12 Days for the Crime of Leaving the House

This episode, I’m talking about what happened when I dared to leave the house and try being a normal human being for two hours — and ended up sentenced to 12 days of PEM for my crimes.

I talk about what those 12 days actually felt like, both physically and emotionally, and the point where I was just really bloody upset and grieving the life ME has taken away from me.

There was also the small matter of my leg deciding it no longer wanted to behave like my leg, another blood-pressure drop, crawling upstairs, the stroke clinic getting involved and finally having a CT scan of my brain — which, thankfully, came back normal.

I also had an appointment with the ME/CFS clinical psychologist to talk through how things have been and the impact the illness is having on me. I found out there’s around a year’s waiting list for one-to-one support, with group sessions likely to be available sooner.

That led me to self-refer to NHS Talking Therapies, where I was genuinely surprised to see chronic fatigue syndrome specifically mentioned as a long-term health condition they may be able to support people with.

NHS Talking Therapies – find your local service and self-refer:
https://www.nhs.uk/nhs-services/mental-health-services/find-nhs-talking-therapies-for-anxiety-and-depression/

There’s also talk of eConsults, Mum’s trip to the dentist, and the usual Mum & Me wandering off in whatever direction the conversation takes us.

And, because I need some escapism from all of this, I share what’s been keeping me company lately — Brandon Sanderson’s The Way of Kings, Big Finish’s The Eleventh Doctor Adventures: Hidden in Plain Sight, Mad Men, far too much Love Island USA, and disappearing into Ghost of Yōtei whenever my hands will let me.

Im totally in PEM this week, broadcasting from bed!

Just a very short hello to everyone just to let you all know, I am stuck in bed in full PEM and will be back in a couple of weeks as normal, thats if I don't crack first.

Enjoy this short but bitter interlude and see you guys shortly.

Chronically Glitched Podcast

Living with M.E./CFS and chronic illness — the reality, the crashes, the dark humour, the frustrations, the small wins, and everything in between.

This is the link to the Chronically Glitched website:
https://sites.google.com/view/chronically-glitched-podcast/home

#ChronicallyGlitched #MECFS #MEAwareness #ChronicIllness #ChronicIllnessAwareness #SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #InvisibleIllness #InvisibleDisability #Disabled #DisabilityAwareness #ChronicPain #ChronicFatigue #PEM #PostExertionalMalaise #Spoonie #SpoonieLife #Housebound #Bedbound #Pacing #EnergyLimitingConditions #LivingWithME #LivingWithChronicIllness #ChronicIllnessPodcast #MEPodcast #HealthPodcast #DisabilityPodcast #Podcast #Podcaster #UKPodcast #PersonalPodcast #DigitalDiary #PatientVoice #LivedExperience #ChronicIllnessCommunity #MECommunity #MillionsMissing #NotJustTired #LongTermIllness #LifeWithChronicIllness

This week, there’s actually something to celebrate! Chronically Glitched has been ranked number 7 on Feedspot’s list of the Best ME/CFS Podcasts. I’m absolutely chuffed to have made the list, so thank you to everyone who listens, follows, shares or has found their way to this little digital diary.

Feedspot – Best ME/CFS Podcasts

We also talk about my home wellness day – my attempt at creating my own little retreat without having to leave the house. We chat about what I got up to, what worked for me and some of the different therapies and techniques we’ve been looking into, including red light therapy, meditation and cognitive behavioural therapy (CBT).

If you want to see some of the photos from my home wellness day, you can find them here:

Facebook

We also get into something a bit heavier this week: the mental and emotional side of living with ME/CFS. I talk about the grief I still feel for the life I had before becoming ill, the things I’ve lost and how difficult it can be to come to terms with a life that looks completely different from the one I expected.

I’ve finally asked for some help with that and requested to speak again to a clinical psychologist specialising in ME. I talk about how much seeing a clinical psychologist through the ME service helped me in the past, and why I feel like I need that support again now.

We also chat about CBT and some of the resources available online. The NHS has free self-help CBT information and exercises through Every Mind Matters, as well as information about accessing NHS Talking Therapies:

NHS – Self-help CBT techniques:
https://www.nhs.uk/every-mind-matters/mental-wellbeing-tips/self-help-cbt-techniques/

NHS – Talking Therapies:
https://www.nhs.uk/tests-and-treatments/talking-therapies/

And, of course, we finish with our recommendations – including my latest obsession, Interview with the Vampire, and particularly the utterly brilliant, beautiful, terrifying and completely unhinged Vampire Lestat.

In fact, I’m currently sat here in my Vampire Lestat T-shirt while writing up these episode notes, which probably tells you everything you need to know about how that obsession is going.

Chronically Glitched: A Digital Diary is my honest account of living with ME/CFS and chronic illness – the good bits, the awful bits, the ridiculous bits and everything in between.

Available on all good podcast platforms.

#MECFS #ChronicIllness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #ChronicallyGlitched

This week’s episode is a shorter one.

The episodes in between my Mum & Me episodes will often be a bit shorter. It gives me a little more breathing room between the bigger recordings while still letting me check in with you all.

After recording my last podcast, I crashed hard with post-exertional malaise (PEM), and I’ve spent the second heatwave stuck in that crash.

It’s not that the hot weather makes my M.E. worse. It’s that being trapped indoors, feeling desperately ill while everyone else is out enjoying the sunshine, brings another kind of grief.

