This year [2020] I hit 52 years old and learned how to rest. Seriously. Half a century of life and three decades of unexplained tiredness, that's how long it's taken for someone official in the NHS to find a viable way that fits in with my capabilities to teach me how my body ought to be functioning and how it ought to repair itself, and what I can do to help that process – much of which was not only revelatory, but quite shocking to get my head around (particularly as whilst I believe in science, I’m not that keen on knowing the details).
This summer, because of Covid, my local ME/CFS NHS Service moved their in-person 10 week (2 hours a week) group sessions course (usually held at the other end of the County) online. The Unit’s Clinical Lead Lynsey Woodman (an Occupational Therapist) who has been visiting me at home for about 2 years, suggested I have a go at joining in. So, ever up for a challenge, I did.
What was the major takeaway from this (frankly increasingly exhausting ) 10 week Zoom commitment for me? Rest (which I find somewhat ironic given how unbelievably knackered I felt as it went on). More specifically, recuperative rest. I learned how to rest. And on the way, much of what I assumed about healthy bodies work turned out to be, well, less than accurate. As Lynsey told us, humans are born into these complicated organisms, and there’s no manual, we have to work it out as we go along.
You may already know all about recuperative rest, or may not find it useful, but just in case – let’s talk about rest and my wholly smashed preconceptions about what makes for useful rest – given we’re all spending much of our time lying down (and I spend much of my time sleeping), let’s start with sleep and rest, then we’ll go onto rest whilst awake:
SLEEP ISN'T RESTFUL
This year I learned: that sleep may or may not be recuperative, but it certainly isn't restful - at least for one's brain, and potentially for one's body if you have restless legs or muscles that tense during sleep. There’s broadly two types of people with sleep troubles – there’s the ‘tired but wired who can’t sleep’, and there’s the ‘exhausted and can’t stay awake’, and sometimes that flips from one to the other.
I’m one of the ‘can’t stay awake’-ers - For decades I’ve been using sleep as a refuge from the woes and boredoms of my life in the belief that it’s helpful, or, at the very least not harmful. Turns out, I’ve been wrong for a very long time, not only that, but I've found that my anti-depressant SSRI (taken because mood and pain feed off each other so it helps the painkillers work better apparently) makes my sleep even less restful due to the hallucinatorily vivid dreams I get, which spill over into my waking hours.
It turns out that the human body is rather more structured in its habits than I’d previously imagined. Our bodies and minds need sleep to function, it's built in downtime (tied to the rhythm of the day and the night, the sun and the moon) for various chemical reactions to spark to repair the wear and tear on our bodies of the day and for the brain to process memories and ideas. When we sleep, how long we sleep for (and arguably how we think about sleep) can all change those chemical reactions and processes. On the bright side though, because our bodies have inbuilt flexibility and the capacity to continue to learn throughout our entire lifetimes, if we find we are mistaken in our habits, we can change, we can deliberately influence our bodies (for the better or worse) by the habits we choose (or are forced into).
All of which sounds great! Our bodies self heal, I change my habits, I can fix myself? Sounds legit! Not. Because quite frankly it feels like I’m being told if I tried a bit harder I wouldn’t be ill, which makes me cross and leads me to be thinking ‘hmmm has she just essentially told me I’m a feeble hypochondriac who can think myself well?’ So that’s the question I asked – politely. Nope, Lynsey wasn’t telling me I had made myself unwell, was keeping myself unwell nor that I can fix myself and hard work and suggesting that gungho British Bulldog fighting Blitz spirit would get me through. She was telling me that even as debilitated as I am, I can exercise the little control I do have, to help my body and mind edge closer to where it would be operating if I didn’t have ME/CFS, a tiny manageable bit at a time.
Forgive me for digressing – but this idea that I could take control and nudge myself towards health in ways that didn’t involve meds and side effects was quite beguiling. It also made me think of the principle of Marginal Gains. British Cycling has won loads of medals at the Olympics and various Grand Tours by concentrating on marginal gains – making tiny changes one at a time that eventually (and we’re talking years here), gave them the edge over their competitors. When you are at rock bottom, even a tiny amount of progress, that normal healthy people wouldn’t even notice, that took blood sweat and tears for months, can be a life changer. And, if they’re tiny changes that I make one at a time, in my own time, that don’t risk a relapse? Yeah, I’m up for having a go.
