Moving forward with Cp

Ok so you have a child with Cp:

Or you are a young person with the condition. There will be lots of people who are older than you. These people have the best intention in the world and yet get things wrong particularly about your condition. These people may be members of your family but don’t understand the condition. They may think they don’t. You must realise this.

Comments they make:

• Close your legs.

• Come on hurry up!

• You can do better than that!

• Pick your feet up.

• Stand still.

These are just some of the ones I have encountered growing up. Even now decades later these confuse me.

You may wonder why I say that. You’ll see.

Growing up and feeling out of place!

Whether you are a single child/part of a bigger family that you live with. You are a member of the family who is reading this with another member with cerebral palsy. Take in mind what is said as it does not matter what people say. There is always a sense of being out of place because we are not classed as normal. There are signs of it in every part of life. This includes clothes, looks, dreams, work, movies,  how we eat and drink, how we speak. But the thing is we are the same as everyone else but parts of our body don’t work the way we want. That can be a real pain sometimes. I want to make sure that everyone understands that it is not always easy to do, what is expected of them because it is not part of their dream. it could be completely different to what is expected. 

What is normal?

What is the question of being normal? Because being normal mean nothing? As a human being. I would have thought being able to give some purpose to the world and each other was better than not being able to do anything or being criticised. Some people who think that being different is not ok are wrong. Wanting to be normal is is a perception and that means being yourself is not acceptable. There are options to be sure to show that being yourself is better than being what everyone else wants. Because it proves that you are what you are meant to be no matter what.   the whole system of being normal is also being portrayed too much on TV  and film because there are not people enough people should I say who are betraying people who are different and this is where the perception becomes the norm.

Growing up!

Personally, I had very much the perception of wanting to be normal but then questioning that whole thing because I was on my own a lot. I watched a lot of TV and films where sexism and racism were the norms and it is not in my eyes until I was older that it made me question myself because  I am different because of cerebral palsy. Growing up despite being an only child and was treated no different than everyone around me. I found it incredibly difficult because I thought I was normal and was able to do stuff but later found that actually, I couldn't. And that made things very difficult and depressive for me because of the feeling of inadequacy.

Trying to be a people pleaser and follow their example makes it very hard on yourself and I have learnt this myself. Now shows that actually being yourself is stronger than r following the Sheep in human Society as a whole. Although at times of medical interventions such as the pandemic right now it is best to follow the guidelines. however, it does not stop you from being yourself within the confines of society.

Teaching people that being different is ok!

Being yourself and showing that being different is out is ok and good for the environment and for Humanity shows that equality in the human race can be done. It may sound stupid but there are still people who perceive that different is not ok and it makes it harder for those of us who want our own dreams and goals to be heard very hard to actually be heard to get what we want within our life.

What next?

What Next? is the question that should be on everyone's mind right now but in every situation. However, cerebral palsy and other disabilities need to be shown that they are accepted and we are valued because whatever is said meant by family members and others make us feel that we're not. So what is next? They might even try and say that but they're trying to help but actually, they're not! The best thing for you to do is firmly but politely say sorry I can't do that. Because the more people learn about the condition and other conditions will be able to be more accepting of other people.

Final thoughts

My final thoughts on this would be to educate people and educate people continually until it is done. however, I don't think it will be at least in my time but hopefully, in my family's next generation. There is such a long way to go to make equality for everybody on this planet.

So We Are Coming Out The Other Side! Of this Pandemic!

We are coming out the other side! 

So it's coming to the end of 2021 and the world has been in the most horrific since the end of 2019 when the world first heard of COVID-19 and the global pandemic first started. I have spoken about this in various posts such as Is this going to be another groundhog year?

But is the new year ahead of going to be the same as the last 2? 

There was a comment made about previous pandemics that I realised was a good observation and that the average time a pandemic lasts is 3 years. The most notable one is the Spanish flu which I mentioned in keeping your distance to stay safe. And that was from December 1918 to the middle of 1921 towards the end of the year.

Right now

Since beginning to write this post there is another variation of COVID-19 that was discovered in South Africa very recently so things have become more difficult again.

But changes are happening all the time so it can be a real struggle to know what to do for the best.

 What can everyone do for now?

The simplest thing people can do is follow the simple rules below.

• Wear a mask on public transport

• Wear a mask in shops and restaurants unless eating and drinking.

• In enclosed places that you don’t usually go wear a mask.

• Keep your interactions as minimal as possible. But do keep an eye on the elderly and those who are vulnerable.

• Staying at home as much as you can.

• Have the injections and boosters

• Carry hand sanitiser and use it 

Some people won’t follow these but they are putting everyone at risk. So unless there is a valid reason like some kind of medical or physical reason then masks should be worn.

Moving forward!