In this episode, I talk about why accepting this illness is still something I struggle with.

Before M.E., I was the complete opposite of the life I live now. I worked abroad, lived abroad and loved travelling. Losing that version of myself has been one of the hardest parts of this illness, and sometimes the things I miss most aren’t the big milestones—they’re simply being well enough to enjoy a beautiful summer’s day.

A short, honest update from behind the scenes of living with severe M.E./CFS.

#MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #SevereME #PostExertionalMalaise #PEM #ChronicIllness #Disability #InvisibleIllness #Spoonie #Housebound #ChronicIllnessAwareness #MELife #MECFSAwareness #ChronicallyGlitched #Podcast #HealthPodcast #ChronicIllnessPodcast

This week I’m talking about something that’s been on my mind a lot lately.

It struck me recently that if you scroll back through our family WhatsApp group, I’m hardly in any of the photos anymore. It’s not because anyone’s left me out. It’s because I haven’t been well enough to be there. I ended up calling it #Martina’sMissing because that’s exactly what it feels like. After a while, you realise you’ve quietly disappeared from family memories.

That was one of the reasons I decided to see everyone when they came to visit. I was fed up of always being the one who wasn’t there.

As expected, I had the delayed crash afterwards. I was already in PEM when the heatwave arrived, which made coping with the hot weather even harder.

I also talk about eating a whole tub of ice cream, the vasovagal response that followed and what that actually is.

I’ve started tapping (EFT) again, so I talk about why I’ve decided to give that another go.

The biggest thing I’ve been thinking about is whether I need to stop waiting for the day I get better before I start living the life I’ve got now. That doesn’t mean giving up hope. It means trying to find some peace with where I am now instead of always thinking, “I’ll do that when I’m better.”

As always, this is just my experience of living with severe ME/CFS.

Check out us on Spotify for links to recommendations

#ChronicallyGlitched #Martina’sMissing #MECFS #MyalgicEncephalomyelitis #ChronicIllness #InvisibleIllness #SevereME #Housebound #PEM #PostExertionalMalaise #Vasovagal #Grief #Acceptance #BigFinish #DoctorWho #AudioDrama #Podcast

Even Rest Needs Rest

This week we’re taking a short break from the podcast.

It’s been one of those fortnights where life has simply happened – we’ve had the hot weather, family visiting, and I even managed to have a vasovagal response after eating far too much ice cream! Sometimes there’s no big dramatic reason; it’s just a reminder that living with ME/CFS means listening to your body and knowing when to stop.

We’ll be back in two weeks with another Mum & Me episode, and we’re looking forward to catching up with you all then.

Thank you so much for listening and for all your support. See you in a couple of weeks!

#ChronicallyGlitched #MECFS #MyalgicEncephalomyelitis #ChronicIllness #Disability #InvisibleIllness #Spoonie #ChronicFatigue #PEM #PostExertionalMalaise #Podcast #HealthPodcast #ChronicIllnessPodcast #MumAndMe #RestIsProductive #Pacing #LifeWithME #DigitalDiary

In this episode of Chronically Glitched, I take a closer look at what an ME/CFS crash actually feels like and the three stages I experience during post exertional malaise (PEM).

I talk through the build up, the sudden shutdown phase, the acute crash itself, and the long recovery period that follows. I explain how everyday activities that most people take for granted can trigger severe symptoms, why crashes are so difficult to predict, and what it feels like when your body simply refuses to keep going.

If you’ve ever wondered what a crash really feels like from the inside, this episode is for you.

#MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PEM #PostExertionalMalaise #ChronicIllness #DisabledLife #InvisibleIllness #Spoonie #ChronicPain #NeuroimmuneDisease #MECFSAwareness #LongTermIllness #HealthPodcast #ChronicIllnessPodcast #PodcastUK #ChronicallyGlitched #DigitalDiary #DisabilityAwareness #HouseboundLife #SevereME #MECFSCommunity #FatigueIsNotTiredness #LifeWithME #ChronicDisease

In this episode Mum and me talk about our little holiday to Marske and how it actually went in reality. We talk about the good moments, the bits where I managed to feel a little more normal again, and then the aftermath afterwards and how long it took my body to recover from pushing beyond its limits.

We end up talking a lot about family health and the strange ways illness and certain traits seem to pass through generations. Mum talks about things she later discovered about her grandma and how many similarities there are between different members of the family, from bowel problems and diverticulitis to the way our bodies seem to react to stress and illness in similar ways. It becomes a bigger conversation about genetics, inherited health issues, and how families slowly piece these patterns together over time.

We also talk honestly about ME/CFS treatments, symptom management, and the reality that most people with chronic illness spend years trying different things hoping for improvement. Some things can help a bit, some things help certain people more than others, but there still isn’t a cure. We discuss pacing, rest, and why protecting your energy becomes one of the biggest parts of surviving with this illness.

Another big part of the conversation is work and the damage that can happen when you spend every bit of energy trying to prove you can still keep going. We talk about how work can end up taking everything from you. You force yourself to show up, push through, and hold yourself together for work, but then there’s nothing left afterwards for family, hobbies, relationships, or yourself. The crash comes later, behind closed doors.

We also mention one of the support groups I’m part of, Brain Health Breakthrough CIC, and how important it can be to find people who genuinely understand this illness and the reality of living with it day to day.

You can find them here:
https://brainhealthbreakthrough.co.uk

And as always, we finish with the things that have been keeping us company lately.

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