Not sleeping is awful beyond belief, but I can't imagine life without my insomnia

Sleeplessness is difficult to cope with, and can result in dizziness, paranoia and hallucinations. But chronic insomnia sufferer Nicky Woolf reckons he'll see the sunrise more times than you will.

I am writing this at half past four in the morning.

I usually work at night. I'm not asleep. Not because I am panicked about the deadline; no extraneous worries or gnawing doubts trouble the calm waters of my mind tonight. But I'm still not asleep. “I never sleep”, I joke to friends. It's not true – I do sleep, sometimes – but it's never easy. It's always a fight to push my brain under, as if I am drowning it. Sometimes, much more often than I would like, I simply lose; lie there listening to the white noise in my mind, snatches of songs playing over and over, meaningless words and phrases and images for hours on end until it's time to get up again un-rested; or, like tonight, give up entirely and get on with some work.

Sometimes, if I have something I really need to be well-rested for, like an exam or an interview, I will keep myself awake the couple of nights before, just to slightly increase my chances of sleeping the night directly before. Even this doesn't always work. My brain has an uncanny ability, no matter how tired I may be physically, simply to refuse to go to sleep. Sometimes I can trick it into relaxing. Rarely, but triggered seemingly by nothing, I have a particularly bad insomnia attack. During these, I can go days – very occasionally even weeks – without any satisfying sleep at all, leading to dizziness, paranoia and hallucinations; crackling or popping noises at the edge of hearing, and smoke or flashes in my peripheral vision. It is practically impossible to for anyone who hasn't experienced it to understand quite how awful it feels to operate on that little sleep.

Insomnia is not, in fact, an illness. It is a symptom – sleeplessness – with a wide variety of potential causes both physiological and psychological. General stress or worry, lifestyle changes, new work hours and so on can cause acute (in the medical sense, meaning short-term or temporary) insomnia, which can often also be a side-effect of other illnesses like those that affect the respiratory tract. About the causes of chronic, psycho-physiological or “primary” insomnia like mine, less is known. In about fifty per cent of cases it can often be linked to deeper-rooted psychological issues including depression. There is also a condition called somniphobia or hypnophobia, which is a chronic insomnia caused by an irrational fear of sleep after nightmares or trauma early in life.

But some people just don't sleep sometimes, with no visible links to previous trauma or current depression – and while there are behavioural changes and medication that can be used to ameliorate the problem, there isn't really a cure.

“People say things like, 'have a bath', or they ask 'have you tried having camomile tea before bed', says Clare*, who has suffered from insomnia since her early teens. “All obvious questions to which you obviously know the answer. They're well-meaning and sympathetic, but it kind of illustrates how very little they know about it. Because... there's an insanity that comes to you after a long time [without sleep] where your mind is stretched very nearly to breaking point, and no-one is going to assume when you're ratty, or crying, or having a weird reaction to anything it's because of insomnia. But it is. Because not sleeping makes you mad. It casts a shadow over the whole day. And because sleep is something everyone has and doesn't have a lot, it's something everyone thinks they can relate to. Everyone thinks they get it. But they don't.”

“About a third of the population has a tendency towards insomnia,” says Professor Adrian Williams, of the London Sleep Centre. “There are many potential causes – perhaps body clock problems, psychiatric issues around depression: probably 50 per cent of insomnia is linked overtly or subtly to depression. Then physical disturbances which cause patients to wake; most commonly, sleep apnea – snoring-related problems – restless legs. These are symptoms that the patient may not be aware of; they say 'I wake up and can't go back to sleep'. Then there's psycho-physiological insomnia, which used to be called Primary Insomnia, and the current thinking is that this occurs in a physiology which allows poor sleep.”

The human brain is a terrifically complex machine, and the subtlest changes in brain chemistry can have far-reaching effects on our lives. Sleep is regulated by a family of neurotransmitters produced in the hypothalamus; the most prominent one is gaba, (which stands for gamma-aminobutyric acid and interacts with the pontine tegmentum to initiate REM, or deep sleep), and in 1999 a neurotransmitter called “hypocretin” was discovered to act as a switch to regulate wakefulness, and is notably absent in narcoleptics.

About the physiological causes of insomnia in the brain, Professor Williams tells me, not much is known. Considering how common the problem is, and how numerous its variations, there have been very few studies ever done on human subjects. One, Webb and Bonnet, 1979, concluded that sleep deprivation carries “no ill effects” - but in that study participants had their sleep reduced no further than to four hours in every 24; the same amount, in fact, that Margaret Thatcher recommended for a productive life. The record for monitored sleep-deprivation is held by 17-year-old Californian high school student Randy Gardner, who stayed awake for 11 days in 1964, reporting hallucinations, problems with short-term memory and paranoia, and no long-term ill-effects were noted, though the experiment was conducted with the little scientific rigour. Harder-pushing sleep denial studies with animals – rats and dogs – do lead eventually to death.

