Balance #OneWord2016

Last year I chose one word to guide me through the year… Enough.

I’ve recently found out from The Bloggess that there is a #oneword2016 Challenge and seeing I was already planning to choose a single word, I’ve decided to participate. The one word you choose is meant to be something that will help you focus on your main goal for the year.

Enough did that for me last year. There were many times when I felt I needed to do more or buy more items. Most of these times I remembered my word and felt better about only doing what I could or reducing the items I had rather than adding to them.

This year, I want to keep up the focus on the benefits I’ve received from Enough but focus more strongly on being able to increase (or at least better BALANCE) my activities.

I’m going to continue focusing on moving towards a simple, sustainable and meaningful life with a strong focus on finding ways to BALANCE my needs and wants. I’ll continue to try and single-task, try to get a good BALANCE of health, work, and social activities, and relaxation into my day/week.

If you haven’t worked it out yet, my word for 2016 is BALANCE.

I haven’t planned out the whole year but I have a lot that I want/need to achieve in the next 6 months so I’m focusing on that and trying to break it down into monthly and weekly activities…

In the next 6 months I need to:

• Complete my current consulting jobs for different local Council’s here in SA:
  • Biodiversity Trails – due end of January
  • Environment Action Plan 2016-2019 – due April/May
• Complete my Certificate IV in Training and Assessment – due by end of May
• Publish Foggy Frog and the Pain Gang Picture Book – we’re so close but it seems to take so long to get it all together!

On top of these tasks, I have several appointments as part of the ongoing management of my health and I want to have regular time with family and friends and build up my casual work a bit as well.

As you can see, there’s a lot going on so it’s going to be an effort to find ways to balance everything and continue to pace.

Tomorrow, I’ll give you an update on how I’ve been going with the No Buy Challenge the last few weeks. Let’s just say now that I’ve realised there were a few things that should have been on the exceptions list that I forgot, so I’ll be updating that tomorrow.

Do you have one word that’s going to guide you through 2016?

Finding balance in the ever-changing landscape of chronic illness

Once again I have fallen behind on my schedule for posting here. As my health has improved (ever so slightly) I’m again trying to find balance between actually doing things physically and mentally, and resting.

Over the last few weeks I have had quite a lot of very busy days (for me at least) mixed with a few days of having no energy to do anything at all. The number of crash days – days where I have no energy at all – do seem to be getting less each month according to my records, but I still haven’t hit the right balance and I’m still struggling to do a full day of anything really.

I have decided that in order to do more physical activity I’m going to have to cut back on my online activities for the next few months at least, as such I will be aiming for only one post here and one post over at LiveKen each week (only every second or so post on LiveKen will be written by me, though I am acting as editor for all other posts).

What physical activity am I wanting to increase?

• Spending more time with family and friends – I’d like to spend at least one day a week actually out doing something with the people I care about. In the past few weeks I have managed dinner at a friends house, a trip to our local open range zoo with my sister and younger cousin, and tomorrow my sister is taking me and my mum out for a winery tour.
• Housework – I’m slowly working up to be able to keep on top of this myself. Through de-cluttering and setting up routines I’m hoping to be able to maintain the house at a level that we only need the cleaners in once a month to keep on top of it.
• Exercise – I’m still trying to build up my exercise levels. The housework has helped a lot with that, but I’d also like to be able to walk or ride my bike a lot more than I’m currently able to.

Other offline activities I would like to increase:

• Drawing – I feel like although I always want to get more of the drawing done for the Foggy Frog picture book, I’m not always managing to fit in any during the week. My aim is to do two of the hand-drawn pictures a week until they are done and then work out the next steps for colouring them.
• Study – I have an assignment due in 4 weeks for my uni course, and have not made much progress on the Training and Assessment Certificate so I’m going to be prioritising these for the next month or two when my brain is functioning. I can still only manage maybe 1-2 hours a day actually focusing and being productive in any mentally challenging activities.
• Business Planning – I have begun working with a business advisor to work out the best way to promote the picture book and build on it with the LiveKen brand. I would like to allocate some more time to this.

