Living with exhaustion

I first started having serious, inexplicable problems with exhaustion when I was about 14. My doctor at the time told me that it was ‘psychosomatic’ and mostly because I didn’t want to do PE. That it was impacting on my ability to dance and that I really wanted to dance, didn’t seem to matter.

In recent years I’ve identified a number of things that contribute to me having no energy. I get bouts of insomnia. I’m very hypermobile, this means everything is harder for me than it is for many people. My digestive system malfunctions when I’m stressed (probably because of the hypermobility) and failing to digest food isn’t good for the energy levels. I bleed heavily, so lack of iron can be an issue. I don’t seem to handle salt well so if I sweat or cry or bleed a lot I need to be careful with putting salt in or I wilt. But there are still also days when I have little or no energy and I don’t know why.

One of the things I’ve not had the energy for is fighting for a diagnosis – being self employed I can generally get away with the dodgy energy levels. I don’t want to go onto welfare, and I know there’s not much support available. So, I live with it.

However, one of the consequences of covid seems to be long term fatigue. Lots of people are now suffering with this, and it seems that fatigue is being taken more seriously. The idea that for some people chronic fatigue may be a consequence of having been ill is getting some traction. It is my hope that this will lead to the better treatment of people who were already struggling with exhaustion and poor energy.

The thing is, that if you have no formal diagnosis it can be very hard getting help, or even sympathy. It is difficult to persuade people to take you seriously, sometimes, when you don’t have a diagnosis. Especially around fatigue, where how badly it affects you will vary from day to day, and people may assume you are just being lazy, or uncooperative, or making a fuss. When I was a child, no one was considering hypermobility as a serious condition in need of care. I was still hypermobile. No one ever gave my grandmother a fibromyalgia diagnosis because that didn’t exist when she was struggling with pain and restricted mobility.

Having a condition that is not considered to exist is an exhausting, miserable, stressful place to be. Think about the women who endured post natal depression before anyone decided that was a real thing. Or the countless soldiers with shell shock before PTSD was an available diagnosis. I hope what’s going on now around chronic fatigue will help more people be kinder around these issues, and help more people recognise that just because there’s not much insight into a body problem, it doesn’t mean there is no problem.

Dealing with burnout

Everything is harder at the moment. Everything takes longer and requires more effort and almost everyone I know is struggling with concentration, with energy levels and with feeling overwhelmed. These are all ingredients for burnout. Things that would not normally put a person on their knees might do so in the current crisis. People who are not used to experiencing burnout may find it happening to them.

Having a long history of routinely burning myself out, this is something I’ve learned the hard way how to deal with, so I thought I’d share some insights.

Firstly, what not to do. Toughing it out. Stoicism. Fake it until you make it. Trying harder. Leaning in. Pushing through it. What these kinds of approaches do, is drive you deeper into burnout. If you are spinning out of control and heading into crisis, pushing through will not save you. Equally, if you’ve got through something by pushing, it wasn’t burnout, it was a bad day and there is a lot of difference.

It can be tempting to hide it and pull away from other people. Much depends on what works for you. If peace, silence, solitude and rest are the best things to heal you, then dealing with it privately may be your best bet. If you need holding, witnessing, cheerleading and supporting then you need to talk to your closest people about what’s going on, and ask for their help and support on whatever terms make sense.

One way or another, you need to recharge. Sometimes this is literally about rest and sleep. Sometimes it means needing to move your body more, or take better care around food. You may need to recharge your mind and dig in with nurturing things. If you don’t have go-to nurturing things for bad days, it is now urgently important to find out what will sustain you.

It can be tempting to escape into something mind numbing. If your primary need is for rest, this will help you. If your primary need is for nourishment, this can make things far worse. It may not be obvious, if you are new to this, what you need most.

Burnout, for me, has always been to some degree impacted on by my relationships with people. A habit of giving more than I can afford, of not saying when I’m in trouble, and of not asking for help. I have a lot of issues around expecting my relationships to be utilitarian. But, this time, I didn’t do that. I asked the people who are closest to me to look after me, and they did, they piled in without hesitation. On Thursday morning I started crying in what, for me, is classic burnout style. In the past, I’ve got into those and random crying and overwhelm can go on for days, weeks thereafter. The people I asked for help pulled me out of the nose dive. I was not instantly ok, but the space appeared to start looking after myself and to get back on top of things.

