A lot’s been happening around here lately! Preparations are underway for the Foggy Frog and the Pain Gang Book Launch and the AAEE 2016 Conference.
I’ve also added a bit more variety to my exercise routine by joining the new local gym (Council owned and operated).
The main reason I’ve joined is so that I could add swimming into my exercise routine but I’m also going to try out some of the classes they run.
Obviously, I’m going to focus on pacing and aim to not overdo it by adding too much too quickly but I’m very excited to have a bit more variety in what I’m able to do.
To date, my exercise routine has consisted of walks and riding my electric bike (or the stationary bike if it’s raining). I was doing some stretching and yoga, but this was very random (I wanted to do it but got bored of the same stretches over and over).
At the new gym I have access to an internal pool, aqua aerobic classes, body balance and mobilise (low impact stretching and weights) classes, and other gym equipment if I need it.
My plan is to use the pool twice a week, and try out the various low impact classes. In fact, I’ve already started…
After my swim on Monday…
I swam (8 laps of slow breast stroke) yesterday and today I tried out the Mobilise class. The class is stretching and light weights. I paced myself during the class; doing less repetitions, not using any weights and taking breaks when I felt I needed it. We’ll see tomorrow whether or not the class was too much for me but I think it was ok.
Outside of the gym, I’ll still ride at least once a week and go for walks with E (we’ve actually started playing that Pokemon Go game which has got us out of the house together more often).
The view from halfway through our walk on the weekend
Thanks to my current medication routine I’ve had less pain and slightly more energy than usual lately which has been great for allowing me to be more active.
What exercise do you do on a regular basis?
P.S. You may have noticed I didn’t post last week, because of everything going on at the moment I’m likely to be posting either once a week or fortnightly for the foreseeable future.
We’ve reached the end of our 20 Week No Buy Challenge and over the weekend Rach and I caught up to celebrate our successes.
In keeping with the No Buy theme, we celebrated with a homemade lunch of soup and sourdough bread with a glass of sparkling wine followed by homegrown peppermint tea and homemade peanut butter cookies.
Celebrating the end of our 20 Week No Buy Challenge with homemade soup and sourdough and a glass of bubbles…
As we ate we discussed the challenges we faced during the 20 weeks and what we felt we’d learnt.
My biggest challenge was sticking to the rule of not eating out if I was alone. There were several days where I found myself out and about longer than I had planned to be and in a position where I was contemplating takeaway food. Luckily each time this happened I either made my way to my mum’s and ate there, or someone was available for me to eat out with so I didn’t actually break the rules.
My second biggest challenge was accepting that some things that at the beginning of the challenge I classified as non-essential became essential purchases during the 20 weeks. The t-shirt I’m wearing in the photo above was purchased during the 20 week challenge but it was an essential purchase as I lost at least 3 of my t-shirts and 2 dresses to old age (they became see-through or massive holes that weren’t worth repairing were made while carrying big loads of things into the house). I also gave away a couple of t-shirts because I wasn’t wearing them (they weren’t comfortable on me or they didn’t go with enough of my other clothes). Thus the new t-shirt in the photo above…
Having said that, none of the old clothing went into landfill, I have either cut them up for rags (the see through and holey ones) or I donated them to charity or someone I knew who would get more wear out of them than I was.
Lessons Learnt
I’ve struggled a bit with identifying the lessons I’ve learnt during this challenge, mainly because I didn’t find it all that difficult to comply with and because a lot of what I ‘learnt’ I already knew (the challenge just reinforced it).
The main things it reinforced for me were:
Always prepare for the unexpected.
I could have avoided the unexpected needs for eating out by always taking at least a small snack with me when I leave the house. I did do this most times and it saved me a few times from having to buy something. I also took my zero waste eat out kit (straw, cloth napkin, bamboo spork) everywhere with me and used it on several occasions to avoid using disposables and most trips I took my keep cup as well.
If you can identify your values, it’s easier to say ‘No’ to the things that don’t fit with them but it’s also important to be aware of other people’s values as well.
The No Buy Challenge fit well with my values of being conscious of the impact my actions have on the environment and the wider community. There were several purchases we made as a family (E wasn’t participating in the challenge) that, if it was just me, I would not have made but that were made because they fit with E’s values. There were other purchases we considered that I said No to because they didn’t fit well with my values and I couldn’t see any long term benefit for anyone in the family.
