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's 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 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.

Make a list of any accessibility needs that need to be addressed in the new home.

This could include things like wider doorways, grab bars in the bathroom, 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.

There are tips that 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 the certain rooms and areas.

My kitchen, hall and bathrooms are laid with lino

and the living room and bedrooms are carpeted.

Q

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.

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!

The bad days!

What do I mean?

What do I mean by the bad days? I mean the days when the disability, chronic pain, anxiety and depression all throw tantrums in my face. The days that for whatever reason I feel that my life should be hidden.  

Those days!

Those days are getting fewer but I know that they will never go away completely. They are the most horrible days when all I want to do is hide and sleep until either the pain goes away or something else changes. And that's not going to happen despite my dream and wishes.

I don't want to die although in my formative years that has been the case.

When I was growing up it was the end of the generation where the children were told to be seen but not heard and the disabled were still put in care homes rather than out in society learning, doing and earning when they can.

It was a time when the lbgtq+🏳️‍🌈 community was also hidden and denied. 

Coming to terms!

Now there has been so much change yet nothing really changes at the same time.

In general most minority societies are accepted and yet there are times when we are expected to hide. Or other members of society are ashamed of us. And I think that will always be. Members who would rather we were still hidden or didn't exist. But that's not going to happen. I'm glad about that.

At the moment!

As I have said, things have changed, but not enough. For me the world has only taken a few steps towards equality for all the disabled.

  

What would I like?

I would love it if there was more equality for us regarding living in homes too. Because there's not enough housing for people who are disabled and have families of their own. It is almost like we are not allowed to be able to have a family.

What's happening?

What do I mean by that? At the moment it is known that we are in the process of getting a home that is fit for me and the future that may happen. This is the ongoing theme at the moment that I post about in posts such as In limbo waiting for the future. Especially as cerebral palsy causes so many changes as you get older with the condition. Those I have mentioned in other posts such as what is spastic cerebral palsy

 

What's next?

I don't really know what is next for the future for anyone let alone myself. Although I am working on some things that I need for myself. But I hope that there is more equality for everyone no matter what.

What about you?

So what do you think about this? What are your thoughts on this?

In Limbo! Waiting for the future

It can be difficult to feel like you are in limbo, not knowing what the future holds. However, try to focus on the present moment and what you can do to make your current situation the best it can be. Remind yourself of the things that bring you joy. And use this time to work on personal growth. The future will come when it is ready and you can use this time to prepare for it.

What does that mean?

It means exactly that! This may mean learning new skills, self development in any way. Sorting out the business you're in, getting the house in order for the next move or anything else that is needed.

For me!

This has meant having the house partially packed up. I kind of hate this situation. However, I am ready for whatever happens next in the sense of the house move because I am waiting for other people to do what they need to do in order to make my next step. That stage will be exciting. ☺️

What have I been doing?

I have been reading all types of books, catching up on TV shows that I have wanted to see and seeing friends. While waiting I have also dealt with some of my medical issues that I do talk about in posts. So that includes the main issue cerebral palsy, endometriosis, general anxiety disorder and clinical depression.

What now?

All I can do right now is wait until I get told what is next. It is frustrating but it is a good way to learn something like patience. And that is something that I have been doing since this has begun.and I will be seeing friends, reading, watching TV series I've not seen and wanted to as well. 

What's next?

Until I know when I am moving I will be working on my self development. This will be regarding my worth, use, patience and more.

So until then that is what is happening with my life with cerebral palsy and endometriosis. And that's ok for me!

Until the next post!

I hope you will read some of my posts and stick around for the next one.

Whoops it's been a while!

It's been a while since I wrote and did anything. Lots of things have been happening around me mentally and physically. I haven't been able to focus.

Lots of things are still going on at the moment. I’m going to have to keep this an explanatory blog post and audio. Because of the way things are at the moment.

I don't know how much longer they will be with all this going on, but I am doing little things through Instagram. You can catch me there. Also the occasional tweet. Those are the two programs that I use the most. You can always get me o

there.

It's been a bit difficult at the moment. I am trying to decide what's most important. I do want to do what I've been doing since 2015. A lot of things have sort of thrown a spanner in the works. And my plans haven't been able to be put into place because of what was going on.

2I'm in the middle of doing one thing that needs to be done right after Christmas time.

We just have to wait and see what happens next and then I want to move forward. Half this year has been rather tangential. I think. It will be for the rest of the year. Though I will tweet, Instagram, and Facebook as much as I can. Things have gotten out of my control. I can't do what I want to do right now. So is frustrating.

My health also hasn't been particularly brilliant, so that has needed to come into play and is more important than anything else.

I've been advertising, the things I've been doing very to a game again. Mainly so you can catch me there. As I said but you're gonna see a lot more of me writing next year.

Please excuse the yawn. It's been rather hot recently, I will get back to you soon.

xxx