All About Rest - Part 3 - Vagal Nerve Tone and Mental Anxiety (Article written for The 25% ME Group)

Part 3 - All About Rest - Vagal Nerve Tone and Mental Anxiety

So, we’ve covered sleep, breathing and physical body positions – what about our mental positions?

Well, sticking with the physical for a little longer -

IMPROVING VAGAL NERVE TONE

I’d never heard of the vagal nerve (mentioned above briefly in the context of sleep) before I met Lynsey, but it turns out it runs down from our heads to beyond our stomachs and is enormously important in regulating breathing, our heart rates, eating and swallowing as well as our immune system. In addition, as I found out from a recent TV programme where experts helped various previously undiagnosable Americans with their health problems, damage to the vagal nerve can prevent proper digestion and absorption of nutrients.

The Vagal Nerve is attached to our vocal chords. So, if we hum or sing or chant or gargle, the vagal nerve is stimulated, and ‘exercised’. So yes, I have started humming. Very quietly and very gently. When I wake up.  Other stimulants for the Vagal Nerve are to laugh (who doesn’t enjoy that from time to time?) and also to breathe deeply (back to diaphragmatic breathing). I’ve also started telling myself Knock Knock jokes that make me smile, and I’m working on my breathing.

NUTRITION IN MODERATION

Crucially, at the head end of the body, the Vagal Nerve controls the Parasympathetic Nervous System, that is, our moods - which includes happiness, depression and anxiety. And, as the Nerve at the other end regulates digestion and the gut, there’s a link between them – the body is a whole organism with different parts that interlink and influence each other.

We are what we eat! I’m pretty confident in saying I struggle with my addiction to sugar. Years ago I removed it from my diet entirely, these days I keep trying and failing to do so. I have managed to stop buying (and eating) whole tubs of Haagen Daas icecream, and I’m working towards reducing sugars down to ‘natural’ ones like honey and fruit and using sugar as a condiment rather than an end in itself. Sugar is an inflammatory, it has no nutritional value and disrupts a variety of hormones that my body uses to regulate all manner of interconnected systems. The hard question for me to face is, if I know my body is struggling, why am I putting things into it that make it struggle more?

The NHS (England) website has a great deal of information on what a ‘healthy’ diet looks like – it has fresh vegetables with plant or meat based protein balanced with some fat and some carbohydrate. The trouble for people with Severe ME/CFS is not only getting help to prepare nutritious food, but also in actually chewing/swallowing and digesting it. Many of us have severe dietary intolerances and difficulties eating and swallowing, never mind actually digesting food. Doing what we can to build a healthy gut flora and improve vagal tone may in the long term help, and I am acutely aware how flippant it sounds to suggest that a daily session of gentle ‘humming’ is going to change that.

What I would say is that one of the most difficult things about being chronically unwell without any answers is the feeling of being in limbo and there being no control, that hopeless feeling that there’s nothing we can do. If in healthy people, their bodily systems can be improved by changes that are small for them (humming is nothing to a healthy person, to one of us it may be something we can only do occasionally for a very very short time), then I would ask, why can’t ours?

My body still (eventually) heals itself from a papercut, so some of it still works the same way that normal healthy people’s bodies do, so, I ask myself, can I take some control with these small changes and, without hurting myself, support my body? And, to bring us back to the mind, how does having some control and purpose in my life, to support my mind and body, make me feel?

STORIES WE TELL OURSELVES

Lynsey on the Zoom course talked about the mind and mental issues in a way that was new to me: the brain is a muscle inside a box made of bone. It cannot see, hear, taste, touch or feel. It is totally dependent on the signals it gets from outside itself, those little chemicals sparking up and down our neural pathways, the molecules carried in our bodily fluids.  But more than that, it’s what we as self aware entities tell the brain to DO with all that information flowing in and out of the bone box affects the brain’s ongoing response.

For example, a child falls and skins their knee, we all know that if we rush up with a look of concern the child will feel the shock as something bad, and be concerned and start to cry. If we rush up and say Oh my goodness has your leg fallen off? That’s so ridiculous they’ll be distracted, and laugh because the ‘injury’ of the graze is minor in comparison to the magnitude of a missing leg, that the graze becomes minor.