Overall, I am trying to find a better balance between my online and offline life so that I’ll be better able to work towards returning to work as soon as possible. As I do this I do have to keep in mind that this illness has a mind of its own. I’m trying my hardest not to get my hopes and expectations up too high, but at the same time trying to challenge myself and not resign myself to where I’m at now.

This balancing act is a difficult one for anyone to achieve well, even without a chronic illness, so I will try to remember that rest is still my first and foremost priority and that I need to be gentle on myself. No matter how frustrating it may be my health must come first.

Have you found balance in your life?

What is or isn’t working for you?

Are you ready to join me on an exciting adventure?

Since completing my list of 100 Life Goals and identifying my driving emotions I have begun working on some exciting new projects which will help me live a life in line with my beliefs, values and passions.

I believe it is possible for us to live in a world where people respect their own bodies, the people around them and the environment in which they live. For this to come true, I believe we need to work together to gain the understanding and knowledge necessary to inspire and empower ourselves and those around us.

This belief was further fueled this week when I was privileged to be able to hear Dr Jane Goodall speaking live in my home town. She outlined her successes in a way that was humble and that recognised the input from so many other people to help her get to where she is today. She made it clear that she believed that if everyone played their small part and did what ever small action they could to turn a ‘black’ (unsustainable/damaged) area near them into a ‘green’ (or whatever colour you prefer) area then together, as a collective, we can make a difference and change the way people view the world. By working individually and in a team, we can change the world.

Top 5 things I learnt from Dr Jane Goodall’s presentation

1. There is always a window of hope. We just need to be aware it’s there and do what we can to nurture it and help it grow.
2. By making small changes, together we can make a difference. As I mentioned above, a key message that Jane put across was that we need to look small so we don’t get overwhelmed by the larger picture and all the negativity there is about how the world is at the moment.
3. When developing new products/services always listen to the community and provide what they’re asking for first. When she first noticed the plight of the Chimpanzees, she also noted the plight of the local people in surrounding villages. To help the Chimpanzees, Jane first listened to the people in the villages and began by helping them with basic needs like more food.
4. Start with awareness, but make sure it leads to behaviour change. Increasing people’s understanding of an issue is only going to help if these people can also make changes that fix the issue. Make sure that any awareness programs are linked to achievable action plans that lead to behaviour change.
5. With the right support and encouragement, anything is possible. Ever since she was 10 years old in war time England, Jane dreamed of living in Africa and writing books about the animals. This was in a time when it was thought to be impossible, especially for a young woman, and most people discouraged her and thought her dreams were crazy. Her mother though supported her and provided her with the sage advice that “if you really want to do something, make sure you are prepared to get there and take every opportunity you can to make it happen“. This is exactly what Jane did, and she was able to fulfill her childhood dreams.

How I’m going to use that advice, and how you can too

As is evident from this blog, before Dr Goodall’s talk I was already dreaming and planning out ways in which I could work with others in the Spoonie (Chronic Illness) community to help others in a similar situation to where I was. The Foggy Frog picture book was the first incarnation of me attempting to actually take action on these dreams and plans.

What may not be so obvious from this blog, mainly because I’ve been too ill to even consider my previous dreams until now, is that I’ve also had a long-held dream to deliver awareness and behaviour change programs related to sustainability (for school groups, community groups, and corporate groups). I have for the last 6 years said that my life long dream is to obtain a block of land from which I could run hands-on conservation and sustainability workshops and school camps or corporate retreats.

Although I may have to modify that second dream slightly to accomodate the fact that I don’t have as much energy or stamina (without increasing pain) as I used to, I have begun the process of attempting to combine these two dreams.

I have shared some ideas recently with people I trust and I’m close to, and together with two friends (one old and one new) I have begun the process to take that next step that will help us take the Foggy Frog campaign and our shared dreams and passions to the next level.

What is this new opportunity?

I’m excited to introduce to you:

We are going to be completely open and transparent about what we are doing and so, even before our products are ready to launch, we are working on getting our website live in the next week so that you can all join along with us for the journey, through blog posts and (if you want to) through joining our creative team of volunteers donating time, skills and expertise to helping us reach our goal.

What do we plan on doing?

