Tag Archives: Health

You may have noticed I’ve been missing in action lately. There is a very good reason for this and it’s time to make an announcement… Life has taken a major turn in the last 6 months.

Not only did we launch the Foggy Frog and the Pain Gang picture book in September last year, and help to organise and host a national conference in Adelaide in October, but on a more personal level E and I are expecting a baby! Due date 6 July 2017.

Yes, you read that right! We’re over half way to meeting this much awaited new addition to our family.

Why has it taken me so long to make this announcement?

Simple. I wanted to tell as many people in person as we could before I announced online. If I do know you offline and haven’t had the chance to tell you in person yet, I apologise. I’ve tried my hardest to see as many people as I could over the last few months but I felt that I couldn’t really hold off much longer with making this announcement as I’d been avoiding blogging until I was ready to announce.

Pregnancy, Parenting and Chronic Illness

Those of you who have been following me for a while, or who know me in real life, know how important the idea of being a parent is to me. You would also know how much thought, research and discussion has gone into the process of deciding whether or not to try for a baby. We obviously made the decision to try, but it was not an easy decision to make.

Living with several chronic illnesses has limited what I’ve been capable of achieving over the past few years. I’ve very slowly built up my work hours and my capacity to exercise and participate in social activities to a point where I felt comfortable coping with whatever impact being pregnant and being a parent may have on my health.

I know that it’s not going to be an easy process but it’s something that is important enough to me that I’m willing to modify what I do to make this work.

Over the next few weeks I’m hoping to begin a series of posts that talk about what it’s been like so far being pregnant with fibromyalgia and chronic fatigue syndrome. While reading these posts please remember that I’m sharing my personal experiences in the hope they’ll help others.

What I experience may not be the same as what you experience. In fact, the research I did before becoming pregnant showed that people’s bodies react in very different ways to being pregnant with these conditions. There’s no way to know how it would impact you in advance. All you can do is have strategies in place for coping with the wide variety of possible outcomes.

Anyway, enough of me talking for now… I’m just so excited to finally be sharing the news. We’re going to be parents!!!

Hello in there!

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.

Because we’re going away for the weekend (we’ll have left by the time you’re reading this) I’m keeping this post short and snappy today… Let’s Share Your World

Share Your World – Week 18

Who was your best friend in elementary school?

We don’t have ‘elementary’ school here in Australia, but I believe it’s the same as Primary school here. I moved school a lot, which meant having to make new friends, so I can’t identify one best friend. There are a few I remember from each school though, and I’m still in touch with one so I guess I’d say she was my best friend. Her name was Anna and I met her in year 6. We’ve been friends since then. We both went to the same high school as well. We lost track of each other after school, but I now see her occasionally as she works near me.

What things could people do for you on a really bad day that would really help you?

Make dinner and keep me company on the couch, that’s the best things I can think of. Having someone acknowledge how I’m feeling and doing small things like this that make my life easier for the day.

If you could make a 15 second speech to the entire world, what would you say?

Live Sustainably, live by your values.

Would you rather be an amazing dancer or an amazing singer?

Singer.

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 secondhand items from friends and that I’m able to work enough to actually have some income coming in.

In the next week I’m looking forward to my time away with Erik.

Speak to you all when we get back!

The No Buy Challenge is over, but Share Your World continues each week.

This week I have made one big purchase (new undies from Lunapads) but other than that I’ve stuck to my No Buy guidelines even though the challenge is ended. I knew before the end of the challenge that I needed to get new undies so it was a planned purchase. I think I’m going to keep trying to think through purchases for at least a day before making them if they’re over $50, if it’s less than $50 I’ll consider for at least 1 minute before deciding to make a purchase if it’s not an essential based on my No Buy guidelines. This should hopefully avoid any impulse purchases.

Share Your World – Week 17

When writing by hand do you prefer to use a pencil or pen? 

I tend to use a pen, just because I don’t need to worry about sharpening. However, just because I usually use a pen, I’d actually prefer pencil because being left handed I always end up with ink all over my hand whenever I write.

What’s your choice: jigsaw, word, maze or numeric puzzles?

I’m not really a big jigsaw person but I do a combination of word, maze and numeric puzzles on a regular basis.

Do you prefer long hair or short hair for yourself? 

I don’t really have a preference, or at least it constantly changes over time… I prefer either LONG long hair or pixie-style hair. At the moment, I’m trying to grow my hair out from a pixie cut over a year ago. It’s currently to my shoulders.

List five some of your favorite blogs.

I read quite a few blogs. At the moment I’d say my favourites, in no particular order, are:

• Treading My Own Path.  Lindsay writes about living and eating sustainably, minimalism, plastic free and zero waste.
• Baby Steps Going Green. Candice has been blogging for almost a year now. She shares the simple steps she’s taking towards a more sustainable life. Like many sustainability bloggers at the moment, there’s a strong focus on zero waste and minimalism.
• A Southern Celiac.  Brittany lives with Celiac disease and Ehlers Danlos Syndrome. She’s currently pregnant and has also suffered from Myasthenia Gravis throughout her pregnancy. I love hearing about her life with her husband Justin and the many animals they live with.
• My Journey Thru ME. Jess writes about her life with ME/CFS. She shares what helps her and how she manages to pace.
• Counting My Spoons. Julie provides information and inspiration for those of us living with Fibromyalgia.