Speaking personally, I’ve always slept a lot, even before I was unwell, and I have always taken refuge in sleep – if life is going badly, say I’m in pain, emotionally or physically, or it’s cold and miserable outside or I feel sad, I sleep so I don’t have to deal with it. I am also pretty lackadaisical about when I ‘go to bed’ and when I ‘get up’ (partly because I don’t get to do things I want to do, never mind things I ought to be doing), so it feels like a harmless rebellion to choose my own waking hours. I also find I have cravings for sugar if I’ve overdone it, and feel sick and leaden, and a nice long siesta sorts that out for me, which then of course means I feel I need more of a ‘day’ later on and suddenly I’m asleep in the day and awake at night and it becomes tricky to live what life I do have because it’s the opposite to carers/family and so on. So, I think it’s fair to say that whilst I’ve learned about sleep hygiene in the past (initially on the CBT arm of the PACE Trial back in 2008 when I was moderately unwell) and understand I ought to do it, I never really understood how much poor choices about sleep affect the body (healthy or unwell). I also have always associated sleep with rest, so it was a bit of a shock this summer to find that the body and mind are hives of activity and that actual recuperative rest is needed on top of sleep if I want to stabilise my health and possibly even improve a bit.
So, with a sense of foreboding and incompetence (on my side and if you’ve ever met me, on yours as well), let’s talk about the science of sleep, because this underpins the ideas Lynsey suggested on the course to try to improve the quality of sleep (and therefore the quality of being awake also). As I said before, I believe in science, I’m just not that interested in the details, so forgive me, every single mistake in this bit is my own…
WHAT IS SLEEP FOR?
Well, as already mentioned above, it’s not really for resting! Some of the functions of sleep are:
· Energy preservation and replenishment
· Toxin clearance
· Rebuilding metabolic pathways
· Memory consolidation
· Tissue repair
· Protection of the body and mind
· Processing information.
See! Not remotely restful AT ALL!!!! That short list (there’s more but those seemed most important to me) makes me tired just reading it. Years ago on the PACE Trial (2008) I remember them talking about unrefreshing sleep being a symptom of CFS (they refused to use ME as a label) and I never quite understood what they meant. Because for me, sleep doesn’t stop me being unwell, but with enough sleep that heavy carapace of fluffy leaden clouds feeling that I’m going to pass out if I don’t get some sleep, that goes. For a time. So in that sense it’s refreshing, I need it, it helps me want to continue, but in the context of the above list? Yeah, not refreshing at all.
CLOCKWORK RHYTHM OF LIFE
Our bodies, in an analogy that’s a bit of a reach, work like clockwork. There’s biological rhythms throughout the 24 hours that spark chemicals that course through our bodies to switch various systems on and off. The biological clock that controls sleep is the Hypothalmus. It regulates the 24 hour circadian rhythm, which controls, amongst other things:
· When we sleep and wake
· Feelings of tiredness and alertness
· Intellectual performance
· Memory
· Appetite
· Body temperature
· Activation of the immune system
· Hormone production and control.
So, what I think that tells me is, if I can improve my quality of sleep I may not have quite so much trouble with my daytime existence - I may be able to reduce the hot flushes or freezing jitters, not have sugar cravings, stop looking at my carer like they are aliens for asking me the simple question ‘would you like a cup of tea?’ and find being regularly awake in the day and asleep at night easier to sustain. Hmmm, I wonder if that’s true? And if it is true - how much effort and energy is it going to take, and for how long, and will I ever be able to feel I can rely on it (one of the worst things for me about ME/CFS is having learned I can’t rely on my own body and mind)?
DISRUPTED DAILY RHYTHMS
Anyway, back to the clock – the clock also resets the daily cues and signals for the body’s operation, and if those are lost or disrupted, then the daily rhythms slip and the cues reverse (I think this is what happens when I sleep in the day then am awake all night, it takes months to get back to awake in the day and asleep at night, but literally one or two siestas for it to snap back the wrong way around). And when the cues reverse? One ends up with:
- Poor quality sleep
· More daily fatigue
· Poor concentration
· Low mood
· Feeling unwell
· Headaches
· Muscle aches
· Reduced appetite
· Irregular bowel movement
In addition, apparently some studies have shown that disruptive sleep patterns lead to the body failing to truly relax muscles and to a higher pain response, to poor vagal nerve tone, over arousal responses to stress, pain on waking up and low blood pressure. Not only that, but worrying/anxiety impacts on sleep, as does the menopause – our homeostatic balance (progesterone calms and oestrogen stimulates, and adrenalin balances them) is disrupted which leads, for example, to nightsweats, amongst other equally charming effects. We worry that we sleep too much or not enough, we tell ourselves stories about sleep, we have unrealistic expectations, exaggerations, catastrophising, fortune telling, fatalism and hopelessness, and all that worrying? Takes a lot more energy than being realistic about what is happening.