The graze itself hasn’t changed – what’s changed is the perception of the child based on what they can see, hear and sense about how the external world views that graze. Because what the brain is interested in is pretty binary – is it safe or is it dangerous? Because that’s the brain’s purpose, to keep the organism that is the ‘meat sack’ that is the body safe and well, and if it gets signals that there’s danger, then it will send commands to fix what it can. As a self healing entity our bodies are pretty impressive, it can heal skin, bone, muscle, tendon, repel invaders such as unwelcome bacteria and viruses etc.

But those same systems can react when they shouldn’t and they can fail to switch off. They can get ‘stuck’ in ‘danger mode’.  What was new to me, was that I can consciously be aware of how I think or behave and that can, in certain circumstances, contribute to the brain’s decision whether it’s safe or in danger.

At first I have to admit this sounded a bit ‘woo woo’ and frankly, ridiculous. But when no other help is on offer, it seems like a good idea to listen to see what’s there.

REASSURING THE BRAIN ON PAIN

So, going back to the diaphragmatic breathing (above) when Lynsey first asked me to look at the pain in my body, just notice it, not do anything about it, I was horrified. ‘I’m not doing that! I spend most of my time working really hard to ignore any pain because it hurts and I’m scared it’ll get worse and not stop’. ‘How’s that working for you?’, was her response. My honest answer? Not well. (I’m pretty sure that my working so hard to ignore pain is one of the reasons I’ve got minor urinary incontinence, because at the end of the day, the system the body uses to tell my brain the bladder is full, well, that’s pain, pain as a ‘gift’, pain that is going to start getting stronger as the bladder becomes overfull as a warning signal. Except me, I’m refusing to listen to any pain, helpful or otherwise. Sigh. Unintended consequences…)

Lynsey’s point was, that if we notice pain, especially when it’s appropriate (like my bladder) or not a cause for alarm, and we tell the brain it’s safe, the brain isn’t going to be ramping up the response, and screaming emergency. If we ignore the pain (yeah that’s me) the brain’s natural response is to send more urgent signals that something needs to be done. Over time, the brain gets into a pattern of ramping up signals and then the nerves that carry the signals become oversensitised to pain, and the body ends up feeling and experiencing much more pain: is the theory.

And I have to say, I do feel pain more strongly than I did when I was well and the more severe my ME/CFS the more extreme my reaction to what ought to be minor pain, and as my Severe ME/CFS has reduced in severity to far more moderately Severe, my reaction to pain has reduced too. So maybe there’s something in this, maybe the body does get overstimulated and stuck in pathways, and maybe I can help reduce that by my attitudes to myself, to how kind I am being to myself.

In addition, I’ve found that painkillers don’t work on pain that isn’t really there (as in there’s no actual site of injury that needs healing or action - the pain exists - in that it’s a signal that has gone to the brain, that the brain has received (or thought it did) and needs to decide what action to take - but it’s not actually needing a response, the signal exists (or is recorded as existing) but there’s no actual danger to my body, like the phantom pain an amputee gets. So yes, the pain is all in my head, but at the same time, it genuinely exists there, the brain has those signals, the brain as a muscle inside a bone box has no imagination, it is binary in its responses to signals, either they need action, or they don’t). So, I listened to what Lynsey had to say and I’ve spent quite a lot of time considering it. And from my initial somewhat dismissive and derisive reaction, I’ve changed; I’m wondering whether it is possible to help my brain decide to take action or not.

The idea is that we can consciously help our brains to decide what action to take in response to the signals that arrive in the bone box that say ‘pain’. We can help our brain to decide that it’s safe and no action is needed, or we can help our brain to decide that it’s dangerous and action is required.

I admit it feels a bit silly, but we help our brains by saying to ourselves ‘I’m safe’ when appropriate.

So for example with the breathing above, if my shin suddenly has a sharp stabby pain, I can have a look at it physically, and mentally and say to my brain, ‘it’s ok, I’m safe’. (unless of course you’re bleeding in which case yeah the brain needs to send the chemicals to stop the blood and knit it altogether, but I’m talking here about that pain we get without an obvious acute ie immediate cause).  Lynsey calls this the ‘danger in me, safety in me’. 

