Sunday Thoughts: The Art of Sitting Still (When the Mind is Running)

 

Dear diary,

It’s a new normal Sunday for me.

Usually, the world tells you that Sundays are for resetting, for planning the week ahead, or for going out on big family adventures. But if you’ve been following this blog for a while—or if you live with a disability or chronic illness yourself—you know that our calendars don't always look like everyone else's.

Today, my calendar just says: Rest.

I’m sitting here with a cup of tea (the third one? possibly the fourth), listening to the hum of the house. The washing machine is doing its thing in the background—a sound that always grounds me—, and I am trying, really trying, to listen to my body.

Living with Cerebral Palsy (CP) is a constant negotiation. It’s a daily board meeting between what my brain wants to do and what my body is actually willing to permit. Lately, the physical side of things has been loud. There have been twinges in my neck, pain in my foot, and that heavy, familiar fatigue that feels like wearing a coat made of lead.

In the past, I would have fought this. I would have sat here feeling guilty, looking at the dust motes dancing in the light, thinking about all the things I should be doing. I would have worried that I wasn’t being consistent enough, or loud enough, or "productive" enough.

But I’m learning that there is a difference between being "productive" and being "creative."

Because even though I am physically sitting still—because the CP demands it today—my mind is travelling at a hundred miles an hour. That is the strange, beautiful contradiction of this life. The body might be parked in the slow lane, but the imagination is racing down the motorway.

That’s actually how my latest book came to be.

You might have seen that Book 4 is finally out in the wild. It’s on Amazon now, sitting there with its shiny cover, available for anyone to read. It feels strange to say it’s "done." For months, those poems were my constant companions. They were the scribbles made in waiting rooms, the notes typed out on my phone in the middle of the night when sleep wouldn't come, and the thoughts that kept me company when I was stuck in a chair, unable to move much else.

Now that it’s out, the standard advice is to push it. Market it. Shout about it. Post about it every hour.

But that’s not really the "Sweetestmoondust" way, is it?

The book is out there. It exists. It is a branch of this tree, but it isn’t the whole tree. The tree is this—the reality of a Sunday where the biggest achievement is managing the pain levels and keeping the peace.

And besides, my brain has already moved on.

Even as I sit here nursing this tea, guarding my energy, I can feel the spark of something new starting to catch. It’s the "writer’s curse"—you finish one project, and before the ink is even dry, the next idea starts tapping on your shoulder. I’m already plotting the next thing. I won’t say too much yet (mostly because it’s still a chaotic mess of notes and daydreams), but it’s there.

It reminds me that resilience isn't always about fighting the current. Sometimes, resilience is just floating.

So, if you are reading this and feeling guilty because you aren’t "hustling" today, or because your body has forced you to stop when you wanted to go—please, take a breath with me.

You are allowed to just be. You are allowed to let the washing machine provide the soundtrack to your day. You are allowed to let your creative work be a quiet stream rather than a flood.

I am going to finish this tea. I am going to rest my neck. And I am going to let the new ideas bubble away quietly in the background while I do absolutely nothing else.

Thank you for being here, and for reading the branches of my story.

With love (and plenty of tea),

💓

The Rigid Years: Navigating the School Bell with CP

 

Dear diary 

It's now January 2026, and I'm looking at my calendar for this January, with all the medical appointments and 'face maintenance,' I can’t help but think back to when the little ones were five. Back then, a calendar this full felt like a battlefield.

​Ages five to seven were the 'Rigid Years.' Everything revolved around that school bell. For a mum with CP, that bell isn't just a sound; it’s a high-stakes deadline. I remember the anxiety of the school gate—standing there (or sitting in my scooter) and feeling the 'able-bodied' gaze. You wonder if the other parents see the effort it took just to get out the door with book bags and PE kits, while your own body is screaming for a rest.

​My arthritis, especially in my neck, really started to flare during this time. I wasn't changing nappies anymore, but I was constantly bending for stubborn zips and laces.

I had to be a 'Logistics Queen.' If I didn't plan the morning with precision, I’d be spent by 10 AM. I remember 'Floor Time'—wanting to be down there playing, but knowing that once I was down, getting back up was a mountain to climb. I learned to use my 3-Fold Breath on the mobility scooter after drop-off just to survive the morning. I wasn't the 'active' mum, but I was the present one." Saying yes and no, and you'll have to wait until the time is right.

While also ensuring I tried to space things out so I didn't have to go to bed too early and could have grown-up time.

Love 

Diary of My third Trimester: Welcoming Twins with Cerebral Palsy

Preparing for the Arrival: The Final Trimester

Years later, as I reflect on those months with the scent of freshly laundered baby clothes still vivid in my memory, I remember the roller coaster journey through the third trimester of my pregnancy. As someone with cerebral palsy, my partner and I faced unique challenges while preparing to welcome our twins into the world.

