I’ve joined a Gym! Exercising with Chronic Illness

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.

Moving…

Making choices, clearing room

Time to think, to stretch, to value, to love

Being present, living life

Over the last few months I’ve focused on building up my exercise levels to a point that I can maintain a consistent exercise regime including stretches, a relatively consistent step count, and regular bike rides on my electric bike. Moving my body with the aim of reducing pain levels and increasing energy.

I’ve also helped several friends and family members to move house. It’s been interesting to see the different ways people pack, how they prioritise what to keep, add or give away, and who they have to help them move. I am glad that although I physically couldn’t help much with any of the moves, I was there to support my friends and family.

My brain has been less foggy lately as well. Yes, I still have days that I’m crashed and everything is a struggle but in general I’ve had a clearer head. This has let me move forward on my projects, progress my study, and consider taking on new opportunities that fit my values and allow me to grow.

Everyone in life is moving in one way or another. In most cases though we’re all moving in many different ways all at once.

Physically, mentally and emotionally we’re always moving.

In what ways are you moving at the moment?

 

Challenges and Lessons from our 20 Week No Buy Challenge

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?

An Update to the 100 Goal Challenge

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.

1. 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.
2. 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.
3. 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.
4. Visit the Great Barrier Reef
   • Not Yet.
5. Visit Tasmania
   • Not Yet.
6. Work internationally
   • I have in the past but would like to again.
7. Travel to Europe/UK
   • Not Yet.
8. 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).
9. Daily yoga
   • Hit and miss on this one at the moment.
10. Daily meditation
    • Most days I get this.
11. Travel to Africa/See wild Gorillas
    • Not Yet.
12. 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).
13. Contribute to charity regularly
    • I contribute to charity on an adhoc basis at the moment.
14. Publish Foggy Frog Picture book

    

    The 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.
15. Work nationally
    • Have done in the past but want to expand current business when I’m up to it.
16. Have annual holidays
    • We do this, at least a short camping trip each year.
17. Build own house
    • Not Yet.
18. 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.
19. Retire with enough financial security to continue annual holidays
    • Not yet, but I think we’re on track to do it.
20. Celebrate our 50th wedding anniversary

    

    On our Wedding Day
    Photo (c) M. Vovers, 2011

    • It’s our 5th this year (a 10th of the way there)!
21. Continue to learn something new each year
    • I believe I’m on track with this. I’m constantly trying new things.
22. Learn to sew my own clothes

    

    Patterns I’ve bought but not sewn yet

    • Still just doing basic sewing at this stage (pillows, napkins, blankets, etc)
23. 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.
24. 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.
25. Help others live sustainably

    

    The 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.
26. Help others understand chronic illness
    • Working on it… The picture book will be out soon
27. Have monthly dinner parties with family and friends
    • This has not been happening so far.
28. Have monthly games afternoons with friends (board games)
    • This hasn’t happened monthly, but we have had more games afternoons than in the past.
29. 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.
30. 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.
31. Plant and maintain veg garden

    

    Our veggie garden last year

    • There is currently nothing in our veggie garden apart from herbs but I’m working on this one.
32. 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.
33. Schedule time weekly to reflect/review my goals and achievements
    • I’ve been keeping a daily journal instead.
34. 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.
35. Have a weekly ‘date’ with E
    • We aim to do something together each week, even if it’s just a games night at home.
36. 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.
37. Only buy quality items
    • Ongoing, but a focus whenever we buy things.
38. 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.
39. 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.
40. 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.
41. Teach my children to live sustainably
    • Need to have children first!
42. Ensure I have regular health checks
    • I see my doctor and specialists regularly.
43. 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.
44. Learn to live a fulfilling life with my chronic illnesses

    

    Retrieved 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.
45. 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.
46. 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).
47. Develop networks to help make my ideas reality
    • Working on it.
48. Visit Japan
    • Not yet.
49. Teach my children to cook
    • Need children first.
50. Schedule time to draw
    • Haven’t made this regular yet.
51. Learn to belly dance
    • Not yet.
52. Get a family dog
    • Not yet.
53. Participate in a yoga/health retreat
    • Not yet.
54. 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.
55. Learn to be more assertive
    • Working on it.
56. Get monthly massages
    • I’ve been using my massage chair regularly.
57. Learn to play the guitar better
    • Not yet.
58. 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.
59. 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.
60. 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.
61. Write a will
    • Not yet.
62. Go on a 4 week holiday by myself
    • Not yet.
63. 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.
64. 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.
65. Spend time in nature regularly

    

    A bird bath on a community walking trail near work.