For me, that suggests we have a choice, when the body gives signals, and the brain receives them, is our conscious mind backing up reality and supporting our body and mind? Or is it off with the fairies in fantasy land undermining our body and mind?

So the killer question – How often do we indulge ourselves in a story that says we aren’t safe? We visit Dr Google, we lather ourselves into an anxiety of what ifs: what if I’m terminally unwell?, what if it’s some exotic disease that’s going to injure me even more? And tell ourselves we can’t do anything about it, that the illness has it in for us, is victimising us? How often do we find ourselves foundering in stories that have lost touch with the here and now?

I’m not saying that any of the above stories are necessarily harmful, after all it is sensible to see if a new sensation is a problem that needs dealing with. But that it becomes harmful when we chose to tell ourselves it’s a problem when in reality it’s not (a grazed knee) or to dwell on both the actual problems as well as the made up ones (grazed knee) to a greater extent than the (few) good things in our lives. Our bodies and minds are designed to operate in a balanced way. If we deliberately skew that balance, we aren’t supporting ourselves, we aren’t being kind to ourselves, we are sabotaging our own selves.

And, what would happen if we said to ourselves, yeah my shin hurts, maybe if I do some nose breathing, or relax with pillows or tilt in space to give my body and mind a break, and tell my brain I’m safe – would those pains that aren’t touched by painkillers, with practice and over time, begin to hurt less? Would our pain responses be less volatile? What would happen if we treated ourselves more kindly? What if we distracted ourselves with stories about things in our lives that are going well? Things that made us laugh, or pleased us – a brilliant blue sky against fresh summer leaves seen in a postcard, the memory of a song or a person, our friends and family having a success in their lives? Think of 3 positive things? (To be fair, at my worst I couldn’t think of positive things, the loss and grief of the other me, the one before this happened was too sharp. But over the years, that loss and grief hasn’t gone away, it’s just that there’s a duller edge to it, and thinking about the future, even in 5mins time is a lot easier, and so is thinking of positive things).

What would happen if we treated ourselves the way we would a child with a grazed knee? Offer comfort and distraction? Be kinder to ourselves, suspend our criticism and resentment of our bodies failures; even barely working as they are, they are actually amazing organisms, doing their best in challenging circumstances.

It’s worth noting here that obviously any new unexplained or increased symptoms need to be checked out with your doctor, it’s possible to be unwell with more than one thing at once including new things. This technique is about dealing with the symptoms we know exist, the pain we feel, physical, mental or emotional, that the medications don’t touch).

CHEMICALS OF ANXIETY

It’s important that when I talk about Anxiety, I’m not talking about full on genetically influenced or chemical imbalances debilitating Anxiety as a disease. People with that sort of Anxiety need to be properly diagnosed and helped by medical professionals.

I’m talking about anxiety as a natural part of living life, part of the brain seeking information as to whether it’s safe or there’s actual danger on the horizon, that a bit of action may avoid – the sort that keeps Meerkat herds have one member on a dunghill as lookout, and that makes the Government teach kids about road safety and looking both ways.

I’m talking about how when we are chronically unwell, we are naturally anxious, because our bodies and minds become unreliable, we are not able to do what others expect of us, what we expect of ourselves, never mind the basic functions of existence that healthy people take for granted, such as eating, personal care, getting out of bed, sitting up, reading, listening or even tolerating enough light to see by. That’s normal. Totally and utterly normal.

However the difficulty comes when that experience of such a traumatic change in existence that long term untreatable illness brings, leads us to react more strongly to smaller things that wouldn’t have bothered us before we were unwell.

The body is supposed to react to stress, it has mechanisms to do so, the ‘fight or flight’ responses. But these are supposed to be fleeting in response to actual danger. The body’s reaction to stress impacts our breathing, stress hormones travel in the blood and the blood goes everywhere so multiple systems are impacted, including the autonomic nervous systems. When that’s a temporary response, that’s fine, the body deals with the danger then goes back to normal – that natural seesaw of balance in the body, that’s what happens with healthy people.

