The Invisible Flare

 

 

Dear Diary,

It’s officially CP Awareness Month. The world is turning green to support people like me, and I’m proud to share that part of my life. But today, my diary entry isn't about the green ribbon; it’s about the silent war.

I have Stage 4 Endometriosis.

Most people see the CP—the way I move and the physical effort of my gait. But they don't know what Stage 4 does behind the scenes. It’s the "Double Whammy."

When the Endo flare hits, it’s like a chain reaction. The internal pain triggers the spasticity in my legs, and suddenly, my CP is ten times harder to manage. My muscles lock up because they don’t know how to handle the deep, internal "grrr" of the Endo.

I have to be the Manager of two different wars at once. One is visible to everyone who walks past, and the other is a silent, deep battle with scar tissue and pain.

Today, the heat pack is my best friend. I’m sitting in my recliner, just trying to breathe through it and balance the needs of two very different conditions.

People ask how I do it. I don’t have a fancy answer. I just do it because I have to. One breath, one poem, and one day at a time.

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Support Groups

• Endometriosis UK: Leading charity in the UK. Helpline: 0808 808 2227.

• The Endometriosis Network (UK): Specialised support for complex decisions.

• Scope & CP Sport (UK): Advice on managing disability and health.

Note to international readers: Please look for support groups in your own countries. I can’t be certain of every single one, but you don't have to manage this alone.

From the Retreat Bubble to the Real World (And the Found Family in Between)

 Dear Diary,

Today is Sunday, and I’m feeling a little raw as I sit here "bouncing while flaring"—that strange mix of high energy and chronic pain we talk about so often. I’ve just put down Love Your Life by Sophie Kinsella, and it felt like a sanctuary, though a bittersweet one.

Knowing we lost Sophie in December adds such a layer of sadness to every joke. She truly was the queen of finding humour in the friction of life. At first, the book frustrated me—the transition from the perfect "Retreat Bubble" (where the characters fall in love without even knowing each other's names) to the messy "Real World" felt so jarring.

But then I realised... isn't that exactly what this life is?

One minute I’m in a "Retreat Day"—the pain is low, the house is quiet, and I’m writing—and then bang, I’m thrown back into the real world of flares, fatigue, and the physical limitations of CP and Endo. The contrast is always a slap in the face.

The part that actually made me cry was when the character Nell got sick. Seeing that mismatched group of friends pull together to look after her just broke me in the best way. It reminded me that "family" isn't always blood. It’s the people who show up when you can’t get out of bed. In my world, that found family is everything.

Thank you, Sophie, for the laughter and for the reminder to "love your life" even when the mending is messy.

The Logistics Of Love 😍

 Dearest Diary,

I’ve been looking back at those years when the twins were between 9 and 11, and it feels like a different lifetime. That was the era of the "Great Transition".

Back then, I was still learning how to move from being the Engine to being the Navigator.

My late 40s were spent in a frantic, beautiful blur of dance classes and competitions. I remember the intensity of one of the twins finding their wings on the stage—and even though I couldn't dance with them, being their emotional anchor was the most important job I ever had.

I look back at the "Logistics of Love" from those years and realise how much strategy was involved. I was writing and publishing three books in the quiet gaps between school runs and rehearsals. I didn't chase the limelight for those books then; I left them to stand on their own because my energy was needed on the dance floor and at home. They were my "quiet victories".

Now, from the perspective of my 50s in this house we worked so hard to plan and organise, I see that era for what it truly was: the birth of the Invisible Shift. 

I talk about the actual moves and how I dealt with the moves in previous posts. Such as a new place, a longer wait than I thought and more.

My disability taught my children empathy before they could even name it. It taught them that "I can't" isn't a dead end—it's just an invitation to find a different way. I wasn't "less" of a mum because I sat on the sofa; I was more of a strategist.

The series of being a "Twin Mum" ends in the next one.🌙✨

Love 

Sunday Reflection: Reclaiming My Name through 'Nobody's Girl'"

 Dear Diary,

It is Sunday, and I’m finally sitting down to find my rhythm after a week of navigating the usual "brick walls." I’ve spent the morning thinking about Nobody’s Girl by Virginia Giuffre. It’s one of those books that stays with you, especially when your own body is screaming for a "Red Light" day.

This book feels like a series of "Mirror Moments" for me. Virginia talks about the "Invisible Cage"—that feeling of being trapped not just by circumstances, but by the systemic betrayal of people who should have protected you. Seeing the "receipts" of her father's actions while she was fighting for her own name... It’s a heavy reminder of why I’m so focused on my own Evidence of Success. When the world tries to take your name, you have to be the one to reclaim it.

The part that really hit my bandwidth was her battle with the physical cost. She writes about Fibromyalgia, depression, and severe neck pain. It’s a perfect example of "The Body Keeps the Score." Her body was trying to carry the weight of the world, and it eventually gave out. As someone living with Stage 4 Endometriosis and CP, I felt that in my soul.