Each of us are individuals and we need to make compromises at times if we are to maintain healthy relationships. We need to set our own boundaries about what is acceptable and what isn’t.
Buying is the cultural norm and it’s difficult to move away from these habits.
Although I’ve never been a big spender, participating in this challenge made me more aware of the times where, in the past, I would’ve just made a purchase without really thinking about it. Even most of my few purchases during the challenge (the earrings early on, a duplo set and a few children’s books secondhand, and the t-shirt mentioned above) were made without much thought about them before hand. It was only after I bought them that I actually considered what they meant in terms of the challenge.
Rach had a lot more trouble with this than I did, there were several times during the challenge where she contacted me because she was considering a purchase and needed to discuss the options and whether they were actually essential. She also found that she enjoys shopping and for that reason alone it was difficult to stop.
Not buying new things makes you appreciate what you have.
Both Rach and I removed things from our houses during this challenge. Rach gave several bags of clothes to charity and took the time to assess what she has in her wardrobe. I, as mentioned above, lost several items of clothing to old age and gave away a few items that I didn’t wear.
We’ve both realised that we have enough, and for some things (clothes in particular) more than enough, in our lives. We are grateful that we live in a society where we have choices for clothing, shoes, kitchen appliances and other household items. We are not living below the poverty line and don’t need to struggle to meet our basic needs.
I like making conscious choices that align with my values.
Although it takes more time, during this challenge I’ve added several more homemade items to our lives. As well as the laundry liquid, cloth napkins, peppermint and fruit we already make or grow, I’ve been trying my hand at making my own sourdough bread (so far no reactions) and other ‘old fashioned’ recipes that are better for my health and the environment.
Although there are a few purchases I now need to consider making (new underwear and sandals to start with) I’m still going to be conscious of my purchases and my allocation of my time and resources. This No Buy Challenge has helped me to progress my larger challenge of living a simple, sustainable and meaningful life.
Did you participate in the challenge?
If so, what did you learn? If not, would you consider a challenge like this in the future?
One of the most popular posts on the blog here seems to be the 100 Goal Challenge post, so I thought I’d do an update on where I’ve gotten in almost 2 years.
As a reminder I broke my goals down into my Defining the Best ME categories (Mental, Physical, Wisdom) with some actions fitting into more than one category.
Start/Run my own business
I’ve achieved this one! Once I worked out I wouldn’t be able to go back to my full time job at the Council, I began doing some consulting work. My business, LiveKen, focuses on helping others to live simple, sustainable and meaningful lives with or without chronic illness. At the moment I’m focused on finalising the Foggy Frog picture book, helping one local Council to develop a 3 year Environmental Action Plan, and another to develop a biodiversity hot spot map and fact sheets for local schools.
Have 2 children/start a family
Not yet, as per my recent posts E and I are currently discussing our options. I have a few health issues that need to be sorted out before we can begin trying.
Develop/run educational resources/sessions for business, community and schools/unis
See number 1 – I’ve started doing this. I’d like to increase this over time.
Visit the Great Barrier Reef
Not Yet.
Visit Tasmania
Not Yet.
Work internationally
I have in the past but would like to again.
Travel to Europe/UK
Not Yet.
Do 30 minutes walk/run/ride daily
Building up slowly, currently doing a short ride every 2-3 days but no dedicated walks (just step count that I mainly get around the house).
Daily yoga
Hit and miss on this one at the moment.
Daily meditation
Most days I get this.
Travel to Africa/See wild Gorillas
Not Yet.
Participate in 12hr Rogaine (I did this when I first got ill – before I realised how serious it was – and would love to have the energy/low pain levels to do it again)
I participated in a 4hr one on the weekend (managed about 2 and a half hours).
Contribute to charity regularly
I contribute to charity on an adhoc basis at the moment.
Publish Foggy Frog Picture bookThe dummy book for Foggy Frog…
This is much closer now! Today I’ve finished the inside pages (we need to print to check colours), we now just need to design a few cover options for our backers to vote on.
Work nationally
Have done in the past but want to expand current business when I’m up to it.
Have annual holidays
We do this, at least a short camping trip each year.
Build own house
Not Yet.
Annual income of $100,000 (This one I’m really not sure about, I’d be happy with earning just enough to live off, but the process said to dream big so that’s what I tried to do)
Not yet, and still not sure about this one… I may end up changing it next time I review.
