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

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),

💓

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 of a Twin Pregnancy: The Second Trimester

 

Week 14-16: The Journey Continues

As the second trimester unfolded, I found myself both excited and anxious. Having twins meant there were more frequent check-ins with my healthcare provider. Fortnightly scans became part of my routine, ensuring that both babies were growing as they should. It was a relief each time to see their tiny limbs and hear the rhythmic beating of their hearts.

During one of these scans, I discovered I was carrying one of each—a boy and a girl. This revelation filled me with joy and a sense of completeness. It also brought on a wave of planning and anticipation as I began to envision life with my little duo.

Cravings and Nesting

Pregnancy cravings are no joke! This trimester, I couldn't get enough fruit and custard. Whether I combined them or enjoyed them separately, they were my go-to snacks. Sometimes, I'd even find myself daydreaming about the perfect fruit salad topped with a generous dollop of creamy custard.

Simultaneously, the nesting instinct kicked in stronger than ever. I started planning and organising the nursery. Each piece of furniture and every colour choice was meticulously considered to create a warm and welcoming space for the twins. I even made a list of local businesses to visit for unique nursery decor, eager to support our community while preparing for our growing family.

Importance of Community Support

Planning for twins is no small feat, and I quickly realised the importance of leaning on family and friends' support. I was given odds and ends such as bassinets and cots ready for twins, as well as clothing, which helped me feel less alone on this journey.

Weeks 24-26: Reflecting and Looking Ahead

As I moved further into the second trimester, I reflected on how much had already changed. The twins were growing steadily, my cravings continued to shape my diet, and the nursery was coming together beautifully. I felt a profound connection not only to my unborn children but also to the community around me.

Questions to Ponder:

• What role do family and friends play in easing the journey of expectant parents, whether they have a close-knit family or not?

• How do personal experiences shape the way we prepare for major life changes?

This journey has taught me that the support of a community,  with the joy of preparing for new life, is invaluable. As the days pass and my anticipation grows, I am grateful for every moment and every helping hand along the way.

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.

Clinical Depression With Cerebral Palsy

Cerebral palsy is my main disability but as I have mentioned for me clinical depression is one of my secondary health concerns.

More often than that though it is the feelings because of my disability that cause me more problems.

It causes me to feel like I can't be bothered to write or anything. I can't even read or watch TV. Sometimes I eat as much as possible or nothing at all. Which in turn makes me feel guilty for not doing anything. This means that it often is a vicious cycle and why I have not written much.

The move and settling in to my new house has caused some unforeseen problems physically with my body and cerebral palsy which is why I have not written as much as I would have liked or needed to make this site professional or financially respectful. 

However I don't do it for the money, I do it for the chance to teach people about life with cerebral palsy and what comes along with it. So in the next series of posts I will be going through how both bits affect me. I hope you get information about how one or both affect my life. And maybe understand both or just one of the conditions. I hope you learn or understand a bit more about life with cerebral palsy and what comes along for me. 

A new direction again.

I have written many posts about cerebral palsy, and moving homes several times. Particularly the new home and everything else to do with it.

I only lightly touched one. The big thing that has actually been causing problems recently, and probably over the last few years, is the depression side of things.

Yes, I was getting ready for a move. Yes, I was in emergency housing here in the UK. For over a year. It wasn't perfect. Many people have bigger problems than me. And I was grateful for having a place to stay when I knew there were other people who needed and still need them. That chapter has now been and done.

I'm okay on that side of things now, but I'm still having depression episodes. I wanted to talk about that today as it's a way forward to writing things down and clarifying things.

I seem to only show I'm feeling great on a day to day and I wanted to talk about cerebral palsy. More often, the depression side of things has kicked in more than anything else and I think that is going to be the way that I'm going to write forward. Which is why I haven't been writing posts as much as I should.

It might be a way forward because it can be so depressing sometimes. I don’t always know what to say . Some people have begun to understand cerebral palsy now and it does change from day to day, and I will be talking about it.

But as I'm in a safe place, a place I can be safe even if I fall. I feel more comfortable meaning I will be more involved in the depressive side of things, because it's not so great. I don't know what everyone thinks about that for a new direction.

I had hoped to be more positive. But with things being the way things are.

I'm wondering if it is an option to go through and wondering what everyone else thinks. Then again I'm not sure that the emotional and mental side of things are really mentioned either.

Despite the initial discussion on mental health for everyone.

People with disabilities are often lumbered with mental health issues as well as the physical. And that's not often talked about. I hope to just shed a little bit of light on these issues.

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.

A new place

A lot has happened since. But here I am.

A different place. Older and wiser than before. New things are coming slow and steady. Other things keep dropping off. I have learnt a lot over the last few years. Knowing that life has always a way of doing things to change your plans no matter what you want. It's ok though. Learning is what life is all about. In some ways life has been harder but in others it hasn't.

You think life is going one way then it shows you a different route. Sometimes they lead to a completely different place and sometimes it might just be a loop or bump in the road that either speeds things up or slows it down.

What's next ? Who knows. All that can be done by me is being done and the rest is out of my jurisdiction. The wait can be a problem but the best thing is to channel energy into other things. I'm trying my best to do that very thing. Yet there are so many distractions. Some are welcome, others are not.

What is left to do? A bit of clearing out. Not much though! Everything I had asked for is coming even though there have been difficulties. Some have been huge and others small. They all have challenged me most definitely. 

One of the things I have struggled with is patience. There's a saying ”patience is a virtue” and I know that it's one I wish I had. Especially when it's to do with things that are out of my control. Have you ever had those types of feelings? I know I have!