I mentioned before that in some places people are wearing masks for other reasons such as pollution. This is evident, particularly in Japan and China. Where the pollution is more noticeable. So following the simple rules will make it easier and quicker for things to go back to a similar way as before.

Hope for the future?

There is always hope for the future but this depends on everyone who can take action. It also depends on what actions everyone takes.

What does this mean for the exempt?

The following is what is meant for us who are exempt. 

• Stay home as much as possible.

• Have the injections that help everyone.

• Limit your interactions with others.

I get it that limiting your interactions can make you feel lonely but try to make a routine of seeing someone in your network every day. Even if you don’t touch the people you see it's important to be in touch with them. So that could be through:

• Texts

• Phone calls,

• Zoom or face calls.

• Meet up at an open space or garden. 

• Meet at a spacious place. This might be a cafe or coffee place with lots of space.

What ??

So we are all going to be doing indoors? those of us who are indoors more than others may not find as much difference but those who are could follow some of the ideas that I suggest in How are you coping in these strange times

But that is up to you and those around you. But remember that it's not just your life that is being affected by your decisions. It is everyone on the planet.

Final thoughts!

My final thoughts on this are that it is up to everyone to make an informed decision. I will be doing everything I can to ensure that everyone I love and know will be safe.

What does 2022 have for me?

What I think it has?

I think the new year has a lot of good things happening. Not everything is going to be what I wanted it to be. That's ok though just the same as 2021. 

There, as I said, have been lots of changes in the way things are regarding my disability. I think that the changes will be positive for the future to a certain degree. I'm hoping to have the final place, but it may not happen. We'll see. That's ok though because there is always going to be positive and negative. No matter what.

What do I want from 2022 ?

All I want is a way of being able to be safe and yet not stressed out too much. I know that this is going to be a difficult year ahead with the way that my family is going to have a head regarding their own situation such as GCSEs and a new place. We don't know what could actually be happening. We just have to take it month by month. 

So that means that we have to think about what is going on each month and make a small plan so that we have a monthly plan rather than a big goal for the entire year as something we can grasp on to. 

And that's what I think is going to be something that is going to help me as a person with anxiety. But it's also a lesson that I need to learn.

What I don't want from 2022?

I don't want to disabled person to be so stressed out that I'm panicking in a day-to-day situation for everything that has to be dealt with. 

I can manage if things are the occasional hiccup, but if there are lots of things that are causing issues then I will be full of anxiety and not wanting to do anything and instead wanting to hide so that is a negative side of 2022. Knowing what my disability holds in general makes it a lot harder at times to realise what we can do and what can happen and what help we have available.

What will I be doing in 2022?

I will be getting ready for the new home sorting things out to get to that stage and before setting down hopefully in the new final home but we can't confirm or any of that for the next year until the end of the year.  I'm going to be tentative about moving in this time next year, ready for the new place. 

What next?

My plan for now is to take each task that makes the future safe and secure for me and my family. As I know that the future can be very uncertain yet I can make it as safe as I possibly can. That is all I can do for now.

 

December and what it has in store for me?

It's the final month of the year. Quiet often it's a crazy one, getting ready for Christmas.

This is the final month of a bit of space before the year of transition yet again. This year has been amazing in so many different ways.

There has been some problems with the world. What with the pandemic and the way it's still effecting the world in so many ways. 

A lot of things however going, back to normal, as I have mentioned in many of my other posts such as When change is coming and Moving on. 

Yet recently my brain has decided to almost shut down. I think that's because there's been so much going on that I haven't been able to really deal with things on a daily basis. And so my brain was in so much a disarray.

I have had to plan so much ahead for the future, because things are still up in the air despite being safe for now. I wish to be able just live from day to day rather than have to plan so much ahead. And that is something that I needed because there's only something's that I can plan, but not everything.

What do I think December has for me.

I am hoping that this month can be be a semi restful month with good memories for me and my family. As well as Christmas presents and time with outside members of the family that I don't often see throughout the year.

What do I want from December.

I really want this month just to be a peace and quiet so that I can just live from day to day because of my disability. And get ready for the next year and the future ahead.

What I don't want from December!

What I don't want is a month of stress and anxiety before the new year ahead. So I can manage everything going on in the new 

 

Three weeks with Herbalife. My take on the big Health Lifestyle Company

What is Herbalife?

Herbalife is a lifestyle system that was started in 1980 and has health supplements ranging from protein shakes, vitamin supplements, bars and more. It has a big following and sponsors various sports teams and individuals such as La Galaxy, Cristiano Ronaldo, and the Israel Olympic Committee just to name a few. 

It is a multi-level networking company that is introduced to members by other members by talking about the benefits of the supplements etc. Then getting people to be representatives for the company and introducing more people to the products and lifestyle. 

There are lots of companies that do this, such as Forever Living, Juice Plus, Younique, Fredric Mohra (FM World). 

