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.

The new year ahead!

As we enter the new year, we have the opportunity to make it our best one yet. I'm sure we all have our own personal goals, but let's also strive to make this year a positive one for everyone.

Let's be kind to one another, show compassion and understanding, and be supportive of our friends and family. Let's also strive to be creative and come up with new ideas and solutions to any problems that arise. I'm sure this year will be filled with a lot of challenges, but if we approach them with optimism and a can-do attitude, then together we can make this year memorable for all the right reasons.

Wishing everyone a safe and happy new year!

My goals!

My goals for the year ahead are simple.

• To move to the right home.

• To write more posts.

• To write more poems

• To write some short stories

• To be back on air with your hits digital

What are your dreams?

My dreams for the year are to continue to learn and grow as a person, to stay healthy and active, to develop meaningful relationships with friends and family, to pursue my passions and goals, to give back to my community, and to be open to new experiences and opportunities.

What are your goals?

There are so many things that could be goals or dreams that you can have and they are not constricted to what the disability that you have.

Ok so the conventional ideas don't always work because of how cerebral palsy can affect the body. But that shouldn't matter because you as a person matter more than the disability. You are a person first and foremost. Who happens to have a disability.

Possible dreams

There are so many different things that I want to do and plan that I am doing them on a weekly basis rather than long term because at the moment that is out of the question. These include:

• finish packing up the house

• Start getting healthier

• Start being more proactive

• Unpack at the new house

• Get healthier food

• Read more

• Write more

And yes these coincide with my goals so be it. These are my personal ones as those are what I have wanted for a long time. But for various reasons I have not been able to complete these for a very long time.

Putting things forward

Putting things forward means to me making plans and goals shorter than a lot of people would expect as I can't plan as far ahead as I would like because of cerebral palsy. So my plans go mainly week by week at the moment. Although I have dreams that can be longer term but I don't see each step. Which I'm just beginning to learn at my age.

It doesn't matter what the dream is!

This is what I think is important the most because as I said in the earlier paragraphs it doesn't matter what your goals and dreams are. No one is the same and shouldn't have the same dreams as everyone is different.

So next!

It's the new year and there are new things to experience and learn from each day. And that's the most important thing to realise.

So there are positive and negative energies that happen daily. And you are stronger than you think and can do whatever you want. No matter what you have as a disability.

When everyone else's dream is not your own

It can be difficult when your dreams don't match up with those of your peers or the people around you. It's important to remember that it's okay to be different and to strive for something that is uniquely yours. 

Don't be afraid to take the road less travelled and to follow your own path. You may find that it leads you to a place that is even more amazing than you ever imagined.

So what is stopping you?

The biggest thing stopping me is feeling overwhelmed by the task at hand. I'm trying to break it down into smaller steps that I can focus on one at a time, so that I can stay motivated and make progress.

And this has been most prevalent with the move that is coming up. Which is why I have been mentally exhausted and unable to write or even record my podcast when I know that I should. 

But I thought while in a bit of nomansland regarding it I thought what the heck. And thought that knowing and accepting that my dreams are different to everyone else would make a good post. 

Realising that my dreams are different.

In my last post a longer wait than I thought! I mentioned the situation and what's happening so I won't mention it again. 

But realising that my dream is not the same as everyone else is ok. 

There are people who have disabilities such as mine, cerebral palsy, and are able to get the dreams that most people aspire to but I never aspired to what was expected of me by my peers. 

Because of the uncertainty of what cerebral palsy does to the body as you get older. Each case and person is different. It is also not very well documented about the adults who have cerebral palsy as it is considered a childhood disability. 

Which is why I am here to show people how the condition affects people on a personal level as I age. I have written previously about what happens in a broad sense in the seasons and how they affect the body with cerebral palsy. And its series.

There is so much more!

There is so much more because everyone has a reason to be on this planet. 

I think I know that my reason is to be a voice for those who don't. And to help those who have family with the condition. But they feel that they don't understand what the condition is and how it affects us from a personal view. 

And that's part of my dream to be that voice and bridge between.

What next?

So although it is a quiet and stagnant time. Along with personal feelings of inadequacy and depression because of the situation I really wanted to write this post and be positive for the future.

For the future?

Well this at the moment is completely uncertain. And I can't plan ahead too much. That is doing my head in to a degree because I can't. Then again I know it is a lesson that I need to learn. So I am taking each day as it comes.

