Remembering to say NO…

Hello, yes I’m still here and still alive.

I’ve been wanting to write this post for a few weeks now but have struggled to find time when Foggy Frog isn’t being a pain!

With so much going on, writing this post has been a good reminder to me that I need to remember to pace myself and listen to my body. Although physically I’ve been able to do so much more, I’ve found mentally I’ve been struggling the last few weeks.

This means it’s time to reevaluate again and find what I can step back from to achieve balance again.

Pacing is such an important part of my management strategy for the pain and other debilitating symptoms, such as the fog and fatigue. With the changes in my medications over the last few months my pain levels have been lower and, as I said above, I’ve been able to do more than I have in over 3 years.

I’ve joined a gym and have found that doing something most days (generally a stretching based class or a swim) has been beneficial for my pain levels as well. My step count is back to an average of 7,000; a level I haven’t managed since December 2014.

I’m still working on the Australian Association of Environmental Education Biennial Conference occurring in October, and my upcoming book launch on 24 September… less than a month to go! This has meant meetings almost every day about one thing or another.

As you can probably tell there’s a lot going on at the moment. In fact, it’s a little too much so I’ve been slowly stepping back from the conference planning and trying to work out what the essential things are for me to get done for the book launch to be a success.

I want to keep up my physical activity, as I’m trying to make sure I’m as healthy and strong as possible for when we start trying for a family (something we’re seriously talking about at the moment). So that means saying No to some of the other activities in my life.

Right now I’m saying NO to:

• taking on any more for the AAEE Conference planning
• to other volunteer opportunities that don’t have any connection to possible paid work in the future
• meetings I can postpone until later

I’m saying YES to:

• time with family and friends
• actions that will progress the book launch
• actions that will help me be healthier and stronger (exercise, diet, rest)

What do you say No to in order to say YES to the things that matter?

Share your World: Week 3

 

Today I’m seeing my doctor to follow up on the side effects and blood test results. I’m feeling very frustrated with myself lately. Thanks to the side effects I’ve been struggling to do any work, even writing these posts is taking me many times longer than normal.

What is your favorite piece of art? (it doesn’t have to be famous)

I don’t really have an answer for this one as I tend to favour art work that has special meaning to me or that evoke emotion in me and there are several that fit that category. Looking around our house at the moment there are two that stand out to me…

The first professional photo of me and E. This photo was taken almost 10 years ago. Every time I look at it, it makes me smile and feel good inside.

This painting was a birthday present to me and E on our 30th birthday last year. It was painted by one of our friends and I love how simple it is. It hangs in our toilet and adds a point of interest to an otherwise boring room.

What made you smile today?

Watching the cats chase each other around the house. Cats can be very entertaining and also great therapy. When I’m feeling my worse and spend my time curled on the couch I love having them come and curl up with me.

Which place do you recommend as a Must-See? Please state which country, state or providence.

Dangar Island, NSW, Australia.

My Aunty lives on this wonderful island in the middle of the Hawkesbury River. It’s home to a few hundred locals while others have holiday homes on the island. Apart from the communal vehicles for maintenance and emergency services there are no cars on the island and you can only access it by ferry.

I love how peaceful it is on the island and the fact that there is such a communal feel.

Complete this sentence: When I was younger I used to….

hide in cupboards with my sister.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I was grateful for the opportunity to float in the ocean and spend time with family and friends. I’m hoping to make more beach trips this summer, especially given the fact that I’m meant to be doing more water based exercises at the moment.

I’m also grateful for having rediscovered my meditation mantra from last year, it’s been very helpful to me while I’m dealing with the extra symptoms and side effects.

May I/you be peaceful and true

May I/you have an open heart and open mind

May I/you be free from all suffering

This week I’m looking forward to getting some answers from my GP and taking the time to focus on recovering from the last weekend.

Z is for Zero

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we have been exploring each category of the A-Z guide to a simple, sustainable and meaningful life.

Thank you for joining us on this journey towards more simple, sustainable and meaningful lives. Over the last month we’ve talked about a lot that we need to continue to work on over time if we’re to succeed. Today we finish up by looking at Z… Zero.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

Z is for Zero

A simple life is one in which we’re aiming for ZERO (or as close to zero as we can get).

We’re aiming for zero stress, disappointment and waste (time, money, things).

If we’re realistic we know that this isn’t doable but it’s good to set our goals high. Each and everything we’ve talked about over the last month are small steps towards achieving this goal.

My ZERO includes reducing the negative impact I have on both those around me and the environment. That’s because this fits with my values, it may not fit with yours.

My ZERO means trying to live by Bea’s 5 R’s – Refuse, Reduce, Reuse, Recycle, Rot.