But if we are constantly under stress that means those chemicals of anxiety are constantly sparking away, telling our muscle in the bone box that is our brain that there’s danger, then, over time, our brain changes the way it responds to danger, it gets stuck permanently ‘on’ and our bodies are adversely affected with poor immunity, digestive changes, muscle tension, hormonal changes. In effect our bodies are constantly in a state of permanent readiness – which isn’t sustainable and our bodies can’t repair the damage from the state as quickly as it occurs.

Whilst on one level I knew about stress and fight or flight and how damaging it can be, this year I learned that Homeostatis, (that is, the steady internal systems that keep all living bodies operating in a stable way) is a see-saw of natural balance. Throughout the day and night as our bodies go through the set habits and patterns controlled by the Hypothalmus, as well as the various events and activities (mental and physical) of the day, the see-saw of homeostatis tips gently one way then another seeking to balance what’s happening.

In people with chronic illness, this see-saw appears to be stuck, either up or down, or like the Grand Old Duke of York, partway, neither up nor down, and by making those ‘marginal gains’ to get our ‘stuck’ systems – whether practising sleep hygiene, nose breathing, reducing the pull of gravity on our bodies or giving our minds a break – each of those tiny changes in our habits, towards a more ‘healthy’ life, it increases the chance that our Homeostatis becomes unstuck, and our bodies work better.

Again, the stories we tell ourselves affect how stressed we are. We’ve all watched a scary film (or in my case Dr Who) and our anxiety has ramped up, we KNOW it’s fiction, and yet there’s a delicious thrill to be had from being apprehensive about what happens next. That’s normal, that’s natural, that’s part of why human civilisation has changed the world, we’re curious, we seek thrills, we seek what is different.

But if we tell ourselves stories that keep that anticipation going to the extent that it alters our body’s chemistry – that’s harmful, no? If I lie in bed worrying that there’s some obscure test that’s not been done, or a normal test that’s been done badly, and I’m ill with something that can be fixed (I think we’ve all done it) just once around the time of the results, that’s healthy. If I spend the next 3 years in that state of mind? Well, my body is in for a right hammering because the same chemicals that gave me the delicious thrill of whether Dr Who would manage to run away safely, they are going to be ever present, and start to damage my systems.

Again a killer question – how to break that cycle? How to stop myself from catastrophising, fantasising about who might come to my funeral (we’ve all lost touch with friends and family through long illness, I doubt mine would need more than 5 chairs), whatif-ing until there’s dinosaurs wandering around outside about whether the carer put the plates in the dishwasher right, if they used the worktop cleaning cloth to do the washing up, did they leave the strawberries out of the fridge, why can’t they find what’s wrong with me, why can’t they fix it, it goes on and on and on and on. And it’s exhausting. It’s exhausting for me, it’s exhausting for my family and friends, and for anyone online that happens to see me, yet again, metaphorically shaking my fist at some unknown assailant.

BREATHING TO QUIET THE MIND

How to distract myself? It’s all very well to distract yourself by reading or an audiobook, or a tv programme or music, or imagining a place you’ve been or a time you were happy, but sometimes, I just don’t have the energy to do that. I just can’t. So the technique of just listening to myself breathe, not think of anything else, if my mind squirrels away, to bring it back to breathing? That’s been a genuine Godsend to me.  All that whatiff-ing and catastrophising has, over time, reduced the more I’ve practised concentrating on breathing. I am genuinely less anxious (though 2 years of betablockers is helping) and also I’ve found giving my brain that circuit breaker, that time away from all those circular thoughts and worries, it really does help.

TLDR: TOO LONG, DIDN’T READ – THE SHORT VERSION

So in essence - what did I REALLY learn about recuperative rest this year?

Well, that I need more rest, it needs to happen when I am awake, not when I’m asleep, that sleep is for other purposes.

I can get recuperative or restorative rest by

·        breathing through my nose, 

·        escaping gravity to the best of my ability,

·        giving my brain a break by listening to my breathing instead of my circling thoughts, and that

·        I can influence and support my body and mind by choosing the messages I give my brain, by confirming the actuality safety rather than encouraging anxiety and the fake news of emergency to it. 

