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.

What A Week! My week with Covid19

 

It was a wicked week. This has been for me, I'm doing this off my phone as usual because I've been hit down with the dreaded lurgy. Otherwise known as COVID-19. I'm day six and I'm still positive. It's probably the worst thing I could think of ever, you know, the added issues. 

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.

A Pivot in the background because of Cerebral Palsy and Endometriosis

 

Well Hello!!!

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.

Cerebral Palsy A disease or condition

 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.

Disease

noun

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:

Condition

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.

 

Cerebral palsy

noun Pathology.

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.

My thoughts

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

What is spastic cerebral palsy?

Ataxic Cerebral Palsy What is it?

Life with diplegic mixed cerebral palsy

Common Questions for me

And many more just check them out.

Final Thoughts

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.

A Smal Change

 When it was regarding this, I wanted to do a quick podcast and blog at the same time using Recording. So that I could actually be more productive and make sure that I have enough time for everything else throughout the day.

I wanted to talk about how things have really changed for me regarding things because life is a lot harder having any disability such as cerebral palsy which I have.

I also wanted to talk about how things have changed for me recently, as this is a general post for this week and I wanted to make sure that it was clear that I was talking about the changes for me. That's why it changes for me, at least. So I had started with Herbalife a while back. which is in Three Weeks With Herbalife. And I will be putting a stronger, more impactful post about that in the future.

Another one was to do with the way that exercises are to do with me as well. Which I've also mentioned. So my goodness. What a change, things have been. After a year of trying to get anxiety out of my situation and just living through a pandemic and a move, I felt better just living and trying to de-stress throughout that entire time. 

During that time I found that Fitbit was actually able to do exercises on top for disabled people now rather than just able people. So I have been doing a few of those exercises and made them my favourites on the app which you can get from Google Play and Apple iOS. 

And they will be put out on another exercise post that will connect to the original one that was done during the pandemic. Which is here exercise or no exercise. Here in the UK, we are coming out of the pandemic and back to almost normality.

Does cerebral palsy affect intelligence?

This is one of the most common questions I get

So what do I mean by that? 

Well, as mentioned before in this blog. In various posts such as life with mixed diplegic cerebral palsy What is the difference between us Learning who you are! Just to name a few. And quite honestly the answer in my opinion is no! 

My reasoning for this?

Just because someone has the condition does not mean they are going to be of low intelligence. A condition of  Cerebral palsy is a form of brain injury. Not a person's intelligence. 

What are the main functions of the cerebrum?

 

The largest part of the brain, the cerebrum initiates and coordinates movement and regulates temperature. Other areas of the cerebrum enable speech, judgement, thinking and reasoning, problem-solving, emotions and learning. Other functions are related to vision, hearing, touch and other senses.

Meaning that cognitive parts of the brain are affected by cerebral palsy but it doesn't mean that we are low intelligence because we have to think things in a different way.

Many of us are teachers, university staff and much more. If that was the case there wouldn’t be people who had the condition but were in these jobs.

There is this misconception that because we have a disability it means that we have low intelligence. And that is just not true!

That would be like gagging people of all types by what they can do, not how someone thinks.

To show another example of this would be professor Stephen Hawking. Who, although had Motor Neurone Disease (ALS) was able to teach and research at the prestigious University in Cambridge, United Kingdom. Until his death in 2018. His IQ was 160 which was the same as another theoretical physicist Albert Einstein. He is most famous for his theory of general relativity. 

So although Stephen Hawking was physically disabled by Motor Neurone Disease it did not take his ability to think away. This would mean that as the disease took hold then he would have been put in a care home never to be heard of in the first place.

Therefore cerebral palsy is a condition that affects the brain and the body physically. It does not mean we have low intelligence. 

Societies angle.

As far as I can see from a personal point of view it is the generations before who have thrust their opinions on all disabled, not just those of us who have cerebral palsy. But every type of disability.

What do I mean?

Right up to the 1980s here in the United Kingdom people who have any disability at any level were put into care homes. 

It was even evident during the 1990s when I was out with my now-husband we heard an old lady say that in her day people were put away.

We were put away for being different and deemed simple-minded just because our limbs were not able to be used the same way.

And unfortunately, the lingering thoughts of having disabled people put away is still being considered no matter how badly a person is physically affected. Because being disabled is not the norm. 

But what is the norm?

Being short-sighted, long-sighted having to wear glasses, wearing hearing aids because we’re hard of hearing. I Have asthma. These are the accepted norms for what I’ve seen people think but walking differently, speaking differently unless you are from a different area of the same country are classed not. 

There is also the problem of being of different races and religions that are still being argued about too. 

So my final thought on this is what is normal?

What are your thoughts on this?

I have used information from https://www.hopkinsmedicine.org

Wikipedia for Stephen Hawking and Albert Einstein

Solutions for the seasons and their affects on a body with cerebral palsy

 Solutions.

Many of these Solutions will come across as common sense which they are however people who don't know how cerebral palsy affects people with it. people should take these into account. remember it is not just the brain damage that was caused at birth it is the secondary issues such as muscle tone and joint problems that occur later in life and when this starts to show it is best to address s two seasons correctly for that particular person it depends on how they are generally and what they are as part of the disability.