Working hours and mental health

One of the things I worry about, because I suffer from assorted physical issues and poor mental health, is not being able to work like a ‘normal’ person. This can mean pushing harder to try and do at least as much as I think a person in regular employment would do. Whatever that means.

Last autumn I established that I can do 40-50 hour weeks. I sustained that kind of workload for about five months. I watched it undermine my physical health and wipe out my mental health. On reflection, I don’t think is purely because I was fragile to begin with, but because long working hours are detrimental to mental health.

A long day leaves a person with no energy in the evening – or what’s left of it. You can only recover. If you can recover. You can’t do anything much to lift, cheer and sustain yourself. It is difficult being sociable or physically active when you are exhausted. The same thing happens with weekends – if you can take them. Being too tired to do anything much and not even having the energy to try and think of something it might be good to do.

In a counterpoint to this, I’ve seen a few articles floating about online regarding companies who have cut down to four day weeks without cutting pay. Productivity and enthusiasm go up. Sick days are reduced. Happier and more motivated staff turn out to be better workers.

When you are exhausted, it is harder to make good decisions. It is harder to plan for the long term or to take the time to examine your work life balance. Exhaustion as your normal state, is a toxic condition to live with. It sucks the joy out of life and turns everything into a chore that will take energy you can’t afford. Exhaustion makes it harder to engage with others, harder to care and harder to give. When you feel under-resourced, you are more easily persuaded of scarcity and the need to make sure you are protecting yourself from others. Exhaustion makes us easier to control.

When you have energy and time in which to deploy it, you can make more informed life choices. You aren’t just fighting for the next breath or staggering towards the next sleep. People who feel well resourced feel more able to share and give and are less likely to be frightened or persuaded by emotive, unevidenced arguments promoting hatred and division.

As the UK has shuffled towards the brexit cliff edge, I’ve noticed how many people I know are simply exhausted. I hear myself saying ‘just make it stop’, conscious that torture works by getting people to the point where they will do anything, say anything to make it stop. Sleep deprivation is a form of torture. Exhaustion works in much the same way. We don’t make our best choices when we are exhausted, and when we would do anything to just stop suffering for a little while.

Rest and Happiness

There is nothing like being exhausted to bring on the depression and anxiety. There is also nothing like pushing yourself to work when exhausted to lower self esteem and make you feel awful. Rest is a basic human need, and if for some reason you can’t have it over long time frames, your mental health will suffer, as will the rest of your body.

We need rest to heal, to recover from illness. We need time to draw breath, reflect on life, make plans, regroup and digest what we’ve learned. Life without this is stressful and feels like constant fire fighting.

I’ve done seven day weeks and twelve hour days – when you’re self employed and not very well paid the pressure to try and do some extra thing for whatever extra pay you can get, is vast. Some years ago I ditched hard work in favour of smart work. I started taking better care of myself. If I’m not teetering on the edge of burnout all the time, I’m faster, more effective, and more efficient. I’m also happier and better able to enjoy what I’m doing.

I normally take weekends off. Sometimes I take afternoons off, or a day in the week. At the end of December I had the wonderful luxury of a whole week off. I plan rest and recovery into my week. As a consequence, I get more done and feel better while I’m doing it. I’ve also seen marked changes in my self esteem. I’ve spent most of my life with low self esteem, easily persuaded that my wants are irrelevant and that my needs aren’t proper needs anyway. Everything and everyone else has always seemed more important. In putting my own need for rest on the list I’ve challenged those beliefs head on. It’s been interesting.

Having made room for my own needs, I’ve become less open to people who want to run me until I break, or use me until I’m used up. I’ve chosen better, healthier and more supportive spaces to be in. This has also greatly improved my happiness and wellbeing.

