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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Morning after pill: It's time to say no to the "ultimate sexist surcharge"

A new campaign aims to put pressure on the government to reduce the cost of emergency contraception.

The British Pregnancy Advisory Service recently launched its Just Say Non! campaign to highlight the fact that British women pay up to five times more for emergency contraception than women on the continent. The justification for the UK price of up to £30 – and the mandatory consultation with a pharmacist – is that otherwise British women might use the morning-after pill as a regular method of contraception. After all, you know what us ladies are like. Give us any form of meaningful control over our reproductive lives and before you know it we’re knocking back those emergency pills just for the nausea and irregular bleeding highs.

Since BPAS announced the campaign on Tuesday, there has been much hand-wringing over whether or not it is a good idea. The Daily Mail quotes family policy researcher Patricia Morgan, who claims that “it will just encourage casual sex and a general lack of responsibility,” while Norman Wells, director of the Family Education Trust, which promotes what it calls "traditional values", fears that “there is a very real danger that [emergency contraception] could be misused or overused.”  

The Department of Health has indicated that it has no intention of changing current policy: “We are clear it is only for use in emergencies and we have no plans to change the system.” But why not? What is the worst that could happen? Wells argues that: “The health risks to women who use the morning-after pill repeatedly over a period of time are not known.” This may be true. But do you know what is known? The health risks to women who get pregnant. Pregnancy kills hundreds of women every single day. There are no hypotheticals here.  

The current understanding of risk in relation to contraception and abortion is distorted by a complete failure to factor in the physical, psychological and financial risk posed by pregnancy itself. It is as though choosing not to be pregnant is an act of self-indulgence, akin to refusing to do the washing up or blowing one’s first pay packet on a pair of ridiculous shoes. It’s something a woman does to “feel liberated” without truly understanding the negative consequences, hence she must be protected from herself. Casually downing pills in order to get out of something as trivial as a pregnancy? What next?

Being pregnant – gestating a new life – is not some neutral alternative to risking life and limb by taking the morning-after pill. On the contrary, while the UK maternal mortality rate of 9 per 100,000 live births is low compared to the global rate of 216, pregnant women are at increased risk of male violence and conditions such as depression, preeclampsia, gestational diabetes and hyperemesis. And even if one dismisses the possible risks, one has to account for the inevitabilities. Taking a pregnancy to term will have a significant impact on a woman’s mind and body for the rest of her life. There is no way around this. Refusing to support easy access to emergency contraception because it strikes you as an imperfect solution to the problem of accidental pregnancy seems to me rather like refusing to vote for the less evil candidate in a US presidential election because you’d rather not have either of them. When it comes to relative damage, pregnancy is Donald Trump.

There is only a short window in a woman’s menstrual cycle when she is at her most fertile, hence a contraceptive failure will not always lead to a pregnancy. Knowing this, many women will feel that paying £30 to avoid something which, in all probability, is not going to happen is simply unjustifiable. I’ve bought emergency contraception while conscious that, either because I was breastfeeding or very close to my period, I’d have been highly unlikely to conceive. If that money had been earmarked to spend on the gas bill or food for my children, I might have risked an unwanted pregnancy instead. This would not have been an irrational choice, but it is one that no woman should have to make.

Because it is always women who have to make these decisions. Male bodies do not suffer the consequences of contraceptive failure, yet we are not supposed to say this is unfair. After all, human reproduction is natural and nature is meant to be objective. One group of people is at risk of unwanted pregnancy, another group isn’t. That’s life, right? Might as well argue that it is unfair for the sky to be blue and not pink. But it is not human reproduction itself that is unfair; it is our chosen response to it. Just because one class of people can perform a type of labour which another class cannot, it does not follow that the latter has no option but to exploit the former. And let’s be clear: the gatekeeping that surrounds access to abortion and emergency contraception is a form of exploitation. It removes ownership of reproductive labour from the people who perform it.

No man’s sperm is so precious and sacred that a woman should have to pay £30 to reduce the chances of it leaving her with an unwanted pregnancy. On the contrary, the male sex owes an immeasurable debt to the female sex for the fact that we continue with any pregnancies at all. I don’t expect this debt to be paid off any time soon, but cheap emergency contraception would be a start. Instead we are going backwards.

This year’s NHS report on Sexual and Reproductive Health Services in England states both that the number of emergency contraception items provided for free by SRH services has “fallen steadily over the last ten years” and that the likelihood of a woman being provided with emergency contraception “will be influenced by the availability of such services in their area of residence.” With significant cuts being made to spending on contraception and sexual health services, it is unjustifiable for the Department of Health to continue using the excuse that the morning-after pill can, theoretically, be obtained for free. One cannot simultaneously argue in favour of a pricing policy specifically aimed at being a deterrent then claim there is no real deterrent at all.

BPAS chief executive Anne Furedi is right to call the price of Levonelle “the ultimate sexist surcharge.” It not only tells women our reproductive work has no value, but it insists that we pay for the privilege of not having to perform it. It’s time we started saying no

 

 

Glosswitch is a feminist mother of three who works in publishing.