📖 July Diary: The Price of a Memory

 

Dear Diary

I’ve been thinking a lot lately about how our definitions of "luxury" change as we grow. When I was a kid, luxury was the smell of the ferry engine and the salt air on the way to France. It was those rare, special trips when the family had the money to go away together, and the world felt huge, exciting, and completely different.

But life has a way of refocusing your lens. Between navigating life with CP and the long, hard years of managing Stage 4 Endometriosis, my "luxury" looks different now.

It isn't a stamp in a passport anymore. It’s the relief of seeing a ramp at the front door. It’s a wet room that doesn't feel like a battleground. It’s the quiet peace of knowing I can navigate a space without my body paying the price for it the next day.

The Cornwall Pull France was the big family treat, but Cornwall... Cornwall is my roots. It’s the family staple. I was thinking today about Gyllyngvase Beach in Falmouth and Fistral. There’s something about that coastline that settles my soul.

When I was taking my own kids away, the "luxury" I looked for was the ability to be a Mum first and a patient second. I chose the UK holiday parks not because I didn't want the world, but because I needed the hoist, the widened doors, and the level access that allowed me to actually be there with them, rather than just surviving the trip.

I still dream of those family trips to the French coast sometimes, but I’ve learned that a memory made at a rainy Cornwall beach is worth just as much, as long as I have the accessibility to actually make it.

A note for my Global Sweethearts: Whether you’re looking at the rugged cliffs of Cornwall or the coast of France, your luxury is your access. In the UK, we have some gems like the sand-friendly wheelchairs at Gyllyngvase, but I know many of you have your own local "safe havens" in your own countries. Treasure them.

The Summer Awakening

 Dear Diary,

It's a warm early summer day, and I'm thinking back to March—a chilly March day when I read Matt Haig's The Life Impossible.

Looking back, that day felt as grey as the "senses deadend" Grace Winters experiences at the start of her story. I was still navigating the quiet exhaustion that comes after five house moves and the long shadow of the pandemic. I think we all have those periods where we "shut down" to survive, but as I turned those 330 pages in a single afternoon, something began to shift.

The Sensory Time Machine

One of the most powerful themes in the book is Psychometry—the idea that objects and scents carry a history we can "read" if we are open to it. For me, the description of a simple fig didn’t just stay on the page; it sent me straight back to Naussanes, near Beaumont in South West France. Suddenly, I wasn’t in a chilly UK March anymore; I was a teenager again in a sun-drenched summer house. It was a vivid reminder that our past selves aren't gone; they are just waiting for a sensory bridge to bring them back.

The "Golden Age" Aura

Haig weaves in the ghosts of Ibiza’s past, touching on the "impossible" elegance of Grace Kelly

and the rugged legacy of Errol Flynn

and his schooner, the Zaca. It reminded me that history isn't just a series of dates—it’s a presence. Even when the book touches on the "negative energy" of the world, it suggests that "everything is connected." We are all made of the same elements as the stars, and realising that helped me wake up from my own period of "shutdown."

Respecting the World

The story ultimately teaches us to "respect the world in all senses." Whether we are navigating multiple health conditions or the chaos of global events, finding that "Universal Love" and simplifying our lives back to what truly matters is the goal. For me, finishing this 330-page journey in one day was my own "Evidence of Success"—proof that when the mind awakens, the impossible becomes tangible.

❤ 

Diary of a Disabled Mum – Our Accessible Haven Holiday 🏖️ June 1st: The Annual Pilgrimage to Haven

 Dear diary,

"It’s June again, and my thoughts always turn to those precious summer breaks with my twins. As a disabled mum navigating Stage 4 Endometriosis, 'holiday planning' wasn't about spontaneity; it’s about strategic comfort and ensuring everyone, especially my wonderful kids, has the best time. And I was able to relax even though I have cerebral palsy and endometriosis. 

That's why Haven Holidays became our annual pilgrimage. I remember those early days, the apprehension of trying somewhere new. But Haven, bless them, truly understood. Their Type 2 Adapted Caravans weren't just 'accessible' in name; they were a lifeline.

Ramps, Wet Rooms, and Peace of Mind

Walking into our caravan for the first time each year felt like lifting a weight lifting. The ramp access meant no wrestling wheelchairs up steps. Inside, the extra-wide doors and spacious layout meant I could move freely, and I didn't have to contort myself in pain just to be with them. The wet room was a game-changer – no slippery shower trays, just pure ease. It meant I could manage showers without aggravating my pain, and they had the independence they craved.