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 having the energy to help my friends and family with their moves, for a long weekend and more time with E.

In the next week, I’m looking forward to seeing what happens. I don’t have much scheduled so I can take each day as it comes.

I have low Testosterone levels… It’s not something you normally hear about in women.

Before I get started on today’s post, I hope everyone has had a wonderful Easter weekend.

We spent it in the bush camping helping friends set a rogaine for later this year. Most days I hung around the campsite, with a short walk with T during the day while the others were on long hikes setting check points. I did join them on Sunday when half the points were only short walks from the car, this was another big day like the rogaine the previous weekend but I did make sure that I rested a lot as well by staying at the car and meditating while the others went on longer walks.

Over the weekend I had a lot of time to think and reflect on how things have been going lately.

I’m still working on finding balance in my life but have realised that having a set routine doesn’t work for me. Instead pacing, and continually reassessing and adjusting to create balance over a longer time period instead of trying to balance activity within any given day.

I’m feeling very positive about my progress. As I mentioned last week, I’ve had a few full on days lately (think double my daily average step count without many rest breaks) but haven’t had any major crashes. I have had a few single crash days but have been back to ‘bad’ by the next day.

I’m attributing at least part of this improvement to the nortriptyline I started taking about a month ago, and I’m hopeful that the testosterone cream I started on the weekend will improve things further.

I’ve started the testosterone because my free (available) testosterone levels in my blood stream were almost non-existent. This could explain several of my symptoms including the fatigue, sleep issues and an increased risk of bone loss (I’ve been diagnosed with Osteopenia – the step before Osteoporosis and the doctors haven’t found a reason for the continued bone loss after stopping the Depo Provera over a year ago). It can also cause low libido.

There are side effects I have to be aware of including increased hair growth in the area I apply the cream, lowering of my voice, and acne. Because the side effects can take a while to appear and too much testosterone can have even greater impacts on my health, I need to have a follow up blood test in 3 weeks to check whether the dosage is correct and see if my blood levels of free testosterone are back in the mid-high normal range. The benefits of the testosterone cream (in particular increased energy) should also become visible in the next 2-3 weeks.

Have you ever had your hormone levels tested?

If you’re female, have you ever tried hormonal replacement (in particular testosterone)?

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).

Jumping straight in today so here we go…

Share Your World – Week 7

What are you a “natural” at doing? 

I’m a natural at engaging with babies/younger children. When they’re really young, I can usually get them to settle in my arms. Older, they seem to be attracted to me and want me to participate in their adventures. I’m enjoying spending more time with my friends children these days and I really can’t wait until we’re ready to try for our own.

Would you prefer a one floor house or multiple levels?

Definitely one floor. Our current house has only one step down across the middle of the house but even that means I can’t just put Mr Vacuum on to run around the whole house… He just focuses on the bottom floor (kitchen, family room) most the time.

Mr Vacuum resting after cleaning the floor 🙂

I wouldn’t want to drag washing up and down stairs and everything is just so much easier on one level.

What was your favorite subject in school?

My favourite subject at school was music. I participated in school musicals and other events. It was a great break from the more serious maths, english and science I focused on all the way through to the end of year 12.

At university, I focused on subjects related to the environment and sustainability.

Complete this sentence: If only the rain.. came regularly year round. It would save me so much energy if the rain came regularly enough that I didn’t have to worry about watering 🙂

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 time I got to spend with my friends and their children.

In the next week I’m looking forward to catching up on some much needed work (supposing this relief from extreme fog stays – I can focus enough to do a little work again now).

I did some shopping this week…

There, I got that off my chest. I didn’t break my rules for the 20 week no buy challenge, but I did buy things I wouldn’t normally buy (they were on my to-buy list a long time.

If you’re a regular reader you’d be aware that I’ve yet again been trialling new drugs and suffering from very frustrating side effects that are impacting on my quality of life.

In particular, the brain fog (which I had got to manageable levels) has been so bad I’ve pretty much been unable to do any work for the last few weeks apart from attending meetings (listening but not contributing as much as I usually would) and writing here on the blog.

Yesterday, when I came onto the computer to do some work (I didn’t manage to actually do any work in the end)* I got completely distracted. Don’t ask me what distracted me because I honestly don’t know but somehow I ended up looking at sustainable living/baby related sites.

Our kitchen has several plastic and glass (pyrex) storage containers but as part of my journey towards zero waste I’ve been wanting to get my hands on some leak proof stainless steel containers for getting meat from the butcher. I also wanted to get my own spork to go into my zero waste eating out kit instead of transporting a cutlery set (i.e. cut my kit back to a spork, straw and napkin, along with my sandwich wrap, jar of snacks and stainless steel drink bottle for longer trips out and about.