When you suffer from low self esteem it’s hard to give any priority to your own happiness and wellbeing, or to get out of situations that aren’t doing you any good. Failure to meet basic needs makes you feel even less like a person. Something as simple as resting can have a massive restorative effect. Not only does it replenish the body, but you also affirm your sense of worth and personhood by doing it. You have the same needs as any other person and the same entitlement to meet them, and that can be a huge building block to better feelings about yourself and having better standards and boundaries that will serve you, not someone else.

Resting gives you the time to look at how your energy is used and to reflect on what’s working. The person who is run ragged all the time doesn’t get space to plan an escape route, or energy to question what’s happening. Rest enables reflection, and reflection helps us make much better choices. Not only does rest help with mental health issues, it opens the way to being actively healthier and happier. It’s not a quick fix – the more entrenched the problems, the deeper the exhaustion the longer it takes to get on top of this. To begin, you have to treat it like it matters, and that can be hard. If you can’t treat resting like it matters, there are some huge questions to ask about your life, and you’re going to need to make the time to ask them. No one can run flat out forever.

Depression and exhaustion

Lack of energy is often treated as a symptom of depression, when a person is depressed, but I am entirely convinced that exhaustion is a major cause of depression. Often it seems like depression is understood as an internal event, but my experience is that it is often caused by external things. We make the problem, and the solution personal because looking at the collective implications would be hugely political.

Over worked, over stressed by increasingly difficult commutes, it’s easy to get into situations of not eating well enough to maintain energy and not being physically active enough to look after your body. That in turn all feeds into poor sleeping and further energy loss. Poverty and lack of work are also exhausting and the government is doing its best to make it so. Depression can be a kind of forced stop, when body and mind won’t take it anymore and just can’t do any more things. Rest at this point is essential.

However, if all you do is recover and head back into the fray, the next round is inevitable. If the way we live makes us ill, brief respites won’t solve anything.

Proper rest and relaxation has to be part of normal life. It’s not some kind of luxury add on bonus thing, it’s not a reward, or a distant goal. It has to be an every day thing to keep mind and body well. It also has to be good quality. Rest is like food – some things are more nourishing than others, and what you really need is the good stuff that will feed you, body and soul.

For me good books and films, beautiful anime, and lots of sleep works well as down time. When I’m a bit more lively, live music and other live entertainment, and time with friends is good. When I’m really low, I find socialising exhausting, even with the people I find it easiest to be around. But then, when I’m really low I find most things exhausting and I can get to places where I don’t have the concentration to read or to watch a film. While I know the theory of how to look after myself, I don’t always do a great job of it.

One of the issues for wellness, is how much slack you have in your systems. I tend to run close to the limits of what I can get away with. When things go to plan, this is fine. However, all it takes is one surprise energy drain and I can be in a lot of trouble. A cold, an unexpected job, or someone needing my emotional support in a big way can all tip me over. I’m not good at saying no to people, especially when I know those people are in trouble, and I’ve found it hard to really look at the costs of some things. But, I can do more good stuff and be of more benefit to others when I’m not dragging myself along the ground, and that logic has helped me make better choices. Like a lot of people, I find it hard making self care a priority when faced with someone else’s need, but I can think about overall effectiveness.

Which brings me round to another underpinner for depression – low self esteem. If you are the least important thing, if everyone else’s wellness and happiness are more important than your own, if every last job you might do is more important than whether you can do it… depression is inevitable. Not getting exhausted all the time in the first place requires you to be worth more than the things that are wearing you out. That’s not always easy. Sometimes it’s not even possible. If, when you are under so much pressure to do all the things and you fall apart, you are then blamed for falling apart, that really doesn’t help at all. It can in fact keep the cycles of exhaustion and depression firmly in place. Blame confirms that if only we’d tried harder it would have worked. Blame confirms that we should be able to do all the things with no respite. This piles stress upon stress and offers no way out. Sometimes, a little recognition that what you’re up against is shitty and unfair can be a life saver.

The mechanics of exhaustion and emotion

In recent months, I’ve had the opportunity to observe the effects of exhaustion on my own mind and reactions, and to learn from other people with similar experiences. This is what I’ve learned.