Being brutally honest, I don’t really know why my symptoms have reduced and I’ve been able to do more over the last few years, I don’t even know if I actually do have ME/CFS. I fit the criteria, but what if there’s something else? What if what works for me won’t work for any of you, because we don’t have the same thing?

I know some people are on a trajectory of ME/CFS that never has any letup, it just gets worse, for some people it varies, for some it has cycles: for me, over the last 20 years, it just got worse in lurches, and I never want to return to the terror of 2013 when I first went Severe. I am so grateful that in the last couple of years, it’s very very slowly stabilised, so slowly in fact that I don’t actually realise for months, and then it takes longer for me to feel confident that the stability will last.  I suspect partly it’s because there’s nothing else wrong with me, everything else has been fixed, partly the pain and mood meds I’m taking, partly it’s being forced to rest and convalesce, but it does feel (in a totally unscientific and unrecorded way) that my health has stabilised more quickly in the last 2 years. Apart from new building adaptations and equipment making living my life less energy sucking, and taking Betablockers; the only thing that’s changed is what I’ve learned about my body and how I can make tiny marginal gains that do seem to add up to a higher quality of life. Am I well? No. Am I better than I was? Yes. And that feels like a pretty big milestone.

Finally, I would say that the vast majority of members of the 25% are affected for longer and more severely than I have been, so, if these were my opening paragraphs, I’d expect you to snort with derision and move on: one question that Lynsey asked us right at the beginning of the Zoom course was – are we in a position to dismiss it out of hand? Do we have any better offers? It was pretty devasting to realise I wasn’t and I didn’t but I’m glad I listened with as open a mind as I could manage, because those marginal gains are beginning to add up for me. 

**********************************************************************

All About Rest - Article Parts

Background

Part 1

Part 2

All About Rest - Part 2 - Breathing and Zero Gravity (Article written for The 25% ME Group)

Part 2 All About Rest Article - Breathing and Zero Gravity

RECUPERATIVE REST

Marvellous, we’ve cantered at great speed through sleep, what about being awake? If sleep isn’t restful, then logically, rest happens when we are awake – either during the day whilst we are trying to stay awake, or at night when we are finding it hard to sleep.

Years ago I met Hannah Clifton of The ME Trust (my then boss introduced us), who had been severely unwell and bedbound with ME/CFS but who had recovered under the care of Dr Worthley at Burrswood Hospital, and one thing she said stayed with me. She said that at the Burrswood she learned how to rest.  Over the years I’ve wondered about that, was there some magic formula? Some secret knowledge? Dr Worthley kindly did a few telephone consultations with me, and sent me some handouts, I’ve got the Emily Collingridge Severe ME book, Lynsey on her home visits talked me through some techniques, so I ought to have the techniques in my toolbox and I do, but do they work? Are they what Hannah was talking about? Honestly? I’m not sure, because I’m still a work in progress, I do know that in the last few years my health has stabilised and symptoms have reduced, and I am confident that the continued stability over the last few months has been a direct result of the following techniques. What I don’t know is if they will work for you.

Remember to eat your elephant a bite at a time, choose a technique that you can fit into your circumstances  and have a go, in tiny steps:

MOUTHBREATHER OR NOSEBREATHER?

Amusingly Lynsey first talked to me at home about Nose Breathing at a time when my elderly (now at peace) cat Tabitha was breathing stertorously through her mouth due to longstanding health issues. It’s the exception that proves the rule – Humans are (Tabitha excepted) the only mammals that breathe through their mouths rather than their noses, said Lynsey. Again this is one of my assumptions smashed, I had no idea there was any difference between the two, still less that they have different effects.  It turns out that there’s significant differences for our bodies depending on whether we breathe through our mouths or our noses.

Nose Breathing:

·        The nasal passages are specifically designed to warm and humidify the air as it passes into the body. The lungs can absorb warm humid air more easily than the ‘shock’ of cold dry air. The air temperature can rise about 4.5 degrees Celsius in the nose.

·        The nasal passages are designed to clean the air – to remove germs, irritants and bacteria.