Retire with enough financial security to continue annual holidays
Not yet, but I think we’re on track to do it.
Celebrate our 50th wedding anniversaryOn our Wedding Day Photo (c) M. Vovers, 2011
It’s our 5th this year (a 10th of the way there)!
Continue to learn something new each year
I believe I’m on track with this. I’m constantly trying new things.
Learn to sew my own clothesPatterns I’ve bought but not sewn yet
Still just doing basic sewing at this stage (pillows, napkins, blankets, etc)
Live as sustainably as possible
Working on this one… I’m still decluttering and removing unnecessary items from our lives, aiming to buy second hand as much as possible, and reducing our waste stream as much as possible.
Complete my Bachelor of Education
I have decided not to continue with this one, instead I’m aiming to complete my Certificate IV in Training and Assessment.
Help others live sustainablyThe last campaign I ran before getting ill in 2013. Focusing on riding and travelling to work.
Working on it. I discuss ideas in my blog, and I’m working with local Council’s to move communities towards more sustainable options.
Help others understand chronic illness
Working on it… The picture book will be out soon
Have monthly dinner parties with family and friends
This has not been happening so far.
Have monthly games afternoons with friends (board games)
This hasn’t happened monthly, but we have had more games afternoons than in the past.
Clean out old and unused things and give to people who will use them
I’ve been doing this, but it is an ongoing process.
Set up my own space for sewing, drawing and studying
I now have my desk set up in the study for drawing and studying, and a small desk for sewing in the spare room.
Plant and maintain veg gardenOur veggie garden last year
There is currently nothing in our veggie garden apart from herbs but I’m working on this one.
Find a mentor(s) to help me achieve my goals
I think this is an ongoing thing… Just taking advice whenever I can from whereever I can.
Schedule time weekly to reflect/review my goals and achievements
I’ve been keeping a daily journal instead.
Achieve work/life balance (need to work out what this actually means to me)
This is my focus this year, I feel I’m finding more balance at the moment.
Have a weekly ‘date’ with E
We aim to do something together each week, even if it’s just a games night at home.
Pay off our mortgage
We’re working on this one. Thanks to support from E’s parents we have gotten the mortgage below $100,000.
Only buy quality items
Ongoing, but a focus whenever we buy things.
Save 10% of my income
Ongoing, I have set up an automatic transfer to put $45 into my Super account each fortnight (retirement fund here in Australia) and automatically have 10% of anything I earn through my casual work go to Super. I haven’t worked out if the $45 a fortnight will add up to 10% of what I earn through consulting this year yet.
Organise a financial plan
I have a very simple 5 year plan written up and a budget that we work within (I try and keep it flexible as long as we don’t go into debt throughout the year). I haven’t fleshed out the plan with detail yet.
Teach my children how to save, invest and create wealth for themselves (need to teach myself this first so I know what I’m talking about… still not too clear on investments and wealth creation)
Slowly teaching myself through reading books and blog posts on financial management so that when we have children I can teach them.
Teach my children to live sustainably
Need to have children first!
Ensure I have regular health checks
I see my doctor and specialists regularly.
Read every week (would love daily if possible)
I read a lot of blog posts these days, I want to work on reading more physical books as well.
Learn to live a fulfilling life with my chronic illnessesRetrieved from Facebook.
Working on it! I’m getting better at pacing and have managed to add in activities that fit with my values and make me feel like I’m contributing to my community.
Swim regularly 1-2 x a week
Waiting for our local pool to open as there really isn’t anything close to us at the moment.
Visit T in Hong Kong
Not yet, planning to visit her this year some time (she’s coming here this week to go camping with me and E over easter).
Develop networks to help make my ideas reality
Working on it.
Visit Japan
Not yet.
Teach my children to cook
Need children first.
Schedule time to draw
Haven’t made this regular yet.
Learn to belly dance
Not yet.
Get a family dog
Not yet.
Participate in a yoga/health retreat
Not yet.
Find a hobby E and I can do together (used to hike regularly but I’m not up to that at this stage)
We’ve been playing a lot more games together. I’m hoping to add short walks back into our routine.
Learn to be more assertive
Working on it.
Get monthly massages
I’ve been using my massage chair regularly.
Learn to play the guitar better
Not yet.
Write 2 blog posts a week
Most weeks I’m achieving this, some weeks I only manage 1 if I’m extra busy or in a crash.