My original zero waste eat out kit… spoon, chopsticks, straw and napkin. I want to replace the normal sized spoon and chopsticks with a reasonable sized spork (a more flexible tool with less to carry around)

On one of the sites I ended up on I found a good special on both of these items so jumped in and bought myself 2 stainless steel containers (with BPA free lids that seal and a removable divider inside) and a bamboo spork.

My zero waste purchases

I also bought my supplements online for the first time (calcium and folate), so now I’m waiting excitedly for my packages to arrive!

I’ve also started a list of things that I will need to consider buying in the near future. Because my wardrobe is now so minimal and I wear my favourite things most days, I’ve reached the point where things are starting to wear out.

Some of these things won’t be replaced, like the 2 dresses that reached the “I can see my undies through them” point in the last few weeks, because I have already decided I had more than I actually needed of these items.

I’m now down to 7 dresses. I wear dresses almost every day, all year round. Seven is probably still more than I need but as things wear out I consider whether I need to replace it or if something else I already own fills the same niche. I’m getting closer to the magical 33 Items recommended by Courtney Carver from Be More with Less in her Project 333 (I’m down to 36 items, excluding underwear, shoes, and accessories – scarves, jewellery, hats, etc).

Other things will need to be replaced, like undies. I bought 4 new pairs of undies from the local shops in July last year (bonds brand). These are already reaching the point where they’re starting to go see-through or holey. They’re also not very comfortable to wear anymore, riding up or falling down regularly.

My other 3 pairs of undies I bought online in March (2 months earlier) and they’re still going strong with no sign of being even close to worn out. They’re extremely comfy and actually function as pads (just add inserts) by themselves if you want them to. Last time I bought 3 pairs of the charcoal grey colour.

I want to keep some colour in my collection so I’m considering replacing the most uncomfortable ones I’ve got with more of the Maia Hipster Lunapanties but in other colours (one pair each of aquamarine, festival pink, and royal stripe).

The more uncomfortable ones are still ok at the moment, and the ones I want are reasonably expensive for underwear, so I’m going to hold off as long as I can (hopefully until the end of the challenge in 9 weeks).

I’m also going to need to replace my sandals at the end of summer. The inner lining tore the other week and although we have attempted to fix it the patch is already tearing as well so they’ll need to be replaced. I have worn them pretty much every hot day since October 2014 so I guess they’ve done their stint (probably equivalent to almost a year of daily wear).

I’m considering Birkenstock sandals like this or this because they’re meant to be long lasting, and sustainably and ethically made.

How do you decide when it’s time to let go of your favourite items?

*I have managed to do some work today which is great! I’ve been really stressed about how bad my ability to get things done has been, especially given I have commitments to meet.

I had a wonderfully full weekend and got to catch up with several friends I hadn’t seen in a while and I’m doing well with the No Buy Challenge.

It was fairly hot here over the weekend which (although impacting on energy levels) made for great weather for a trip to the beach and time spent outside.

Mid-way No Buy Challenge Update – Week 10

On Saturday E and I had a wonderful afternoon tea with Rach and her husband as a mid-way catch up for our 20 week No Buy Challenge (Yes, we’re already 10 weeks in!). We took the time to reflect on how the first half of the challenge had gone, my small discretions and temptations early on and Rach’s temptation that she managed to avoid in week 6.

We also considered the future, discussing whether this is something that would be ongoing for us or if we’d repeat the challenge in the future. For me the challenge has been relatively easy (I really don’t do that much shopping) where as it’s much more of a change for Rach. I’d probably continue (but more as a being mindful and intentional about things I buy then saying NO to all buying) and Rach straight out said no to continuing but would consider doing it again when they’re back from their trip (the reason she’s doing it this time).

10 Great Things about Me

Last week, while reading other blogs (something I try to do daily now) I came across a wonderful post on Chronic Rants that discussed how those of us with chronic illnesses can tend to focus on the negative impacts of our illnesses on our lives which impacts on our self esteem. She recommended that we should make a list of 10 great things about ourselves to counter the lowering of our self esteem…

Here’s mine:

1. I’m optimistic. I always (or almost always) see the positive side of things and don’t let the negatives overwhelm me too much.
2. I always have time for friends and family. Even if it’s just to listen to them and support them that way. This weekend was full of time for my friends. Afternoon tea with Rach on Saturday, lunch with another friend Sunday down the beach, and helping other friends with getting their house ready for rewiring in the evening (I sat and chat with V who’s expecting their second child in just over 4 weeks while E helped her husband with sealing everything they didn’t want dust to get into).
3. I adapt well. Life has thrown me quite a few curve balls (chronic illness being a major one) and I’ve able to adapt my lifestyle so that it hasn’t impacted too badly on my mental health.
4. I’m passionate.
5. I live by my values. Over the years I’ve learnt to identify what’s important to me and (partially thanks to being able to slow my life due to my chronic illnesses) I do my best to prioritise these values, my family and friends, living sustainably and looking after my health being the most prominent of these.
6. I love to learn.
7. I love to help others.
8. My friends and family love and support me in everything I do.
9. I’m (mainly) a positive person.
10. I’m unique!

I challenge you to make your own list of 10 Great Things about You. It does wonders for your self esteem.

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

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.