At LiveKen, we want to work with you to gain the knowledge, understanding, awareness and support necessary to achieve a fulfilling, sustainable lifestyle where you have a positive impact on your health, the people around you, and the planet we live on.

We are business working with the community for the community.

All of our products have been, and will be, developed through an open and transparent method that (like with the Foggy Frog picture book) allows the community to be involved from the very beginning of development so that the products and services fit their needs.

Why do are we doing it?

A strong passion for sustainable living and community engagement, combined with a deep understanding and awareness of the issues faced by those of us with invisible chronic illnesses.

Without knowing how and why we should act, we won’t.

We believe that people should have the understanding and awareness to make their own decisions about life, and we want to help them get there.

How can you get involved?

If you are passionate about raising awareness and understanding of, and helping people take action about, chronic illness or sustainability I invite you to join us and become part of the volunteer/community network that supports LiveKen in achieving our goals.

Until our site is up and running, please contact us below if you are interested in providing support in any way and if you’re just interested in being kept up to date, sign up to the monthly Foggy Frog Newsletter (soon to get a name change as the Foggy Frog campaign will be migrating to LiveKen).

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Wisdom Wednesday: Benefits of Drawing

(c) Megan S, December 2013

I never really felt I was any good at drawing, maybe because I have a slight perfectionist streak which made me throw away anything that didn’t exactly resemble what I was picturing in my head. Since early high school (when I got to select my own classes and dropped Art) I hadn’t really done much drawing at all.

That all changed early this year when I realised I couldn’t afford the price of the illustrator I wanted to illustrate the Foggy Frog and the Pain Gang picture book. My husband suggested I try doing the illustrations myself, and Lynn (the illustrator I had been working with) encouraged me by saying I might be surprised by what I can achieve.

So for the past few months I’ve been drawing, and I’ve got to say I’m actually really enjoying it!

I may not be the best at it but I seem to have gotten over my perfectionist tendancies, 0r at least I no longer have the energy necessary to worry over it, and I’ve recognised some of the other benefits drawing has to offer me.

1. Distraction: When focused on drawing I can distract my mind from what is going on in my body. Although the pain doesn’t go away completely I find I can block most of it out to focus on what I’m doing.
   
2. Relaxation: I find that if I’m able to focus my mind purely on my drawing I’m able to relax muscles that generally stay tensed all the time. This helps again with reducing pain and can allow me to rest easier after drawing.
   
3. Self-confidence: I’m finding the more I’m drawing the better my drawings are getting. This has helped me feel more confident in my ability to achieve this incredible goal of illustrating the Foggy Frog and the Pain Gang picture book myself. I also feel more confident in undertaking other tasks I felt were too difficult or out of reach for me.

These are three of the benefits I’ve found from taking up drawing. I’m setting myself a goal to try and draw for at least 30 minutes a day during the week. This is for the benefits above and also in the hope of completing the picture book ahead of schedule.

Let’s finish this post off with one of the initial sketches for the Foggy Frog picture book. Those of you who are backers of the project have already seen this one.

* All pictures in this post are copyright Megan S., 2013-2014

Have you taken up a new hobby since falling ill?

What are the benefits you’ve found from taking up this hobby?

 

 

Physical Friday: 3 key steps to surviving a busy week with Myalgic Encephalomyelitis and Fibromyalgia

So… it’s Friday morning here, and the Kickstarter campaign for Foggy Frog and the Pain Gang is now in it’s 6th day and 25% funded. If you haven’t checked it out already, please head over and watch the video to understand what we are trying to achieve.

This week has been the busiest week I’ve had in over 8 months. Today is the first day in a week that I don’t actually have anything ‘planned’ with a set time I have to do it. I do want to catch up on the washing and do a few other littler chores around the house, but I don’t need to go to an appointment or meet up with anyone outside. Surprisingly, although I’m fighting with Foggy Frog to stay focussed on what I’m doing and fighting with my eyelids to stay open, I’m not actually feeling as bad as I thought I would today.

It’s Physical Friday today, so I thought I’d share with you the steps I took this week that I think may have helped me survive such a busy week without a full on crash (touch wood).

