Living with chronic pain: Sleep (or the lack thereof)
Sleep deprivation has been used as a torture method for centuries. But while no evil prison guard is keeping me awake, my body is still unable to sleep — the culprit being chronic pain. What’s worse, poor sleep and chronic pain feed each other, making each worse. Good sleep hygiene can supposedly help break the vicious cycle although I haven’t had any luck with that. The problem is that many of the helpful tips out there are virtually impossible if you’re already in pain — no matter how hard you try.
You know those nights when something keeps you awake, when you toss and turn all night and nothing happens? Imagine going through that every night. It’s not pretty. You end up an erratic being rather than your usual, composed self, but the moment you ret a little, the nightmare is over and you forget the horrors until it happens again. Indeed, you don’t know what you’ve got until it’s gone. I speak from experience when I say that it’s applicable to sleep as well.
Through my battle with chronic pain, this issue has worsened over time, and I’m now at a point where I have to function with only one hour of sleep on average per night. Did I say it’s not pretty? I meant to say it’s seriously ugly. Through my reflections, I hope you’ll be able to understand what going through that all the time feels like. I’m not looking for sympathy but I know there are many others like me out there who might also benefit from being heard and understood. I think it’s necessary to break down stigma and open up for more transparency — towards chronically ill people of all kinds.
If you’re a normal person, you actually spend up to one third of your life asleep. The National Sleep Foundation recommends around seven to nine hours if you’re an adult between 26–64 years of age. I don’t know if I’ve ever slept that much in one sitting, but it sure does sound delightful. It doesn’t mean that everyone needs that much, though. Rumors have it that a bunch of powerful people have been able to manage their lives and even succeed more than otherwise with less than the recommended amount. Richard Branson, head of Virgin, sleeps five to six hours. The current president of the United States, Donald Trump, sleeps three to four hours. And there are many more. I think I read somewhere that Barack Obama and Margaret Thatcher didn’t rely too much on sleep either. “You snooze, you lose!” sounds like their kind of motivation. Ultimately, though, all of us need some sleep, and we need more than just an hour per night.
I’m not the only one who has scraped by without a wink of sleep, you probably have too even if you aren’t a pain patient like me. If you’ve tried it just once in your adult life, you know it sucks. You go to work like a complete zombie the next day, unfocused and grumpy. So what’s it like trying to live a normal life on little to no sleep plus the added pain? I’ll walk you through it.
As a chronic pain patient, eight hours of sleep is a beautiful miracle reserved only for the healthy. It’s something to dream about (pun intended) and something totally unobtainable.
How amazing would you be if you slept more?
All of my siblings need at least eight hours of sleep or they will turn into said zombies. No, I take that back — they turn into vicious creatures so unlike the lovely persons they normally are (sorry guys, you know I’m right). I was never like them in that regard. Never a great sleeper. I always had trouble not only falling asleep but staying asleep too. In fact, I’m such a light sleeper that any disturbance (noise, light, you name it) will immediately wake me up to the point where I won’t be able to go back to dreamland.
It’s become gradually worse as my illnesses have progressed, and right now I fear that I’m actually losing my mind a little bit because of sleep deprivation. I fear noises in the night because it will disturb my peace. I hate my downstairs neighbors because they seem to really enjoy playing loud instruments on Sunday evenings when I desperately need rest, and I can’t help but feel resentment towards my wonderful boyfriend simply because he snores sometimes. Ugh, I even hate birds who chirp away carelessly in the morning! What’s their deal anyway? And then I hate myself for trying to blame others for something that’s not remotely their fault.
I’ve always wondered what would happen if I learned to get enough rest because seeing as I function just fine on four hours per night, what superpowers would I gain if I slept the advised seven to eight? I bet you have too. The things we could do and the individuals we would become, right? But alas, it seems I won’t be getting near a Sleeping Beauty state anytime soon — it actually looks like I’m slowly but steadily going in the other direction. No sleep. At all. Zilch, nada. Time to take up a full-time zombie career instead…
Last time I had a proper night’s sleep (of the usual four hours, mind you) was a couple of months ago. Since then I’ve been able to get maximum an hour of sleep a night, sometimes even less and usually never consistently. It’s not the first time I’ve gone months with virtually no sleep, but until I so desperately need it, I always tend to forget just how important a good night's rest actually is. Thing is, I don’t just turn into that grumpy zombie. That would almost make it easier to endure, especially for the people around me, seeing as they would be able to decipher that something was up. No, instead I turn into a hyper-sensitive, hyper-alert being who pays overt attention to everything — but without registering events properly. I get paranoid, like every sound could be a death threat, and I get very emotional over stupid little things that I would normally be able to process and get over. Sometimes I feel almost catatonic or apathetic, sometimes super elated and frantic. I’ll make strange jokes that no one understands (truth be told, I do that a lot on the regular too), talking to no one in particular or planning stuff that will never happen. It’s like I’m living in a different world, one that only I understand but forget moments after. And it’s so unlike me, who is very much a control freak.
