A sanctuary for life with Diplegic Mixed Cerebral Palsy, Endometriosis and Combined ADHD. Exploring identity and the journey of 'Be Who You Want to Be' through poetry and reflections.
Sunday, January 11
The Foundation Years
Sunday, June 16
AFew Months!
It's been a few months since I moved into my final home. I had given myself a bit of time to recover from the amount of stress, uncertainty and energy that I have used over the last 14 months with all the moves.
Having multiple conditions and moving is probably more stressful than just moving. Which is stressful in itself.
There are many things which I never thought about growing up with the main condition cerebral palsy which I spotted in my 1st move. But never thought of it until moving into the final home.
Here are some tips to make the transition smoother:
Involve the person with cerebral palsy in the planning process as much as possible. This will help them feel more in control and invested in the new home.
List any accessibility needs to be addressed in the new home.
This could include wider doorways, bathroom grab bars, or a lower kitchen counter.
Start unpacking and setting up the new home one room at a time.
This will help to avoid feeling overwhelmed.
Familiarise the person with cerebral palsy with the layout of the new home.
This will help them feel more comfortable and independent.
Be patient and allow plenty of time for the person with cerebral palsy to adjust to the new home.
Some tips can be done during settling into a new home. The biggest one I discovered in the last home as I got used to the layout of the place.
As an ambulatory wheelchair user, there was one major thing I was suffering in the first month and that is to use my home helper trolley that I have for transferring from one room to another. So that I could adjust to the different surfaces of certain rooms and areas.
My kitchen, hall and bathrooms are laid with lino
I'm still struggling a little bit three months on but I'm getting better. I know that it's ok and I know that I will get used to the house and area. I still walk gingerly around some places as I don't go out as much as I did before.
Sunday, May 19
A new place
A lot has happened since. But here I am.
A different place. Older and wiser than before. New things are coming slow and steady. Other things keep dropping off. I have learnt a lot over the last few years. Knowing that life has always a way of doing things to change your plans no matter what you want. It's ok though. Learning is what life is all about. In some ways life has been harder but in others it hasn't.
You think life is going one way then it shows you a different route. Sometimes they lead to a completely different place and sometimes it might just be a loop or bump in the road that either speeds things up or slows it down.
What's next ? Who knows. All that can be done by me is being done and the rest is out of my jurisdiction. The wait can be a problem but the best thing is to channel energy into other things. I'm trying my best to do that very thing. Yet there are so many distractions. Some are welcome, others are not.
What is left to do? A bit of clearing out. Not much though! Everything I had asked for is coming even though there have been difficulties. Some have been huge and others small. They all have challenged me most definitely.
One of the things I have struggled with is patience. There's a saying ”patience is a virtue” and I know that it's one I wish I had. Especially when it's to do with things that are out of my control. Have you ever had those types of feelings? I know I have!
How do I deal with those feelings? That depends on what I'm wanting to be done by others. I know people probably think I should be doing everything. I can't however. It doesn't mean I don't want to. Just physically I can't.
You see, I'm an ambulatory wheelchair user. I used to do almost everything possible as a child and young adult. The older I have gotten, the less I have been able to do. There are many people who are like this. Not just me.
Frustration is forever changing because things I could do a year ago. Now I either struggle with it or can't do it anymore. And things change. And as a person either accept the change or become more maudlin and then depressed. It's never easy to accept things about yourself as a teen or young adult. And if something happens while getting older.
There is always the question “why me?” The question should actually be “why not me?” Or “what can I learn from the situation I'm in?” those questions are a better way.
Because there's always something you can learn. Sometimes you may not be the one who needs to learn something but you are the one who is there to teach someone else something.
Someone said that if you don't learn something the first time around then you are given multiple challenges until you learn what is required.
The two things that I have learnt in my life so far is acceptance and understanding. There are a few more things that I need to learn successfully. Such as listening, patience and the ability to stop worrying about things that are out of my control. Those things are not easy to do. I'm trying though.
What do I want for the rest of my life? I went through a phase of doing things that are not really me. They gave me a new set of skills which is great. I know that those skills are going to be useful, however I'm not ready to use them properly yet. I know I will just not now. But I am excited to be doing what I'm doing. Especially as this is something I love doing but have not felt quite good enough to do it again because of my disability and other life situations that I had no control over.