How do I deal with those feelings? That depends on what I'm wanting to be done by others. I know people probably think I should be doing everything. I can't however. It doesn't mean I don't want to. Just physically I can't.

You see, I'm an ambulatory wheelchair user. I used to do almost everything possible as a child and young adult. The older I have gotten, the less I have been able to do. There are many people who are like this. Not just me. 

Frustration is forever changing because things I could do a year ago. Now I either struggle with it or can't do it anymore. And things change. And as a person either accept the change or become more maudlin and then depressed. It's never easy to accept things about yourself as a teen or young adult. And if something happens while getting older. 

There is always the question “why me?” The question should actually be “why not me?” Or “what can I learn from the situation I'm in?” those questions are a better way. 

Because there's always something you can learn. Sometimes you may not be the one who needs to learn something but you are the one who is there to teach someone else something.  

Someone said that if you don't learn something the first time around then you are given multiple challenges until you learn what is required. 

The two things that I have learnt in my life so far is acceptance and understanding.  There are a few more things that I need to learn successfully. Such as listening, patience and the ability to stop worrying about things that are out of my control. Those things are not easy to do. I'm trying though. 

What do I want for the rest of my life? I went through a phase of doing things that are not really me. They gave me a new set of skills which is great. I know that those skills are going to be useful, however I'm not ready to use them properly yet. I know I will just not now. But I am excited to be doing what I'm doing. Especially as this is something I love doing but have not felt quite good enough to do it again because of my disability and other life situations that I had no control over. 

What is it that I can do for now?  Obviously I need to do physio and gentle exercises but what can I do?

Well there's been a few things that have changed since the beginning of this. There has been a massive change in the sense of two different moves. One was a temporary move because where I had been was not really good for me. The other. 

The other was the final. I'm finally settling into the new house but there's a few things that need to be done. And once they're done I'll feel more confident in the house. The other big change is the area of where I'm living.

It's a quaint village that has old buildings but the pavement is not really good enough for someone who is an ambulatory wheelchair user, or someone who is wheelchair bound. I need to go around on my scooter and get to know the area. However at the moment I'm stuck using a scooter which is totally not my type. Even if the colour is my favourite. Which means I'm stuck indoors until mine is repaired.

Luckily there's still some things that need to be done. Before having people around.

What now?

The last 3 years have kind of made this world more individual in my point of view. The last three years have been a time of great change, progress, and challenges. 

From political upheavals to technological advancements, the world has experienced a whirlwind of events that have shaped our present and will continue to influence our future. 

In this blog post, I will take a closer look at some of the most significant events and trends of the last three years, analysing their impact on society, the economy, and our daily lives. 

I will explore topics such as the rise of the 3 Prime Ministers,, the COVID-19 pandemic, the global political landscape, and the growing awareness of social and environmental issues. 

Join me as I delve into the past three years and uncover the forces that have shaped our world, particularly within the social group of disabled here in the UK. From a disableds point of view.

The 3 Prime Ministers of the UK

There were 3 people who have been prime ministers here in the UK. If you have been under a rock or you are reading this decades in the future. They are Boris Johnson , Liz Truss and Rishi Sunak.

Boris Johnson

Was the first of the 3 and had to deal with the outbreak of the pandemic 0f COVID 19. There were so many mistakes that this person made. Many of which they will deny. One of the biggest was that they denied having a gathering of members in the garden and house no's 10.  Where the prime minister lives. When there was a lockdown here in the UK and most of the world. You can learn about him elsewhere but not here. Most importantly he was the leader of the conservative party at the time.

Liz Truss

Will be known as the woman with the shortest term as a prime minister. With only 55 days in office. She was forced to resign because she was found unable to do the job she was set to do as the leader of the conservative party. She also was one of two leaders of the United Kingdom who saw two different monarchs. Queen Elizabeth ii and her son King Charles iii. 

Rishi Sunak 

Is currently the prime minister although he had been the chancellor executive of the UK during Boris Johnson's time as prime minister. 

In my view the whole of the government, particularly the conservative party, does not listen to the minority groups of people such as the disabled and poor. It seems to be only looking after the rich and selfish. And because of this attitude we are not heard so I use my voice to make a bit of noise .

COVID 19 Pandemic 

This has been a running thread through my blog whilst moving house originally. As an event for me. I treated the time when we were on lockdown here in the UK, as winter because of the way the weather affects me. This meant that despite not catching the virus until last year towards the end of the actual pandemic. I stayed indoors more often than not. It did make me feel more claustrophobic than normal. This was because I was having to stay in even when it was nice weather in the winter. 

The government here in the UK didn't acknowledge that even the mild cases of cerebral palsy were allowed to go out when technically we were not meant to. Because of the fact that cerebral palsy is a neurological condition and the side effects of it are felt throughout life. It was at your own risk if you went out. I decided to stay in during those times because I just wasn't sure what the effects were going to be for me and I wanted to be there for my children as long as possible. In the end it did get me but I was extremely lucky because it was a mild case and I had had 3 booster injections to help my immune system. 

The virus is still around and I think it will be like the flu. In the sense that it will be a major problem in certain seasons such as winter the same as the flu. So I will be having the injection to boost my immune system in order for me to live as long as possible.

Technology:

There have been so many things that have been boosted technology wise particularly things like zoom calls and online meetings. Previously these were held whilst in offices across the world but now more and more from homes. Although there are people who are going back into the office, there are many who won't. That could be for any reason. Which means that the financial crisis has been pushed through particularly here in the UK at the moment where the people who are poor or disabled. Although the financial crisis is world bound because of what had happened because of the pandemic. And we are technically coming out of it. 

So what's next?

Who really knows?

What do you think?

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.