During that trimester, the twins grew rapidly, and as they took up more room inside me, my mobility became increasingly limited. I found myself relying more on my wheelchair and leaning heavily on my partner for support. Simple tasks became monumental, but my determination never wavered.

Navigating Challenges: Living with Cerebral Palsy

Living with cerebral palsy during pregnancy meant that each day brought new challenges. While I was barely able to walk, I focused on what I could do rather than what I couldn't. My partner's unwavering support was my pillar of strength, guiding me through the most difficult days.

Tips for Managing Pregnancy with Cerebral Palsy

1. Seek Support: Lean on your partner, family, and friends. It truly takes a village.

2. Prioritise Rest: Your body was working overtime. Rest was not a luxury; it was a necessity.

3. Consult Specialists: Regular consultations with obstetricians and specialists in cerebral palsy should help manage symptoms effectively.

4. Stay Informed: Knowledge about what to expect helped alleviate anxiety.

The Birth Experience: A C-Section at 37 Weeks and 5 Days

The day finally arrived when I was to meet my little ones. At 37 weeks and 5 days, my doctor recommended a cesarean section. The decision was made to ensure the safest delivery for both me and the babies.

As the medical team prepared me for surgery, a mix of emotions washed over me—excitement, nervousness, and an overwhelming sense of gratitude. When I heard the first cries of my twins, all the challenges of the past months faded away. They were here, healthy and beautiful, and that was all that mattered.

Reflecting on the Journey: A New Beginning

Welcoming the twins had been the greatest joy of our lives. Every late-night feeding and every gentle coo was a reminder of the incredible journey we had been on. Living with cerebral palsy presented unique challenges, but it also taught me resilience and the power of love and support.

Questions to Ponder

• How can we better support individuals with disabilities through major life events like pregnancy?

• What steps can society take to ensure accessibility and inclusivity for all parents?

• How do personal challenges shape our experiences and perspectives as parents?

This chapter of my life has been a testament to strength and love. As I embarked on this new journey with my twins, I was hopeful for the future. Years later, I remain grateful for the love and support that carried us through. Thank you for following along and sharing this incredible adventure with me.

Diary Entry: Discovering I Was Pregnant with Twins

What a shock!

I had just found out that I was pregnant. The IVF worked the first time, and I was overwhelmed with joy. As soon as the news sank in, I instinctively started nesting, even though I was unsure how many eggs had settled in.

At 5 weeks, I fainted and went to the hospital, only to discover that both eggs had settled in, meaning I was expecting twins! The fertility clinic advised me to have scans every two weeks to monitor the twins' progress. This new reality was thrilling and daunting at the same time.

I had to pay close attention to my body, particularly because my cerebral palsy was affected by the pregnancy. The first trimester was a challenge, as I endured a full 16 weeks of sickness. My diet was limited to ginger biscuits and certain fruits I could stomach. Tea became a comforting ritual, and occasionally, I treated myself to a fizzy drink like Coke. Interestingly, I developed a sudden allergy to chicken and gold, which meant I couldn't eat chicken or wear any gold jewellery.

Despite the challenges, the anticipation of meeting my twins kept me motivated and hopeful. Each day brought new experiences and adjustments, and I learned to embrace the changes with an open heart. And could not wait to see how my body would cope with the changes.

Diary Entry: My Life After GCSEs Before the Big Step

Dear Diary, 

Today, I want to reflect on my journey since completing my GCSEs and how it has shaped me into who I am now. Transitioning to college marked the beginning of an exciting yet daunting chapter in my life, especially as I navigated this with cerebral palsy. 

Thriving in the First Year 

Looking back on my first year at college, I can’t help but feel a sense of pride. It was a period of growth and new experiences, and I truly thrived both academically and socially. The independence I gained was empowering; I learned to embrace the responsibility that came with higher education. I discovered that my cerebral palsy didn’t define me or limit my potential. It was a refreshing realization that fueled my motivation to push through challenges. Although I did still suffer from bouts

A Challenging Second Year 

However, the second year was a different story. It presented unforeseen challenges that I hadn’t anticipated. I found myself grappling with my second bout of clinical depression, which made everything feel heavier. The uncertainties I faced regarding my future career 

path compounded my struggles. I often felt lost, unsure of where to go next, which added to my anxiety. 

Navigating Uncertainty 

During this time, my thoughts often drifted to my dreams of becoming a mother and getting married. These aspirations felt distant, especially knowing I would encounter additional hurdles along the way. The path to employment seemed daunting, and the barriers loomed large. Despite the uncertainties, I held onto those dreams tightly, determined to make them a reality, even if I didn’t know how. 

