing if not a trier. And here’s where I’ve ended up as far as belief systems go: bad things happen and that is OK. Lots of good things happen too. (Hurrah!)

None of what happened to me is my fault. All of it is really bloody bad luck, although I am well aware that plenty of shitty things happen to other people. Bad things happen, and that is OK; good things happen too.

As if to illustrate the point, there is bad news here, too, as well as good. The bad news is that we haven’t even got to the worst part of the blame game yet. And that, my friends, we shall discuss in Part Three.

To be continued. Obviously.

A Good Girl (Part One)

I’ve always been a good girl. Always got straight As. Never failed an exam in my life. I worked hard, and I didn’t ever break the rules – apart from a bit of teenage experimentation, which is practically part of the rules. I was so rarely told off at school that I still go hot and cold, over twenty years on, when I think of the few occasions on which I did catch the teacher’s ire.

If you have ME/CFS, you may recognise yourself in this description, and you may well have been told that your ‘Type A personality’ helped to cause your disease. You cared too much and you pushed yourself too hard; it’s your own fault, really.

The doctor at the King’s specialist CFS unit put it rather more nicely. He said, you should recognise that this approach has brought you some advantages in life. And he was right. I have a first class degree from the University of Oxford, and over the course of a decade I built a successful career in consultancy and research. But even though he was kind about it, he still saw it as part of the problem.

A bit of an aside – this Type A issue was used for a long time by the dominant school in the UK as evidence that the illness is psychological in origin. Now that we know it’s not, I still wonder if having that sort of personality means you try to push through for longer, which is what makes the illness take hold. Or maybe it’s a genetic link higher up the chain – or maybe the Type A issue is just a myth. And whilst I’m here: the same set of thinkers suggested that a higher prevalence among women also meant that it had to be psychological – you know how hysterical, prone to over-exaggeration and soft we all are. In fact, this supplies further evidence that it’s an immune dysfunction at its core; women have more complex immune systems due to child bearing, and hence have a higher incidence of all auto immune diseases.

End of aside.

Back to the point, and the point is this: when I worked hard for my exams and tried my best for my London clients, I was adhering to a particular belief system. Actually, I think almost all people hold this belief, without knowing it. Maybe those of us with a Type A personality (if there is such a thing) just hold it a little more strongly, take it a little more to heart.

The belief is this:

If I am good, my good behaviour will be rewarded.

Simple enough, yes? And possibly true to an extent. But it gets dangerous. Really dangerous.

The if-I’m-good-then-good-things-will-happen belief breaks down when it comes to chronic illness. It’s the chronic aspect that’s the killer. Everyone knows that stuff happens; it’s how you deal with it, right? But chronic means it isn’t going away. Your life is going to be like this now. There is pain (a lot of it, all the time), and loss (a lot of this too, as we shall see), and each day is a struggle. Your daily experience becomes more of a struggle than a well person can imagine, to live a life that is far less than a well person could accept.

And according to the logic by which you’ve lived your life, it must be your fault. You weren’t good enough, and so bad things are happening to you.

You start off thinking it’s your fault in the sense that you shouldn’t be letting your illness get to you. You’re weak, you should be working, even though you worked yourself to the bone trying to carry on through it. Later, you are told that it’s your fault BECAUSE you’re a high achiever, because you believed in that system so fully and worked for it so hard. And that’s when it really starts to sting.

The breakdown of this belief system can cause some real problems. I was upset on and off for a long time, simply at the fact of my illness. I felt that I’d lost so much, and I didn’t know what I’d done to deserve it. But I worked on it and I grieved and over the course of a year I got quite a lot better, physically – in fact I seemed to be on the path to recovery – and I thought I was doing OK. Maybe the system was OK after all.

And therein lay the problem. My belief system was still intact; I just hadn’t yet followed it through to its logical conclusion. (Can you see where this is going yet? You will, in a minute.)

Two years in to the illness, my boyfriend ended our relationship. I lost my home, my recovery and my ability to live independently, all in one fell swoop. And that was when I finally put my money where my mouth was: I got depressed.

To be continued.

First, do no harm

A conversation on social media got me thinking about my experiences with the medical profession whilst I’ve been ill. My initial assessment was: wow, I’ve been so lucky.
Then I thought a bit harder about how I’ve been treated and what I’ve been told. Here are a few snapshots.

A locum GP, very early on: “I really doubt you’re any more tired than I am – it’s normal to feel this tired,” (but it isn’t).

Another locum GP, still very early, when blood tests had shown that I was recovered from my mystery virus; I was back at work but no less tired and suffered a two-week hangover after trying to go to the gym: “It’s normal to feel run down for a while after a virus. That’s all it is,” (but it wasn’t).