Exhaustion distorts reactions. It doesn’t even matter if the exhaustion came from doing a good thing that you felt really positive about, it still has the same effects. It becomes harder to control the emotions, and outbursts are likely – tears become impossible to control, most notably. Everything seems bigger and more threatening than it would otherwise be.

My first thought was that exhaustion makes us over-react. On reflection, I don’t think this is it at all. How we respond to a crisis, or even what looks like a crisis in the first place, depends a lot on whether we have the resources to deal with it. If you can deal with something easily, it’s hardly a disaster. If you have no means to tackle it, you’re facing a serious problem.

It’s not the scale of the event that shapes our responses, but whether we can deal with it. Exhaustion means having little or nothing in reserve, and no resources to tackle even small things. What can seem petty from the outside, can be unbearable from the inside because there is no way to bear it on top of everything else.

When we’re watching someone else’s reactions, the temptation can be to judge the appropriateness of their response by what we’d do when faced with the same challenge. This misses out that way we all face challenges differently, with entirely different resources and vulnerabilities. Thus we can end up thinking someone else is over-reacting or making a fuss, rather than recognising that their situation is undermined by problems we don’t have.

Yes, of course there are people who over-react and make a fuss, but this comes from factors of personality and circumstance, and is part of where they start from when dealing with a problem. If you’ve never seen a mountain, you might be more intimidated by the proverbial mole hill. The worst thing you’ve ever dealt with, is the worst thing you have had to face, regardless of how it compares to other people’s experiences. This is really noticeable watching children get to grips with setbacks.

It can be hard, when your problem looks like a mountain and the next person is wailing about what, to you, looks like a mole hill, but we all have our own hills to climb. Spending time getting cross with other people over how they deal with problems is a waste of time and energy. We will all have to make choices about what we can help with, and what we have to ignore, but in recognising how different experiences may be, we can make life a bit easier all round by not getting frustrated about it.

Survival tips for people who are on fire (metaphorically)

Some weeks ago I procured and read The everything Guide to Adrenal Fatigue. One of the main consequences, is that I’ve changed how I think about my body. Rather than just experiencing how I’m feeling, I’ve started to consider it in terms of chemistry. Not very sexy, but a good deal more useful! Here are some things I have learned so far that may help other people dealing with forms of burnout, stress, and depression.

I cannot tell the difference between depression and exhaustion when I am feeling them. I also often confuse anxiety with pain. If I tackle the pain and the exhaustion, I feel less depression and anxiety. If I take the pain and exhaustion seriously as issues, I am less likely to want to call them depression and anxiety, and thus I feel more able to do something about them. I have stopped thinking of myself as a person suffering from fatigue and started thinking of myself as a person who really needs a rest. This is helping me make changes. Other people’s mileage will vary depending on what the underlying issues are.

Thoughts and feelings are connected. If I let panic get a hold of me, I can run my body into the ground. If I let myself feel pressured, even making lunch can bring the threat of burnout. I have to slow down, take deep breaths, try to put things into perspective, and not let myself be panic stricken about what I haven’t done yet. I’m not actually on fire, it just feels that way. If I can control my thoughts, I can get in control of everything else and change something of how I am feeling. I have been in situations I could not control, this fear is a legacy from that, but I am not there now and need to learn to be gentler. People who are actually on fire need actual help, and will not be able to change things by thinking about it. I have been there, I need to recognise the consequences.

I need the good stuff. Happiness is not a luxury, not something I have to earn, not an optional extra. It is key to my viability. I need things that make me happy and leave me feeling good. I must not, therefore, squander my precious downtime on things I find stressful or miserable. I have to stop doing what other people want me to do and start doing what I want me to do. I have to trust the people close to me to support me in this and I must be less willing to tolerate people who don’t really care whether I am happy or not.

I have to stop using sugar and caffeine as a crutch to keep me upright when I’ve burned out. I need to handle exhaustion with rest, not with using stimulants to keep pushing myself ever onwards. I can have sugar and caffeine, but I need to treat them as recreational drugs, not as things I am dependent on.