Looking Forward

Through this journey, I’ve learned the importance of resilience and patience. It has taken time for me to become comfortable with where I am, but every step has contributed to my growth. I’ve come to appreciate the strength I’ve gained from facing these challenges head on. 

In my next entry, I hope to share how I realized my dreams of motherhood and marriage and how these milestones have further shaped the person I am today. Until then, I will continue to embrace the journey ahead. 

With hope and determination, 

Fresh chapters with cp.

Hey there,

Remember how I've been talking about my move and the process whilst having cerebral palsy? Well, I'm excited to announce a slight shift in focus.

While the move combined with cerebral palsy is still incredibly important, I'm going to be taking things in a new direction by discussing the life of a person with the condition. From a personal view living in a home that's either in process of being altered or already done.

Don't worry, this isn't a complete overhaul! But I believe this change will allow us to explore cerebral palsy in a more comprehensive way, and provide you with even more valuable insights.

Stick around to learn more about why I'm making this change and what exciting things you can expect in the future!

Topics that are going to be mentioned:

1. How I put on makeup.

2. Skin care.

3. Book reviews.

4. My favorite gadgets everyone can use.

5. Clothes I find easy to wear.

6. Techniques I use to dress if I can do it myself.

7. Aids I use daily.

8. Days out.

And many more topics.

Please do follow me on Facebook, Instagram and threads. There you will see what I'm doing on a daily basis. You can always ask me questions on the subscription group via Facebook sensible questions.

AFew Months!

It's been a few months since I moved into my final home. I had given myself a bit of time to recover from the amount of stress, uncertainty and energy that I have used over the last 14 months with all the moves.

Having multiple conditions and moving is probably more stressful than just moving. Which is stressful in itself.

There are many things which I never thought about growing up with the main condition cerebral palsy which I spotted in my 1st move. But never thought of it until moving into the final home.

Here are some tips to make the transition smoother:

Involve the person with cerebral palsy in the planning process as much as possible. This will help them feel more in control and invested in the new home.

List any accessibility needs to be addressed in the new home.

This could include wider doorways, bathroom grab bars, or a lower kitchen counter.

Start unpacking and setting up the new home one room at a time.

This will help to avoid feeling overwhelmed.

Familiarise the person with cerebral palsy with the layout of the new home.

This will help them feel more comfortable and independent.

Be patient and allow plenty of time for the person with cerebral palsy to adjust to the new home.

Some tips can be done during settling into a new home. The biggest one I discovered in the last home as I got used to the layout of the place.

As an ambulatory wheelchair user, there was one major thing I was suffering in the first month and that is to use my home helper trolley that I have for transferring from one room to another. So that I could adjust to the different surfaces of certain rooms and areas.

My kitchen, hall and bathrooms are laid with lino

and the living room and bedrooms are carpeted.

I'm still struggling a little bit three months on but I'm getting better. I know that it's ok and I know that I will get used to the house and area. I still walk gingerly around some places as I don't go out as much as I did before.

In a time of calm

What am I doing in this time of calm!

Well there has been a huge amount of upheaval with two moves in a month and the wait for knowing when that was going to happen. That took months to actually happen so I was completely stressed out. So in this time of calm I have started writing more and slowly but surely getting back into the swing of things.

What does that mean?

It means that I will be writing more and hopefully be more visible here. There are still days when endometriosis and cerebral palsy rear their heads and make things more difficult than I wish. That's ok though as I'm getting more help. So my mental health is stable. Although I have still got the odd bad day.

So what's changing here?

There will be a few book reviews coming in. A few more personal posts about my favourite things. I will do a few makeup looks that I can do. Meaning anyone can do them. My range of clinical depression will also be spoken about as I've only hinted about it in posts. Although my cerebral palsy and endometriosis will always be the main theme of my blog and somewhere people can learn about either condition or both. Because I feel that there is not enough taught about either of them.

The future?

The future is always uncertain but it helps to prepare a little bit. So learning about each age group of people who have cerebral palsy or endometriosis.

Why am I doing this?

I'm doing this now because I'm in a better place than I have been and feel ready for a few little changes on the blog. I also know that there are going to be more changes ahead so I want to write while I can. There's going to be another move but I don't know when. Writing while I can is another positive step forward too. Right now this feels good and I know that it's the right thing to do. Especially as I have now been acknowledged as a digital creator on Facebook and Instagram. Which is where I'll be found a lot. My Instagram name is @sweetestmoonuk.

My hope for the future!

My hope for the future is that I can be around for a lot longer although there is no set age for people with cerebral palsy.

Cerebral palsy at 50

Introduction

Cerebral palsy is a neurological disorder that affects movement, posture, and coordination. It is caused by damage to the developing brain, most commonly before or during birth, but it can also occur in early childhood. The severity and symptoms of cerebral palsy can vary widely depending on the extent and location of the brain damage.