My hope!

Is that there will be some sort of stability after the holidays and that the home that I have will be the one. but if not then it's ok! Because nothing is truly final.

So what is next?

My aim is to continue writing about what is happening throughout this period. And beyond because that is my dream.

A longer wait than I thought!

Why am I writing now?

The reason I am writing now is because there is a longer waiting period than I had thought or had hoped for. I wanted to explain why I haven't written for such a long time.

What has been happening?

I had thought we would have moved by now but that isn't the case. The local council has very limited housing and because the needs I have the number of homes are reduced even further. This has made things very stressful. I know that it's the right decision even though the timing is off in my opinion.

What's the plan?

For the next 6 - 8 weeks it is a waiting game. The reason is because of where we are now. Most of our stuff is packed up in boxes ready to go. We were to be leaving in late November. However, that did not happen. Then we had thought that maybe mid December like the previous one a couple of years ago but that's not happening either! Now we are not sure when exactly or where. Yet it will be within the next 6-8 weeks. This means that we are where we are for the holiday season. 

Feelings about it!

There's so many different types of feelings going on within me and the family as a whole. The feelings include the following.

• Anger
• Frustration 
• Worry
• Annoyance
• Acception 
• Excitement
• Happiness

All of these feelings are felt all at once and individually. Throughout the day and sometimes at night. Meaning that I find it difficult to get to sleep.  

All of these feelings are normal, I know. Yet they can really disrupt me.

Why?

This is because they turn my attention to them rather than what I want to do, which is either writing, recording my radio show or spending time with the rest of the family.

The meantime!

During this time I won't be writing much if at all during this time as boxes are everywhere and making me unstable. So I am just sitting, watching TV, reading, listening to podcasts, audiobooks as well as slowly getting ready for the move. And doing lots of self development stuff as the cerebral palsy has many secondary problems. Some of them are mental health issues and others are physical problems that have occurred over time. These include for me the following:

1. General anxiety disorder.
2. Clinical depression.
3. Panic attacks.
4. Bone damage.
5. Arthritis.
6. Post impairment syndrome.
7. Bone disfigurement.

Some of these have been life long and some of them have been arriving the older I get. These include:

• Bone disfigurement
• Arthritis 
• Post impairment syndrome.

What does this mean?

For me this has meant that with the stress of everything regarding the move has meant that my moods and physical ability has been restricted as I have either been trying to help pack up again or felt so awful that I have not been able to do anything.

What's next?

So while I am staying relatively quiet except on Instagram @sweetestmoonuk where you can find me daily.

More of the same craziness - with moving again!

 Things are a bit difficult at the minute. I'm writing this because of how things are. I'm thinking things through slowly. I've struggled with what's going on recently. We've got a date to move. And It's made it harder to think straight about anything.

We are doing the best we can at the moment as a family, but we're not doing brilliantly. I've wanted to write. I haven't bothered because I've not felt like it. Doing it by audio is the only way I think I'm going to be able to do it for a while and just everything through to make my blog post for now. 

Because of the way, the way messes are at the moment, with getting ready for the move. Which is possibly at the end of November.  I'm looking to get things ready but it's not brilliant. I felt so low with my cerebral palsy and frustrated because I couldn't do things. Which has contributed to my moods and lack of energy to think or even things I love.

Other people are not being as helpful as they could be. So yes, it could be better. It's difficult to do anything else because of the way things are. I want to make things easily doable for me at the moment. Things like having to think about how I'm writing everything through. 

Hopefully, when things are confirmed, I'll be able to do more writing for my blog. So as I have said, I'm using Instagram, having fun with that and trying to be positive. I am waiting for what's out of my control because of the changes with cerebral palsy, along with the things that are going on for the move.

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

Right now!

Hey!

I have been reticent recently regarding writing and doing my podcast episodes. This post is all about that.

Another apology!

Things have been erratic with me since having COVID last month. I have also been feeling a bit anxious and worried about things as I still haven't had an answer for something. My mind has been on that lately. Which hasn't been exactly what I wanted. Writing this post has helped me feel a bit better. However, I'm unclear in what direction I want this blog and podcast to go right now so while I'm thinking things through I will write when I can

The options!

The options are as follows!

