The Surgical Dilemma

 

Dear Diary,

I’m thinking a lot today about the things people don't say out loud.

When you tell people you have Stage 4 Endometriosis, they often say, "Can't you just have a hysterectomy?" They think it’s like taking out a faulty part in a car. I wish it were that simple.

For me, the damage is so extensive that it’s connected everything. It’s in my bowel, it’s wrapped around my pelvis, and it radiates through my back until I can’t tell where the CP pain ends and the Endo begins.

My doctors and I have had the hard conversations. Because the Endo has caused so much tethering, surgery is a massive risk. We aren't just talking about a recovery period; we are talking about the fact that I could wake up with a stoma because the organs are so fused together.

It’s a choice between the "devil and the deep blue sea." Do I live with the daily pain and the bowel issues, or do I risk a surgery that could change my life in a way I’m not ready for?

Living with Stage 4 means managing a "frozen" reality. It’s not just "bad periods." It’s a full-body management job every single day.

I’m staying in the recliner today. My back is screaming, my bowel is playing up, and I'm just trying to keep the "Manager" in me from feeling overwhelmed by it all.

love 😍 

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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.

Stickability and Strength: A Review of Matt Stabb’s 'Keep on Keeping On

 Dear Diary,

It’s Wednesday, and I am finally sharing my thoughts on Matt Stabb’s biography. Reading his book is like sitting down for a coffee and a chat; it’s ad-hoc and honest, just like life.

What struck me most were our "Mirror Moments." We were born in the same decade, both living with Cerebral Palsy, yet our paths were so different. In 1983, while Matt was navigating special schools and colleges, I was part of that first batch of children integrated into mainstream education. While he was being told to sit in the guards' van on trains, I was sitting in the carriage.

It makes you realise that the "disabled community" isn't one single story.

Matt talks a lot about "Stickability." He had to fight for his own bungalow, manage his own care, and prove to everyone—including the Duke of Edinburgh assessors—that he could do it. That "stickability" is exactly what I’m focusing on for Book 5. It’s not about being perfect; it’s about having the grit to "Keep on Keeping On," even when the world wants to put you in a guard van.

❤ 

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.

---

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.