While cerebral palsy is typically diagnosed in childhood, it is possible for someone to be diagnosed with cerebral palsy later in life. This can occur if the symptoms were mild or went unnoticed earlier in life, or if the individual experiences a neurological event later in life that exacerbates existing symptoms or causes new ones.

At age 50, someone with cerebral palsy may experience a range of symptoms, depending on the severity and type of cerebral palsy they have. These symptoms may include difficulty with movement and coordination, muscle stiffness or spasticity, tremors or involuntary movements, difficulty with fine motor skills, and problems with speech, swallowing, or breathing. They may also experience pain or discomfort associated with their cerebral palsy.

It's important for individuals with cerebral palsy to work with their healthcare team to manage their symptoms and maintain their overall health and well-being. This may involve physical therapy, occupational therapy, speech therapy, medications, and other treatments. With appropriate care and support, many people with cerebral palsy are able to lead fulfilling and productive lives.

And the following is about how cerebral palsy has affected me as I turn 50.

What about me?

As I enter my 50s later this year I am learning and preparing for the next stage in my life.

I have mentioned the previous decades in the following posts CP and Depression in your 40s, CP and Depression in your 30s, young adults with cerebral palsy and Depression, Teens with CP and Depression and finally Dealing with Depression and Childhood with cp. Now as I move forward with the next step I've come to realise that for me anyway that the changes I face in the future are going to be even tougher than now.

What am I planing?

I am mentally and physically preparing for the time that I may end up in a wheelchair permanently. Right now though I'm only in one when I need to be in places where I can't use a mobility scooter or walk, because of getting tired in the process. I have also moved home twice in the past 3 years because of the situation. And those I have mentioned in Urgh Again! And others.

Why now?

Because I am now nearly 50 and although it is very likely that I will be living a long time. There is just no guarantee that will be the case. And as the changes come quicker the older I get I would like to be in a position where I can just get on without worrying about what is going to be happening next physically.

At the moment!

I am in the hopefully penultimate home before anything really happens. I am keeping myself able as much as possible while I can but the changes are coming. The thing is as my daughter said recently you can fight but eventually you will be tired of fighting against everything. So I am preparing for that time.

Why?

Because I want to be able to live without too much worry and still have fun and adventure whilst my body tires and changes over time. And before I am stuck and unable to do things for myself.

Final thoughts

I'm not being morbid, I'm being realistic as I know that things will happen. And I want to live my life to the fullest within the limits I have now and the future. I will also be bringing you along so that more people can learn about the condition.

What has been happening?

Why have I been so quiet?

I have been quiet and only occasionally posting when I have had time or felt like you the readers needed to know. 

Well at the moment I am in a temporary home with my family. We had been given a place that wasn't fit for purpose with my cerebral palsy needs. But only stayed there for a week before being given a place that's ok.

What does that mean?

It means that for now we have somewhere to live. But we still have to look for somewhere else. It's not like it used to be here in the UK. Where you just got given a home. But that's ok as there are so many people who need homes here in the UK. People may be saying wow and that's ok. However, so many things have changed since I grew up. In my last post the bad days I talk about how the world has changed for the better regarding equality. On the other hand there has been an expectation for those of us who have disabilities such as CP. Which is that we are not expected to have a family of our own. But are expected to live in a home for disabled people alone or just as a couple.

Who is to blame?

I'm not blaming local councillors or authorities because it's not totally their fault. The highest level of government doesn't see us so doesn't expect it. I blame them because they have the highest power in setting laws etc. And as far as I can see they don't listen to those of us who have broken the expectations and done things differently. Like me by having cerebral palsy and a family of my own. Thus expecting us to have a one or two bedroomed flat. 

What have I been doing?

I've mentioned that I moved twice because of cerebral palsy in the last 6 weeks. The last place as mentioned is a better fit for me although not perfect. And over the last 4 weeks I have been settling in and getting certain things done. 

What does that mean?

That means unpacking what is needed and using up everything that we have but don't necessarily need consistently. It also means that I have been decluttering even more than before when I moved originally back in 2020. I talk about that move in urgh again.

What's next?

The next step is just to be grateful for what we have and make the next steps until we get the forever home or the one that is fit for purpose when it comes to the point that I end up in a wheelchair. And that's ok. 

What are the next steps?

The next steps are:

• Going to local meetings for people who are in difficulties.

• Look at privately owned homes where the landlords are willing to do work to adapt their homes. 

• Bid on homes on homechoice that are fit for me.

Now!

While waiting for homes to come up, there is nothing I can do but wait for other people to do their things. It has been known to frustrate me and it will for a while but I know that this is the best thing for now!