My Life and Insomnia

If my bedroom was a dull blue void full of miniature flying sheep I think I’d have a sleepless night or too, as well! (Credit: Fanette via Pixabay)

I am 33 years old and I have lived with disturbed sleep for, as far as I can remember, around 29-30 of them.

As a child I was prone to waking up, disturbed, in the middle of the night.

As an adult, not only are there regularly nights where this disturbance is pretty much par for the course but there are times when my brain just outright refuses to shut off at all!

Anyone who has been there will know the struggle. Sleep problems are believed to affect around one in three of us at any given time. It’s a widespread and massive problem.

What’s more, poor sleep is not just bad for the brain that needs the rest. There are knock-on effects. A few nights of bad sleep, for example, can delay your regular sleep phase, indicating problems in melatonin production and processing. Melatonin is one of the neurotransmitters involved with sleep.

Another is GABA, gamma-aminobutyric acid. Now I hate the “This is the X-Hormone” where X represents a particular trait but this is the relaxey-hormone. It’s a neurotransmitter that literally dulls yours nerves, making you feel calm, comfortable, relaxed and sleepy.

This a stick-and-ball model of the GABA molecule. gamma-aminobutyric acid. This is the closest I can find to a hormone with a one-track name, the ‘relaxey’ hormone! GABA is synthesised inside our own bodies to help us feel calm and relaxed. It is heavily linked to our sleep system. It’s also actions of other analogues or chemicals that affect the receptors for GABA that make us feel nice, e.g. alcohol, which binds to GABA receptors and mimics it’s action. It’s why alcohol makes you feel all warm, fuzzy and relaxed.However some people already seem to struggle with GABA production in their bodies. In autistic people, for example, it is believed they either have low production of serum GABA or fewer GABA receptors. (Credit: Jynto, Public Domain)

So the truth universally acknowledged is that bad sleep makes you upset, grumpy and anxious, with dysfunctional GABA systems the likely culprit.

Well, half of the likely culprit. You see we also have cortisol. Cortisol is an endogenous (from inside your own body) anti-inflammatory, your body releases it when you are under stress. Unfortunately, sleep is one of the key means of regulating it and studies show when you don’t sleep well levels of this hormone build up in your body. What does that mean? Well, high cortisol usually indicates high stress, high stress usually indicates danger and danger would necessitate panic.

So when you don’t sleep well you are more prone to irritability, anger, anxiety and panic.

Evidence also seems to link poor sleep with dysfunction in the insulin/blood sugar balance systems too. Combined with the tiredness it can lead to people not only eating badly during periods of poor sleep, but increases in likelihood of weight gain.

And poor sleep has been linked with increased risks of cardiovascular diseases such as heart disease and stroke.

Some complications to expect from persistant disturbed sleep! Honestly I did giggle at “Severe Yawning” until I remembered literally a few days ago having a yawn day where EVERY SINGLE YAWN caused my temporomandibular muscles – the muscles around your jaw – to lock. I don’t love it. Anyway the point of this image is to highlight that regardless of whether it’s their own fault or not patients with sleep trouble (particularly chronic like mine) NEED HELP! Sleeping pills are cheap, dog. Type 2 diabetes, stroke, heart disease, severe mental and emotional breakdown? That’s a lot more costly to any health service! (Credit:
Mikael Häggström, Public Domain)

Basically if there’s one thing in your life you should keep as a pretty solid, regular pattern it’s having a nice kip! Yet, again, around 1 in 3 of us at any given time is experiencing sleep problems. Why?

To answer that we’d have to know what sleep is so let me give you the best, medical definition of what sleep is.

Sleep is, err, well, your brain, erm, just, like, shuts down, but not completely! Because if it did that you’d be dead. It’s more of like a standby mode. It works by, umm, mechanisms and…shit…and the main function of it is, I dunno, to render you vulnerable to attacks by predators?

I kid! We know more about sleep than that, I’ve already talked about hormonal pathways, neurotransmitters, sleep seems to play a huge role in memory and information processing but the fact is for all the study and knowledge we have on it we still don’t know exactly what it is, how it is or why it is.

