Dear Diary,
August has arrived with a heavy, golden stillness that feels like both a gift and a siege. It is a month of profound contradictions, and today, as I sit with my coffee, I am reflecting on the strange duality of a body that feels simultaneously liberated and overwhelmed. There is a quietness to the house this morning—the washing up is done, the kitchen is reclaimed, and for a moment, the world feels still.
The Borrowed Peace of the Heat Pad
There is a specific kind of mercy in a British heatwave that most people—those with "standard" internal thermostats—might never understand. For me, the soaring temperature acts like a permanent, world-sized heat pad.
For a few weeks a year, the relentless grip of spasticity and the sharp pull of muscle tension seem to soften. Usually, my muscles are like overwound clock springs, tight and resisting every movement. But in this humidity, that tension yields. My limbs feel heavier, yes, but also more fluid. It is a rare sensation to feel "loose," even if that looseness comes at the high price of the "melt."
I find myself moving with a bit more grace, the usual rigidity replaced by a slow, syrupy ease. It is a fleeting window where the physical "armour" I wear every day feels a little less heavy. I often think about how my readers see the finished books—the poems in Book 4 or the newly released Be Who You Want to Be—and I wonder if they can feel the physical state I was in when the words were formed. Writing in the heat is different; the prose feels warmer, more patient.
The Internal Battle: The Broken Thermostat
However, diary, the trade-off is exhausting. While the external heat soothes the CP, my internal system is in a full-scale battle. One of the least discussed aspects of living with cerebral palsy is the struggle with autonomic regulation. Many people don’t realise that for us, the body often forgets how to dial the temperature back down.
I am melting from the inside out. My heart rate climbs just trying to keep my core cool, and my "bandwidth" for the day starts to drain before the sun is even at its peak. When you add the layer of stage 4 endometriosis, the arthritis, and the lordosis into the mix, the exhaustion becomes multidimensional. The "fog" settles in—that thick, heavy blanket that makes even the simplest decision feel like wading through treacle.
In these moments, fluid isn't just a suggestion; it’s a non-negotiable lifeline. I’m tethered to my water bottle, calculating every movement to ensure I don’t tip over into that familiar, bone-deep exhaustion. I have to be so careful with my energy; if I spend it all on the physical "washing and doing," there is nothing left for the brand.
Steady Waters: The Sovereignty of Life with Sweetestmoondust
For a long time, I viewed my progress through the lens of specific projects or seasons, but I’ve come to realise that the true journey is Life with Sweetestmoondust. This brand is the vessel, and I am the captain. During the years of transition, I was navigating choppy waters—health shifts and internal restructuring that often made it feel like I was just trying to stay afloat. I had the vision, but I didn't always have the stability to execute it.
But today is different. The transition period has settled. I find myself in a stable place, a harbour where the waters are calm enough for me to finally do everything I wanted to do but couldn't while the waves were crashing. Life with Sweetestmoondust hasn't just changed externally; it has matured internally. I am no longer just reacting to the symptoms of my conditions—the CP, the ADHD, the chronic pain—I am navigating through them with a steady, experienced hand.
This stability is what allowed me to finally get my books to the British Library. It’s what allowed me to see Be Who You Want to Be through to completion and release it into the world. It’s what allows me to treat the "Winter Voyage" as a beautiful part of my story rather than the whole map. I’m in a place now where I can look at the multiple conditions I live with and see them not as anchors, but as the very terrain I am an expert at navigating. I have the "receipts of success" now to prove that I can thrive.
The Collaborative Process of Survival
I’ve had to learn the hard way that you cannot fight the sun. You have to negotiate with it. I’ve developed a "Collaborative Process" not just with my work, but with my own body and its many demands. On days like today, we are partners in a slow dance.
This process is now woven into the very fabric of my books and here. It’s a statement of how I work—recognising that some days the ADHD fog is too thick to write, and other days the arthritis flares or the lordosis makes sitting at the desk a challenge. But because I am in a stable place, I no longer beat myself up for those "slow" days. I simply adjust the sails. I track the foggy days, I log the low-energy moments, and I work with the rhythm of my life rather than against it.
A Note to the Global Community
I am so incredibly grateful for the support groups here in the UK. Having a community that understands why a summer day feels like a marathon is vital. But I know my followers—on Instagram, X, and Threads—are scattered across the globe.
To my readers in the US, China, and beyond: please remember that while our experiences of disability are universal, our environments are not. You have your own local advocacy groups and support networks—please use them. Don't try to "tough out" the heat alone. Whether it’s finding cooling strategies or just finding someone who gets why you’re frustrated, those local links are your lifeline. We are all on this voyage together, but our local ports are where we find our true rest.
The Horizon: Be Who You Want to Be
Holding the finished copy of Be Who You Want to Be (Book 5) feels like a victory over the "melt." It is proof that stability is possible even when your physical body feels like it's in a state of constant flux. While The Long Way Down is still in process—a longer, deeper journey that I am taking my time with—having Book 5 out in the world gives me the breathing room to be patient with the next project.
I’m up early-ish today, just me and my coffee, reclaimed and ready. The washing up is done, the laundry is humming in the background, and the kitchen is clear. It feels like a metaphor for where I am in life right now: the clutter has been cleared, the work is being finished, and I am finally ready to step into the next phase.
For now, I’ll take another sip of my coffee, stay close to the fan, and enjoy this borrowed looseness in my muscles. The fog might be hovering, and the "melt" might be real, but I am the captain of Life with Sweetestmoondust, and we are sailing on.
.jpg "The Winter Voyage - Life with Sweetestmoondust")