I am not here to diss the way the companies are run as I have tried many of them as a distributor and found that way of work is just not for me. 

However, as a person who is very conscious of what I should eat because of the way my weight also affects my joints and what agility I have left because of my cerebral palsy. I was very curious to know more about the company. And what they could do for me.

How did I get to know about the business?

Originally I saw a box with the name and also noticed that here in the UK the company was sponsoring the Paralympic team. During the original lockdown in 2020, I joined a Facebook page about cerebral palsy and got to know many people who have the same condition. But various types and stages depending on the person etc. One of whom is the Paralympian David Smith MBE. When he mentioned Herbalife and that he uses the products himself.

I have been sceptical about any lifestyle products that weren't being advertised by a person with the condition. So knowing someone else who has a similar condition using these products. Also seeing that the Paralympic team was using them intrigued me.

What happens first?

First of all, I was asked what I wanted as a goal and what I was eating generally. Also how much was I spending on lunchtime food?  From this, David worked out that having 2 shakes a day if I wanted to lose weight or 1 if I was thinking of maintaining. Originally I was thinking of losing weight but I wasn't sure.

What next?

After much deliberation on my part and life getting in the way. Along with David winning a gold medal in the Paralympics 2021 with  I was ready to take the next step in what I wanted to try. 

Then what?

After the break and life getting in the way. I got back in touch with David Smith and said I was ready to start. We recapped on what were my goals. At which point I said I wasn't exactly sure so wanted to trial the shakes on the whole. Especially as I wasn't sure about what would happen because I have endometriosis as well. And that is affected too by what I eat and drink.

Once we agreed that it was to be a general trial of the shakes he asked me what flavours I wanted. I replied with chocolate and cookies and cream.

The next day!

The following day my order arrived and there was so much more than I expected and included everything I needed. Such as the shake cup, measuring tape, measuring scoop and cookery book. As an extra David had sent me some skincare.

To make the shakes!

To make these it is completely easy. All you have to do is add 1 scoop of the actual shake mix and a scoop of the protein powder to 300ml of water. You can add ice too but I didn’t. My favourite flavour is cookies and cream. I was told you can mix the 2 flavours to make a 3rd of Chocolate Cookies and Cream but haven't as of yet.

What I did next!

Over the next week, I tried to follow his suggestion of having 2 shakes a day however because of added complications I have decided to just stick with having one shake a day when I am super busy as they are the most compatible with me as I have been poorly with other types. 

If you are interested in them please don’t hesitate to contact me.

Being healthy! While having cerebral palsy. Doesn't have to be a struggle!

Trying to be healthy with Cerebral Palsy

Trying to be healthy with this condition can be so hard at times and I have mentioned this in a couple of my posts, such as Exercises or no exercises, and 4 Amazing healthy eating ideas with a disability and since writing these posts originally so much has changed. I have learned a little bit more about the way that food is affected by the way a disabled person digests it. You may think we are the same and yes in many ways we are but we are different. One of the differences I never considered until recently is how we get the nutrients that we need to live.

The physical act of chewing

Every time anyone puts some food in their mouth there is the act of chewing the food. You may think this is the easiest way to get the nutrients that we need and yes it should be. However, it not always the case. Unfortunately, when a disabled person eats food it can be the case that we may not be able to chew the food sufficiently. This means that there are often bigger lumps going into the stomach. Consequently, the nutrients that we need are not got because the stomach is unable to get them.

Vitamin and Mineral Supplements

Another way that it is possible is to take multivitamin tablets to help your body get the stuff that it needs. 

Ok, so these are great if your want to boost things especially if you are feeling a bit poorly. These are also a great way of boosting everything if you are not able to eat everything. This might be because you are allergic to specific things. This might be fruits, nuts or something else. That's ok but also check that the supplements that you are taking don’t include something you are allergic to because that can cause problems.

Shakes and bars

These are great if you are monitoring what you are eating and drinking. But as I have mentioned in an earlier paragraph chewing or lack of chewing is part of the way of reason for not getting the correct amount of nutrients that you need. A shake might be a good way of boosting everything as you may not be able to chew enough. And that's ok.

Feeding tubes

Another way that is done for people who are unable to chew. For me, this is not something I know about but I do know that this is a way that it is happening at hospitals and homes. So if it is an option for you then you will need to research it. Making your own decisions in the end. 

My take on this

After discovering that because of my disability I have not been able to chew my food properly. I have made a conscious effort to chew more effectively as well as have supplements for anything that I am missing if along with the occasional shake to replace some of the stuff that I need. I have tried many different types of shakes and the one that I have found that works for me the best is Herbalife. I was introduced to it by the Paralympian David Smith. I will do an in-depth review of the shakes I was given in another post as well. as an interview with David Smith about everything, he is about.

What Now?