I find it surprising, then, that all the advice about sleeping poorly is so fucking judgemental, as if everyone’s a damn expert on the topic!

I get it if you’re some 20 year old, just cut the apron strings and you’re trying to fall asleep in front of a phone blasting blue-spectrum light into your eyes. Blue spectrum light is known to mimic natural light for our bodies, delaying or preventing the appropriate production of melatonin – again for want of a better term the ‘sleep’ hormone. Although it doesn’t quite make you fall asleep as much as it makes you drowsy and regulates your body’s sleep rhythm, taking a lot of cues from light.

The modern face of insomnia is ALWAYS someone with their full-blue-light phone screen beaming into their face. Whilst there is evidence that increased screen time has decreased sleep quality in some people pinning all of the blame on personal habits is an easy cop out. What’s more an increasing number of manufacturers are including night-modes in their devices that shift the colour spectrum of the screen to red in order to prevent the negative effects of blue spectrum light on melatonin production.
Consider, for example, the year and a half we’ve just been through. Everyone’s dead or dying of a novel virus sweeping across the world, the United States has seen record temperatures, Greece and Turkey are now one giant barbeque, we’ve seen floods, fires and untold misery and yet I bet there are people who still want to blame sleeplessness on people looking at their damn phones too much! Get the fuck out! It’s a serious problem, and even where it is a personal failure in understanding the routines of good sleep those people need education, not judgement.
(Credit:https://www.myupchar.com/en CC-BY-SA 4.0)

People like that may need some help or advice on ensuring healthy sleep.

But I’m an autistic, lifelong sleep wrestler, in his thirties, who is quite biologically literate. Telling me to turn off my devices at an appropriate time, use apps or settings for night (phones and computers tend to have these night-modes where they shift the colour spectrum they are putting out to the red-end. This is a lot more conducive to melatonin production). Most of the time I’m getting advice about how best to sleep you can bet your arse I’ve been there, done that and still got the sleepless night. So what’s going on?

Well, welcome to the weird and wonderful world of individual physiology! Something that has long been touted as ‘the future of medicine’ with promises of individually tailored doses of individually selected medicines to cure all your ills, except it never really comes to pass, does it? Especially since many GPs can’t even be bothered to check your notes or keep up to date with research regarding your specific, life-long states such as – you know – autism!

Let me explain my bitterness, a bitterness I have explained numerous times to numerous doctors only to be met with a familiar one-size-fits-all approach.

Autistic people are fucked when it comes to regulatory hormonal systems. They just work differently and not necessarily well! Co-morbidity (two conditions that often go together) of autism and sleep disturbance is probably as close to 100% as you can get! As well as the regular associated nervous, repetitive behaviours we’re already looking at a guaranteed messed up management of cortisol so welcome to the world of stress.

It is so nice to be born with a condition that makes me susceptible to all these wonderful things! Of which I expect I’m only untouched by epilepsy, mercifully. I haven’t been diagnosed ADHD but when I had my autism assessment they recommended I also go through the diagnostic channels for that too. I never bothered! Very autistic of me! (Credit: MissLunaRose12 CC-BY-SA 4.0)

Studies have also shown that melatonin production in autistic individuals can be a little messed up and so is GABA regulation.

So what you’ve got is a group of people whose endogenous hormonal regulatory systems for sleep and relaxation are just FUCKED. I’m not even ‘We Lack Disciplining’ this language! If I was a high profile professor giving the most important lecture of my life about this topic I would still use the descriptor ‘FUCKED’. It genuinely is fucked.

People with autistic spectrum conditions or neurodivergent conditions suffer and struggle constantly to maintain the same kind of baseline of relaxation and sleep pattern not because they’re a bunch of uppity, annoying  special snowflakes – but because their bodies innate regulatory mechanisms just do not work like neurotypical peoples’ do. There is a wealth of evidence to support this.

People who sleep badly tend to die younger of conditions like heart disease or stroke. They probably would be likely to self-medicate, drinking or taking drugs to help them sleep, and giving themselves the complications of being a habitual user of those substances. People are literally dying 10-20 years too soon because of a collective failure to recognise that sleep problems are not a moral failing but likely a complex collection of physiological and psychological symptoms.

