One of the enforced lessons of living with autoimmune disease has been learning to navigate times of extremely low energy reserves.
There’s a kind of tiredness that’s so pervasive and all-encompassing that it feels like you’ve been flattened by a steamroller. Where you find yourself lying on the couch, wanting something simple like a glass of water, but unable to summon the will to walk the ten paces to the kitchen.
One of the ways I knew I was starting to get better was when I began to feel ‘normal’ levels of tiredness again. Normal tiredness became something to celebrate.
If you know, you know.
From a nervous system perspective, we are in the dorsal vagal state at these times. A response that conserves energy by shutting down all but the most basic of functioning. Even the breath can become semi-suspended.
In the wild this is the ‘play dead’ response you see when an animal is unable to outrun its predator. It freezes and appears dead, which helps it to be less of a target.
It makes some sense to me that this response shows up in autoimmune disease. When the ‘threat’ is coming from inside the body’s own system, there is no way to outrun it, so the best we can do is shut down and conserve resources. And when the threat is ongoing, it makes sense that we can get stuck there for prolonged periods.
It’s a response that can show up in conditions like long COVID, chronic pain, chronic fatigue, depression, and a whole raft of autoimmune diagnoses. And of course, it can show up without any of these diagnoses too.
It’s poorly understood medically and often invisible to the outside world, which means it can be a lonely and torturous place.
Our tendency is to try to override tiredness through excessive reliance on props like caffeine, sugar, and various forms of sensory stimulation, but in doing so we are further over-stepping our limits, living on borrowed resources, and driving our systems into greater debt.
These are some of the things I’ve learned about navigating this state
♦ Although the body is not an especially hospitable place in these times, it helps to move in closer to ourselves, to be willing to feel deeply what’s happening within. To listen to the messages the body is communicating. Yes, it’s saying I’m tired. But perhaps it’s also saying I’m sad, I’m angry, I’m suffocating in this job/ relationship/ situation. Perhaps it wants to grieve, scream, rage, or simply sleep.
♦ Give yourself permission to be where you are, how you are, and begin from there. This is sometimes the hardest practice of all in our very driven, pressured world. Trust that this state has meaning and purpose. On some level it is needed by your system or it wouldn’t have shown up.
♦ Staying soft with yourself helps. Harshness, judgement, pushing, and arguing with reality are all an immense waste of energy. When energy is already in short supply, we need to use it wisely. You might imagine your tiredness as a lost little being that has just walked into the room. Offer it a chair and your listening ear. Ask it what it wants you to know.
♦ Like most things in life, to resist it is to create more struggle. We need to go with the energy. Anyone who has lived around the ocean will likely be familiar with the advice about what to do when caught in a rip. You have to surrender, and let the rip take you, knowing it will eventually let you go again. If you fight against the rip, you will exhaust yourself in the struggle, and this is when people lose their lives at sea. I’ve always felt this is an important metaphor for living. We need to move with, not against, the currents that are out of our control. With extreme fatigue, this often means surrendering to that low-energy state, moving slower, staying close to home, keeping things small.
♦ That said, exploring and titrating movement can be useful and necessary to shift the vagal brake. You might start with five minutes of the smallest, gentlest movement you can find. You might even be lying in bed. Inhabit your body with a spirit of curiosity – what parts want to extend, arch, curl, rock, or roll? Let movements be heavy, languid, slow. Allow one shape to morph organically into another, following the fluid evolving thread of impulses that arise. Let your body, not your mind, lead the way.
♦ As you tentatively begin to move, you will find one of two things. The body may say an emphatic NO. This deserves to be respected – it’s a clear communication, and perhaps your inner wisdom speaking. Or you may find that a teeny bit of aliveness and energy start to enter the system as you begin to release the dorsal vagal brake. In which case, be curious where the movement wants to go, and whether it wants to grow. Don’t rush it. It may want to expand a little or a lot, or not at all. Stay very close to yourself, listening for when to move, when to pause, when to rest. There are times when adding a little fire through stronger shapes and movement can be useful to shake off the brakes, and there are times when this would drain energy rather than give energy. Nothing is prescriptive. Trust your body and its messages.
♦ Whether you are in movement or stillness, it’s useful to add some breath. A simple easeful rhythm of breathing in and breathing out. Noticing if the breath is suspended or held. Inviting fresh oxygen back into your cells. Just the simple act of breathing can shift a lot in these moments. Emphasise your inhale to invite vitality into the system, emphasise your exhale to release stagnation and make space for fresh cleansing breaths to arrive.
♦ Avoid screens as much as possible. Screens can seduce us into thinking we are resting when actually our nervous system is being taxed by a huge influx of sensory stimulation.
♦ If there’s a tiny spark of energy somewhere in your life – a particular person, place, activity - follow that. It may be offering a clue.
And when energy eventually does start to return, it’s helpful to remember that life exists as a series of highs and lows, expansions and contractions. To break the boom-and-bust cycle, we also need to tend to the expansive phases, making sure we don’t burn through all our resources there - because once that has happened, the only way is down.
By staying close enough to our inner experience, we can become more attuned to the body’s needs. Experimentation, titration, and deep listening are key. Learning to move with, not against, the body’s rhythms and currents.
Thank you for reading. I’d love to hear your own experiences of moving through these phases in life, and what, if anything, has supported you during those times? It can be a lonely place and it helps to share the glimmers of wisdom gleaned along the way.
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Thank you for writing this. Inhabiting the long covid world, fatigue is much misunderstood. You go for a rest and people say "All good now?" No, it doesn't work that way. And people, even upbeat and cheerful ones, can be so, very, exhausting. It's a strange, liminal space to inhabit 🙏
Dear Vicki,
Thank you for sharing such a beautiful, raw, and real yet peaceful read.
I deeply resonate with that state of nervous system fatigue you described—the complete inability to act at times. It brought back a vivid memory from years ago: coming home from the park with my two kids, battling chronic nerve pain, iron deficiency anemia, and the unrelenting demands of motherhood, all while navigating postnatal depression and its effects on my children. Not to mention the lingering shadows of what I now recognize as PTSD from all of the above. I remember sitting in the car in the garage, utterly unable to get out until I had rested right there in the driver’s seat. Even the act of standing felt impossible.
That was a chapter from years ago, but your email feels so timely for me because I’ve been experiencing nerve pain again this week. While I now have the tools to accept, listen, and shift through it, I noticed my body’s initial response was that same wave of extreme fatigue.
Your beautiful reminders to surrender and trust truly meant a lot to me today.
Thank you so much.
Arohanui,
Miia