·        Nose breathing is more regulated, more even, and uses the diaphragm rather than the belly.

·        When exhaling through the nose, the airflow resistance means the air stays in the lungs longer and increases oxygen intake up to 20%, and we take up more Nitric Oxide, which has an important role in the immune system and vascoregulation (how the body regulates where blood goes in the body).

·        Breathing in and out through the nose affects our nervous system – it stimulates the olfactory nerve, which passes that impulse on to the hypothalamus (and as I learned on the Zoom course and talked about above, the hypothalamus controls our biological body clock).

 

Mouth breathing

·        Exhaling through the mouth expels more air than the nose. Breathing out softly, as with a sigh, releases the tension in the shoulders, the jaw and the muscles that hold our heads up, leading to a reduction in tension and potentially a quieting of the mind.

·        Inhaling through the mouth isn’t such good news – the air dries the naturally moist tissues of the mouth, which can lead to dehydration, which can lead to bad breath, and an increase in acidity with tooth decay and gum problems. It increases the likelihood of snoring and sleep apnoea and also alters the natural head posture.

So, one SIMPLE CHANGE we can do, is to breathe more through our nose, when we are awake (which eventually will become a habit we do during sleep too). Not doing any fancy exercises like holding one nostril closed or trying to use the diaphragm more, just keeping our mouths shut, and using our noses to breath.  Obviously it’s going to be harder than mouthbreathing, we’ll be using different muscles and that’s hard for us. So take it easy, eat the elephant a bite at a time. Maybe start just breathing once through the nose, a couple of times a day. Build up slowly.

USING BREATHING TO QUIET THE MIND

I find my mind is like a hamster on a treadmill sometimes, going round and round and round, and eventually I’ve imagined so many ‘what ifs’ that there’s dinosaurs roaming around outside the windows (not really, but my what ifs have taken me so far from reality there might as well be).  I used to run or swim or cycle to get away from my problems (or sleep), then I used to read, now I can’t do any of those things, how to give my mind a break?

By concentrating on breathing. It’s very simple. You just exist. Your body does the breathing for you (apologies to anyone who needs mechanical help to breathe, your experience will be a bit different). Instead of letting your mind squirrel around, you just watch and listen to your breathing. If your mind drifts off to a worry or thought, just bring it back to your breathing.  This gives your brain a break – the brain is an enormous muscle that works really hard, by concentrating on just one’s breathing which is regular and peaceful, the brain has a chance to relax.

It’s simple but very difficult. I’ve been doing this for 2 years now and at first I could only do 30 seconds. Now I’m up to a couple of minutes.  I’m not remotely disciplined, I do it when I remember or when I’m fed up of my brain being squirrelly. I also do it to help me fall asleep, it’s taken a while but it is now a very good cue for my brain that it’s time to fall asleep. Unfortunately this makes it pretty useless as a ‘recuperative rest whilst awake’ technique unless I set an alarm first, because it can turn into an overlong siesta by accident…

USING BREATHING TO QUIET THE BODY

Once you’ve nailed breathing through your nose, you can expand your technique to breathe in through your nose and out through your mouth. This uses the muscles in the throat all the way down to the diaphragm. So it’s quite a workout in itself, so go cautiously and gently!

The effect of this diaphragmatic breathing is that it gives both the mind and the body recuperative rest. The body’s tension begins to ease and muscles relax (which can be painful if they’ve been tense for a long time) and the brain also gets a break. It provides a pause from the agonies of daily life that at first I found painful and difficult, but as it’s got easier to do, I welcome it.

Get someone to search for Mindful Breathing or Box Breathing techniques online when you get to this stage because the eventual technique is that (shock horror and outright rejection) whilst you are breathing diaphramatically you let your mind notice your pain. Yes. Really. I don’t think so!