For me the choice is easy and it's to do a combination of everything because I am the only one leading my life and there are days when I forget to chew my food properly, so I will have a vitamin supplement. There are days where I won't be eating the right stuff so a supplement is needed. And when I don’t feel like eating so to speak yet I will need to have something so again a shake might be an ideal compromise.

Final thoughts

That is up to you and what you think is the best option for you. Because only you can live your own life. No one else can. My advice to you is to research everything you can. but make your own mind up to what you actually need to live your life to the fullest no matter what.

So the year has nearly finished! What a crazy one.

Oh my goodness what a crazy year this has been. A quarter of which has been in yet another lockdown because of the pandemic. If you didn’t know about it, where have you been?

This year has been a year of almost normality yet not! There have been things that have been shut, new rules to follow set by the government. Then more changes as some of the rules were reversed. And as I write more things are happening.  In the sense that other countries are opening up for us to travel to but not everywhere.

What has this year given me?

This year has given me a real sense of change in myself. Yes, I have cerebral palsy but the fact I moved house at the end of 2020. That was a big change in its self after 23 years in the same place. It was a positive move although there were challenges.

What hasn't this year given me?

The biggest thing is that it hasn't allowed me to get the dream home the way I wanted but that's ok. There are more changes ahead but they are for the future of me and my family. 

These have to be done in stages so that that's ok.

What do I think the rest of the year has got for me?

This year has got me a few lovely things as well as a few awesome memories. It also has been able to have some brilliant experiences that are still continuing.

and some not so good ones. But that's ok. Life has got to give both sides of things because that's what we as humans, disabled or not need as well as the food and drinks that we need to have to survive. But I'm not sure what the last few weeks are going to give me.

What has the year taught me?

I'm not sure about that point but I'm learning all the time and sometimes the lessons are not finished in one day. They may take weeks or months to actually learn the things that. But that's alright and it doesn't matter how long the lessons are needed. However, these lessons are not necessarily wanted despite being taught them anyway. And that's fine.

What did I want to learn?

That's an interesting question to have but I'm not sure exactly. The fact that I'm learning a lot more about how things have been and can be. These are long term lessons that I personally need to learn. Everyone's different but the lessons that are taught are universal ones that everyone should know. yet not everyone knows them all.

So what's next?

Who knows what is around the corner life has for me in the next year but I'm beginning to learn that despite all the best intentions things can and do go wrong even with planning.

Ok so what now! Questions to ponder as a future is uncertain

 I have been quiet for a long time, and things have been a bit of a stretch. I have been thinking during this period that I should be reversing a few of the ideas that I had for this outlet. I am here to give an idea of what life is like with the condition.

Everyone assumes that everyone wants to have their place that is their castle. Yes, that is the case to a certain extent but when living with a condition such as cerebral palsy life gives you curve balls constantly.

Certain things can be a trigger an overload of anxiety and panic. that cause a circle of stress and anxiety.

These include house maintenance in any form, bills that are not anticipated and accidents. For me, it was the uncertainty of what the future holds for me as a person who has cerebral palsy.

Doing any amount of exercise or general existence can cause wear and tear on the body meaning that there is no certainty of what is going to happen in the future. As I have mentioned, in other posts the condition wears the body, 3 to 5 times faster than the average person.

So having to deal with the stress of the condition on top of trying to comply with what everyone else wants. It is a tough option that is not always what a person can cope with. So it may come across as a selfish way but it is part of the way a person has to deal with self-care.

Balance in all things! An observation in Equality.

In the beginning:

There has to be a balance in all things. Yet the scales of life throw wobbles. These wobbles can be about anything. 

And yet knowing where to make the balance is a difficult one. The lyrics for The Rythm of Life sung by Sammy Davis JR has the most meaning for me. 

However, I was having a drink and started to think about the balance of equality.

Equality in the simplest form:

In the simplest form equality is about ensuring every individual has an equal opportunity to make the most of their life and talent. 

There are other meanings too:

• Equal proportions

• Equal wages

• Equal homes

• Equal sizes

? Really?

Yet while having this drink and listening to a conversation I realised because everyone’s view on equality is different that it's not relevant. This seems odd but that is the point!

Example:

Take being colour blind; there are variations of this such as seeing two different shades of the same colour

But these are seen as the same shade when someone is colour blind. 

Ok So?

Applying this to the equality of people and the perception of what is right and wrong for that person is different for each one. Therefore it means that every person knows what is best for themselves personally. Although say for the physical side of the condition cerebral palsy there are similarities in each case yet each one is different. This means that no matter how much knowledge a specialist has they need to remember that the person who they are seeing knows the best about their personal situation. Everyone should not judge or disagree with the person whose life they are seeing. From an outsiders point of view. Because everyone is different and see things differently.

What can you do?

You can learn more about every disability you see and hear about. And educate the people around you who don't know about disabilities because although we are different we have so many things that are the same.