Spend a day by myself every 6 months focusing on reviewing and renewing my goals and plans
I’ve done this maybe every 12 months so far, I still would like to increase it to every 6 months.
Find a weekly routine that works (I feel very flustered lately as I can’t settle into one routine with things changing all the time)
This is still constantly changing but I’ve found a flexible schedule works better for me. Instead of a fixed routine I’ve been working to only schedule 2-3 activities a day and leave a lot of space so I don’t get flustered.
Write a will
Not yet.
Go on a 4 week holiday by myself
Not yet.
Write regular articles for other blogs/websites/media sources
Not yet. I need to be more consistent writing for My Invisible Life and other people who have contacted me.
Learn to cook more delicious and healthy dairy and gluten free meals
I’ve increased our repitoire of meals but this is an ongoing goal.
Spend time in nature regularlyA bird bath on a community walking trail near work.
I try and spend some time outside each and every day.
Enter writing competition and win
Not yet.
Organise an annual event to raise awareness of, and funds for research into, chronic illness
Not yet.
Act as a mentor for someone
Not yet.
Have quarterly girls nights/afternoons/days with my closest friends
I’ve caught up with people a bit more regularly but not quarterly yet.
Get Foggy Frog into libraries, schools and homes around the world
I’ve had one library contact me already. I need to publish the book first though.
Keep a gratitude jar and read the contents yearlyMy gratitude corner (bedside table)
I’ve moved away from the gratitude jar, instead I include gratitude in my weekly ‘Share My World’ post and write in my journal.
Create a neighbourhood/community sustainability group to catch up and share ideas
Not yet.
Be present and mindful every day
I’m getting better. This is a work in progress goal.
Develop a morning and evening routine
Morning – check emails in bed, dress (shower if necessary), breakfast and tea, one major task.
Evening – dinner, tv with Erik, teeth and pills (shower if necessary, sponge bath otherwise), journal, meditation.
Keep a regular journal
I’m using it to track my daily activities. I set up to 3 activities each night for the next day and then add extra if I manage more during the day.
Incorporate physio recommended exercises/stretches into daily life
I’m doing this. I do my pelvic stretches throughout the day and I’m currently focused on maintaining my step count.
Declutter my life
Working on it, I’ve removed many items from our house but still working to declutter my calendar and feel that this goal is an ongoing work-in-progress kind of goal.
Spend a weekend away with E every 6 months
This hasn’t happened but we have had a few weekends away in the last few years and have a few planned for this year.
Learn more about business management and marketing
I read blogs and books to help me better understand what I should be doing with my business.
Deliver a TED talk (about my work and education programs?)
Not yet.
Smile every dayChristmas 2013…
I think I’ve achieved this one… To be honest I haven’t tracked it but know that I smile quite often.
Learn to deal with conflict
Working on it. I’m getting better at dealing with conflict and standing up for myself.
Write every day
I write my to-do list every day. Once a week, I write my blog posts. I would like to add more writing.
Frame our pictures and display them in the house
Not yet, reconsidering as I’m reducing the amount of ‘stuff’ in our house.
Interact with people who support my vision
Doing this as much as I can.
Make a firm career decision and pursue it
Still working on this. I’ve got a vague idea of where I want to go but need to clarify some details.
Be well regarded and respected for my work
Not something I feel comfortable judging for myself but from the feedback I get I’d say I am.
Develop a realistic business plan, implement the plan and follow through
Because of my health I’m still struggling to develop a realistic business plan that can be implemented and followed through. At this stage I’m just working to complete the projects I have already and then I’ll reassess this.
Assist 10 people to live a fulfilling life with a chronic illness
Not yet, working on it.
Get my superannuation strategy working for me
Working on it, I’m making sure that I get something into my super regularly.
Maintain a healthy weight
My weight has stayed about the same for the last few years.
Have regular skin checks
Had one a year and a half ago. I believe they suggested every 2 years.
Have monthly goals to focus on
This hasn’t been working for me. I need to reassess the goals that I set.
Build a team around me to help me reach my goals
Working on it.
Be around for my children as much as possible
Need children first.
Visit my Uncle in Vietnam
Not yet.
Buy local as much as possible
I try and do this. Still working on improving this.
Focus on experiences not possessions
Working on it.
Eat vegetables with every meal
Mostly.
Focus on the good things in life
I found this little guy while walking with a friend Christmas Eve 2012… He made us smile, we took photos but left him for others to find and enjoy as well.