    • I try and spend some time outside each and every day.
66. Enter writing competition and win
    • Not yet.
67. Organise an annual event to raise awareness of, and funds for research into, chronic illness
    • Not yet.
68. Act as a mentor for someone
    • Not yet.
69. Have quarterly girls nights/afternoons/days with my closest friends
    • I’ve caught up with people a bit more regularly but not quarterly yet.
70. 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.
71. Keep a gratitude jar and read the contents yearly

    

    My 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.
72. Create a neighbourhood/community sustainability group to catch up and share ideas
    • Not yet.
73. Be present and mindful every day
    • I’m getting better. This is a work in progress goal.
74. 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.
75. 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.
76. 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.
77. 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.
78. 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.
79. 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.
80. Deliver a TED talk (about my work and education programs?)
    • Not yet.
81. Smile every day

    

    Christmas 2013…

    • I think I’ve achieved this one… To be honest I haven’t tracked it but know that I smile quite often.
82. Learn to deal with conflict
    • Working on it. I’m getting better at dealing with conflict and standing up for myself.
83. 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.
84. Frame our pictures and display them in the house
    • Not yet, reconsidering as I’m reducing the amount of ‘stuff’ in our house.
85. Interact with people who support my vision
    • Doing this as much as I can.
86. 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.
87. 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.
88. 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.
89. Assist 10 people to live a fulfilling life with a chronic illness
    • Not yet, working on it.
90. Get my superannuation strategy working for me
    • Working on it, I’m making sure that I get something into my super regularly.
91. Maintain a healthy weight
    • My weight has stayed about the same for the last few years.
92. Have regular skin checks
    • Had one a year and a half ago. I believe they suggested every 2 years.
93. Have monthly goals to focus on
    • This hasn’t been working for me. I need to reassess the goals that I set.
94. Build a team around me to help me reach my goals
    • Working on it.
95. Be around for my children as much as possible
    • Need children first.
96. Visit my Uncle in Vietnam
    • Not yet.
97. Buy local as much as possible
    • I try and do this. Still working on improving this.
98. Focus on experiences not possessions
    • Working on it.
99. Eat vegetables with every meal
    • Mostly.
100. 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?

Share Your World – Week 11

No chatting today, instead straight into the Share Your World questions…

How many siblings do you have? What’s your birth order? 

I have two siblings, a brother and a sister. I’m the oldest, my sister is four years younger than me and my brother is two years younger than her.

The three of us back in the 90’s

We did at one stage have an extended step family which added an older sister, three older brothers and a younger foster sister, but they haven’t been a part of our lives for many, many years.

In a car would you rather drive or be a passenger?

I prefer to be the passenger for longer drives. I find driving uses quite a bit of energy so whenever possible I like to avoid it. When I’m the passenger I have the option of resting or watching the scenery go buy.

When you lose electricity in a storm, do you light the candles or turn on the flashlight? How many of each do you own?

I prefer to light candles but it depends on what we’re trying to do. Once the power went off when we were in the middle of a board game. We sat near an open window and both put on our head torches so we could see what was going on.

In terms of how many of each we own I’m not entirely sure…

We have over 100 tealight candles (I bought a pack many years ago) and probably around 6-10 tall stick candles.

We have 3 head torches and at least a few handheld torches but they’re hiding somewhere in the house or shed and I don’t remember the last time we used one apart from the lantern style one we occasionally use camping.

List at least five of your favorite types of animals?  (any animal to domestic to wild to marine life)

I’m definitely a nature/animal person and it’s hard for me to choose specific animals but this one says ‘types’ of animals so…

1. Fluffy, cuddly animals like kitty cats, puppy dogs, and guinea pigs
2. Hopping, jumping, energetic animals like frogs, kangaroos, and bunnies
3. Intelligent animals like chimpanzees, orangutang and dolphins
4. Feathery, talkative animals with beautiful songs like parrots, honeyeaters, and all forms of birds
5. Bright and colourful animals like butterflies, coral reefs, and birds of paradise.

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

I’m grateful for the feedback from the Pain Clinic on how I’m progressing and on our journey towards starting a family and for the support and encouragement I’ve recieved from my friends, both online and in person, since my post last week on Family Planning with Chronic Illness. I’m also grateful for being able to spend some time with my brother yesterday. It was great to get out to the zoo together.