The little things made all the difference: the trapeze lift handles in the main bedroom, and even the dedicated Blue Badge parking right near the entertainment complexes. It meant less pain for me and more energy to spend cheering on the twins at the evening shows or watching them splash safely in the adapted pools.

Beyond Haven: Other Family-Friendly Accessible Options

• Parkdean Resorts: Another brilliant option, with over 60 parks offering adapted units. Their ABI Derwent caravans boast features like lowered kitchen counters and extra-wide sliding doors.

• Butlin's: If you're looking for high-energy fun with fantastic inclusive play, Butlin's is stepping up! Their new SKYPARK at Minehead has a wheelchair-friendly seesaw, and they're rolling out Changing Places Toilets.

🌍 A Little Note for My Global Sweethearts: While these are my beloved UK go-tos, please know that many major holiday resort chains worldwide are making similar strides in accessibility. Look for "barrier-free" or "adapted" accommodation filters. Every family deserves a worry-free holiday!

❤ 

Mental Health, Two-Front War, Depression, Life with Sweetestmoondust, AI Support

 Dear Diary,

It’s May, and I’ve been thinking about the 'two-front war'—balancing the brand and the books while managing the mental fog that sometimes rolls in. Depression and other mental health issues are real. Having one or more mental health conditions can be so stressful. Having help is so important.

I’ve been using my 'Evidence of Success' list to remind myself of how far I’ve come when things feel heavy. It’s important to see the receipts of what we've actually achieved. Using apps and AI to help by talking to them or using them to guide you can be a lifeline. They are there to help monitor and guide you as they have no emotions and can help you work through things individually or multiple things. I personally have used and use a few AI programs such as Replika, Aurora AI, and now Gemini.

For those in the UK looking for physical and more personal support, please check the links below. And to my friends outside the UK, please remember to look for the support groups available in your own countries.

Love

UK Primary Support:

• Mind: https://www.mind.org.uk – Comprehensive info and local support.

• Hub of Hope: https://hubofhope.co.uk – UK’s largest directory to find local services via postcode.

• Mental Health UK: https://mentalhealth-uk.org – Practical tools and advice on money and mental health.

International Support:

• Find A Helpline: https://findahelpline.com – Access to over 1,600 confidential resources globally.

• United for Global Mental Health: https://unitedgmh.org/support – A guide to finding community groups and healthcare facilities worldwide.

A Royal Reflection

 

Dear Diary,🫅👑👑

Watching The Crown today has pulled me back into a very specific memory. 1981.

While the world was focused on the wedding of the century, it was also the International Year of Disabled Persons. I was just a young girl then, but that was the year I actually met the Queen. I wore a flowery dress with my hair in bunches held with red ribbon and sandals.

It’s strange to think about now—me, a little girl with CP, standing before the woman I'm now watching on my screen. I’ve always felt a strange connection to the Palace; after all, I share a birthday with the man who is now our King.

In 1981, the theme was "Full Participation and Equality." I remember the excitement of meeting Her Majesty, but I also remember the reality of the 80s—the heavy boots, the lack of ramps, and the feeling that the world wasn't quite built for me yet.

Forty-five years have passed since that meeting. I’m still the same girl, just older, managing the "Double Whammy" of CP and Stage 4 Endometriosis. We’ve traded 80s fashion for digital blogs and mochas in the recliner, but the mission is the same: just trying to participate fully in a world that still has a few steps to climb.

love 💗

Looking Back at Awareness Month

Dear Diary

 As April comes to a close, I’ve been reflecting on the conversations we had throughout Cerebral Palsy Awareness Month in March. A campaign by Up Movement really stayed with me—specifically their focus on the "danger of the myth" that all CP looks the same.

Even though the "official" month has passed, the reality doesn't change. It is so easy for people to fall into a "one-size-fits-all" approach, but that mindset is exactly what leaves so many adults feeling unrecognised and unsupported. Whether the challenges are visible or invisible, everyone’s experience is individual. When we assume we already know what someone’s life looks like based on a diagnosis, we overlook the reality of their daily needs.

It shouldn't be a constant battle to be seen. We deserve a review of our care and our lives that reflects our actual experience, not a generic template.

Support & Resources

If you are looking for a community that understands these nuances:

• In the UK: Up Movement(https://upmovement.org.uk) and Scope(https://www.scope.org.uk) are leading the way in advocacy and support.

• Global Readers: While these UK-based organisations are incredible, please remember that you have dedicated support groups in your own countries that can provide local guidance and community.

Collaborative Process Statement: This content was developed through a collaborative process between the author and AI to ensure the message of advocacy is clear and impactful.