Here and Now with CP! Life as it Happens with the Condition!

 I've been in this house, seven months now. I love it. I am used to being able to walk around a lot more easily and do more things for myself. It's so much b8igger than my original home But I would be silly enough on Friday to slip on a wet floor. That's what anyone can do.

So at the moment, I've got a top bigger top lip than I would normally have. I love it, but I wouldn't go down the operation route for it, I don't like injections or anything because it can go wrong that way unless it's done professionally.

Anyway, I have been quiet because of things going on around me, and I've been very worried about things going on as well. And life has taken over. Unfortunately, which is not what I wanted to do.

But I think in times of healing. Everything else has to go out the window, and it doesn't matter what you think is going on in your head or personally need to be able to do it quickly, or for as short long a period as you need. So if I do go quiet, it was because I'm going through a state of not being brilliant, and I'm just wanting to get on with getting things organised on one going life-ise and making myself feel a bit better.

Today, I managed to put a bit of primer on my face. Maybelline Baby Skin Pore Eraser is my favourite. It's so like the benefit one, but much cheaper. I love it, it stops me from feeling sweaty.

So I've realised, I'm just gonna keep using that, even if I don't wear makeup every day, I might just wear the primer to start with, because although I love makeup. I haven't worn it for a long time. I’ve not felt as if I've been well enough, mentally to do it, because of the way. I have been stressed out panicked about other little things that are not worth worrying about.

But they still make me worry about them, but also things in the family have been going on so I've been concentrating on those two. I know that I should probably be writing the video and everything else, a lot more emotion than I have been. I will try, but life gets in the way as I had said to you before.

I wanted to do it this way so that I didn't have to make it such a stressful, feeling for myself this Sunday, via the phone. And yes, to everyone else in the house, I'll probably look like a complete idiot talking to myself over the phone. But actually, this is a speedier way of me writing everything down. Doing anything else, because I can edit what I said. For the posts that I do for my blog. And I can keep it real on the audio and video because that's who I am not some kind of portrayed as someone else.

After all, this is the other thing I've been thinking about recently, and it's being true to yourself and wondering what is true to you and what do others perceive of you, or expect of you, because for a very long time and I mean a very long time. I have been. Although, trying to be me. I've always been what everyone else expected doesn't need to be. So, it's nothing, not been easy and I'm beginning to go through that process of thinking, Okay, it's time for me to be me and find the level of exception, except citations that I want, or anyone else wants because no one else matters in that respect because

it's my life, and, and, yeah, it's not what everyone else expects me to do.

But it's what I've wanted to do. I've noticed certain things that I've thought in their dreams that I've thought about a long long long time ago. They're slowly coming to fruition, you know, there have been things that have been stopping the flourishing of the plans because of other people's meddling or life generally getting in a way, because people think they know you better than yourself, which, which isn't the truth. After all, I know you, you know yourself.

If you can't get any feelings for yourself to accept and be who you should be, then you're you'll always be the one, what everyone else expects you to be what they think. Being honest to yourself and truthful to yourself is the most important thing because I'm slowly beginning to learn that people who I, thought was very, what I thought were important, are not very important at all.

After all, they don't understand my situation properly. I have been worried about that. But I'm gonna live my own life when I wanted to because it's important for me to do it the way I wanted. Not what everyone else expects.

I have been pretty lucky is what I've got and done and because a path from cerebral palsy is not expected to have a family, not expected to get married or have children. They are expected to be cared for by their parents or expected as I say to be put in a home, or something else. In my case that isn't because I am married, I'm happily married and have a family, and I'm very lucky and there are lots of us who have got so cosy who do have this chart, and have this in my blog, I have talked about ages. And what disability does throughout the ages! Challenges ahead part one and Challenges ahead part 2

But this is just a general to chat about today. Because of the way things have been this last week or two what I'm suspecting is the beginning of the hormone situation where things are changing because but we'll wait and see what's going on with that as well because it can take ages to find out what's going on.

You know what, though it doesn't matter. I'm happy, I'm safe, I know where I am, I know who I'm with. I also know that it's going to be okay in the future. Although it might seem to be boring or stressful waiting for the future or day by day, I know it's going to be okay. I know that it's going to be fine at times but the disability of realising has problems in some respect. Anyway, so it shouldn't be a problem.