A quick No Buy Challenge Update: I did swap one top I hadn’t worn in over 6 months for a new striped top which I’ve already worn 3 times in the last week. Other than that no purchases for me this week.
Have you completed your 100 Goal Challenge?
If so, what have you learnt from reviewing the goals you’ve set?
If not, has my list helped you identify a few more things you could add to your own?
Before I get into Share Your World for this week I wanted to share an interesting day that’s coming up soon. Now, there seems to be some confusion about which day it actually is but sometime in the next week it’s National Napping Day. I’m unclear about whether this is an American day or some other country but I’ve seen it advertised as being either tomorrow (11 March) or Monday (14 March). (Update: National Napping Day is 14 March)
I recently found out from Casper, mattress makers from the US, about National Napping day and they had this interesting infographic to share:
I don’t normally share things from specific companies but I thought this was a simple description about the benefits of napping, something a lot of us with chronic illness do. The fact that Casper contacted me had no direct influence on my desire to share information about this day and I’m not endorsing the company’s products (in fact I’ve never seen them), I’m just utilising the effort they’ve already used creating this infographic. This is not a sponsored post in any way.
Now on with the post…
Share Your World – Week 10
What would you ask for if a genie granted you three wishes?
First of all, I’d wish to be free from the chronic pain and fatigue that I live with. Without that I’d be able to do most of the things I currently want to do but can’t.
Secondly I’d wish for my family and friends to be in a position that they feel comfortable spending time on things most important to them. This would mean more time for meaningful catch ups for all of us.
Finally, I’d wish the Genie free (as long as (s)he seemed to be a good Genie like in Aladdin).
What experiences are most meaningful to you?
At this point in time the mosts meaningful experiences to me are the small ones when I get to do something meaningful with someone I love. Meeting the newest addition to our family (our closest friends just had their second child who we got to meet last night at just 3 days old) was amazing. Watching the thunder and lightning from under our new pergola with E during the week. Having a deep and meaningful conversation with E, or my mum, or one of my closest friends.
As a kid, what did you want to be when you grew up?
Apart from that I went through phases of wanting to be a music star (performing in musicals), a vet, and a zoo keeper.
Complete this sentence: The best day of my life was….
This is a hard one, as there are quite a few to choose from and obviously my life isn’t over so there is likely to be many more amazing days to come…
I’d have to say that one of the best days of my life so far was the day I married E.
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It was such an amazing and relaxed day filled with the love and support of our family and friends. I spent time planning and creating each aspect of the day so that it aligned with our values. A beautiful ceremony in E’s Amma and Uppa’s backyard with flowers from friend’s properties followed by a picnic lunch in a local park with baskets and blankets and glasses used on the day as favours for the guests. All the decorations I made myself and the cakes were made by me, Amma and one of my friends. Tea and coffee was served in Royal Vale sets owned by Amma and E’s mum.
Even over 4 years later, people who attended are still commenting on how much they enjoyed the day!
Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?
In the last week I’m grateful for improving health that has allowed me to participate in several social outings and run a workshop for one of my projects. I’m grateful for E allowing me to broach the topic of family planning again and being honest about his feelings, helping me understand why we’ve been struggling to talk about this up until now.
This week I’m looking forward to celebrating my mother-in-laws birthday and continuing to work towards my goals of improved health.
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?
I’ve mentioned many times about trying to maintain some form of routine and pacing as a way of managing my health. Now it’s something I need to refocus on.
I’ve got goals and dreams that I want to achieve within the next few years, and in order to do them I need to be as healthy as I can be. As I’ve previously mentioned, over the last few months I’ve begun adding work back into my life and this has thrown the routine I had set for myself out the window.
Why is it so important for you to have some form of routine?
In order to maintain a lower level of pain and more energy I’ve found the only thing that even works a little is pacing myself. Without routine it’s hard for me to keep my step count consistent and to actually motivate myself on my crash days.
I want to increase my step count back up to where I was before I crashed around Christmas last year (an average step count of 7,000). To do this I’m slowly raising what my minimum step count is for crash days. Over the last 3-4 months I’ve raised my minimum step count from less than 2,000 to 3,500. I’m raising in 500 step intervals every few weeks.
But what about the things that happen in life? You can’t plan everything!
