The Cost of Leaving the House

This is Also M.E, Crashing with Chronic Fatigue Syndrome in Real Time

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: Living With FND: Seizures, Brain Glitches, Disability & Rebuilding Life

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

Part One: From Friendship to Diagnosis: ME, FND, Medical Gaslighting & Nicola’s Story

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

The Cost of Leaving the House

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 #mecfs #chronicfatigue #invisibleillness #postexertionalmalaise #chronicillnesslife #spoonie #energycrash #nervoussystem #chronicillnessawareness

Growing Up With ME: Gabriel’s Side

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 [https://beacons.ai/jade.skywalker06?utm_source=ig&utm_medium=social&utm_content=link_in_bio] #ChronicallyGlitched #MyalgicEncephalomyelitis #ChronicIllness #MECFS #InvisibleIllness #ChronicIllnessLife #ParentingWithIllness #DisabilityAwareness #RealLifeChronicIllness #FamilyLife #ChronicIllnessPodcast #MEAwareness #LivingWithIllness #ChronicFatigueSyndrome #PodcastUK