I’ve got OCD tendencies. In fact, I attribute a lot of my perseverance on my ability to control myself and events around me. It has a downside too, though. Everything needs to look or feel the right way or I might break down. To the able-bodied person, that might seem a little erratic. But to other pain patients out there, I’m sure I make a lot of sense. Because we’re unable to manage our state of pain, it feels like we’re losing control over our bodies. And as rational, logical beings, that’s just unacceptable. You need a certain degree of control in your life to function or, in my opinion, you end up losing your sense of self. So controlling other aspects of my life actually contributes to me feeling a little bit better, such as the way my apartment looks, the clothes I wear or what display of emotions I choose to share. Now you can probably see where I’m going with this, right? Sleeping too little changes me and turns me into someone who’s not entirely in control, at least less than I normally am. It. Freaks. Me. Out. How do you get the control back? The doctors I see at the moment have a lot to say about that.
Implementing good sleep hygiene is easier said that done, and your physician should recognize that
I’m currently undergoing treatment at a facility for chronic pain patients, and once I told them about my sleep cycle, they were obviously not surprised. They even told me I should be pretty happy about being able to get around four hours of sleep, as I did previously. To be honest, I was flabbergasted at that message. Seriously? Am I a successful chronic pain patient because I get four hours of sleep? What a relief, I said, my tone thick with irony. Can I get a medal? Now that I get only one hour they’re sorry to inform me that they can’t help — but that I can help myself by implementing good sleep hygiene.
Sleep hygiene is a fancy way to address your nightly habits and sleep rituals. It’s both the physical condition of the room you sleep in and the behavior during day and night that can lead to better or worse sleep. Going to bed at the same time helps, for example, while daytime naps do not attribute positively. Exercise regularly, drink water, limit alcohol intake, air out the room, get some sun, stay calm, limit screen time. There are so many things you should and so many of them that are virtually impossible when you’re not get any sleep to begin with, let alone functioning properly because of pain.
Meditation and mindfulness are also on that list. They will help me accept the things I cannot change, my doctors told me, i.e. not sleeping and being in a permanent state of pain. But when I’m not sleeping, I’m not myself, and it means I can’t make the same rational, conscious decisions. I can’t focus on meditating and with emotions flaring up more than usually, I can’t accept difficult things in my life either. So I turned to the other helpful tips they gave me.
Turns out that there are many things out there that might help me sleep better, and if not that, then at least help me regain some control. One of those things is reducing blue light. Let me first explain a few things so you understand why that’s a good idea.
The circadian rhythm is a biological process that all people (and many other living things) experience. The average length for most people is around 24 hours, so if you find yourself feeling sleepy or energetic at the same time every day, your circadian rhythm is to thank for that. Your body then produces the hormone melatonin to regulate that natural sleep/wake cycle — the circadian rhythm or the body’s biological clock. If you want to mess with the melatonin levels in your internal clock, simply expose yourself to more light. If you really want to mess with it, do so with blue light. Blue light is emitted by electrics such as your laptop or your smartphone and if you’re anything like me, you rarely put either away. I even use my phone as an alarm clock, and that’s a big no-no because it means I check it during the night as well to assess the time, I set the alarm as the last thing before bed and wake up to that screen in the morning too. Just like looking at it before bedtime is harmful, so holds true if you do it in the middle of the night.
When you expose yourself to blue light, you suppress the secretion of melatonin and thereby mess up your biological clock, the circadian rhythm. The result being that you can’t fall asleep at night. I’ve definitely fallen victim to this. As I mentioned, I rarely put my electronic babies away (I’m a Millennial, give me a break). It’s something that has a significant impact on good sleep hygiene and it’s not that hard to change. Blue light isn’t just mildly disruptive, it suppresses melatonin twice as much as other types of light, shifting the circadian rhythms twice as much. Meaning that where you would normally fall asleep naturally at, say, 10 PM, some types of light pushes it to 1.5 hours later, but with blue light that’s a whopping 3 hours! As Harvard Health puts it: “blue light has a dark side”.
