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.
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All About Rest - Article Parts
Background
Part 1
Part 2
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