Sunday, June 4
Monday, May 29
Sunday, May 14
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.
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.
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.
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.
Sunday, April 30
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.
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.
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!
Sunday, April 23
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 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 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
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?
Sunday, February 26
Sunday, September 18
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
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.
Sunday, July 3
I have been reticent recently regarding writing and doing my podcast episodes. This post is all about that.
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 are as follows!
Stay the same.
Only do 1of the things.
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.
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.
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.
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.
By writing this post I think that I will stick with incorporating everything to show that we are just the same as anyone else.
However, I really would appreciate your feedback. So please leave your comments below.
Sunday, June 5
It has given my cerebral palsy and endometriosis problems. However, the problem I'm having is with my legs and the pain from the muscles and everything else, but it doesn't matter so much. I've had to give up my radio for a little while, just to make sure that I'm well enough.
Because at the moment, I'm not able to do anything really without trying, not to scream in pain because it's so painful, what I wanted to do was that I could perhaps do things a bit more easily and it seems to be the only way that is helpful for me at the minute.
Um, so I'm able to write and record at the same time. For this while, I'm resting as much as possible, but I've never had anything so bad. As this with COVID, it's ridiculous. You know, I'm lucky that I had the boosters and I had everything else.
And with the conditions I have, it can be a lot worse and I wouldn't want this on anybody. It's not because my voice is a bit croaky. But I just feel very achy all the time in my legs. I've just begun to get my sense of smell back and taste.
These are only just a few of the problems. I have an upset stomach because of it as well. I've had lots of other things as well. it's not pleasant but I know that it's gonna be over soon enough and I'll be fine. I mean having too much of anything breathing wise, despite having asthma, you know.
Sunday, May 15
This is a quick podcast and blog post because of what has been going on around me at the minute.
I want to do that more than anything, I want to make sure that there is enough content for everybody on both my blog and my podcast. Because it's a lot easier to do things this way. Anyway, this is what I'm doing from now on and I'm gonna try and do it daily and skip prepping up so that you get it weekly on my phone and because it's not on the How can I put it? laziness as my energy goes as the day goes on and I end up just completely flagging.
I can edit it out and work on it so that I don't have to stress out over everything all the time and then I can add it as a post as and when I need it. I'm going to start with just a quick quiet one because I don't know if it's gonna work properly.
Today. I'm waiting for a member of the family to finish and then I can get on with what they need to do with them. I'm looking forward to seeing them anyway. To make sure that everything is correct and everything else.
This seems to be the most sensible way of doing things where I can edit the way things are for me and maybe I won't feel such a lemon sitting in the front room or the office, doing this with my husband around as well, but maybe I will, maybe I won't, I don't know!
Hoping everyone had a great Easter and in fact so that I can do more things here. Anyway, what I would like to do is explain a bit more about what is happening with the change around. I'll be editing things to make it into a proper blog as well, so it makes more sense.
At the moment I'm just blurbing around and messing around with my system because it makes more sense for me to do it this way, even out and about because of the way things are here with me and purposely doesn't always make it easy for me to have a good day.
And neither does endometriosis because of the way things flare with that as well. And endometriosis is just as bad as cerebral palsy because of the way they combine as well as being organized with exhaustion. There are days when I feel fine, but then an episode from endometriosis will flare and that will cause an issue, meaning that I won't have the energy to do anything.
I'm thinking of doing things like this a lot more often and doing it that way. If I was to do more posts like this, it would make it a lot easier, I think. And I look as idiotic as I like a cafe dreaming and daydreaming about things. So here we go.
And I'm quite enjoying this at the moment but I don't want it to go on too long if this is just going to be a beginning one so that everyone can realize that I am a real person and just like with everything else I don't always have time for everything although there needs to be some consistency.
With endometriosis and cerebral palsy combining at times. It means that I don't have the energy so this might be a better way. Let's see what happens.
Sunday, May 8
Disease or Condition
So there are various ways that cerebral palsy has been boxed as either a disease or a condition. Below are the definitions by dictionary.com of each word or group of words.
a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavourable environmental factors; illness; sickness; ailment.
any abnormal condition in a plant that interferes with its vital physiological processes, caused by pathogenic microorganisms, parasites, unfavourable environmental, genetic, or nutritional factors, etc.
any harmful, depraved, or morbid condition, as of the mind or society:
His fascination with executions is a disease.
decomposition of material under special circumstances:
a particular mode of being of a person or thing; existing state; situation concerning circumstances.
state of health:
He was reported to be in critical condition.
fit or requisite state:
to be out of condition; to be in no condition to run.
a form of paralysis believed to be caused by a prenatal brain defect or by brain injury during birth, most marked in certain motor areas and characterized by difficulty in control of the voluntary muscles.
As a person with cerebral palsy, I don’t consider it as a disease as it's not like an illness such as a cold or cancer which has two different options of either getting better or not.
I use those examples as the simplest form of the disease because they are the most common. Although there are many more.
But cerebral palsy in my point of view is a condition as the initial brain damage has already happened but its secondary effects continually change as the person gets older.
It also means that there are differences in every different case of cerebral palsy and there is no way to cure a person with it. Whereas with a disease you can be cured or not. But a condition you live with.
And things change daily and you either have a good or a bad day. And you have to continue with whatever you are doing. The same goes on with people with fibromyalgia or MS and other lifelong conditions. Whereas someone with some types of cancer has limited time, not decades. Although that is possible.
The Effects of Cerebral Palsy
I talk about those throughout the whole of this blog as I live with the condition and the following is a list of some of the posts
And many more just check them out.
So you see it's slowly changing as the effects are less evident unless the initial brain damage is severe enough when the cerebral palsy is spotted. Especially if the condition happens as a baby during the early months. Or when it occurs from an accident later.
But also seasons and age affect the way cerebral palsy reacts within the body. This is mentioned in the series of posts that started with The Seasons and how they affect cerebral palsy.
I hope you see my point of view and understand why I class it as a condition, not a disease.
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