Specialist doctor (actually a psychiatrist) at an NHS CFS unit: “This is what happened. After you had recovered from your initial virus, you started focusing more and more on your symptoms,” (but I didn’t, and I didn’t understand that he was trying to tell me that it was this ‘focus’ rather than the symptoms that had perpetuated my illness, and in any case, I thought that he knew best, so I didn’t correct him).

A kind and clever GP, much later, when I’d been ill for nearly two years and had just suffered a catastrophic relapse: “Don’t worry, you won’t stay sick, because you’re nothing like them.” (She meant people who have had ME/CFS for years or decades; she meant that I had a good attitude; she meant that it was their fault, if they didn’t get better. But, well, here we all are.)

I’ve also had two wonderful and wonderfully helpful GPs; I’ve had private specialists who really understand my illness and who have helped me a lot. In the main I’ve been lucky, but I’ve also seen glimpses of the denial of patients’ experiences that some doctors perpetuate.

Let me tell you about the conversation that started this train of thought. It was between three fellow ME/CFS sufferers, and each seemed surprised to find that what they’d thought was a symptom unique to them was in fact common to all three.

The symptom in question is a sort of sleep disturbance. It sounds horrid to experience, but I suspect it’s not terribly uncommon. The first person I spoke to about it in real life turns out to have experienced it too – and they don’t even have ME.

So far, so whatever. We all know sleep is a problem for people with chronic illness. Here’s the thing though. My friends were simultaneously relieved and shocked to find out they weren’t alone.

Why? Well, the first had been nearly sectioned after she had talked to her doctors about this. The second had been threatened with electric shock therapy, and, you’ve guessed it, sectioning again. The third – in some ways this is the best one – hadn’t dared mention this particular symptom to any doctors, as she was scared of what they might do. Rightly so, it turns out.

I spend most of my time being grateful that the system has treated me so well; that, in the main, it hasn’t told me I’m not sick, that I’m either crazy or I’m pretending.

But maybe it’s time to get angry. My friends were subjected to Victorian practices that go well beyond mere gaslighting – as if that weren’t bad enough.

These are smart, warm, funny, self-aware women, each of whom I am proud to call my friend. Let me repeat again what happened to each of them: two nearly sectioned, one threatened with electric shock therapy, one too frightened to speak out at all.

I am full of grief and outrage for each for them.

I’m so lucky that the doctors, by and large, believed me. (This is partly, but not purely, due to being relatively recently diagnosed.)

I’m so lucky that I got sent to private specialists who get it, really get it, and have helped me so much.

I’m so lucky that work said, OK, you can stop, just tell us what you need and when.

I’m so lucky that only one person in my private life tried to gaslight me.

In reality, I don’t just feel lucky. I feel relieved, and, if I’m completely honest, still a bit scared each time I meet a new doctor (or indeed, a new anyone) of how they will respond to my condition.

Actually, I’m a lot scared. What happened to my friends, only a few years before me, is terrifying. 

Even now, young people with ME/CFS are forcibly removed from their families and locked up in psychiatric wards – go read up on Karina Hanson, if your heart can bear the weight of the cruelty.

To finish, here are a few thoughts from Edward Shorter on the subject of CFS. Edward Shorter is not a doctor; he’s an historian. In 2015 he described CFS patients as “moaning and groaning victims”, “pouring out tales of woe” (good to know you liked my blog sir!), indulging in “a kind of delusional somatisation”. He also stated that “there have been no breakthrough findings of organicity…and there never will be,” thus revealing himself to be something of a chump – but a dangerous chump, nonetheless. Just this month, the NIH – the US body responsible for funding research into the condition – invited him to speak to their CFS Special Interest Group: that is, to the very researchers being enlisted to work on the disease. (Guess what Mr Shorter? I’m an historian too, and I can tell you, history is not going to judge you kindly.) 

Even now, in late 2016, with all that we know and all that we need, the NIH thought it right to make space for this rigid and cruel denialism.

It’s time to stop being scared. It’s time to get angry.

(With thanks, love and admiration to KB, EF and FJ)

This is ME, now

I’ve realised that I haven’t written a post describing what life with ME/CFS is really like, since my illness became this severe. So here goes. It’s taken a while to write this; my apologies if it’s a bit broken up.

(I was tempted to do this in a pastiche of those celeb lifestyle pieces – “Rosemary sinks down into the oatmeal sofa on which she passes her days, running a hand through her artfully tousled bedhead” – and who knows, one day I may still – but for now this is going to be writing with minimal artifice, minimal effort. You can probably figure out why.)

So this is what it’s like.

Everything I do, all day, every day, is about conserving energy, and avoiding pain.