(c) Megan S, December 2013

3 Steps I took to survive my busy week

1. Plan in Advance

I knew in advance that this week was going to be extremely hectic and possibly even stressful so when booking the appointments I tried to space them out over the week and made sure I had time to rest both before and after every appointment.

To keep the impact of the Foggy Frog campaign down as low as possible I’d planned in advance how I was going to launch it. I asked friends to prepare the food, I pre-wrote all the questions for the online launch, and I prepared and scheduled emails to go out on launch day. Without having done this the launch would have been a lot more stressful for me and would have probably caused a crash on its own without adding the rest of the week’s activities.

I also had my first late night class (a 3 hour class starting at 6pm) for the illustrating children’s picture books course. Although I had no way of knowing how I was going to cope with this class, I had made plans for E to be ready to pick me up at any stage if it got too much and I made sure the tutor knew that if I left early it wasn’t that I didn’t want to be there, it was that I couldn’t last any longer. (Luckily it actually finished slightly early and I made it to the end).

2. Be Gentle on Yourself

There were multiple times during the week when I started to feel that it was all getting a bit too much and I wasn’t going to cope. At these points in time I made myself stop whatever I was doing, sit or lie down, close my eyes and just breath for a while. This technique seemed to work well as ‘mini breaks’ throughout the days when there was no way I was going to get my normal rest.

I also prepared mentally and let myself know that it was OK if I couldn’t get everything done. I gave myself permission to leave things early, or cancel appointments, and even though I didn’t need to do this in the end having the permission removed the additional stressors from my days.

3. Take Regular Breaks

This was a big one, and I discussed in more detail on Wednesday how I was planning to do this. Finding time for myself and just relaxing was probably key to reducing the impact of this week on my health and wellbeing. I’ve had 3 baths this week, done several short meditations, and taken very short breaks just to breath as I outlined above. The baths all used Epsom salts which increase my magnesium levels and reduce cramping, so they were extremely beneficial on the nights I was feeling over it all. The other activities just gave me mental space to step back and assess where I was at thus avoiding too much stress and discomfort.

These three steps have been vital to me this week and I will keep on using them during the rest of the Kickstarter campaign. We have just over 21 days to go and $5,600 still to raise. I know that we will make it because I know how important this book is for our community.

Everyone I have spoken to who suffer from any of the invisible illnesses (Fibromyalgia, ME/cfs, MS, Lupus, etc) all have the same story to tell… Lack of awareness and understanding (and even misunderstanding) in the general community about what it’s like to live with these invisible illnesses. Foggy Frog is the first step in providing awareness and understanding to the wider community on what this is like.

Do you have any other steps you would add for surviving a busy week?

Have you found you can maintain a higher level of activity for an extended period of time without crashing?

Please get behind Foggy Frog and the Pain Gang. Add your voice to ours in letting it be known that we want to be heard. A donation of just $1 will add your name to our list and the more people we get working together, the more likely it is that the general population will stand up and take notice. Visit http://bit.ly/FoggyFrog and pledge your support today.

“Foggy Frog and the Pain Gang” campaign video

Check out Jenn’s prelaunch video for our Kickstarter campaign.

Invisible Illnesses: Campaign to Raising Public Awareness

Foggy Frog (c) Megan S, January 2014

The image above is one of the early sketches of Foggy Frog that I have made for the “Foggy Frog and the Pain Gang” campaign.

This is a project created by the Spoonie Community (those of us suffering from invisible illnesses) for the Community. We aim to provide information and support; encouraging those outside our community to understand and make informed decisions as to how they act around those with invisible illnesses.

Please check out the campaign page to see what our mission is and how you can join in.

Life Is A Beautiful Struggle

A wonderful, inspirational poem that demonstrates what we go through.

Mental Monday: Upcoming Projects

(c) Megan S, December 2013

So, as you would be aware I’ve been very busy in the last 20 days completing several sewing projects and starting on a few bigger projects.

I completed my patchwork quilt and made a matching meditation cushion:

(c) Megan S, January 2014

I’ve also started dropping hints of my really big project for this year, my campaign for raising awareness of invisible illnesses.