1. Stay the same.

2. Change direction.

3. Only do 1of the things.

4. Stop completely.

There is one thing I don't think I can do is give it all up as I feel that explaining cerebral palsy and endometriosis and how it affects my life. Can be an insight for others and a solace for those of us who have either condition or even both. Yet I am uncertain what step to choose. 

Option 1:

This one I'm not sure about as there are so many different things such as make-up, skincare, books, music, food, and tech. Also suffering from anxiety and depression are other options. Just to write about the conditions although helpful wouldn't be as interesting for the reader.

Option 2:

This option I'm not sure about as I am not sure what direction I would take the blog and podcast unless I focus on one of the other topics I already mentioned.

 

Option 3:

This option would be just to write about one of the 2 main topics such as cerebral palsy or endometriosis. I think though this might be an idea again it may be a bit boring.

Outcome:

By writing this post I think that I will stick with incorporating everything to show that we are just the same as anyone else.

Your ideas:

However, I really would appreciate your feedback. So please leave your comments below.

A Normal Day in the life of Sweetestmoondust

I'm going to talk about what I do on a day-to-day basis blog and what I wanted to show you.  First of all, I set the alarm for 8 o'clock. The night before, I get up between half past eight and eight o'clock. because of my disability and it depends on what I've been up to. 

So if I am tired, then I ignore the alarm and carry on sleeping and feeling better. However, on an average day, I get up at about eight to eight-thirty and then do my skincare. Then I will get dressed and if I find it difficult, in the morning, for example, I've had a bad night, I'll ask my other half to help me because it's easier than actually doing it and quicker. 

Although I can do a lot of it, not all. Then I'll go downstairs and have breakfast.  breakfast will normally be a Herbalife shake or a breakfast bar or something like that. And sometimes I have cereal. Depending on what's going on is not always the same and then I will get on with a thing. 

Bit me, time is just a bit of silly me time. I'm playing a game or two on the phone, and my other half does a bit of what he wants to do for the morning. Then I will do more of my stuff, like starting to do my radio show. Like talking for the radio show for the day. 

I get my show for a week ahead. So I'm ready for that as well because it doesn't always happen that I can be available. So I tend to do it a week ahead and then I will work on my blog or have a bit of lunch. And then I'll go back and do what I need to do. 

As I said, it'll be so in the afternoon and after lunch. It'll be like having, social media work doing all the stuff like that for my blog and my podcast and radio shows. And also working on my blog and see. what my books are up to because I also write books, so they need to be advertised. 

I try to do a little bit of advertising for that as well, so that's all having to be done. And then it's usually about half-past four. I end up doing things like work clearing up, getting it cleared out, and getting ready for the kids. And when they come back from school because they've already left before I even get up most days because it's just easier that I then my other half has got one thing to cut focus on rather than three. 

So it's easier and then we'll have dinner together. All of us, you know, try and catch up on how the day's been doing what we've got. You know what we've done for school. What we've done each day and then we will be doing. Um, meanwhile half like to catch up together. 

We might have time to watch a movie or we might do a but you know, I'll read a book rather and he'll be watching a movie quietly or will be doing stuff for a couple of streamers that we know on Twitch and support them out a bit as well. They are rog3rbot and martocodo

And so that's what we do sometimes, as well. And that is mainly what I am doing on an average day. And if I'm not doing those sorts of things, it could be that I'm taking care of myself, bits and pieces. 

For example, yesterday it was my nails

and I have cerebral palsy. I can't have my nails painted by myself and I need someone else to do it. The same goes for other bits and pieces that I need to get done. So, I do that for myself, by someone else because I can't do myself care for that section. 

So it doesn't matter. So um and I'm hoping you enjoyed this sort of quick chat about what I'm doing on a day-to-day basis because I want to maybe do more like this and a few sort of reviews about it. So thanks and I will be putting pictures up maybe in the notes for what I'm reviewing. 

If I do a review of something, um, for example, I've got a few shopping hauls that I want to put out. So whether I'll be on my Instagram page or my Twitter page as well or Facebook even and that's the way around things as well that I will be using. 

So I have to do all those as well as advertising doing those hours, I get. So, you're talking more roughly about 10 in the morning, I'll start and finish around half 4 pm as full with a break and, and so I could be doing anything and everything between running the house and doing the social stuff that I like to do and advertising cerebral palsy showing that. We do things without too much of a hassle, but we can have a relatively normal life despite having difficulty of some sort.