So how do we deal with these problems? Surely doctors must be tripping over themselves to prevent this health menace akin to smoking?

Based upon World Health Organisation data of ‘disability adjusted life years’ – that’s a measure of how many years of life are lost due to a specific illness or disability, in this case insomnia. Basically areas in red are losing approximately 70-80 years of life per 100,000 people due to insomnia. Insomnia is literally killing people! GLOBALLY! Our attitudes toward sleep and sleep problems need a dramatic shift! (credit: Lokal_Profil CC-BY-SA 2.5)

Nope.

I’ve expressed to every medical professional my issues with sleep, how my disturbed sleep is directly implicated in my prior problems with drugs and alcohol. Do you think they sent me to a sleep clinic or an addiction group?

I use my GP as a last resort (always – I’m autistic, I don’t like using phones, asking for help or having to meet strangers – a doctors surgery is like hell to me!) so by the time my surgery gets a call from me to discuss sleep issues I am already at the end of my tether. Yet they seem to take it as ‘Night 1’, the first disturbance.

Because of my prior addiction issues doctors are hesitant to prescribe me the drugs I know work – the ones that are so effective at working they can immediately halt the dependence on substances I was allegedly ‘addicted’ to. It is almost as if sleep, not addiction, is the problem! But I’m being bitter. I have also discussed the research about autistic people and their sleep-system regulatory hormone issues.

I’m not fit to give prescription advice but in my opinion a healthy supply of low dose melatonin, and controlled access to hypnotic drugs can make a huge difference. I’ve been there and done it so many times. I know I can reset my body clock in three days by using a solid routine, supplementary melatonin and zopiclone – for example.

So surely it’s easy for me to ask my GP for this?

Nuh-uh! Hypnotic drugs, any drugs that act upon the GABA systems – the key relaxey-system in our bodies, is pretty much a no-no for any GP in the UK thanks to NICE guidelines that basically boil down to ‘if people could use it for fun don’t prescribe it ever.’

A lot of biochemistry in this. The ball-and-stick model of Zopiclone, it is a sedative that increases transmission of GABA. GABA is a neurotransmitter (basically a nerve messenger) that binds to its receptors to communicate the need to reduce neuronal excitability. IT LITERALLY CALMS YOUR NERVES! Studies have shown people on the autistic spectrum have GABA systems that are not as effective as the rest of the neurotypical population. So effectively every single neurodiverse person is walking around, tredding on eggshells, feeling nervous all the time because we lack either a) serum levels of an endogenous drug other people have a decent amount of or b) sufficiently high numbers of receptors for the serum neurotransmitter to bind on to and how are we dealing with this issue? With the fact that everyone but autistic people gets to feel naturally relaxed? We deny them medication that can help because people might abuse it. NOT OF IT’S PROPERLY MANAGED THEY WOULDN’T! Oh, it frustrates me so much. Careful management of GABA systems in neurodiverse individuals who choose such a path could significantly improve their quality of life but, uh oh, at one time doctors gave out sedatives like candy and created a problem for themselves so we’d better deny them access to the medications that could improve their quality of life! It’s ridiculous and speaks to a ludicrous, anachronistic relationship with drugs. That’s an article for another time! (Credit: MarinaVladivostok, Public Domain)

Despite my records stating quite unequivocally that I do not have drug seeking behaviour, I have genuine, regular sleep issues that I have a pretty effective system for using these drugs to deal with, doctors are loathe to prescribe them.

Despite me having a condition, autism, that is co-morbid with dysfunction of our natural GABA production and absorption systems! I like to use the metaphor of water. Imagine if a solid 98% of the population NEVER got dehydrated. Their body’s systems just worked, they were efficient in their water processing. Then you, poor little 2%er, turn up at your GP and you’re like “I’m thirsty doc!” and your GP was like “Nah you ain’t, 98% of people aren’t! You’re just here because you’re a water addict!” (side note: we’re literally all water addicts. Definitely do not try quitting that shit cold turkey!) But this person isn’t some liquid junkie. Their body’s water processing systems are broken. You’re denying a person dying of dehydration a prescribed drink because their physiology is minority. It’s fucked! This is what we do with people on the spectrum and GABA agonists.