Partly for my own benefit, and partly to keep all of you up to date, I’ve realised I need to actually make a list of the upcoming projects I’m working on so that I can try and work out how they’ll all fit together!

Upcoming Sewing Projects

• Matching wheat bag to go with my meditation cushion and patchwork blanket.
• Meditation cushion for my MIL
• Seatback covers (can’t think of the correct name for them) for E’s grandparent’s dinning room chairs
• Other meditation cushions and wheat bags to sell and give away

Upcoming Awareness Raising Projects

• Foggy Frog and the Pain Gang picture book Kickstarter Campaign (sometime in the next few months, the book should be available early 2015 if I manage to raise the funds to complete it)
• Parent and teacher’s guide to using Foggy Frog and the Pain Gang to teach young children about invisible illnesses (late 2014/early 2015)

Other Important Projects

• Increasing my activity levels slowly while pacing and maintaining my health; aiming for being able to do 4 hours activity without the need for rests in order to begin considering a graduated return to work program
• Set up an Etsy Store to sell sewing and other craft creations (I have a name for the store, just need to make some things to sell)

As you can see I have a lot on my plate! I’m obviously not going to be pushing myself too hard just to complete these projects, so they’re going to be long term activities that will probably take me all year or longer to complete, but I really feel these things are important to me.

As mentioned in yesterday’s post, I want to build a reputation of being here to support the community but I also want to maintain some connection to my previous self. The sewing projects are my link to sustainability, I also view them as a way to bring in some small amount of income while I’m stuck at home.

Do you have any big projects you’re focusing on in 2014?

Will you join me in raising awareness of Invisible Illnesses by sharing Foggy Frog and the Pain Gang with your network?

Invisible Illnesses: Raising Public Awareness & Gaining a Reputation

I’m posting this a bit late, but it is in response to yesterday’s Daily Post’s Zero to Hero task and Daily Prompt:

Do you have a reputation? What is it, and where did it come from?

Is it accurate? What do you think about it?

I have always had a reputation of being a bright and bubbly individual, easy to approach, who takes a positive approach to almost anything life throws at me. Sustainability was my life, in both work and personal life I tried to spread the word to be sustainable and do things in an environmentally friendly way.

Today I don’t want to talk about that me, although it is a big part of me and I have a reputation there, I want to talk about the current me. Home on sick leave, my reputation has changed (in my mind at least).

Moving from sustainability expert to invisible illness advocate

(or a combination of the 2)

Since becoming ill, I have begun to feel like I have a reputation for being lazy and unsociable (is that even a word?).

Photo (c) E. S. January, 2014

But I know, deep down, that this isn’t me and I know that the people who know me well shouldn’t be thinking that way. So, I decided to focus on what I could do to build myself a reputation that fit with the old me, but toned down to pace and fit with my illnesses.

To build this reputation, I started this blog. A way for me to clearly outline what I’m doing and how much it takes out of me. As a result of this blog, I have built a whole new group of friends here online and through my Facebook page and twitter account. It has also helped me realise how wide the problem is of lack of awareness in the general population, not only for the illnesses I currently suffer from (ME/cfs, Fibromyalgia and Pelvic Congestion Syndrome) but for all invisible illnesses.

To maintain some form of sustainability in my life, I am trying to make my activities as sustainable as possible. For example, I use recycled or secondhand material whenever possible for my sewing projects.

Sustainability comes into my campaign to raise awareness for invisible illnesses in the way I am forming my campaign. I really want it to be a project that comes from the community for the community. So, I’m building up a reputation of being a positive and cheerful individual who people can approach for support.

I am building a reputation, like the one I have in the field of sustainability, of being able to explain things in a clear and simple way that everyone can understand.

I want to ask all of you to become a part of my project to bring Foggy Frog and the Pain Gang to the world.

Join in the campaign by following my blog and following me on Facebook and/or Twitter. By doing this you will get all the regular updates on the project and get the opportunity to participate in some great give aways and contests I am planning to hold over the next month or so.

So please, if you don’t already, follow my blog and choose at least one social media channel to follow me through. The links to do all of this can be found in my side bar.

Thank you,

Megan