If in summer the person is unable to control their body and body temperature then the best way is to keep as cool as possible as this will help the person with their movement if they can if on the other hand, they become cold then it is best to keep them warm and it doesn't matter whether they are outside or in because if someone was to have the central heating on in their house in the summer and it was hot they're muscle tone would also be affected and too difficult to manoeuvre easily for day-to-day life. therefore windows should be open at times and that person dressed appropriately.

If the person can walk on their own with or without aids then it is best to consider what they are doing for that particular day because everything has to be taken into account for the amount of energy that is used by that person for that particular day making it harder for the next day or 2. The average person would just put on a coat or jacket etc for that particular day but a person with cerebral palsy has to account for everything that they are doing as well and where they are going and how they are walking or moving around.  if in a wheelchair or a mobility scooter then the person has to again-dress accordingly to what the weather is like as any other person would. but as I have just said in my previous paragraph the person or people who use aids such as a walker or walking stick have to take those into account for where and what they are doing on that particular day. 

Therefore just like anyone else a coat or jacket would be needed for 4ev re1 who is walking on their own or in a wheelchair/Motability scooter however additional needs would be required for a wheelchair such as a blanket or waterproof cover, for the person who is sat in the chair for long periods out and about, should a shower or freak weather happen. 

Also while at home the person should be doing simple exercises that they can do with the carer or on their own to keep that mobility at the level that they are at rather than deteriorate further than expected or wanted at a quicker pace. 

I have another post on that earlier in my blog And they can be found at Exercises or No Exercises

Summer and its Affects on the Body with CP

 it's summer

This is the third season when everyone one.is outside and it doesn't matter whether you have a disability or not but with this season comes the reversal of the situation for winter. because again muscle tone and joint pain can occur. With cerebral palsy, it doesn't matter because of the muscle tone being tight being because of it being too hot just as it would be if it was too cold as in winter. 

A good example of this was a British Paralympian who was in Rio and said that her body loves the heat for muscle tone as it made it easier to run etc however her skin and the rest of the body where cerebral palsy is not affected the body hated the heat because of the humidity.

Doing this group of posts I asked various members of a group who have cerebral palsy and different types such as spastic, ataxic and diplegic And it doesn't didn't matter what type of disability or cerebral palsy someone has where the weather will affect the body to some extent. 

In conclusion to this then it would make no difference whether the person went out if they were worse too hot or too cold because the disability would be affected in the same way however when the weather is ideal then is the optimal time to go out and do things.

Spring and its Affects on the Body with CP

So it's spring:

This is a season where things get a little bit easier. the weather has been getting slightly warmer each day. Maybe a few days where it has been more difficult to get out however because of the way things are with cerebral palsy this is also the time of freedom to start with. Here in the UK, we are just coming through the winter when we are stuck indoors. because of the way the weather has affected our bodies with cerebral palsy.

Warmer days

These are the days that are slightly better than the last few months because of the way cerebral palsy is affected and the pain and the looseness of muscles is beginning to happen again because of the warmth. making things happier for us as we can move freely. it doesn't mean that we have to stay indoors but we do if it is a colder and windy day because of the pain in our muscles and joints. 

Windy days

Again like Autumn and Winter, these windy days in spring make it harder for us to manoeuvre and whether we are using support or not does matter so is more suggestive today to stay in as it makes our joints more painful and muscles tighter making it harder to move.

 what you doing

Rainy days

Feed the days are difficult despite being warm we feel often that we can't go out because of the factor that the ground is slippery so decide not to it doesn't mean that we don't all the time but most of the time I'm if it is a stormy rainy day then we don't because of the muscle tone and joint pain.

Sunny days

These can be the best days as it cannot be too hot but yeah it's warm enough to keep our joints supple. These are the days when there when we grab opportunities with both hands because we can do the most.

Cold days

Similar to winter and autumn this is when the pain for joints and muscles are stiff making it harder for us to do what is required on a day-to-day basis. So we spend most of the time indoors doing things if we can.

Final ideas

This is when in fact things become freer. however, because we find it difficult to move around on bad days when it's cold or windy such as in winter or autumn or early spring it makes it more exciting for when summer comes.

Winter and its Affects on the Body With CP

 

Why winter?

Carrying on from my post about autumn and its effects on the body with cerebral palsy. This post is about winter and its effects on a body with cerebral palsy.

Warmish Days:

These would be classed as the best days to go out as people have the least amount of pain in their muscles and joints due to the challenges the condition gives.

Stormy Days:

These days are avoided. As much as possible because of the pain that happens because of the way the muscles and joints are affected. However, we have to carry on regardless and go out if possible. Again that depends on how the condition affects the body.

Rainy Days:

These are similar to stormy days but can walk. They can be just as tricky especially if using walking aids such as sticks or crutches as the ground becomes more slippery. Therefore even with aids, it is more difficult to walk if done.

Cold Days:

Pain wise these days are absolutely the worst in my view. As my knees are very worn out. And as I have mixed cerebral palsy everywhere. But in general, these are the ones that affect every person with the condition. I try not to go out on these days

Snowy Days:

These are days again when there is a lot of pain if we go out. Which is very unlikely as well as the cold the ground is unstable as it's slippery. Even if we were able to go out it would be difficult with whatever aid we used. The pain in our joints and muscles could be unbearable.

Thoughts:

So even if we do go out in autumn it depends if we need to go out for anything. But it doesn’t matter what type of cp we have the effects are the same to some degree or another.