No, you can’t but you can set yourself up so that you have some reserve for the unexpected while still maintaining a general routine on a day to day/week on week basis.
What’s your plan?
At this stage I’m still formulating a new plan for pacing and setting a routine that is flexible enough but I think it will look something like this…
8 – 8:30 am
Do some deep breathing, get up and do a short yoga sun salutation
8:30 – 9:30 am
Shower or bath (pain relief technique) and get dressed, rest if necessary
9:30 – 10 am
Breakfast
10 am – 12 pm
High energy work/housework/appointments with regular rest breaks
(no longer than 1 hour activity at a time without a break)
12 – 1 pm
Lunch
1 – 3 pm
Lower energy work/housework/appointments with regular rest breaks
(no longer than 1 hour activity at a time without a break)
3 – 5 pm
REST (tv or nap depending on energy levels)
5 – 7 pm
Make and eat dinner
7 – 9 pm
TV
9 – 9:30 pm
Pelvic Stretches, prepare for bed
10 pm
Bed
It’ll take me a while to build up to this (especially the getting up and going to bed at a regular time) but it’s important to me to push myself without going past my limitations.
Have you ever tried to set yourself a routine? How successful was it?
I was planning to move everything over to the blog on my new business website, LiveKen, but have found that not many people have been reading the posts over there and that the audience I’ve built here haven’t seem to have migrated.
So I’ve reconsidered how things have been working and I’ve decided that I’m going to just link the blog here at My Chronic Life Journey to the LiveKen page. That is, this is now the LiveKen/My Chronic Life Journey blog.
I may, over time, move the posts we’ve made over at LiveKen to this site just so we have everything in one place. The LiveKen business site will remain just that, a page for sales and to provide information on our services and products.
These changes may take me a few weeks/months for me to implement (especially as I don’t have a background in IT) but in the meantime I’m going to set myself a new routine that includes regular posts here and regular times working on paid jobs.
At this stage, I’m thinking a regular schedule of 2 posts a week (Tuesday and Thursday).
I’m hoping this process will help me further simplify my routine and establish better balance and quality of life.
Let me begin this post of with an apology for being missing in action for the past few months. For those of you who like our Facebook page you’d be aware that I’ve had to take some time off to focus on myself and trying to get things in a way that I can sustain and maintain my lifestyle.
In 2014, I focused my efforts on being the Best ME I could be. I focused on working out what my limits are and (more importantly) what I’m still capable of physically, mentally and spiritually.
It was a busy year and with your help and support I was able to raise the funds necessary to publish the Foggy Frog and the Pain Gang picture book (to happen this year). I also identified my physical boundaries and worked on pacing myself to maintain and even slightly improve my health throughout the year.
In the last few months, while I’ve been missing in action I’ve been focused on simplifying my home and my lifestyle so that I can focus on what is important to me.
This year, 2015, I will be continuing my journey on simplifying and creating a sustainable lifestyle that doesn’t impact negatively on my health. I will be sharing this journey with you through this site and our sister site LiveKen. I’d love to have all of you join me on this journey.
I have realised that in my home and in my life I have enough, if not too much, of many things. I have enough people around me who love and support me. I have enough health to appreciate what happens around me in my life and can do enough to keep me happy. I have enough physical items and would actually like to reduce the amount dramatically as less clutter means more time and energy to focus on what is important. Most importantly, I am enough! I would like my health to improve (I’d love a complete recovery) but realistically I am enough and I don’t need to try and change who I am to make others happy.
My focus this year is on being grateful for what I have and doing what I can to help others have enough and be enough to be happy with their lives.
Do you have a focus for 2015?
Are you ready to join me on a journey of gratitude and reflection?
My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.
I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.
Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.
There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.
Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.
Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.
Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.
If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.
I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.
Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.
What is your JUST ONE story?
Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?
At the beginning of the year I shared with you my aspirations for 2014 to define the best me (my equivalent to a New Years Resolution).
As we’ve reached (or actually crossed) the half way point for the year I thought I’d take a moment to share with you my progress with these aspirations.
Although I didn’t have set goals, I had three key areas of my life I was going to focus on:
Mental
Physical
Spiritual/Emotional/Wisdom
For the first few months my 3 weekly posts focused in on each of these topics through Mental Mondays, Wisdom Wednesdays, and Physical Fridays. Although I’ve stopped dividing my posts up into these categories I’m still considering these areas in my day to day and long term planning.