My ZERO also means learning to compromise. My husband’s values may not be exactly the same as mine. At times I compromise on waste coming into our home to meet his values as well.

My ZERO means spending as much time as possible with my family and friends, helping others as much as I can through my work and what I do in my spare time, and spending time by myself to focus on healing my body.

My ZERO is a life in which I feel needed, loved, supported and cared for.

What is your ZERO?

Y is for Yes

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at Y… Yes.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

Y is for Yes

Say YES!

Say YES to looking after yourself.

Photo (c) E. S. January, 2014

Say YES to living by your values.

Say YES to being the best YOU you can be!

Over the last few months I’ve made an effort to say YES to opportunities that have come my way. I’m being careful to try and keep pacing while I do this and I’m also giving myself permission to say YES to my health by saying NO to others when I need to.

By saying YES over the last few years I’ve taken up some exciting opportunities, including:

• Creating the Foggy Frog and the Pain Gang picture book
• Developing a 3-year Environmental Management Plan which will guide community sustainable actions within one of the Local Councils I work with
• Developing educational biodiversity trails for local schools in another Local Council
• Joining the executive committee for the South Australian Chapter of the Australian Association for Environmental Education through which I’m helping with organising and running a national conference later next year.

Without saying YES, I wouldn’t be doing any of these things but to be able to do them I also need to say YES to the following:

• Pacing myself and resting every day
• Eating as healthy as possible
• Listening to my body

What do you say YES to?

Don’t forget that the Ultimate Spoonie Giveaway is now open. Sign up here for your opportunity to win!

 

X is for eXperiment

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at X… eXperiment.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

X is for eXperiment

One non-formal way of learning is to experiment. Experimentation is essential for those of us living with chronic illnesses. For many of us there are no known cures (or even causes) for what we are dealing with. That means we need to constantly experiment with treatment options until we find ones that work for us.

Throughout my journey with chronic illness I’ve experimented with various drugs (antidepressants, lyrica, sleeping tablets, other pain relief). I’ve experimented with natural alternatives like the TENS machine, accupuncture, yoga, massage, meditation and visiting a naturopath.

I’m constantly experimenting with different routines, sustainable lifestyle options (like cloth toilet paper and napkins), and new healthy recipes.

homemade cloth toilet paper

Finding what brings you joy and wonder, and what you’re good at is only possible by experimenting with different ideas.

What experimenting do you do in your life?

 

W is for Wonder

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at W… Wonder.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

W is for Wonder

Like Joy, Wonder is an important feeling to have in life. It’s also a feeling that is surprisingly hard to find, especially when things aren’t going right in your life.

Take the time when being mindful to find wonder in the world around you. Wonder can be found in the smallest things…

The feeling of the sun on your skin as you sit in the garden…

The smell of the flowers…

The taste of a fresh cup of tea…

Without wonder, I wouldn’t learn so much. My wonder is what encourages me to keep researching and learning. It helps me through the tough times by giving me something to focus on.

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V is for Values

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at V… Values.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

I’m also going to cheat a bit with this post and use information from a previous post…

V is for Values

Everyone has values. Throughout this journey I’ve talked about how a simple, sustainable and meaningful life is different for each and every person and that because for it to be meaningful it has to be aligned with your values.

I’m going to suggest you do an activity to determine what your values are. This could be something like the 100 Goals Challenge I undertook last year. It could also be a discussion with your family to work out your shared values.

We’ve done this at LiveKen and, in no particular order, our values are:

• With the Community for the Community
• Make a positive impact (be sustainable and aware)
• Respect yourself and each other
• Be genuine and transparent
• Love what you do and do what you love
• Never stop learning

Let’s take a closer look at each of these and see what they mean to us, why we do it and how it is important for you.

With the Community for the Community

Every thing we do here at LiveKen is done with the Community’s best interest in mind. We also include the community in the development of everything we deliver to make sure that what we’re developing and delivering actually meets the needs of the Community.

Who is the Community?

When we’re talking about working with the Community for the Community, who do we mean by the Community? The simple answer to that is that we mean you, the complete answer is a bit more complicated than that.

Our Community are those who:

• are feeling overwhelmed by life and looking for a way to simplify it
• suffer from a chronic illness, such as Fibromyalgia, ME/CFS, MS or any other lifelong illness that interferes with their ability to live a ‘normal’ life
• Have multiple symptoms that interfere with life, such as constant pain, fatigue, and brain fog, but no diagnosis
• are simply struggling with life and unsure where you are heading
• are looking for guidance on living a more sustainable, fulfilling life

If you recognise yourself in even one of the statements above then you are part of our community and we welcome you to join us in identifying the issues and finding the solutions to solve them.

