When Expectation Becomes a Cage: Breaking Free from Fear, PEM, and Nervous System Dysfunction

This Morning...

Before I sat down to write this post, I got up and went for a ride on my mountain bike — through a nearby valley that took me to the beach. I went for a swim, then carried my bike up a steep cliff path (which I wouldn’t recommend — I was puffing like a steam train), and cycled home along the road.

Let that sink in for a second.

Because if you knew where I started from — how unwell I was — then you’ll know how wild that is. And if I’ve come from that to this, then honestly? There’s a good chance you can too.

Image by Alexa from Pixabay

The Cage of Chronic Illness I used to think reality was just... well, real. Obvious. Tangible. But when your nervous system's broken — like properly fried — you realise how much of your reality is actually based on expectation. And fear. And conditioning. Especially when you’re dealing with stuff like FND, ME/CFS, or Fibromyalgia. You don’t respond to life anymore. You respond to what your nervous system thinks is going to happen.

For years, I was stuck in that loop. I was so unwell that even minor movement would send my heart rate through the roof. I’m not exaggerating — just rolling over in bed or getting up to use the bathroom could trigger a full-blown physiological meltdown. Heart pounding. Internal tremors dialled up to 11. Dizziness. Visual disturbances. Pain. fatigue, Weakness, tinnitus, Insomnia, nightmares. Honestly, I could list pages of symptoms, but if you’re reading this, I don’t need to. You already know. It felt like being tortured. Every single day. Every night. Over and over. I was stuck in my house, stuck in my room, stuck in my bed. For years.

And the worst part? I was terrified to move. Not because I didn’t want to — I desperately did — but because my body had learned to treat movement as danger. Even when I tried to do something positive, like stretching or walking a few steps, it would flare everything up. And then my brain would go, “See? Told you so.”

But how does that even happen? I wasn’t afraid of movement—I lived for it. I prided myself on being athletic and fit. I worked hard and trained hard. I was the type who pushed through everything. Got a cold? Push through. Bit of pain? Push harder. That’s just how I operated.

Then I got sick—maybe from overexertion, maybe COVID, maybe stress, maybe the car crash or maybe all of it combined—and suddenly, even the smallest actions triggered massive symptoms. So did my body learn this reaction? Or was it just stuck in a stress loop I now had to undo?

Turns out, it’s both.

See, the nervous system doesn’t work through logic—it works through patterns. When your system spends too much time in the sympathetic state—fight or flight—and not enough in the parasympathetic—rest and digest—a pattern begins to form. Your nervous system starts connecting the dots. It’s not conscious. It’s not personal.

I think eventually—usually after a major stressor, whether it’s a virus, a car crash, or the emotional toll of losing someone you love—the system just can’t transition back. It gets stuck. Suddenly, rest and digest is no longer accessible. And now you’re fighting a serious battle—one that feeds off everything: internal thoughts, fear, light, sound, the environment. Even movement becomes a threat. The food you consume can also trigger a stress response, which is why diet becomes such an important part of healing—a topic I explore more in a separate post.

In your mind, though, the last thing that tipped the balance becomes the culprit—COVID, the car crash, the injury. That’s what broke you. Like when you overeat and end up feeling sick, or that last drink that pushed you over the edge—you fixate on it. You blame it. And just like you’d steer clear of that food or drink for a long time afterward, you start avoiding anything that reminds you of that breaking point.

But we don’t always see that it wasn’t just one thing. It was the build-up—the constant stress, the overexertion, the things we brushed off. That final trigger was just the last straw.

I Didn't Believe It Either Now, I know this might be hard to grasp. And trust me — my first reaction to this stuff? Absolutely not. No way. My body felt like a lead weight. I had nothing in the tank. Sick as a dog. There’s no chance all these disabling, frightening symptoms were down to a “dodgy nervous system,” I thought.

There had to be more to it — something structural, something broken, a deadly disease. At one point, I became convinced I had spinal instability, because every time I moved, my symptoms would flare up — and the pattern looked similar to what I'd read about.

Alongside all the blood tests, I began paying for private scans in a desperate search for answers — a brain scan, neck and back MRIs, even an ultrasound, all in the hope of finding something.

But when you really stop and think about it — I mean really think — the nervous system controls everything.

