Episode 13: This Is Also ME, Crashing with Chronic Fatigue Syndrome in Real Time

This wasn’t supposed to be the next episode.

Mum and me were due to record properly, but I’ve been really unwell, and instead of disappearing for weeks until I could manage a full episode, I wanted to leave something honest behind in the gap.

So this is a shorter episode. About half an hour. Recorded while I’m in the middle of feeling properly rough after family visits, overstimulation and trying to recover again out in the garden.

I think it’s important to capture these moments too. Not just the “best version” of chronic illness where you can tidy yourself up enough to speak clearly and sound normal for an hour.

Sometimes ME is unpredictable. Sometimes it pulls the rug completely. Sometimes all you can do is sit outside and try to calm your nervous system back down again.

This episode is basically a little bridge between now and the next full episode. But it’s also probably one of the more accurate snapshots of what living with ME actually feels like day to day.

#MECFS #ChronicIllness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #InvisibleIllness #DisabledCreator #Spoonie #ChronicFatigue #PodcastUK #MentalHealth #HealthPodcast #ChronicIllnessPodcast #MELife #NeuroimmuneDisease #Housebound #PostExertionalMalaise #PEM #ChronicallyGlitched #MECFSAwareness #RealLifeWithME #PodcastRecommendation #BritishPodcast #YorkshirePodcast #DisabilityAwareness #LivingWithME

Part two with Nicola, now focusing on life after diagnosis.

We talk about what Functional Neurological Disorder actually feels like day to day. Nicola describes it as her brain firing on three cylinders instead of five, with signals glitching and misfiring.

We cover the reality of non-epileptic seizures, the fear that comes with them, and how quickly life can change.

We also talk about the practical side of disability. Using walking aids, planning everything around energy, trying to leave the house, and the knock-on crashes that follow.

There’s a lot of unhelpful advice out there about FND, and we don’t shy away from that either.

Most of all, this episode comes back to friendship. We started out bonding over shared health struggles, and now we’re both much worse, but we understand each other in a way most people don’t.

#fnd #functionalneuro #nonepilepticseizures #chronicillness #mecfs #disability #spoonie #invisibleillness #brainfog #neurologicaldisorder #chronicfatigue #mentalhealth #chronicillnesslife #ukpodcast #chronicillnesssupport

In this episode of Chronically Glitched, my friend Nicola joins me for the first part of a very honest conversation.

We talk about how we met and how our friendship grew through shared experiences of chronic illness and mental health struggles.

Nicola opens up about her journey before diagnosis, including endometriosis, hysterectomy, pancreatitis, open surgery, and functional cognitive impairment. We also get into the reality of medical gaslighting, being passed between specialists, and the emotional toll of not being believed.

This episode covers grief, depression, and the long road to finally being diagnosed with Functional Neurological Disorder (FND), on top of everything else she was already dealing with.

This is what it actually looks like before a diagnosis. Confusion, dismissal, and trying to hold yourself together while your body is falling apart.

#chronicillness #fnd #mecfs #medicalgaslighting #endometriosis #hysterectomy #pancreatitis #mentalhealth #chronicillnessawareness #invisibleillness #spoonie #nhs #grief #depression #functionalneurologicaldisorder

We start with a catch up after a busy couple of weeks, including Mum being interviewed about coming over from Ireland. Then we move into what I’ve been doing, including trying at home massage and what it does to the nervous system.

We talk about the parasympathetic state and how it can briefly give you a window of feeling more normal, enough to get out of the house, before the reality hits afterwards. That delayed crash, the kind that wipes you out long after the activity is over.

From there we get into the practical side of it. What actually helps when you’re in that state and your body is completely done.

We also touch on body image, how illness changes your relationship with your body, and the mental side of that.

We finish, as always, with what’s keeping us company.

#chronicallyglitched

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This episode is a conversation with my son Gabriel about what it was actually like growing up with a mum with ME.

We talk about when he first realised something wasn’t right, how it affected our day to day life, and what he understood as a child versus what he understands now.

He shares honest memories of plans changing, what he found difficult, and the parts of our life that still worked despite the illness.

This is not a medical discussion. It is the view from the other side of it. A child growing up around chronic illness, and what that really looks like over time.

If you are a parent with ME, or someone who grew up around illness, this episode will likely feel familiar.

Gabriel's social media and links can be found HERE

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#PodcastUK

In this Mum and Me episode we talk about misinformation around ME and chronic fatigue syndrome, and how dangerous cure narratives can spread online.

From nervous system “recovery” claims to staged looking health talks and oversimplified recovery stories, we unpack how easy it is for hopeful messaging to become harmful when it ignores the biological reality of ME.

Martina talks about her own experience with EMDR and EFT, what those therapies genuinely helped with, and why calming the nervous system is not the same thing as curing a complex multi system illness.

We also discuss the emotional damage false hope can cause when people push themselves trying to recover, only to end up blamed when it does not work.

Along the way we touch on real biomedical research, including the UK DNA study Martina took part in, and why context matters when public recovery stories are presented as templates.

Trailer for Episode 8 of Chronically Glitched.

In this Mum & Me episode we talk about misinformation around ME and chronic fatigue syndrome, and the real harm that dangerous cure narratives can cause.

From nervous system “recovery” claims to oversimplified online advice, we unpack how hopeful messaging can quickly turn into pressure, blame and false hope for people living with ME.

We also talk about the difference between therapies that help manage symptoms and claims that promise full recovery, and why context matters when recovery stories are shared online.

Episode 8 – “Hope, Harm and the Online ME Cure Narrative”

is out Sunday 8th March.

