It’s like one of those bad b grade horror movies where the main character wakes to a voice on the phone rasping “It’s 3am. Do you know where your daughter is?”
Except I’m the daughter, and I know very well where I am. I’m in the living room folding laundry. And yeah, it’s 3am. I wish I could say this was a rare occurrence.
*disclaimer. I wrote parts of this post at 3am, and parts on a day when I’d had two hours sleep. There may be small sections of complete gibberish.*
Maybe it’s more like that moment in the movie when you realise the phone call is coming from inside the house. It’s my own brain who’s the killer behind the curtain.
I’ve always had problems sleeping. There’s been periods in my life where it’s been kind of ok, but with the development of Ankylosing Spondylitis, Fibromyalgia, Restless Legs Syndrome, Persistent Depressive Disorder, Generalised Anxiety Disorder, and Post Traumatic Stress Disorder (am I not a beautiful medical cocktail?!) – I guess you could say things got a little tougher. (I’ll explain what all these things are in a sec)
I know I’m not alone. Sometimes I put out a call on Twitter, with the tongue-in-cheek hashtag #insomniacsanonymous. I get a ton of weary replies within minutes. Zombies, raise your hands. It’s been called a global epidemic and I don’t think that’s hyperbole.
As I said, for me the problem is manifold. Firstly, I’m in pain – and it gets worse when I lay down. One of the many lovely manifestations of Ankylosing Spondylitis (inflammatory arthritis) is it makes you exhausted, and it makes resting too long feel like you’re shoving hot knives into your spine. So most of the time, I find it very difficult to get comfortable in bed.
Fibromyalgia is a central nervous system disorder characterised by a long list of enjoyable symptoms. Along with chronic widespread pain and allodynia (heightened and painful response at certain major pressure points), it includes insomnia, fatigue, joint stiffness, digestive issues, and cognitive dysfunction. It frequently coexists with depression, anxiety, PTSD, and RLS.
The central symptom of fibromyalgia, namely widespread pain, appears to result from neuro-chemical imbalances including activation of inflammatory pathways in the brain which results in abnormalities in pain processing. The brains of fibromyalgia patients show functional and structural differences from those of healthy individuals, but it is unclear whether the brain anomalies cause fibromyalgia symptoms or are the product of an unknown underlying common cause. Some research suggests that these brain anomalies may be the result of childhood stress, or prolonged or severe stress.
Restless Legs Syndrome is an extremely uncomfortable neurological disorder like Fibro. It’s difficult to describe, but it’s like a constant pulling sensation in my calf muscles and pelvis, and I have to keep getting up to move and stretch them out. It makes getting to, and staying, asleep incredibly difficult.
There’s now medical evidence to show that patients with Fibro simply don’t sleep like other people. We rarely manage to achieve sleep stages three and four. This means our actual neurological ability to deal with pain changes dramatically.
Experimental studies have shown that when people are deprived of sleep they quickly get a lower pain threshold and higher levels of certain markers of an inflammation.
…researchers found out that sleep problems constitute a major risk factor for chronic muscular and skeletal complaint.
The connection is really strong. For those who are over 45 years old and admit to frequently or invariably having sleep problems, we see a quintupling of the risk of developing fibromyalgia, as against persons who sleep well.
The new term on the block is ‘semisomnia,’ which is not total lack of sleep, but ongoing low-quality rest that effects our ability to function. It’s caused by heightened stress levels which don’t allow us to sink deep enough into REM sleep. Some reports are linking it to our constant connection to screens. (She types on her screen). I think there’s some merit in this idea. Our lifestyles have changed dramatically in the last few hundred years. We don’t go to bed when it gets dark and get up when it gets light. Maybe our bodies haven’t kept up with technology.
Then there’s depression, anxiety, PTSD. What part does all this play? Generalised Anxiety Disorder means your cognitive worry patterns are pretty damn ingrained, and PTSD, for me, means my “fight or flight mode” is pretty much permanently on. That triggers a slow steady release of adrenaline into my bloodstream, which makes it a liiiitle difficult to relax. I’m trying to sleep, and my brain is yelling “DANGER DANGER.” This doesn’t stop when I finally do fall asleep either, which leads to nightmares, restlessness, and general low quality sleep.
And yes – I’ve tried everything. The psychotherapy and physiotherapy I am doing now is making a massive difference. As far as all the usual sleep hygiene rules, warm milk, drops of lavender – it’s as much use as a duck in a downpour.
How do I continue to function? What effect does it all have, when not only am I not getting the traditional required 8 hour average – any rest I do get is close to useless?
If you’ve ever tried to stay up for 24 hours you’ll know – the less sleep you get, the more distorted your brain becomes. The longer you’re awake, the worse it gets. My mental and physical health spiral very quickly.
I have considered the fact that maybe my Circadian Rhythm is just totally bogus, since sleeping during the day seems to come a heck of a lot easier. Maybe I was meant to be born in the UK and someone somewhere messed up.
I tend to romanticise the idea of working late at night, because… well, it makes it far more palatable that I’m awake by myself at 2.30 writing some ridiculous thing or another, which seems genius at the time but is utter dribble come morning.
(I have just spent the better part of two hours looking for an amazing comic that demonstrates this point perfectly, in which a woman writes something about a refrigerator and a cake and is certain it is the best thing ever, but can I find it?? No. You will just have to trust me.)
The reality is, I don’t do good work then. I would much prefer to have a normal sleep-wake routine that allows me to associate with other people going about their normal sleep-wake routine. The further I move away from that, the more difficult I find it to cope with my depression and anxiety. The more I worry about being able to going back to work fulltime. I may have to accept that I’m not going to be a 9 to 5 person. The internet might be keeping us awake, but it also makes working whenever and wherever a reality.
At the moment, I keep things in check with, as I said, psychotherapy, physiotherapy, and a mixture of medication I’d rather not be taking, but I have accepted as necessary for now. Eventually I hope to manage my illnesses pill-free. In the meantime, I envy those who drop into Stage 4 seconds from hitting the pillow.
Maybe I should just stop inviting Party Cat into the bedroom.