As a consequence, I got myself a Kindle. It allows me to read at night without having to turn on the light or lift a heavy book (also a thing my pain condition also inhibits me from doing). I do still need a good ol’ alarm clock to replace my phone, however, and I need to stop watching fetching shows on Netflix before bedtime. The alarm clock is easy, quitting Netflix isn’t. Watching a thrilling episode of something I enjoy brings me a lot of peace, something I’m not very prone to experience otherwise. We already established that I’m a control freak, and I naturally spend a lot of time worrying about loss of control as a consequence. Spending some quality time with Netflix and my brain shut off is soothing and helps me relax, almost like meditating, both physically and mentally. I know I have to give it up eventually, and I’m preparing myself for it. For now, I try to limit the screen time to a few hours before bedtime.
So taking the phone away and for the most part my laptop is one thing I changed. I will definitely also look into other stuff that might help me because so far, reducing blue light isn’t helping. I honestly have no clue how long it takes for one’s circadian rhythm to get back to something normal, I just know I’m not there yet. If you love your laptop a little too much yourself to give it up at night, I recommend downloading an app to adjust the harmful blue screen light — I like flux myself, which you can get here.
What’s left when you’ve tried all the tricks in the book? Panic? Or… acceptance?
I’ve tried various oils, smells, music, apps, books, and whatnot — all to no avail. I’ve even tried to kickstart myself with a small dosage of melatonin, but never to the effect I hope for — sleep and I just aren’t great pals at the moment. Truth is there probably are a thousand things I could do to change things for the better just a little bit. And a little bit might just be enough to tip me over into a more stable rhythm. Another truth is that I don’t have the energy to change my habits because I use up all my time trying to be a normal-functioning person with a not so normal-functioning body. I’m sorry to disappoint you If you think changing a routine is about willpower and solely that. If it was only about willpower, I promise that a lot of chronic pain patients would have already done it, but alas — we’re not that lucky. The few routines we have are extremely precious to us, at least they are to me, because they offer comfort in an otherwise chaotic existence.
I’m not alone in experiencing sleeplessness. Countless studies and articles I’ve read in the past seven to eight years have told me that people who experience pain are also more likely to experience poor sleep. Pain triggers poor sleep, and it becomes a vicious cycle where it worsens night after night. Pain not only makes it harder to fall asleep but triggers awakenings too. Eventually, it stresses the person out and then on top of pain and poor sleep, you’ve got stress as well. It affects everything you do, as I’ve described above. Social relations, mood, general happiness… I actually read that the National Sleep Foundation (using American research, which I assume can be translated to other nations) stated that people with pain “feel less control over their sleep, worry more about lack of sleep affecting their health and exhibit greater sleep sensitivity. They’re more likely than others to say environmental factors make it more difficult for them to get a good night’s sleep.
Both the National Sleep Foundation and Harvard Health states that a good ‘sleep hygiene’ can make all the difference. But as I said before, it’s easier said than done. It’s a chicken and egg situation, really. If you’re in pain, you can’t sleep. If you can’t sleep, you’ll be in more pain. On and on it goes, the vicious circle.
I think my biggest problem with not being able to sleep is that I feel like a bad human for not being able to a very basic human thing. Like I’m less of a person because of that. It actually makes me try harder at other things (hence the control issues) because I don’t want to fail in other areas as well. Trying to compensate like that is beyond tough. So is trying to alter your routines.
I can’t exercise because I’m in too much pain. Sleep remedies don’t work for me. So while my doctor’s advice — along with Harvard Health and any other medical info page I stumble upon — is solid and well-meaning, it just won’t cut it for me. I actually think advice like that makes us, the pain patients, feel even worse because it’s another failure. An authority tells you how it should be, and you can’t even follow a simple order. It sucks.
We desperately want to be normal, so when others notice or point out the cracks in our surface, it frustrates us.
I’m not pulling for a sympathy vote, I just want you to know that there are many people out there who still have to get up, go to work, take care of their kids, shop for groceries, etc. etc. — all without proper rest. Know that we’re doing our very best with limited resources, and we never intend to let you down, cancel appointments with you or give up. Maybe we’re just dead tired and don’t want to bother you with our strange zombie selves while we try to get some rest. I think I speak for all of us when I say we don’t mean to flake on you like that on purpose.
It’s been several months for me this time around without proper sleep. I’ve tried everything I could to implement good sleep hygiene and relax, all to no avail. Funnily, there is something that’s working for me. My frustration has peaked, so now I’m left with no other option but accepting my fate for the time being. I still can’t sleep, but here’s to hoping that it’s the first step in the right direction.
For the other folks out there in the same boat as me — you’re not alone. Every day is a battle, and I know you’re fighting very hard to stay composed. Share this with your close ones if you think they could use an explanation for why you’re so tired.
What’s it like being a ‘spoonie’? What does ‘spoonie’ even mean? Check out my other article here for more info on what it’s like dealing with chronic pain.