Movement. Pain. Digestion. Breathing. Hormones. Blood pressure. Sensory processing. Emotions. Energy. Immune response.

Literally every system in the body is influenced by it.

And once I started diving into the science — the neuroscience, the research on stress and the nervous system, neuroplasticity, and the chemistry of chronic illness — it all actually started to make sense.

Like, terrifyingly a lot of sense. How all these random, unrelated symptoms could stem from one system that’s just stuck in survival mode.

So What Changed?

It didn’t happen overnight. No magic bullet. No sudden “cure”.

What helped me most was starting to unlearn the association my nervous system had made between movement and danger. And I did that not by forcing myself to exercise, but by building in tiny, safe, positive movements, and associating them with joy and calm instead of fear and survival.

This is where the science comes in…

The Brain: A Prediction Machine

Your brain isn’t just reacting to what’s happening now — it’s constantly trying to guess what’s about to happen. That’s how it keeps you safe. This is known as predictive coding, where your brain builds its version of reality based on expectations — not necessarily what's actually there.

So now that your nervous system has become so reactive to exertion that every movement triggers a crash (hello, PEM), guess what? Your brain starts to expect the crash — before you even move.

And that expectation alone is enough to set off a full-body fear response:

• Heart rate spikes

• Muscles tense

• Blood pressure rises

• Digestion shuts down

  
  

All of that can happen just from anticipating movement. Not because you’re imagining it — but because your nervous system has rewired itself to see movement as a threat.

This is exactly why GET (graded exercise therapy) didn’t work for me. In fact, it made things worse. Every time I tried to push a little more, it only reinforced the stress response. I wasn’t building tolerance — I was strengthening the danger signals.

Eventually, I became completely bedbound. Big mistake.

So how did I begin to rewire my nervous system? (Very slowly.)

It took time. A lot of it. But here’s what actually helped me:

Start tiny. I mean really tiny

This is about linking movement with safety — not effort. At first, that meant doing just enough to avoid triggering symptoms while staying calm and grounded. Sometimes that was just lifting an arm, wiggling my toes, or sitting up in bed for a few minutes. No pressure — just presence.

I used visualisation techniques, especially ones tied to positive past experiences, to shift my mindset and send those feel-good hormones through my body. Because when even rolling over in bed can trigger symptoms, you have to start with mindset.

One thing that helped was music. Not the emotional, heartache kind, but tracks that lifted me. I went for upbeat, energising tracks — Eye of the Tiger kind of stuff. OK, I wasn’t training for a boxing match, but this was a different kind of fight — and I wasn’t going to give up.

If it were just about pushing harder, that would’ve been easy. But this was something else entirely: reconnecting with inner strength, building confidence, and creating a sense of emotional control. I focused on linking that positivity with movement. That rhythm became part of my healing — helping my body believe: We’re safe now. We’ve got this.

Movement Meets Joy

The game-changer was this: pairing movement with joy. I started trying to connect joyful emotions with small bits of movement. Not fear. Not effort. Joy. That’s how I began retraining my system to see movement as safe. I wasn’t exercising. I was reconnecting with something deeper.

Eventually, surfing became part of that. It offered glimpses of presence, excitement, even laughter — all wrapped inside physical activity. It wasn’t about “getting fit.” It was about feeling alive. My nervous system, slowly and stubbornly, began to rewrite its patterns. Movement no longer meant danger. It started to mean something good.

Joy Is Neurochemical

Joy isn’t just a nice feeling — it’s powerful biology.

When we experience joy, we release:

• Dopamine – for motivation and reward

• Serotonin – for mood and calm

• Endorphins – for pain relief and pleasure

• Oxytocin – for connection and safety

  
  

These aren’t just “feel-good” hormones. They help rewire the brain — from stress and fear toward healing and trust. That’s the real work. Not pushing harder, but gently changing the prediction.

Trust the process

This healing wasn’t linear. It wasn’t clean. And it certainly wasn’t easy.

I didn’t force myself to crash. I didn’t overdo it to prove anything. I stayed curious, playful, and patient — at least, most of the time.

Some days, I doubted everything. Especially when symptoms flared. But each joyful moment — however small — created a new connection. A fresh signal. A different path.

Over time, those tiny shifts added up.