She achieved so much for "the newer ones," but the cost was so high. It’s a tragic reality that we can find our way out of the Cage and into the Sanctuary, but we still carry the scars of the battle.

The Verdict: Virginia is the ultimate warrior. She reclaimed her legacy for her children even when her body was failing her. It’s given me a lot of "stickability" fuel for Book 5. We aren't defined by the cage; we are determined by the strength it took to break out of it.

Life Gives You a Code Brown... Win or Learn.

Dear Diary

Today feels like a mix of chaos and clarity. They say never work with children or animals, but Graeme Parker (The Hoof GP) works with half-ton cows that can kick you into next week. He does it with a smile, usually while his team—Craig and Cameraman Graham—are taking the mick out of him in the background.

I’ve just finished reading Code Brown (and his first book), and what struck me wasn’t just the farming. It was the electricity. Graeme is open about his Bipolar and ADHD, and you can feel that energy in everything he does.

Today, my own body is doing what I call "bouncing while flaring." My Endometriosis is shouting, but my brain is running at a hundred miles an hour. It’s a chaotic mix of high energy and chronic pain, and it made me realise I’m operating on the same philosophy Graeme lives by: Win or Learn.

The Accent that Changed Everything

One of the stories that stuck with me most wasn't about a cow at all. It was about the RAF. Graeme passed the physicals, passed the tests, and was ready to serve—only to be failed because of his accent.

It was an "embarrassing" rejection. It was unfair. But instead of letting that define him, he took it as a lesson. If he had joined the RAF, there would be no Hoof GP. No YouTube channel. No millions of views. It’s the ultimate example of a "Code Brown" moment turning into fertilizer for something better.

The "Have a Go" Hero

We live in a world that loves to over-plan (and over-worry). But when it came to rescuing Fiona, "The Loneliest Sheep," Graeme didn't wait for a safety assessment or a TV crew’s schedule. While the media were busy planning the perfect shot, he and his friends just went up the mountain and got her.

It reminds me of how we have to advocate for ourselves with disability. Sometimes, you can’t wait for permission. You just have to "have a go." Whether that is standing your ground against activists who don't understand the reality of the job, or standing up to a medical system that doesn't understand your pain.

The Real Cost of Grit

But let's not romanticize it. The job is brutal. Just before Christmas, Graeme nearly lost the use of two fingers from a cow kick. That isn't in the book—that is real life happening right now. It is a reminder that even when you are an expert, the risks are real.

The Verdict

Reading Code Brown felt like looking in a mirror—not because I want to trim cow hooves (definitely not!), but because of the resilience. It’s about showing up when you’re tired. It’s about laughing when things go wrong. And mostly, it’s about accepting that life is messy.

So, if you are having a "Code Brown" kind of day—whether it’s a flare-up, a bad meeting, or just a mess you can't clean up yet—remember the Hoof GP philosophy:

You don't lose. You either win, or you learn.

love

The Invisible Shift

Dear Diary,

I was looking at an old photo today from when the twins were seven. It’s strange how the 'chaos' changed back then. We had survived the nappies and the toddler meltdowns, but suddenly my calendar was filling up with things I couldn't physically control.

I call it the 'Invisible Shift.' 

It was the era of the school run, the constant buzz of birthday parties, and those long afternoons at the dance studio. On the outside, I was just another mum waiting for her kids, but on the inside, I was constantly calculating my bandwidth—measuring exactly how many steps I had left before my body gave out.

This was when I really learned that my 'maintenance' wasn't a luxury—it was my armour. 

Here is what those years really looked like behind the 'I'm fine' smile..." The nature of the struggle changed as they hit seven. We moved from the physical 'doing' to the mental 'managing.' This was the era where they really started to gain independence. They could find their own snacks and, more importantly, they started to see my physical needs without me saying a word. They became my 'little helpers,' naturally closing the gaps because they’d grown up watching me navigate the world differently.

But their social and extracurricular lives exploded.

Every week was a cycle of dance classes, rehearsals, and the high-pressure buildup to exams. I remember the physical challenge of those long waits—sitting on hard plastic chairs in drafty halls, my neck and pelvis screaming for the recliner, while I watched them perfect their steps. The pride of seeing them succeed in those exams was immense, but the 'invisible cost' to my body was real.

Every weekend was a birthday party in a soft-play centre or a house that wasn’t designed for me.

This is where my bandwidth was truly tested. The sensory overload from the parties and the loud music of the dance studios was immense.

I remember leaning heavily into my £20 coffee budget during these years. It wasn't just about the drink; it was the twenty minutes of stillness I needed to reset my nervous system after a chaotic party or a long afternoon at the dance school. I had to learn that saying 'no' to some social things was the only way to say 'yes' to my own health. We found our rhythm in the middle ground—less lifting, more coordinating.

love