Because you wonder, people who have lots of money are happy or the because they haven't got everything else that they want people who have minimal money are very happy because they got all the people that they want, but may want some actual stuff but that they not necessarily can afford right now, it doesn't mean they can't have it, it can be a gold small goal to have in the future, or whatever. I'm gonna leave this one because it's I'm rambling again, I'm not making too many points in this post.

So I need to split them up, I think, talking about each topic at a time.

Argh! maybe this isn't right? disabilities are not heard or seen!

 it's been one of those days, or rather just a few weeks where things have been a bit difficult for me. First of all, it was the Easter holidays. And my family. There was a couple of birthdays that were coming up that I needed to deal with before going back on to doing some more podcasts.

But as we all know, life gets in the way. So that hampered my plans. I wanted to get things sorted out a bit more with the way things were going regarding Sweetestmoondust style, website, and I wanted to be more clear on what we stand for as a whole. Because people are not realising what cerebral palsy is, and not knowing what we can and can't do is a real issue.

When we're out and about, many of us can walk not always stably. We will be using either crutches, walkers, some of us can walk without, but still need some help support, you know, with people around us and may get anxious and have slight anxiety because too close to someone else, or something like that. Others are in wheelchairs, whether they be manual pushing along themselves or having people with them to support them.

I wanted to make it clear that Sweetestmoondusts style is regarding any disabilities, as well as my own, which is cerebral palsy.

I'm wanting to advocate more for people with this condition and others. Many of them are not counted at all and don't have the voice that they need.

There are so many of us that we are forgotten about. We are the forgotten few in a way because sometimes a disability is so mild that it doesn't register very much. Then, at a later date, in our lives, it will come more and more relevant and prevalent. Because we will be tired quicker, but we will be still wanting to do things. And get more frustrated

not being able to do them, or having more and more struggle doing them and then having to ask people for their help sometimes.

We want to ask sometimes we don't. Sometimes we don't want that help. We don't want to look as if we're being ungrateful. But independence is there negated because we are the same as everybody else. And that would need to happen. if you've got asthma, you don't want to be treated by anyone different from someone who doesn't have asthma. You don't want to be treated any different than anyone else who's got glasses if you don’t want to be treated any differently.

Yet with cerebral palsy, it just happens to be a slightly more physical situation where it can be harder for us to either speak or relay our meanings across. I will stutter or I'll slur or I'll hesitate slightly longer than I should. Those are because of the way that I'm trying to get things out or I haven't had the right wording in my head even though I may think my voice might say something completely different from what it means. I'm wanting to clarify things with people because this is what Life with Sweetestmoondust is all about.

I will be putting up videos regarding makeup skincare, how we do it or rather show I how I do it because of my disability what I love by tech-wise what I do

I have written a few books “The monster within” and “Questions” and “More Questions”. I think with things like that, we can show that we are relevant in this world because it doesn't mean that we can't do things it means that we have to do things differently from everybody else. I want and hope that this world can be treating people of all races, all colours, all nationalities, disabilities, as the same, we needed all to be equal. In that respect, yes, we are different, and everyone is different. I'm being passionate about this, because, whether you be coloured or white, as the saying goes, but we're all different colours. We've got people who are albino, white, and then you got people who are pink, who are brown and everything across.

I don't see the point of taking the Mickey or being nasty about someone with a different race, different colour, different disability. Some people can't use their hands, they can't use their feet, sometimes they can't even talk. And that's someone I want to advocate for. The people who can't get their message across and who can't do what they want to do because they are stuck in their heads, not being able to express what they want to say properly, and may have to use a computer screen as Stephen Hawking did. Or hand movements or eye movements, or whatever the situation is, they need to be shown that they are valid, wanted, needed.

I'm really worried that with everything going down at the moment it is crazy.

I've seen recently locally in the UK, that there have been people in wheelchairs struggling, especially with seating outs, you know, when people are wanting to sit outside, which is great. But is it worth struggling? Because they can't get through their streets because we can't walk past I say walk, but you might say, go pass in a wheelchair or whatever. But it's, that's, that's the thing. We need to be showing that we are valid. And we are important.

We can't be shut away.

We don't need that. We need to be told that we are needed. We can do things and I will keep saying that because it is so important. Life for everyone is important. And that can't be shied away from for anybody.