The idea behind it is that by looking at an area that is hurting, and telling your brain that everything is ok, your brain stops ramping up the emergency signals that there’s a problem, and the extreme sensitisation to pain that can build up may begin to reduce (more on this below). Have I tried this? Only when fully painkillered up because I’m scared of pain getting worse and not stopping. I’m working on my courage for this technique, so yeah, I’m not really doing this, but I know it exists and if I have a day when nothing much hurts, I have a very cautious attempt…

ZERO GRAVITY/ TILT IN SPACE LYING POSITIONS

Speaking of how painful it is to have tension in the muscles and body, and also how painful it is for those to relax, the first time I experienced pain whilst relaxing was years ago at an Iyengar Yoga relaxation class. How hard can it be I thought? It’s just lying down… One of the exercises was to lie with eyes closed and relax the muscles around the jaw and face then the eyes – relax the eyes to make them ‘soft’. I honestly yelped with unexpected pain! With severe ME/CFS, I get pain whenever there’s tension or relaxing or a change between the two. And I don’t enjoy it, I resent it, and I’d like it to stop.

Back in 2013 when I first went Severely affected, I discovered Emily Collingridge’s Severe ME book. The back page (being a page of diagrams showing supported sitting and lying positions) was a revelation! The relief for my limbs and muscles by putting pillows under my arms and legs was enormous. Mind you, the effort of moving those pillows so I could turn over or reach the commode or toilet was even more enormous, several times I got myself trapped and had to wriggle at a slothlike pace to free myself, so whilst they are tremendously useful, they’re a lot easier if you have someone around to put them in place for you! I have no idea how these compare to a hospital type bed that provides similar support via a remote control, but if you are alone, that would be safer than finding you are being laid siege to by an accidental pillow fort!

For the last couple of years, this house has been undergoing disabled adaptations (more accurately it’s been waiting a long time between the adaptation stages being done). And I have no sofa or comfortable chairs, so fed up with trying to sit up in (a bog standard non moving) bed, I had a look at riser/recliner chairs, tilt in space chairs and that led me to Zero Gravity seating. There’s some very expensive options out there, but there’s also garden chairs that give you a tilt in space approximation (if you have the strength to tilt yourself in the first place) for about thirty pounds sterling. The idea is you put your feet on the bar at the front, push (or you get a carer to push on the back of the chair for you) and the chair reclines to an almost zero gravity position – your feet are higher than your heart and it gives an immediate feeling of lightness and relief. In a ‘zero gravity’ or tilt in space position your muscles are no longer having to hold your body together against the effects of gravity. Years ago when I was moderately affected I asked a friend who is a GP why I had more trouble standing still than walking – I expected her to say it was all in my mind and I was being ridiculous – but she just smiled as though it was common knowledge (maybe it is, but as already established the detail of science isn’t a strong point for me), and said my muscles had to work harder to keep me still than keep me moving. I have mild hypermobility (my joints don’t hold tight onto themselves) and my muscles have to work harder to do what the bone/cartilage is failing to do, so my muscles are working far harder and get more tense than they need to, and with my lying down so much, they don’t get much movement, so they aren’t staying strong with resistance as they did when I could move around back when I was moderately affected. It’s all just so needlessly painful!

I’m currently saving up for a hospital type bed and a riser/recliner (though Wheelchair Services have provided me with a tilt in space power chair for which I’m enormously grateful) and in the meantime, I use my pillows for the positions in Emily Collingridge’s book, and when I’m up to it, my zero gravity garden chair to provide relief for my muscles.

When I combine nose breathing or diaphragmatic breathing with the pillows or the garden chair, or my power chair, the relief is much longer lasting, and the change in muscle position and the act of relaxation of those muscles hurts far less. I also have an enormous collection of strangely shaped pillows and cushions I’ve bought over the years in a fruitless attempt to replicate proper supportive adaptive furniture. They do work, but not as well. But my best is good enough! And so is yours!!!

I also have a pillow each side of my body in bed whilst I sleep, which I position between my thighs and knees, as I’m a side sleeper, and restless with it, and it reduces the pain in my hips and legs whilst asleep and also the following day.

**********************************************************************

All About Rest article parts

Background HERE

Part 1 Sleep HERE

Part 3 Vagal Nerve and Mental Anxiety HERE

All About Rest - Part 1 - SLEEP (Article written for The 25% ME Group in 2020)

 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!

**********************************************************************************

All Parts of Article:

Background HERE

Part 2 HERE

Part 3 HERE