So, where have I gotten to so far in Defining the Best Me?
Mental
I started the year off without any clear idea of where I was heading with my mental activities. My job, before becoming ill, provided lots of mental stimulation as did the study I was doing at the same time. Since becoming ill though I hadn’t even read a book, let alone done anything that required strenuous thinking.
My Mental Activity end of June 2014
I began the Foggy Frog Campaign and ran a Kickstarter Campaign to raise the funds necessary to publish the picture book ‘Foggy Frog and the Pain Gang’. This was a brand new experience for me and used a lot of my mental capacity at the time of the campaign. I’m still working towards delivering the picture book and I’m now almost half way through the basic hand-drawn pictures that are forming the basis of the illustrations for the book (another new experience!).
I have begun reading daily again.I got new glasses which allowed me to read more than a few sentences without my eyes going blurry. I’m reading some fiction but mainly books on building a business, being the best I can be personally and professionally, environmental and sustainable activities, and simple living.
I’ve started working on a business model around the Foggy Frog campaign.LiveKen has been developed as a face for all our information, education and empowerment work assisting individuals to live simple, sustainable, meaningful lives with or without chronic illness.
I’ve started studying again. I’m working on one unit towards my Bachelor of Education (Primary), although I’m having to assess whether I’m going to be able to complete this degree due to my health issues and the university not being flexible about delivery of the practical units. I’m working towards a Certificate IV in Training and Assessment. I’m participating in a few short courses around starting my own business and illustrating the picture book.
I’ve joined a writers group. I went to my first meeting last night. I really enjoyed it and will attend again, although I think I’ll need to leave early as I’m struggling today mainly due to how late the course went. It’s a group where we read and critique each others writing and participate in writing challenges each month.
Physical
At the beginning of the year I wasn’t really doing much at all in terms of physical exercises or activities around the house. When I did do anything I found that I was paying for it for days or even weeks afterwards with increased symptoms.
My Physical Activity by end of June 2014
I’m walking or riding daily. Either a 15 minute walk or a 4 minute ride on my stationary bike every day.
I can do around 10 minutes of Yoga daily. Just basic stretches, it forms part of my morning routine along with feeding the fish, changing the cats’ litter tray and meditation.
3 days a week I include some body weight exercises from the Exercise Physiologist. Although I had built up to doing 2 sets of these on the days I was doing them, I’ve had to cut back in the last month due to increased symptoms and extreme fatigue (I think this may be partly due to winter and partly due to an increase in my incidental daily activity levels).
I’m doing some cleaning every day. I started with a small amount of dishes every day and a load of washing twice a week, now I’m adding some sweeping every day (how much depends on my energy levels).
I try to get out of the house at least every 2nd day. This may be just going to sit in the park up the road. Once a week it’s a trip to town for appointments followed by some time at my mum’s house.
Spiritual/Emotional/Wisdom
This is an area that I’ve found to be more and more important to me as I move through this journey. I have done a lot of reading around this area and have incorporated many new skills in my daily life.
My Spiritual Activity by end of June 2014
I meditate daily. At least once a day (in the mornings), and some days many more times, I sit with my eyes closed and just focus on my breath or on the sensations in my body.
Mindfulness. I try to incorporate mindfulness into everything I do. For every activity I’m doing I try to be single-minded and focused on that one task for a set time and then take a break. While doing an activity, I’m attempting to be mindful of my thoughts, urges, and the messages my body tries to send me.
Simplify.This is key to where I am now in my journey. I’m doing everything I can to simplify my life, simplify my possessions, and identify exactly what is important to me. I will be sharing my journey through this process mainly over on the LiveKen blog but occasionally I’ll write about it here as well.
Defining the Best Me
I’ve listed a lot of things that have changed over the last 6 months above in each of the categories I’ve been focusing on but I haven’t yet stated what this all means in terms of defining the best me I can be. That’s mainly because I’m still experimenting and exploring.
I can say that the best me, with or without my chronic illnesses, is someone who lives true to her values. I’ve shared my thoughts on values before and will share more in the future but I believe my core values are:
Community is essential (Family and Friends, and the wider community)
Simple and Sustainable
Mindful and Meaningful
Authentic, Genuine and Respectful
As you’ll probably notice, these values also line up with the LiveKen values as well.
How are you going with your New Year resolutions or aspirations?
Have you been working on defining who you are this year as well?
Liveken - my chronic life journey 