What is it that I can do for now? Obviously I need to do physio and gentle exercises but what can I do?
Well there's been a few things that have changed since the beginning of this. There has been a massive change in the sense of two different moves. One was a temporary move because where I had been was not really good for me. The other.
The other was the final. I'm finally settling into the new house but there's a few things that need to be done. And once they're done I'll feel more confident in the house. The other big change is the area of where I'm living.
It's a quaint village that has old buildings but the pavement is not really good enough for someone who is an ambulatory wheelchair user, or someone who is wheelchair bound. I need to go around on my scooter and get to know the area. However at the moment I'm stuck using a scooter which is totally not my type. Even if the colour is my favourite. Which means I'm stuck indoors until mine is repaired.
Luckily there's still some things that need to be done. Before having people around.
Monday, May 29
Moving forward with cerebral palsy
Cerebral palsy is a neurological disorder that affects movement, muscle tone, and posture. Living with cerebral palsy can present challenges, but with the right mindset and support, it is possible to move forward and live a fulfilling life.
One of the first steps in moving forward with cerebral palsy is to develop a positive mindset. This means focusing on what you can do, rather than what you can’t. It’s important to remember that everyone has limitations, and that having cerebral palsy does not define who you are as a person. By focusing on your strengths and abilities, you can build self-confidence and a sense of purpose.
For me this is the blog and ability to talk about my conditions. Both cerebral palsy and endometriosis. From a personal point of view. In order to educate others.
Another important step is to build a support network. This can include family, friends, healthcare providers, and community organisations. By connecting with others who understand your challenges and can offer support and encouragement, you can build resilience and overcome obstacles. I was always taught "there's no such word as can't"
Physical therapy and assistive devices can also be helpful in managing the symptoms of cerebral palsy. Physical therapy can help improve mobility and muscle strength, while assistive devices such as braces, walkers, and wheelchairs can help with mobility and daily living activities. It’s important to work with healthcare providers to find the right treatment plan for your individual needs.
Education and employment opportunities can also play a key role in moving forward with cerebral palsy. There is a lot more to do in this section as it's not always considered as an adult condition.
Pursuing education and career goals can provide a sense of purpose and fulfilment, while also improving financial stability. It’s important to advocate for yourself and seek out opportunities that align with your interests and abilities.
Finally, it’s important to practise self-care and prioritise your physical and mental health. This can include getting enough rest, eating a healthy diet, staying active, and seeking out mental health support if needed. By taking care of yourself, you can better manage the challenges of cerebral palsy and live a full and meaningful life.
This is why at times I don't post. As I feel mentally drained because my CP has caused problems either the night before or days before. And more often than not endometriosis has also interfered
In conclusion, living with cerebral palsy can present challenges, but with the right mindset and support, it is possible to move forward and live a fulfilling life. By focusing on your strengths, building a support network, accessing appropriate treatment and assistive devices, pursuing education and career goals, and prioritising self-care, you can overcome obstacles and achieve your full potential.
For me this is having a fantastic family of my own and my blog here, podcast and books which you can get from Amazon.
As I have said I'm in a bit of a stable place at the moment so I will be pivoting slightly on the blog back towards things I like and do as I had been through different things all mentioned here in previous posts. What have I got planned for now regarding the blog? You will have to find out by reading more.
Sunday, February 26
In Limbo! Waiting for the future
Sunday, December 18
A longer wait than I thought!
- Anger
- Frustration
- Worry
- Annoyance
- Acception
- Excitement
- Happiness
- General anxiety disorder.
- Clinical depression.
- Panic attacks.
- Bone damage.
- Arthritis.
- Post impairment syndrome.
- Bone disfigurement.
- Bone disfigurement
- Arthritis
- Post impairment syndrome.
Sunday, October 23
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.
Sunday, September 18
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
Thursday, September 30
Moving on
Right Now




So Much freedom






The Invisible Shift
Dear Diary, I was looking at an old photo today from when the twins were seven. It’s strange how the 'chaos' changed back then. We h...
-
You are finally moving! Tips and Tricks for Everyone! Whether you are a first-time mover or a knowledgeable mover there’s always time to l...
-
What a shock! I had just found out that I was pregnant. The IVF worked the first time, and I was overwhelmed with joy. As soon as the news s...