This is not to say symptoms disappeared overnight. They didn’t. But they softened. And even when they didn’t, I had something to anchor me: the quiet knowledge that I was moving in the right direction.

After five years of getting nowhere, this time, I was finally making real progress.

Some of Us Are Wired Differently (And That’s Okay)

Now, I want to add something important here — because while it’s true that the nervous system can be rewired and that recovery is possible, it’s also true that some of us are just wired a bit differently to begin with.

If you’re someone with Autism or ADHD (or both, like many of us are), you might already know what I’m talking about. It’s like your nervous system has a hair-trigger. You feel things more intensely. You’re more sensitive to light, sound, temperature, emotions — everything. And transitioning between states (like from stress to calm, or from active to resting) doesn’t come easy. The switch just kind of… sticks.

That’s not your fault. It’s not something that can be “cured”. It’s just how your system runs — and it’s worth knowing that when you’re trying to heal.

Because if you’re constantly trying to make your nervous system behave like someone else’s, it can feel like you’re failing. But you’re not. You just have to work with your system, not against it.

For me, that’s meant learning to really tune into what my body and emotions are doing — not just physically, but energetically too. What kind of environments drain me? What kind of people? What types of exertion trigger symptoms versus what types lift me up?

Regulation Over Perfection

This is long-term nervous system work. It’s not about being calm 100% of the time — it’s about recognising when your system is dysregulated sooner, and supporting it better.

You might need more rest than others. You might need earplugs or sunglasses in places other people don’t. You might need more structure, more routine, more predictability. And that’s okay.

The goal isn’t to become someone else. The goal is to understand your own wiring so well that you can live a full life with it — not despite it.

Final Thought

I know some of what I’ve said might be hard to fully grasp — especially if you’re still in the thick of it. But I see people every day posting about symptoms just like mine and yours. In fact, most seem nowhere near as severe as I was. I couldn’t even lift my head, let alone share my thoughts online.

I didn’t spend my time endlessly Googling symptoms. I studied — the nervous system, the brain, the body. Not out of obsession, but out of desperation.

There are no clear test results. No structural damage. No textbook disease to pin it on. But people do recover. I’ve read their stories, and I’m becoming one of them.

It’s taken me over a year of consistent, sometimes gruelling work to get my health to where it is now. Am I cured? no but I'm constantly improving. My history suggests I may live with this for life — but I’m also proving that it can be managed, and life can be good again. And for many others, full recovery is absolutely possible. I’ve heard from people who’ve been well for years.

These conditions — with their relentless symptoms — are life-altering. The suffering is hard to describe. But it’s also why I write: to offer insight, to share what’s helped, and to give hope.

So if you’re deep in the struggle — if your reality right now is shaped by fear, exhaustion, and a body that feels stuck — please remember this:

There may be a way out.

Your nervous system is trying to protect you, even if it’s doing a terrible job of it. With the right approach — time, patience, and gentle signals of safety — it can learn to settle again.

Better days are possible.

References Fear Conditioning & Emotional Memory

1. Fear Conditioning A comprehensive overview of fear conditioning, detailing the role of the amygdala in the acquisition and expression of conditioned fear responses.

Source: Wikipedia

Read more

2. Fear Conditioning and Extinction Across Development Discusses how fear conditioning and extinction processes vary across different developmental stages, providing insights into emotional learning.

Source: NCBI – National Center for Biotechnology Information

Read more

3. The Contextual Brain: Implications for Fear Conditioning, Extinction, and Psychopathology Examines the neural circuits involved in fear conditioning and their relevance to various psychological disorders.

Source: Nature Reviews Neuroscience

Read more

Joy, Neurochemistry & Healing

4. How the Parasympathetic Nervous System Influences Your Mental Health Explores the role of the parasympathetic nervous system in promoting relaxation and its impact on mental well-being.

Source: Verywell Mind

Read more

5. Polyvagal Theory: How Our Vagus Nerve Controls Responses to Our Environment Introduces the polyvagal theory, explaining how the vagus nerve influences our emotional responses and social behaviors.

Source: Verywell Mind

Read more

6. The Beginner's Guide to Resetting Your Vagus NerveProvides practical steps to stimulate the vagus nerve, aiming to improve stress responses and overall health.

Source: Adelaide Now

Read more