Back when I had my GP, a doctor who knew me, knew my family – he’d even been my grandfather’s GP – this was not a problem. There was a relationship. Once, this was after he had ‘retired’, so I had been used to arguing with various other GPs who were recommending me yoghurt (something he tutted at) or prescribing me those awful anti-histamines, anyway in the midst of all this he returned, briefly, to fill in for staff shortages and I was lucky enough to get an appointment He practically showered me in the prescriptions like a ticker-tape parade!

He said it was quite clear that I suffer with persistant sleep problems, I’m sensible in my use of the drugs and there’s no reason I shouldn’t be prescribed them. Effectively he said these other doctors were being a little precious about it, which I found quite heartening.

And I think, as a society, we’re precious about it.

Have a sleepy cat! Most of these images have been rants against the medical cartels who want so desperately a one-size-fits-all model of medicine that is just practically and biologically impossible. Sometimes you just need to chill with a sleepy cat. (Credit: Public Domain via Piqsels)

“How do you sleep at night?” We ask of people who do horrible things.

For us sleep is a moral issue, a virtue. Those who sleep well must be happy and comfortable in their own lives, they must be good people.

We bury people in nonsensical suggestions of things that can help. We judge them for their inability. We call them ‘sleepyhead’ or ‘lazybones’ when they drag themselves from what seems like less of a bed and more a temporary coffin, in which they got a light drizzle of sleep compared to your downpour of rest and relaxation.

We see their lethargy and inattention and instead of being concerned for someone struggling we tell them to get their act together. Piling stress upon stress to give them more things to fill their head chock-full of so they can struggle to sleep the very next night.

I can tell you, no matter how much you know about the biology of sleep, by the time you’ve had 2-4 weeks on a reduced sleep you WILL feel like it’s your fault, your failure and something you’re doing wrong. It’s horrible.

dis me (Credit: Giphy)

So what’s the point of this article – there’s hardly any references, it’s basically just one long semi-informative rant.

Look, I’ve just spent a solid 2-3 months having my sleep slowly degrade in quality as I try to wrestle it back. I used every trick in the book, every technique I knew and I couldn’t stop it. As a result my thinking was affected, my work slowed to close to a halt and it upset me because I’ve loved nothing more than my walks in nature, writing articles about cats and feeling like a boss!

Recovery is not as simple as getting a good night’s sleep. I did that last night (MERCIFULLY!) but I still feel exhausted. You accrue what is known as ‘sleep debt’ and the longer your troubles continue the more you owe. It can take weeks to get back into a solid schedule – during which time you will probably be sleeping more. If you have kids, or a job that needs you to wake up early you’re basically screwed. Alarms are your worst enemy when it comes to recovering sleep debt!

I feel a lack of sympathy from people when it comes to sleep. Again, there is a heavy suggestion it is your own fault if you’re not sleeping well but that’s just flat bullshit! We need to be more compassionate about these issues. Not sleeping is as close to a genuine, horror-movie level curse as we get in real life. It’s literal torture (seriously, sleep deprivation is torture, I’ve hallucinated on a lack of sleep before – your brain gets fucking trippy!). It’s no joke, it’s no laughing matter and it’s a complex physiological and psychological issue that is going to require a significant effort to manage.

But we need to change the way we think about it.

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Want to read about more horrible mind-states, conditions and stuff that affects me?

My Life and Learned Helplessness
My Life and the Halo Effect
My Life and Executive Dysfunction
My Life and Autism
My Life and Intolerance to Uncertainty
My Life and Rejection
My Life and Disappointment

Published by Karl Anthony Mercer

Like a dark-chocolate fountain at a weight loss party, Karl Anthony Mercer is an under-utilised river of bittersweetness. When not busy researching or writing about any and all non-fiction topics for 'We Lack Discipline' Karl can often be found walking, staring at wildlife or writing poetry.

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