I have to recognise when I can’t do what’s wanted, or don’t want to, or haven’t the energy, or the inclination and so forth, and say ‘no’ to people sometimes.

I have to be aware of the pressure I feel around money, work achievements, social engagement, the need to be a really fantastic activist and all the other things that would cheerfully suck me dry if I let them. I have to hold my own boundaries. Other people cannot be relied on to hold those boundaries for me, or to respect them. My body is a finite resource and needs treating that way.

Qualities of weariness

It’s worth noting that our bodies are set up to handle physical exhaustion, and have nothing like the same mechanisms for responding to mental fatigue. One, we evolved for, the other we didn’t, and it’s the one we are not equipped to deal with that has come to dominate modern living. Not one of our better plans, that.

First up we have the lovely endorphins, the body’s natural pain relief. Bounce around being active, and you’ll kick of a chemical reward system designed to leave you feeling satisfied. You’ll also get shot of your stress chemicals, so even if you are wiped by the end of the excitement, you’ll feel good about it – satisfied and relaxed. Mental exhaustion does not deliver any chemical rewards. It just leaves a person feeling depleted and flat.

If I have a day of intense physical activity, that can leave me in pain. This is a good thing, because the next day I have a fair idea of what I won’t get away with. Mental exhaustion is not as self announcing, and shows up in apathy and reluctance at first – all things it is easy to feel obliged to overcome. If I keep pushing, so long as I am eating and sleeping well, my body will adapt and toughen up over time. You can keep pushing against mental exhaustion until you have a nervous breakdown. My body, I have observed, is much more willing and able to toughen up in response to a challenge than my mind is.

Certain kinds of thinking are more problematic than others. I can use my mind a lot and be fine if I can go at my own pace. Time pressure and stress create issues. Time pressure and stress is how we build our workplaces and careers. They are the most reliable raw ingredients in the mix. If I can think about things when my head is in the right place, I do a better job and suffer less. Again, most conventional jobs don’t allow this. I do better with interesting challenges to chew on, but what many jobs give us is work that requires effort and energy, stress, focus and thinking, but not problem solving or anything that produces a sense of achievement. Just churning it out, endlessly.

But then, ‘work’ as a social construct does not exist to improve the human condition. We don’t do it to solve the problems of our tribe, or take care of our home. We don’t do it for the glory of achievement, most of us. It’s not about some heroic outcome, but about making money, usually for someone else. Most of western human life revolves to an alarming degree around work. Work that leaves people exhausted, apathetic, demoralised, with no feel good factors. As systems go, it’s a shoddy one, and it is well worth wondering if we might come up with something better that could deliver a better quality of life to the vast majority of us. Not the absence of work, (because that depends on exploiting someone else) but work that has value enough to cheer us, and patterns that don’t make us sick.

Exhaustion, bees and depression

A total absence of energy is often taken to be a symptom of depression. Based on experience, I am inclined to think this is not a simple case of cause and effect. Exhaustion can be as much a cause of depression as a symptom of it.

Every other mammal rests. The creatures that work flat out – the busy bees and their fellows – have very short life spans. We humans have got into the idea that some of us, should be working like bees, despite the fact that our mammal bodies really don’t handle this well. We are meant to rest. If we do not rest, then eventually we fall over. Based on watching my own cycles of burnout and depression, it tends to be the case that I get depressed when I am exhausted, and not the other way round. Exhaustion is not a symptom for me, it is the root cause. There are days when it takes all the will I can muster to get up and keep doing. Continue that day after day, with no proper breaks and no respite, and body and mind alike will eventually falter.

We are sold the idea that hard work is both a virtue, and the answer to all risks of poverty. Hard working people are celebrated by politicians, while those who are not able to be working hard enough are denigrated with words like ‘scroungers’. If hard work were all it took to be successful, I would be significantly more successful than I am. If hard work were the magic answer, those years my other half spent working two jobs and only getting a few hours sleep a night, would have made him rich rather than damaging him.