Follow, listen or watch by searching Chronically Glitched on your platform of choice.

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It’s Not the Plastering. It’s My Nervous System.

When the plasterers were in, nothing catastrophic happened.

No one shouted.

No one threatened me.

Nothing objectively dangerous was going on.

And yet my body reacted like I was under attack.

In this episode, I talk about what actually happens in my nervous system when my environment changes and I lose control of my space.

Because that’s what it was.

It wasn’t about plaster.

It wasn’t about men doing a job.

It wasn’t about noise.

It was about:

• Losing control of my environment

• Losing access to my kitchen and basic routine

• Not being able to move freely in my own house

• Not being able to rest properly

• Feeling observed and overheard

• Having unfamiliar people move through my space

• Not being able to fully relax or drop my guard

When you live with ME and layered trauma stress, your system is already sensitive. Already scanning. Already working harder than it should.

So when something shifts, even something practical and ordinary, my body does not register “home improvement”.

It registers threat.

Adrenaline spikes.

Heart rate lifts.

Digestion shuts down.

Sleep gets lighter.

Every sound feels amplified.

Every decision feels harder.

And then comes the second layer. The emotional one.

I felt pathetic.

Weak.

Embarrassed that something as normal as plastering could knock me sideways.

But this episode is about reframing that.

Because this is not weakness.

It is hypervigilance.

It is a nervous system that has learned to associate unpredictability with danger.

It is a body that already lives on limited capacity reacting to more input than it can safely process.

I talk about what it feels like to lie in your own bed and not feel at rest.

What it feels like to feel bullied by circumstance, even when no one is actually bullying you.

What it feels like to reject even small additional changes because your system is already flooded.

This episode breaks down the physiology of that reaction.

Why chronic illness lowers your threshold for stress.

Why unpredictability hits harder when your baseline is fragile.

Why your body can interpret disruption as threat even when your rational brain knows you are safe.

It also touches on something deeper.

When you lose health, you lose autonomy in small invisible ways.

You lose spontaneity.

You lose physical freedom.

You lose certainty.

So when something disrupts your last controlled space, it can land far heavier than it looks from the outside.

This is an episode about nervous systems.

About control.

About adrenaline.

About shame.

About how chronic illness and past stress shape the way your body reacts to the world.

If you have ever wondered why something “small” completely derailed you, this one is for you.

It’s not the plastering.

It’s my nervous system.

PLANS FAIL AND FAIL AGAIN

Mum and Me

This episode is about plans. Making them. Needing them. Watching them fall apart. Over and over again.

In this Mum and Me episode we talk honestly about what it is like when your body does not cooperate with your intentions. When you genuinely want to go out. When you get ready. When you try. And then you do not make it out of the house. Or you do but it costs you far more than expected. Or you have to turn back. Or you pay for it later.

We talk about the emotional weight of repeated disappointment. Not just big life plans but small ordinary ones. A coffee. A walk. A visit. A simple outing that other people barely think about. How each failed attempt chips away at confidence and makes the next plan harder to believe in.

We talk about living with ME CFS and how unpredictable energy changes everything. How planning becomes a gamble. How you can do everything right and still lose. How people from the outside often think it is a mindset issue or a lack of trying when the reality is the opposite. You are always trying. You are just negotiating with a body that does not follow rules.

We also talk about IBS and the constant background calculation it brings. The anxiety around symptoms. The fear of being stuck somewhere without control. The way it narrows your world quietly and persistently. How it feeds into avoidance and self doubt even when you want to push through.

Body image comes into this too. How illness changes how you see yourself. How clothes stop fitting the way they used to. How mirrors can become uncomfortable. How shame can creep in even when you know logically that this is not your fault. How hard it is to feel confident or visible when your body feels unreliable or unfamiliar.

My mum and I talk about the difference between motivation and capacity. About grief for the person you thought you would be. About the pressure to stay positive. About the guilt that comes with cancelling plans yet again. About the quiet loneliness of watching life happen elsewhere while you manage symptoms at home.

There is no tidy ending here. No lesson learned. No five step plan to fix it. Just an honest conversation about trying and failing and trying again. About adjusting expectations. About sometimes stopping trying altogether for a while because you need to protect what little energy you have.

If you live with chronic illness. If your plans often fail. If you feel embarrassed by how small your world has become. If you are tired of explaining why you cannot just push through. This episode is for you.

This is not about giving up. It is about telling the truth about what it is actually like.

In this bonus episode of Chronically Glitched, I look at love through a disability lens. Not the romanticised version, not the inspirational one, but the real one that happens when illness changes the ground underneath a relationship.

I talk about how relationships shift when disability enters the picture. What happens to romance, intimacy, partnership, and identity when life is no longer equal in the way we expect it to be. When one person becomes more dependent. When roles blur. When love starts to look less like two people walking side by side and more like adapting, adjusting, holding things together, and staying.

This episode explores the uncomfortable questions people don’t often say out loud. Are you still a couple or does it start to feel like one person is supporting the other. How do you hold on to love when energy, independence, and plans disappear. What does romance look like when your body has limits. How do you redefine partnership when everything about daily life has changed.

I talk honestly about my own relationship, how it looks now, what we’ve had to let go of, what we’ve rebuilt, and what love actually means when disability is part of the equation. This isn’t about tragedy or inspiration. It’s about reality, grief, adaptation, and the quiet ways love can survive even when it no longer looks like it used to.

A Valentine’s episode for anyone whose relationship doesn’t fit the standard script. For people living with disability, chronic illness, or long term conditions, and for the people who love them.