This week I’m looking forward to my appointment with my Pelvic Pain specialist, the 4-hour rogaine on Saturday and progressing my work projects… We’re so close to completing the Foggy Frog Book and the Biodiversity Trails project!

 

Pacing: How to add new activities

Over the weekend, in between the many social events we had on, we picked up a secondhand electric bike for me to use. This means I can now add riding into my exercise regime, but it also means I need to be aware of how I’m coping and adjust my activity levels to fit this in.

The concept of Pacing is one of the key mechanisms I have in place for managing my chronic illnesses. It’s basically a technique of managing activity levels to maintain a balance of rest and activity that keeps you below your current threshold for exertion.

To date, my pacing has been focused quite strongly on my step count and time spent doing daily activities related to work, social life, and household chores. I have found a balance of mental and physical activity which has allowed me to avoid many potential crashes or increases in pain and fatigue levels.

Since starting the Nortriptyline, I’ve found that I’ve been able to do more physically without increasing my symptoms or crashing for multiple days at a time. My brain is slightly more foggy than it’s been in the past but not as bad as it was on the Cymbalta which caused multiple side effects that impacted my ability to work and participate in activities I wanted to do.

Some of the things I’m considering as I once again adjust my lifestyle to add in and modify my activity levels are:

• What are my long term goals and priorities? As you’d be aware, my current focus is strongly on getting to the point where we can start a family. I’m mostly happy with my current levels of mental activity (work, reading, etc) but want to increase my physical capability and my social life. Many of the social activities I miss participating in had some physical aspect to them; things like participating in rogaine events with my husband and going for walks and rides together. To do these things I need to focus on my health more and increasing my ability to get around independently without relying on the car all the time.
• What is my current baseline for each activity? The major thing about pacing is that it takes into account your current abilities and can lead to increases OR decreases in activity level over time. The first step in pacing is to set a baseline and aim for 10-20% lower than that as your initial target. When adding in new activities it is important to make room for them, so you would lower your targets for other activities to have the energy to do the new one.
• What am I already doing and what can I adjust? Earlier this month I made the decision to drop all my volunteer work for at least the month of March. This has opened up space for me to consider new activities and adjust my other activities to better suit my current needs. To add in riding I’m also stopping any increases in step count and instead focussing on maintaining my current average, my yoga has dropped back to just basic stretches throughout the day, and I’m not taking on any additional work for at least the rest of this financial year.

Once you’ve considered your options and worked out if it’s feasible (and the best use of your limited energy) to add in the new activity, it’s time to create a plan. The plan should always be focused on your energy levels and how you’re coping. This is not a graded exercise program where you increase activity levels and do them at set intervals and in set amounts independent of how you’re feeling!

My plan for adding Bike Riding into my Pacing…

I had my first ride yesterday morning to test the waters. I rode my bike a total of just over 1 km (just around the deadend streets around my house). At the end of the ride I was very sore and quite exhausted but I was already improving by the end of the day and I haven’t had a major decrease in energy levels today (I normally get PEM the day after I overdo anything that lasts for 24-48 hours). To me this indicates that this is a good starting level.

Based on the outcomes of my test ride, my current plan is to do the same short ride every 2-3 days for 2-4 weeks. If this doesn’t lead to any PEM or major crashes, I will then increase the distance by no more than 10% and maintain that level for a further 2-4 weeks. This cycle will be continued until I reach a point that does cause PEM or a major crash, at which point I’ll decrease by 10% and maintain for at least a month before trying any further increases.

At the beginning of April I see my exercise physio and I’ll go through this plan with her. There may be adjustments based on her input.

A quick No Buy Challenge Update: We’ve reached week 15 and the 3/4 mark of the challenge. In the past week I’ve purchased my electric bike (on the approved purchases list) and a duplo set for when our friend’s children come to visit (also approved – not for me and something that has been considered for the last 2 years).

Share Your World Week 10 and a Napping Day

Hi All,

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?

I’ve always wanted to be a mum!

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.

Family Planning with Chronic Illness

A Quick No Buy Challenge Update: Although I was tempted by some of the clearance sales in town (hello fluffy warm down jacket) I did not make any purchases this week that weren’t experience related and shared with those that are important to me. I had lunch with my sister while she was in town (over from Hong Kong for a wedding) and E and I spent a wonderful morning out at the zoo for a behind the scenes tour and breakfast on Sunday.