Having cerebral palsy is just an aspect of me, not the whole of me. I'm wanting to get things said locally, nationally, internationally. I managed to get a crossing done for our road nearby because there wasn't enough safety. It wasn't just for me but for anybody else who's disabled. it was for families, mums kids, elderly who couldn't get across the road safely without being hit by a car coming from a four-way direction. It makes it ridiculous when you have situations like that here in the UK. When people have forgotten about us or don’t care. Because we don’t exist in their eyes.

I have gone on my mobility scooter into town where I am. And there are times when the pavement is so uncomfortable you feel like you're being thrown out of the scooter. I can imagine what it feels like for babies as well because they've been rocked. I guess it might feel nice.

They might feel like they are being rocked to sleep. But the adults and children who are being pushed in wheelchairs and scooters. They're feeling every bump going across uneven pavements is not comfortable.

we need some more smooth surfaces, helping to make it easier. It also helps people who are not unable to walk but need help. it keeps them safe. Whether you're disabled or not because you know the moms who have been pushing buggies and they are not safe sometimes. They have difficulty getting past trees walking down a road or they could be going down the road and there isn't a dropped curb. It will be difficult for either the buggy or mobility scooter or even the wheelchair when it's often blocked. There are lots here in the UK where people have forgotten that actually, we need to be heard and seen. All the drop down curbs needs to be available for everybody, not just people being lazy parking their cars in front of it.

But that's why I'm doing this.

This is why I've decided that I'm going to be doing videos from now on and I'll be doing podcasts and my blog office which is Sweetestmoondusts Style because it's about the style of life. And I want it to be stressed heard and it's not a lifestyle is a style of living. And I'm strongly wanting to get that across. Everybody needs to know that we are the same as anybody else. Over the next few months, I'm hoping to be doing them. Maybe a reading from one of my books regarding the poems and equality regarding that and saying what life is about as a person with the condition.

There are some great other people who I would love to interview and I will do via podcasts, which will be available only on the podcast and there'll be others that will be done via zoom that I'm hoping to get in touch with all sorts of things.

I'm just starting again after many, years of a break-up from doing things like what I used to do. I'm trying to get things sorted out a bit more, positive.

Learning who you are! Disabilities do not define who you are as a person.

 

Thinking about the questions will bring out the person who you really are. Because being told who you are and what you can do does not make you the person you are.

Who are you?

You are a person, human with bones, blood, skin etc. You have your own thoughts and can do certain things that every person can do. Such as beating heart, breathing and thoughts of your own.

What defines you?

The things that define you are your own thoughts. Not just what can do. It's not what people think and what they think you should or be. So the disability does not define you either.

What do you want to do?

What are your dreams and aspiration is basically what this question is. Because those are really what you are. As your brain is where your own limitations are. And are what you have. And as a child, you don’t see limitations as a person physically or mentally. It is only when the people around you tell you what you can or can’t do. Then it is learning what the body has is the main limitation. You have to learn because if you set your mind to anything you can do it.

What can you do

This is the question that really should be what can your body do? Then decide what you can’t do. Because you are amazing!

What can’t you do?

What you can’t do is really what can’t your body do? Because these are the things that limit your life and what you want.

What do people think you can do?

Is really a question you should ask the people around you. Because you know what your own limitations are. Both physically and mentally. You should be able to do anything you want with aids to assist you in your dream because people should be educated to show that the disability does not define you.

What do you believe you can do?

This is where you can really think about what you want to do and physically actually do on your own or with help.

What do you expect to do?

This is where you have to be realistic because of what society expects of you no matter what you can do on your own.

Final thoughts!

What I am trying to say is that you are the only person to listen to. Because you know what you are capable of both mentally and physically. No one else is knowledgeable about your own body. Yes, they may know about the condition and what may occur. However, they don’t live with the condition day-to-day and get the tiredness. Or the pain that comes from day-to-day living with the disability. Which I have posted in

No matter what you feel like as a person and how you are living. You are important and valuable as a person being able to show that even with a disability you are worth a lot. But you have to get people to understand what you really are capable of.

I’m writing this because there are times that I’m fighting to actually show people what I’m capable of rather than being treated as a person who can not do anything for themselves. And this is why I started this blog.