Winding Down into Autumn 🍂

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 gallows humour with her own, and tethers me when I spiral. She calls me out when I need it. She grounds me when I can’t do it myself. And maybe that’s why, even in the fear, there’s a quiet thread of trust woven underneath.

There have been small wins, too. The ones nobody tells you to celebrate.
I can cross my legs comfortably now — and yes, that’s a big deal to me. It’s the result of slow, consistent weight loss on a mostly plant-based diet. Nothing flashy. Nothing extreme. But it’s for me. For my body to feel better in itself, not for anyone else’s approval.

No one prepared me, though, for how lonely change can be.
I’ve lost two friendships over the past few months. I did it — I dug my heels in and burnt those bridges myself, because I was being encouraged into habits I don’t want for myself. There’s this unspoken pressure, sometimes, within the chronic illness community: that you’re allowed to want better, but not do better. One really hurt me... Someone who hasn't worked or studied in 10 years, telling me not to... That I don't understand disability, because I am not diagnosed autistic? really? I never once said that autism isn't valid... of course it is... But there is a real issue when people play the pain Olympics instead of nurturing themselves and eachother. As a friend... you do not say that sort of thing to someone who had a gnarly infection earlier on in the year.. I was childish, and used the block button rather than come to a resolution. I am not proud of how I conducted that interaction, but right now I need to breathe, to have some space, and to recalibrate. 

Take food, for example. Binge eating is a serious, complex health disorder — but in these circles, it’s quietly encouraged. People eat their feelings because the world has given them so few tools to process them. I get it. I’ve been there. But when I say I don’t want to live like that anymore — when I choose not to sit down to McDonald’s or KFC every week, when I’d rather spend a little on using a sauna that helps my lungs while the staff disinfect everything — suddenly I’m the “boujie one.”

You’re allowed to eat junk food every day, but choosing not to? That’s somehow “performative.” You’re allowed to wallow, but trying to move forward makes people uncomfortable. And when you combine that with the hopelessness we’re fed — the constant messaging that “people like us aren’t meant to achieve anything” — it can be suffocating. Sometimes, that messaging even comes from within our own community, shaped by years of being told exactly that by the able-bodied world.

I’ve been exploring a hybrid learning course, in a subject that’s fascinated me since I was a tiny girl. Honestly, not everyone has taken it well. Some reactions have been… hostile. To the extent that I’m lowkey embarrassed to mention it at all, because I don’t want the negative energy thrown at me. But this is for me — not for anyone else. Little-me, the one who used to dig in the garden and imagine uncovering lost worlds, would be thrilled.

I’m not studying again to prove anything.
I’m not going back to uni to be “better than anyone else.” This is for her — my inner child. To honour the curiosity, the dreams, and the life I imagined before CVID ever became part of my story. Timing wouldn’t have changed a thing. I’d still be me.

The same goes for my body.
I’m losing weight, yes. I’m building a better body for myself, to feel better in it. Not to fit anyone else’s standards. Not as a competition. But the more I focus on what I want for my health, my dreams, and my future, the lonelier it feels.

And there’s so much going on right now, it’s dizzying.
Panto readings for casting are coming up.
There’s a respiratory appointment looming, and I’m dreading it — my last few have been awful despite my solid lung function, and the way I was spoken to was frankly disgusting.

But there are good things, too.
I’ve got an immunodeficiency evening coming up — a space where patients and academics meet, where science and human stories sit side by side. It’s informal, comforting, grounding. We are lucky to have those resources, and I hold on to that.

Then there’s the reality no one likes to talk about: disability is expensive. Studying costs money. Working part-time means juggling bills, debts, and a thousand compromises I wish I didn’t have to make. It’s messy, and I’m not proud of every decision. But life catches up with all of us eventually.

I want this blog to be honest about that.
Not a “good vibes only” space, not a shiny, “don’t let chronic illness get you down” slogan. Because the truth is, sometimes it does get you down. It’s layered. It’s complicated. Pretending otherwise helps no one.

But I also want this to be the space I wish I’d found when I was first diagnosed — real, candid, approachable, and safe. A space that says: you deserve more than the scraps you’ve been handed. You’re allowed to want better. You’re allowed to do better. You’re allowed to build a life that works for you, even when other people don’t understand it.

It’s a lot right now. I won’t lie about that. But I’ll get through it. We will.
And maybe this autumn, with its quiet drift and subtle slowing, will teach us to trust that change doesn’t always come to break us. Sometimes, it comes to make room.

Until next time,
Clare Alexandra 🤍

"Unflinching, unpolished, and unapologetically real — because living with chronic illness isn’t neat, and neither are we."