And now for the post… (Apologies this is quite a long one for me!)

Those of you who know me in real life, and those who have been following my blog for quite a while, know that the ONE thing I really REALLY want from my life is to be a mum.

Unfortunately, around the time E and I were finally having serious discussions about potentially starting a family in the next year or two I had my first major crash.

Almost 3 years later and we’re just beginning to start having serious discussions again, but this time my health is the major road block.

Starting these conversations have been difficult this time around. E has not really wanted to talk about it because he feels like he has to be the bad guy saying No when he knows it’s something that I really want. He has wanted to wait until I was physically capable before we had the hard conversations but I think I’ve now made him realise that not talking about it has been hurting me more than having honest conversations.

Being a scientist at heart he really needs us to have logical and rational conversations about how this will all work and he struggles when I get overly emotional during the conversations.

So… where have we got to?

We have agreed that I need to set some goals to get to a point where I feel confident that I can physically cope with the pregnancy and the uncertainties that come with raising a child.

The goals I have set myself are as follows:

I believe that I would be physically capable of handling the stresses and uncertainties of pregnancy and raising a child if I can achieve the following and maintain it for at least 2-3 months with no major crashes/flare ups:

1. An average step count of around 7,000
2. The following average breakdown of activities
   • Less than 30% Rest/Mindless Activity – on average around 25% (meditation, naps, audiobooks, tv, Facebook, and travel when E is driving)
   • 10-25% Mental Activity (work, blogging, reading articles, etc)
   • around 50% Physical/Social Activity (exercise, housework, outings, etc)

To determine how I’m tracking for these goals I track my daily activity using a time tracking app on my phone and my steps using Garmin Connect and my watch.

As an example of where I am at the moment, my breakdown for February was:

• Average steps 5,404
• 39% Rest/Mindless
• 15% Mental
• 24% Physical
• 20% Social

I also break each category (mental, physical, and social into high and low activity). Overall my February breakdown for this was:

• 39% Rest/Mindless (as above)
• 26% high activity (exercise of any kind, work, budget review, large groups of people or stressful situations, cooking complex meals, baking, gardening, etc)
• 32% low activity (reading, writing in my journal, one on one or small group activities, showering and dressing, reheating leftovers/simple meals, etc)

*Note percentages may not add up to 100%. I am using the percentages provided by the app and I don’t believe it rounds decimals correctly to whole numbers.

As you can see, I’ve improved a fair bit since my crash in November (my average step count was down to 2,000-3,000)

The next step is to have discussions around the difficult questions like:

• What will happen if I’m having a crash?
• How will I cope with the day to day activities of looking after a newborn/toddler/older child?
• What kind of support do I need for this to be possible?
• Not only CAN I have a child but SHOULD I? Is it fair to the child?

What I’d like to do is get your input. If you have had children of your own while dealing with chronic illness like Fibromyalgia or ME/CFS, how did you cope?

Even if you don’t have a chronic illness, do you have any tips for minimising the impact of flares?

Here are my thoughts so far:

What will happen if I’m having a crash?

Flares and crashes are part of the parcel with many chronic illnesses so it’s important to have some sort of system in place for dealing with them. The first 5 years will be the most difficult to cope with as the child will be too young to actually understand what’s wrong when mummy needs to go lie down and isn’t able to do all the things they want to do.

Depending on the severity and duration of a crash/flare up there are several things that I can do to make sure I’m not neglecting my child during this time…