Most days I feel somewhat uncomfortable, and some days I feel really horrible, so horrible that it makes me nauseous. (And tearful.) The more I do right, the more comfortable I can feel. And doing right means expending as little effort as possible.

This is because I have unfeasibly small stores of energy. I’d estimate that a small task for me (let’s say popping to the bathroom, or eating my lunch) is equivalent to maybe a 20 minute run for you. I can do it – in fact I can do it several times a day, and in my case I have to – but I need up to an hour’s rest afterwards. And rest, for me, means lying down.

Because I have so little capacity, my day is structured around doing what I need to do in order to survive – that is, eat, use the bathroom and stay clean – plus a little bit of extra ‘activity’ to prevent my wasting away. This activity currently comprises 90 seconds of very slow walking in the garden once or twice a day, and twenty minutes sitting upright at a time. Meal and snack times are pretty rigid as this helps me get enough rests in between exertions; even loo breaks need to be semi planned.

The rest of the time, I’m lying down, on my sofa.

I can’t do anything for myself. A trip to the sink to fill up my water bottle – unlikely. Making a cup of tea or getting something to eat – out of the question. So I need fairly close care and attention from my carers.

If I climb the stairs (which happens twice a day), I have to lie on my bed to recover afterwards. I’ve learned to sit down whilst cleaning my teeth; I can’t stand for that long without repercussions. Occasionally I find myself needing the loo but without the preceding rest time to facilitate it; this means either holding on for an hour, or going and suffering the consequences – likely feeling like a truck has hit me for the next hour, or at worst, the rest of the day. Embarrassing, isn’t it.

I can’t have visitors or talk on the phone as it’s simply too exciting. I feel OK doing it – in fact I feel good doing it – but the exertion and the adrenaline will have me paying for it afterwards for at least a couple of days, or, for longer and harder visits (such as my last therapist session), maybe a whole, very painful, week. I think this part is the hardest for friends and family to understand. I don’t see anyone. Let’s skip over that, though, because it’s too depressing.

My brain is rather ahead of my body. It’s not great and it can’t do much early on in the day – but from late morning onwards I can go on Twitter and watch TV OK. So my life is mainly reading, watching sport or box sets on my tablet, and trying to stay within my limits.

So the day passes. So my life passes.

Ask Polly

So I recently discovered the ‘Ask Polly’ advice column and I cannot believe it has been out there for so long without my knowing.

If you haven’t yet heard of it either, go read some. Ask Polly is by Heather Havrilesky in New York magazine and there are a ton of back-columns online. It’s nothing like an ordinary advice page, where people write in with problems and get given a practical solution or suggestion, with or without some understanding preamble. Polly’s understanding preamble is the column. Sure, she’ll get round to making some suggestions eventually. But the people who write in are usually stuck in a major way – social isolation, familial estrangement, hating their work or knowing their relationship is wrong – and seem unable to move forward. Polly spends a lot of time not just empathising with them but telling them why it’s OK to feel the way they do, what will make them carry on feeling that way and what could help them to stop. She almost always finishes by telling them (in one form or another) that they are vulnerable and brave, needy and strong, human and magical. She gives them permission. And yet the column is never formulaic, and always new. It makes me feel more powerful and more real every time. If this moves you, it’s down to her writing, not mine. Seriously, go read some.

I don’t exactly want to write to Polly (Heather) and ask her about how to handle life with ME/CFS, I don’t think. Although I am interested in what she’d say, because, possibly like most people who write to her, I don’t see how she could especially help me (stuck on the sofa as I am). And yet, I must do, because I imagine her talking to me about how to navigate my life all the time. Or maybe it’s me talking to myself and channelling her, I’m not sure. Anyway, when Polly/Heather/I talk to myself like this, this is what Polly/Heather/I say:

Life is hard. We all know it’s hard. I’m trying to rebuild here, and it’s really, really hard. I’ve had to start over and over, and I probably will again, and I’m not even sure how far I’ll get. But I’ll keep building up the battered bricks of my life, I’ll go into the ragged pile and start putting them together piece by careful piece, until my hands are bleeding and shaky and my knees are raw. And when my disease knocks the bricks down again, I’ll start building them back up, even though they have fallen so many times already, even though they may be torn down over and over, even when a fire sweeps through and turns them all to burnt-out dust.

Even then I’ll pick up the tiny dusty cinders and stick them together with sweat and dreams, and this time I’ll start building myself a throne, because I’m a fucking queen. And when I’m ready – not when I’m done building, but when I’m pure and simple ready, I’ll know it when I am – I’ll stand on my throne of dust and sweat and toil and hope, and I’ll turn my wrecked heart to the world and say: I am here. I am still here.