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Winding Down into Autumn 🍂

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There’s a shift in the air lately. Not just in the weather — though yes, the days are shorter, the evenings are softening into amber, and the air carries that damp sharpness that whispers of change. But inside me, too, there’s a shift I can’t quite name. Summer was slower. I had room to breathe, to exist without constantly bracing for the next thing. Now everything feels fast. Loud. Like I’ve been swept into a current that’s dragging me somewhere I’m not ready to go. And if I’m honest? I’m scared. Scared of what the CT scan might show. Scared of what the sputum and swab might reveal. I want them to show nothing — that we finally flushed out all the stubborn bugs, that this round of fighting is done. But if you live with a condition like CVID, your body trains you to expect bad news. You learn to scan constantly for danger, even when you know it exhausts you. This time, though, feels… different. I have someone in my corner — an immunologist who matches my energy, meets my gallow...
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The Aftermath of Infusion and achievement: 2 days in rest- a normal occurrence.lol.... weekly.

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 Yesterday, I completed another infusion — a vital lifeline for managing my CVID. Yet, as necessary as it is, the process often leaves me drained, retreating to my bed for hours, or days of much-needed rest. The fatigue is relentless, wrapping me in a heavy cloak of exhaustion that no amount of willpower can shake. I felt utterly rotten throughout the day, shaking, and with a pounding headache — my body protesting, my energy ebbing away with each passing hour. It’s a humbling reminder that healing is seldom graceful. In those vulnerable moments, I was deeply grateful for my mother’s quiet care — helping with meals, offering comfort when words failed. Her presence was a balm, a reminder that even on the hardest days, I am not alone. I struggle often to work hard, and to do my infusions... and then of course, all self care goes out the window, eating, showering, you name it, when I am drained I am really drained.  I get very afraid of telling people about this, because it isn'...
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Small Moments of Zen: Finding Stillness Amid Life’s Chaos

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Hello, lovelies — Clare Alexandra here. Lately, life has felt a bit overwhelming — between managing health, doctor appointments, and the endless “ladmin,” it’s easy to lose track of calm. And on top of that, kindness sometimes feels scarce, which only makes things harder. But I’m learning that even small moments of stillness can make a world of difference. Over the last year, I’ve lost 13 kilos following a mostly plant-based, lazy pescatarian diet. While on pilgrimage in Lourdes, maintaining this was easier thanks to the slower pace. Back home, the old stresses creep in, and my joints still ache, but I notice the pain is less than before, so I’m hopeful. It's still chronic... but it's more of a dull ache than a constant stabbing in my knees and ankles... I’m working on moving to a GP surgery that better supports holistic care. When trauma has shaped your experience, you only truly understand how deep it runs once you feel genuine kindness — which can feel unfamiliar and hard...
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From Wheelchairs to Curtain Calls — and the Grotto That Held Us All

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Let’s begin with an admission: I am  not  a dancer. 🙅‍♀️ My joints have been fiercely battered — whether by CVID, long-COVID, or just the daily wear of being me. The jury's still out (and I hope they're sipping tea whilst they decide). At my previous GP surgery, I was over 80 kilos and couldn’t walk ten steps without severe pain. Now? I walk. I stand. Call it progress, fragile and unfinished — but still progress. I still can't run, I still can't do all the things I should be able to do, but I am no longer crawling up my stairs in my home daily, having daily anxiety attacks, and absolutely housebound. I now just end up in bed sobbing 2 or 3 days a week when I have the ability to gently take care of myself when I do my infusions... sure I pushed through at Lourdes, running on excitement and adrenaline, 4 days after returning home though? I am in bed...typing this up on grammarly... fun...  I am also having to do a lot of medical life-admin (ladmin).... namely where is ...
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🛁 July Faves: Luxury Meets Clean Beauty with a Purpose

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Hey lovelies, it's me again... and if there's one thing I’ve learned while managing CVID (Common Variable Immunodeficiency), eczema-prone skin, and the ebb and flow of health, it’s this: what you put on your body matters—deeply. Not just in texture or scent, but in ingredients. Your skin is your largest organ, and if you're using it like a vehicle for care, it’s worth every single ounce of diligence and delight . July is always a funny month. It’s the cusp of summer's height and yet, for me, it's often a turning point—especially with Lourdes around the corner and long tour days ahead. My skin knows it. My nervous system knows it. And my products… well, they have to rise to the occasion. So, this July, I’ve been leaning into products that feel luxurious, smell divine, and are kind both to my immune system and my eczema—without breaking the bank. Here’s what’s making the cut in my skincare suitcase as I prep for Lourdes and beyond. I always double-check using Think ...
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London, You Were a Blast

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Thus concludes the London leg of the Vision: The Musical tour — and what a whirlwind it’s been. London always has a certain theatricality of its own, doesn’t it? A city that teeters between chaos and charm, where even a bus delay can feel Shakespearean if you squint hard enough. I was staying in Woolwich, in a stunning apartment that overlooked the river — picture-perfect, with the kind of view that makes you sigh into your teacup and feel, for a moment, that life is a BBC period drama, or at the very least... an episode of "SPOOKS" showing how over the hill I am now... I am sure... but that series was so good! But being immunocompromised, the London Underground is always a rather perilous ordeal. So I wasn’t about to brave the Tube without an N99 mask firmly affixed. That said, even masked up, the grime and crowds take their toll — so to give my poor lungs and immune system a break, I opted for something far more poetic: the Thames Clippers . And of course, buses... whil...
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June Life Update & Faves

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Why Not make a weekly infusion, into a ritual of care when everything else is falling apart? teehee Right, so let’s start with the unsexy stuff: I’ve had a spirometry test this week, and I’ve got a CT scan booked in for Saturday (yes, tomorrow). That combo has firmly hijacked my week, sent my health anxiety into orbit, and basically left me too frazzled to work. I’ve already had two panic attacks and cried twice today alone — glam, I know. The worst part? I only found out about both appointments a week ago and back in May was told by a different doctor that I was doing really well, and they would see me next after summer... False Hope... Emotional rollercoaster.... No time to process, no room to breathe (ironically), and I’ve had to step back from my self-employed call centre work just to keep up with the appointments and the spiralling. Apparently, some of the respiratory team think I shouldn’t have recovered from that chest infection — “people like you never do!” a nurse said that to...
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