I know a lot of people who work very hard, and many of them are not especially successful. There’s an influence in choice of job – if you set out in life to get a job that will pay a lot of money, you’re probably doing better than someone who answered a calling to teach, to help, to put something of beauty and innate worth into the world. Medicine seems to be an exception there. If we measured people by the value of their contributions, teachers and nurses would be a good deal better paid, and football players would not, I suspect, have quite such vast incomes.

Work hard, throw all of your energy, passion and inspiration into what you do, and one of two things will happen. Either you will see no significant benefit, or you will get somewhere. The difference in outcomes may have more to do with luck than your own efforts. To work hard and soulfully in any capacity, and see no return, is soul destroying after a while. Depression seems an entirely natural response to this. To be unvalued, not well remunerated, not going places, seems to invalidate not only the work, but the soul and effort that went into it. This is always an issue for creative people, and very often an issue for anyone who gives a damn about what they were doing.

We do not live in a meritocracy. How good you are and how hard you work often do not count for much. The loudest, angriest voice often wins the argument. The person with the most buying power pays for the result they want. The person willing to do whatever it takes to make the profit, makes the profit and never mind the exploitation along the way. We spend our school years being told to try our best, work hard, and strive, and then we get out into the real world and find those rules frequently do not apply. If you want to be successful, you’re much better off getting someone else to work hard, while you cream off the profits and sit back. That way lies respect, power, and kudos. Work hard, and all bets are off as to what may come from this.

Nothing offends those in power like poor people with no desire to work themselves to death as busy little bees, enabling someone else to make a fortune. I am not a bee. I want a culture shift.

Fear and faking

When is it ok to stop? When can you say that no, that’s the limit, and be confident that you aren’t just being lazy or making a fuss? How do you tell if you’re being a hypochondriac, a drama queen, attention seeking with a low pain threshold and no ability to endure?

I have found that mostly I can push through pain, exhaustion and illness alike. It comes at a cost, as I get ever more tired and eventually mired in depression, but it can be done. Today, it took me an hour to work up the will to haul my tired and hurting body out of the duvet, but here I am. With the mantra ‘it’s just pain, it doesn’t matter’ I have pushed through all kinds of things. Memorably, I went to seven (out of the necessary ten) centimetres dilated pre-birth with no pain relief, and the people around me treating me like I was making a fuss, and probably over reacting about saying it hurt. In hindsight I think if I’d been screaming they might have taken me more seriously.

Through much of my life, the message has been simply that I’m a lazy hypochondriac and all that other stuff, and if I’d just pull myself together and make an effort I’d be fine. There is nothing wrong with me, apart from my attitude problem. The one time I tried to talk to a doctor about the exhaustion and the things I struggle with, I got it from him, too, and have not been able to face going back for another round of humiliation and blame. I’ve been told (not by professionals) the muscle pain is because I am too tense, and if I made the effort to relax, I would not have a problem. And yet I watch people make, what seems to me to be epic amounts of fuss over injuries so minor I wouldn’t even mention them.

I do not know how you tell when it’s ok to say ‘I can’t’ because when it comes down to it, mostly I can. Sure, my hands are hurting today, and I’m thinking slowly, but I can write a bog post. I can sort my email and do a few jobs. If there was something more important to do, I could push and get it done. As a consequence of that, and because I’m used to being told I’m not trying hard enough, I find it hard to stop. The last few years have brought me, for the first time in my life, people who suggest I should be gentler with myself. People who tell me that it is ok to rest, and that I am not lazy. I have trouble reconciling these perceptions, and I feel like a fake. I fear that the people who are being nice to me will eventually realise that I am a lazy hypochondriac, and the warmth will go away.

Some of this is about the balance between comfort and utility. For most of my life, the only thing that has seemed to matter is how much use I could be. I am surprised when that’s not the size of things. I do not know how to handle it. I hear the people who encourage me to think that my own comfort and feeling of wellbeing has an innate value, and I struggle to know what to do with it. It is the difference between being a useless thing, and being a valued person.

Machines are not supposed to stop, and if they do, you apply the appropriate duct tape equivalent and keep going. People are not machines, but if the people in your life do not allow you to be a person, it can be hard hanging on to that. Permission to be a bit inconvenient now and then, is a powerful thing.