NOW FOR THE HARD BIT…
All that science above, great! Finding viable ways to help my body move towards more healthy sleep, well that’s quite hard. As it turns out, I already knew a bit about healthy sleep, I think we all do - yeah, sorry, I’ve avoided it so far, but now I’m going to write the dreaded words – Sleep Hygiene. I’ve heard of it, they taught me about it on the PACE Trial, Dr Worthley of The ME Trust told me about it, Lynsey has been telling me about it for nearly 2 years. But it’s only after hearing Lynsey talk about how my body and mind works that the suggestions of Sleep Hygiene began to make a bit more sense. You can lead a horse to water and all that…
IF YOU SLEEP TOO MUCH
Apparently, your body gets used to it, you feel an increased need for it, it leads to a loss of the ability to concentrate, reduces enjoyment and does lead to a deconditioning of one’s muscles and nervous system. Yes. I know. I hate writing that, it makes me cross, because, my mind wails, I can’t help it, my body just won’t stay awake! But science is a thing. So…
How to change that, how to slowly get to a place where sleep is mostly at night and one is awake all day? The first steps are to set up a routine, to set up habits to prepare the mind for sleep and wakefulness at regular times, to work towards that incrementally. Specifically for oversleepers – see if you can tolerate daylight, have more light at night, limit siestas to half an hour (longer than that and we go into a different level of sleep. From personal experience, waking up half an hour into a siesta is horribly painful, but persevering is worth it), try and have specific rest/relaxation times throughout the day instead of siestas.
IF YOU SLEEP TOO LITTLE
Apparently, your body also gets used to it, there’s no need to panic, there’s other ways to replenish energy and the body does catch up on deep sleep. It also leads to a loss of the ability to concentrate, reduces enjoyment and leads to a deconditioning of muscles and the nervous system. And yes, I hate writing that too, because those of us who suffer from it, our minds are wailing - but I can’t help it, my body just won’t go to sleep. Again I say, but science is a thing. So…
How to change that, how to slowly get to a place where sleep is mostly at night and one is awake all day not all night? The first steps are, yeah you guessed it, to set up a routine, to set up habits to get a consistent block of sleep in one go, to prepare the mind for sleep at regular times, to work towards that incrementally. Specifically for undersleepers, set the alarm to wake you at a regular hour and ‘get up’ at that regular hour, see if you can tolerate daylight, reduce lie-ins, and the same advice for siestas as with oversleepers and see if amber tinted glasses at night help.
I’ve tried to distinguish between the over and under sleepers in terms of ideas
on how to regulate sleep, but actually whilst the problem is different, the
solutions are pretty similar. If you’ve
never been taught about sleep hygiene, then the basics are – your ultimate aim
is to sleep around 8-9 hours a night, falling asleep and waking up at more or
less the same time every day, have routines that prepare/signal your mind and body
for sleep and for your sleeping area to be peaceful and not too hot or too
cold. The NHS (England) website has some standard sleep hygiene advice that you
can adapt to your own circumstances, hopefully you can get someone to find out
about it for you if you can’t do that for yourself. It’s easy to say, oh that’s
what you are aiming for - it’s getting there that’s the hard bit. It takes a
step at a time, a great deal of perseverance and in my experience, a lot of one
step forwards, two steps back!
EAT YOUR ELEPHANT A BITE AT A TIME!
I think it’s appropriate at this point to say that it’s important to PICK ONE TINY THING TO CHANGE. And change ONLY that thing, nothing else, and take it slowly. After all, if we’re bedbound and beyond exhausted, one thing we do have in abundance is time. Just change one thing, keep at it for at least a month, keep going and eventually, it’ll stick. It takes weeks if not months to see any changes and possibly years for a change to stick. This is a marathon not a sprint!
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All Parts of Article:
Background HERE
Part 2 HERE
Part 3 HERE
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