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.

Photo: Getty
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Theresa May's U-Turn may have just traded one problem for another

The problems of the policy have been moved, not eradicated. 

That didn’t take long. Theresa May has U-Turned on her plan to make people personally liable for the costs of social care until they have just £100,000 worth of assets, including property, left.

As the average home is valued at £317,000, in practice, that meant that most property owners would have to remortgage their house in order to pay for the cost of their social care. That upwards of 75 per cent of baby boomers – the largest group in the UK, both in terms of raw numbers and their higher tendency to vote – own their homes made the proposal politically toxic.

(The political pain is more acute when you remember that, on the whole, the properties owned by the elderly are worth more than those owned by the young. Why? Because most first-time buyers purchase small flats and most retirees are in large family homes.)

The proposal would have meant that while people who in old age fall foul of long-term degenerative illnesses like Alzheimers would in practice face an inheritance tax threshold of £100,000, people who die suddenly would face one of £1m, ten times higher than that paid by those requiring longer-term care. Small wonder the proposal was swiftly dubbed a “dementia tax”.

The Conservatives are now proposing “an absolute limit on the amount people have to pay for their care costs”. The actual amount is TBD, and will be the subject of a consultation should the Tories win the election. May went further, laying out the following guarantees:

“We are proposing the right funding model for social care.  We will make sure nobody has to sell their family home to pay for care.  We will make sure there’s an absolute limit on what people need to pay. And you will never have to go below £100,000 of your savings, so you will always have something to pass on to your family.”

There are a couple of problems here. The proposed policy already had a cap of sorts –on the amount you were allowed to have left over from meeting your own care costs, ie, under £100,000. Although the system – effectively an inheritance tax by lottery – displeased practically everyone and spooked elderly voters, it was at least progressive, in that the lottery was paid by people with assets above £100,000.

Under the new proposal, the lottery remains in place – if you die quickly or don’t require expensive social care, you get to keep all your assets, large or small – but the losers are the poorest pensioners. (Put simply, if there is a cap on costs at £25,000, then people with assets below that in value will see them swallowed up, but people with assets above that value will have them protected.)  That is compounded still further if home-owners are allowed to retain their homes.

So it’s still a dementia tax – it’s just a regressive dementia tax.

It also means that the Conservatives have traded going into the election’s final weeks facing accusations that they will force people to sell their own homes for going into the election facing questions over what a “reasonable” cap on care costs is, and you don’t have to be very imaginative to see how that could cause them trouble.

They’ve U-Turned alright, but they may simply have swerved away from one collision into another.  

Stephen Bush is special correspondent at the New Statesman. His daily briefing, Morning Call, provides a quick and essential guide to British politics.

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