Our initial services are focusing specifically on those with health concerns and chronic illness but other services are on their way shortly, so please join us for the ride. Sign up to our newsletter to get monthly updates on what we’re doing, useful links, and special offers.

Make a positive impact (be sustainable and aware)

With every decision we make we consider the impact of that decision on our lives, the lives of others and the planet around us. We aim to make our impact on the world a positive one. Creating a legacy that helps others to live fulfilling and sustainable lives that have a positive impact on those around them.

By joining us at LiveKen, you are making the first step in the direction of a positive life change. You are making the decision to consider your health, those around you and the environment you live in when you make decisions.

We know that at times all of us will make decisions that don’t have a positive impact, but when this occurs we will learn from these experiences and make better decisions the next time.

Respect Yourself and Others

In the past we have lived our lives by pushing ourselves to the limits and trying to do as much as we can. For some of us, this has led to chronic illness and an inforced need to respect our own bodies. Because of this, and the negative experiences many of us have had since being ill, we are hyper-aware of the need to respect ourselves and each other.

You never know what other people are going through so try not to judge them. By trying to empathise with, and respect, each other and our own bodies we are able to listen to understand and not just to respond.

Be Genuine and Transparent

We only talk about things that we have experience with and an understanding of. We approach our products and services with open hearts and open minds. That means we are open to constructive criticism and will consider others’ thoughts and opinions on what we are delivering.

Through this blog we aim to be transparent about how we are working, what we are hoping to do, and what we’re able to do for you.

In many ways we are learning as we go. We do not claim to be experts in our field, instead we claim to know enough to help you and to find ways to discover what we don’t know so that we can help the best we can.

We will be honest when we don’t know the answer and, when ever possible, will direct you to the appropriate people if we know someone who is better able to help you.

Love what you do and do what you love

All of us here at LiveKen are starting out volunteering our time to get these projects of the ground because we believe in them and believe they are important to get out in the world. If you don’t actually enjoy what you’re doing then we will be asking you to stop doing it, if that means leaving us then so be it!

Because we actually believe in these projects, our aim is to provide as much as we can for free. However, we can’t live off air alone so we’ll be offering fee for service offerings to cover business expenses.

Never Stop Learning

To be able to Understand, Inspire and Empower we need to have that first step in place; we need to understand. A big part of understanding is actually knowing what is going on, as such continual learning through courses, conferences, interviews, reading and experimenting is key to LiveKen philosophy. We will be sharing what we learn through our blog, our courses and our other products and services.

So, there you have it! These are LiveKen’s values. We believe that these values fit well not only with staff and volunteers but also with our clients. If you believe in working with the community to develop services to assist the community, respecting yourself, others and the planet we live on, and continually learning to improve your own life and the lives of those around you then you have come to the right place!

What are your values?

 

U is for Unplug

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at U… Unplug.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

U is for Unplug

In today’s day and age we seem to be constantly surrounded by and connected to technology. This makes it difficult to step back and relax.

I always feel much calmer and life seems much simpler when I have the opportunity to disconnect.

This can be as simple as switching off your phone and sitting outside for a while, or can be more involved including going away camping for a week or more to reconnect with nature.

Reconnecting with nature on our last camping trip

I really need to work on unplugging more often.

Since becoming ill, I’ve spent more and more time online. In many ways this has been a great thing. It’s helped me connect with people like me, like you, who can understand what I’ve been going through and provide support. It’s been a great way of building my community, but it can be all consuming.

I do try to spend time outdoors every day but I’d like to expand it more and have at least one day that is completely technology free. I’ve tried this before and failed but I think it’s important. It will give me more time for reflection, more space for myself, and allow me to focus on what’s most important to me.

Do you ever take the opportunity to unplug?

 

S is for Space

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at S… Space.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

S is for Space

A simple and sustainable life is one with space for opportunity, reflection, and relaxation.

I have been trying to increase the space in our house by decluttering and removing excess stuff. That’s included creating a minimalist wardrobe (or close to it), and cutting back on items in the kitchen and open areas.

Thanks to my illness, my calendar went from completely full and occasionally double booked to fairly open. I’ve learnt to aim to book only one or two activities a day so that I have space in my day to rest.

We all need space to focus on ourselves so that we can discover what is meaningful to us and so that we can have room for impromptu activities as well.

Do you have space in your life?

 

 

R is for Reflection

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at R… Reflection.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

R is for Reflection

Part of being mindful is to take the time to reflect on what you have done and where you want to be in the future.

I try to set aside regular time to sit and just be with my feelings and thoughts by meditating. I also try to spend time each year (or 6 months) to reflect and plan for the next period of time. It’s a way to help me continually review where I’m going and make sure I stay on track or change tracks when appropriate.

Do you regularly reflect and act on what you discover?