“There are concerns about the physical consequences of poor sleep, and they're under investigation now,” says Professor Williams. “The textbooks would not talk about this stuff at the moment – textbooks being ten years out of date – but we in the field feel that insomnia is not as benign as it might seem. It's more than just an irritation, and should be taken seriously.”

For myself, I have no idea who or what I would actually be if my insomnia was cured tomorrow. Sleeplessness has been such a constant in my life that I'm not sure I'd know what to do if I could just lay my head on the pillow and switch off the way others can. If I'm under pressure, I can easily work 48 hours or even more without sleeping if I really need to; I've had plenty of practice.

On top of that, there is a strange and strangely wonderful community of the sleepless with whom I often share the connection of being online, awake, sleepless, frustrated, at past five on any given weekday morning. Oh yes: and I'll bet my last valium that we've seen the sunrise more times than you ever will.

In fact, the sun is just rising now.

*Names have been changed to protect identity

Sunrise over London. Photograph: Getty Images

Nicky Woolf is a writer for the Guardian based in the US. He tweets @NickyWoolf.

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There's nothing Luddite about banning zero-hours contracts

The TUC general secretary responds to the Taylor Review. 

Unions have been criticised over the past week for our lukewarm response to the Taylor Review. According to the report’s author we were wrong to expect “quick fixes”, when “gradual change” is the order of the day. “Why aren’t you celebrating the new ‘flexibility’ the gig economy has unleashed?” others have complained.

Our response to these arguments is clear. Unions are not Luddites, and we recognise that the world of work is changing. But to understand these changes, we need to recognise that we’ve seen shifts in the balance of power in the workplace that go well beyond the replacement of a paper schedule with an app.

Years of attacks on trade unions have reduced workers’ bargaining power. This is key to understanding today’s world of work. Economic theory says that the near full employment rates should enable workers to ask for higher pay – but we’re still in the middle of the longest pay squeeze for 150 years.

And while fears of mass unemployment didn’t materialise after the economic crisis, we saw working people increasingly forced to accept jobs with less security, be it zero-hours contracts, agency work, or low-paid self-employment.

The key test for us is not whether new laws respond to new technology. It’s whether they harness it to make the world of work better, and give working people the confidence they need to negotiate better rights.

Don’t get me wrong. Matthew Taylor’s review is not without merit. We support his call for the abolishment of the Swedish Derogation – a loophole that has allowed employers to get away with paying agency workers less, even when they are doing the same job as their permanent colleagues.

Guaranteeing all workers the right to sick pay would make a real difference, as would asking employers to pay a higher rate for non-contracted hours. Payment for when shifts are cancelled at the last minute, as is now increasingly the case in the United States, was a key ask in our submission to the review.

But where the report falls short is not taking power seriously. 

The proposed new "dependent contractor status" carries real risks of downgrading people’s ability to receive a fair day’s pay for a fair day’s work. Here new technology isn’t creating new risks – it’s exacerbating old ones that we have fought to eradicate.

It’s no surprise that we are nervous about the return of "piece rates" or payment for tasks completed, rather than hours worked. Our experience of these has been in sectors like contract cleaning and hotels, where they’re used to set unreasonable targets, and drive down pay. Forgive us for being sceptical about Uber’s record of following the letter of the law.

Taylor’s proposals on zero-hours contracts also miss the point. Those on zero hours contracts – working in low paid sectors like hospitality, caring, and retail - are dependent on their boss for the hours they need to pay their bills. A "right to request" guaranteed hours from an exploitative boss is no right at all for many workers. Those in insecure jobs are in constant fear of having their hours cut if they speak up at work. Will the "right to request" really change this?

Tilting the balance of power back towards workers is what the trade union movement exists for. But it’s also vital to delivering the better productivity and growth Britain so sorely needs.

There is plenty of evidence from across the UK and the wider world that workplaces with good terms and conditions, pay and worker voice are more productive. That’s why the OECD (hardly a left-wing mouth piece) has called for a new debate about how collective bargaining can deliver more equality, more inclusion and better jobs all round.

We know as a union movement that we have to up our game. And part of that thinking must include how trade unions can take advantage of new technologies to organise workers.

We are ready for this challenge. Our role isn’t to stop changes in technology. It’s to make sure technology is used to make working people’s lives better, and to make sure any gains are fairly shared.

Frances O'Grady is the General Secretary of the TUC.