1. Be realistic about what is really essential to be a ‘good parent’. A young child doesn’t necessary understand what is going on but they are aware of if their parents are there for them or not. Realistically, the occasional day of ‘low energy activities’ is not going to be detrimental to my child’s health and mental well being as long as I’m with it enough to be there with them.
2. Have stand by ‘Low Energy Activities’ available. This could mean a day in bed reading stories, watching tv/movies, or listening to music. It could mean allowing my child to have free play time while I observe from the couch.
3. Have family support available on call if needed. At this point in time we are very lucky to have a large network of family support with reasonably flexible schedules. E’s Amma and Uppa, his parents, and my Gran are retired, my mum works part time, and my dad has a fairly flexible schedule. Obviously, they still have things that they do regularly and tend to fill up their schedules with other activities but between them all I’m fairly confident I could find someone at short notice who could help me out.
4. Do my best to minimise the chances of a crash/flare up occurring. Obviously prevention is better than treatment, so having systems in place to minimise the likelihood of a flare is important. The ideas I’ve come up with (or found while researching this topic) are:
   • With a new born, rest when ever the baby sleeps. During the first 4-8 weeks focus only on what is necessary – feeding, cleaning and resting with the baby. If possible, have support come in to do other tasks like cleaning, cooking, etc. (We already have a cleaner coming in once a fortnight, and – because I’m keen to use cloth for health and environmental reasons – I’d consider a nappy service for at least the first while).
   • As the child grows, continue to pace your activities. Consider having regular days/times where the child is in someone else’s care (family, child care) so that you can still have regular rest breaks.
   • Consider using a combination of breast and bottle feeding so that others can assist. This would be particularly useful for night feeds so that I can still get reasonable sleep. The impact of sleep deprivation on my health is one of our primary concerns at the moment.

How will I cope with the day to day activities of raising a…

Newborn?

From what I’ve read, the newborn stage (apart from the sleep deprivation) is relatively simple to cope with. As your baby is not yet mobile it is easy to do low energy activities with them. Most of your time would be spent just feeding, cleaning (nappy changes, etc) and cuddling your new little bundle.

As stated above, I’d consider having support services in place for cleaning, etc.

The verdict on breastfeeding vs bottle feeding for those with chronic illness is still out. Breastfeeding is simpler in that you don’t need to worry about sterilising bottles, making sure the formula is at the correct temperature, or just using up your energy in making up the formula. However, it uses much more energy to breastfeed and can leave you physically more tired (something that a person with chronic fatigue doesn’t really need) and you can’t share the task of feeding the baby.

Personally I’d still like to breastfeed, at least for the first few weeks if possible, but would be open to pumping and supplementing with formula so that E and others could help with feeds after the first few weeks.

To make breastfeeding (especially at night) as easy as possible in the beginning I would like my child to sleep next to me. However, due to my pain levels I tend to toss and turn at night and E is a very heavy sleeper so I wouldn’t want my child in the bed with us. I’d look at getting something like the arm’s reach co-sleeper which converts from a co-sleeper bassinet to a free-standing bassinet to a ‘read to me’ love seat. I’m interested in getting items that will have longevity in terms of usefulness and style.

As I mentioned above, my passion for sustainability and my own experience with disposable items near my nether regions (I’m allergic to disposable pads, etc) mean I’m keen to use cloth nappies on my child. I have done a lot of research on this topic and feel that it is doable even with limited energy and physical capabilities. With a young child you will already be increasing your washing requirements to keep their clothes clean, it doesn’t add that much to throw in a load of nappies every 2 days or so. It’s even easier if you use a nappy service that collects the dirty nappies once a week and washes and returns them.

Crawler/Toddler?

This in when I think things will start to get interesting. At this point in time I believe I’d be considering putting my child into some form of care (family members or child care) 1-2 days/half days a week so that I had some ability of pacing and having some more intensive rest.

I’d also consider going to spend days at other people’s houses (or have people over to visit) so that I have some support during the day.

Older Child?

As my child gets older I’d explain to them in age appropriate ways how my illness impacts our life and why I need rest periods.

Well, I’m starting to run out of steam and I have gone on for quite a while so I’ll leave it here for now (stay tuned for more as I continue to consider our options)…

Read More…

There are plenty of articles out there on this topic but here are just a few

Parents and Chronic Illness

10 Tips for Parents living with Chronic Disease

Caring for Your Child During a Chronic Illness Flare Up

Do you have any tips or advice you could share that would help us through this decision process?

Are there any other questions we should be asking ourselves?

 

Share Your World – Week 9

I can’t believe we’re 9 weeks into the year and another month is here already! It’s not too late to join in if you want to participate in Cee’s Share Your World Challenge. It’s simple, each week she provides a list of questions for us to answer.

Have you done something you truly want to do today?

I need to preface this by saying I write my posts on Tuesday, and this post doesn’t go live until Thursday, so my answer to this particular question is based on Tuesday…

Yes, I have. I’ve written (or writing my blog posts) and I’ve made the decision to step back from my commitments for the month of March. I’ve sent emails excusing myself from many of my volunteer commitments.

What can you help the world with?

I’m only one person but I feel I can help the world by being open and honest about my life and my choices. I’m an advocate for those living with invisible illnesses and for living a simple, sustainable and meaningful life. I try to lead by example and have the difficult discussions that many people avoid.

If life was ‘just a bowl of cherries’… which fruit other than a cherry would you be..?

I’d be a banana… A versatile and nutrient packed fruit that most people enjoy.

Quotes List: At least three of your favorite quotes?

Retrieved from Facebook.

A quote of my own… My daily mantra

Found on Facebook

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

I’m grateful to our neighbour for giving me the desk that fit perfectly in my sewing corner and to my in-laws for providing us with seedlings and helping out with our garden.

In the next week I’m looking forward to our Breakfast and Behind the Scenes Tour at the zoo. I bought tickets for this as part of E’s anniversary present last year.

Share Your World – Week 5

The questions this week have been very thought provoking and I’ve struggled with a few of them but here we go…

If you had a shelf for your three most special possessions (not including photos, electronic devices and things stored on them, people or animals), what would you put on it?

I don’t really focus much on ‘stuff’ and ‘possessions’ any more so I’ve struggled to think of 3 things that would go on the shelf.

I would definitely include my childhood teddy. He’s been through everything with me and he’s not going anywhere…

The second thing I’d put on it is the old cigar box that currently holds my yearly letters to E. Starting from our wedding day I’ve written a letter to him each year as part of his anniversary gift.

The third thing I’d add would be my special jewellery… My engagement ring (was my great grandmothers) and wedding ring, my heart necklace (6-month dating anniversary gift from E) and my crystal necklace (also a family heirloom).

If you had a box labelled ‘happiness’, what would you put in it?

NOTHING, or a note that just says ‘Be Present’. I would use it as a reminder that happiness comes from within, not from external sources.

What do you want more of in your life?

I’m very happy (or as happy as I can be) with my life at the moment but I’d be happy if I was able to have more family time and less pain/health issues.

Daily Life List: What do you do on an average day? Make a list of your usual activities you do each day.

An average day… I was planning to do a day in my life style post like my friend Joy and Toni Bernhard anyway so I guess I’ll describe it here.

Wake Up time… Generally between 8 and 9 am (although the last few days I’ve woken earlier then fallen back to sleep). At this time I take a moment to scan my body and see what parts are hurting the most and the least (there’s never no pain so it’s more an assessment of how well the day is going to start).

While still lying in bed I do at least a 5 minute meditation before stretching and slowly sitting up. Most days I’ll take a shower (sitting on the floor to avoid falling over or making pains worse) and get dressed.

Breakfast is the next task to address. I make a cup of tea and see how much energy I have. Most days I just have a piece of fruit or something premade that’s easy to eat. When I have the energy I’ll make a cooked breakfast with veggies and eggs.

While the kettles boiling (and breakfast is cooking) I’ll do a short sun salutation. Just 5 minutes is enough to stretch out my muscles but it also wears me out again.

After eating breakfast it’s time for another rest so I’ll sit on the couch drinking my tea. I may browse Facebook on my phone.

After 10-15 minutes rest, I’ll read through some blogs for up to 30 minutes (usually closer to 15 minutes) then push the button that sends the robot vacuum on a round of the kitchen/family room and laundry.

I’ll clean the litter trays and then assess how I’m feeling.

If it’s a good day I’ll do an hour or two of work (writing blogs, working on consulting jobs) or spend some time cleaning up around the house with regular short rest breaks in between. If it’s a bad day I’ll put the tv on or listen to an audio book.

At around 11:30 I’ll start thinking about lunch. Generally this will either be left overs or a sweet potato which I throw in the oven with salt, pepper and oil and leave to bake for an hour.

After lunch I have a nap before either doing a bit more work/housework or putting the tv/audiobook back on.

Around 5 I start considering dinner. I slowly make dinner taking lots of rests and by the time E is home (generally between 6 and 7pm) dinner is ready to eat.

We eat and watch tv until around 9-9:30 when I take my medicines, floss and brush my teeth, shower and bed.

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

I’m grateful that I’m able to live a slow life. Over the weekend E and I were able to slow down and just relax. I spent a whole morning listening to audiobooks while E was on the computer and doing things around the house, we visited family and we went for a slow walk in the local national park.

This week I’m looking forward to continue living slowly. Taking the time to enjoy the simple things like the warmth of the sun and the sound of the rain. I’m also looking forward to afternoon tea with Rach as a special mid-challenge catch up as part of our 20 week no-buy challenge.