Tag Archives: activity levels

Hello, yes I’m still here and still alive. Today I want to talk to you about remembering to Say No.

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

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

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

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

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

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

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

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

Right now I’m saying NO to:

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

I’m saying YES to:

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

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

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.

“Are you feeling better? You’re looking good!”

The other day, E and I were out celebrating the birthday of one of our friends. It was a dinner and dessert event, which meant a late night for me.

Because I knew we were having a late night I’d spent most the day doing quiet activities like reading and building the Lego I got for my birthday. Even though these were the main activities I did that day by lunch time I was struggling to keep my eyes open and my pain levels were rising.

I spent most the afternoon on the couch resting and thankfully I was feeling reasonably well when it came time to head to dinner. Still low energy and slightly raised pain levels, but not bad enough that I couldn’t focus at all.

At dinner, the venue was quite loud and I did struggle with focusing on conversations so didn’t even bother trying to keep up with conversation at the far end of the table. I did chat a bit with those at my end of the table but mainly just tried to listen.

When we got to where we were having dessert it was quieter so I began to join in the discussion again. At this point someone asked me if I was doing better because I looked a lot better than I had before.

Now, I’m always hesitant to answer this question.

Yes, at the moment I’m managing to do a lot more than I had in the last 3 years. I’m working and I’m socialising more. My energy levels are (ever so slightly) better than they have been (more stable), meaning I’m crashing less often, and my pain levels are relatively stable (although they’re beginning to fluctuate a lot more now that winter is here again).

If I just compared how I’m doing right at this moment with how I was 6 months or 2 years ago my answer would be a resounding YES, I’m doing better.

But I’ve felt better before, for a month or two, and then had a major crash which took me back to worse than I was to start with so I don’t want to jump the gun and say I’m doing better yet.

I believe the Testosterone cream is helping with my energy levels at the moment, but I am concerned about the side effects if I stay on it long term and I really want to have children at some point.

E was frustrated with me that I wouldn’t give a clear Yes answer to our friends and that I deferred to him and asked if he thought I’ve been doing better.

I did this because, up until recently, he’s always been able to tell (even before me a lot of the time) if I’m doing too much and about to crash. It seems that I’ve been able to perfect my ‘well’ face (the one I use to cover the fact I’m struggling) to a point where even he’s not noticing as quickly when I’m struggling with things.

That night out, I looked like I was doing well. For some periods of time I was, my energy levels were fluctuating dramatically going from able to focus to complete zone out several times during the mean. Normally E would notice these zone out times, but it appears he didn’t that night…

Do you struggle with people assuming you’re better because you ‘look’ better than before?

How do you decide how much to share?

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)?

A Quick No Buy Challenge Update then on to Family Planning: 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?

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 can’t believe it’s almost the end of January already and we’re up to week 4 of Share Your World 2016 !

So far this year I’ve been struggling to maintain my balance. If I look at it from a week or month point of view I’m doing ok but on a daily basis I’m still struggling. Some days are crashed on the couch and unable to do anything much other than listen to an audio book or the tv in the background. Other days I’m rushed off my feet trying to do appointments and out of the house activities… I haven’t worked out the balance there yet.

It’s difficult for me to work out how to do this properly because I see the benefit of not having to drive more than once or twice a week (it’s still an activity that wears me out a lot) but then it means those days I am out I don’t manage to pace my step count, I don’t get my usual rest breaks, and I just over do it in general.

I’m also struggling to get any sort of regular routine in place for work activities. I’d love to be doing at least a minimum amount of work each week but Foggy Frog seems to be my constant companion again and he’s making it very hard for me to do anything for more than 5-10 minutes at a time with any hope of having reasonable results.

How do you pace yourself with activities outside the house or with adding in any work?

Anyway, being Thursday today, it’s time for another round of Share Your World.

Share Your World – Week 4

What one thing are you really glad you did yesterday?

Yesterday was one of those super full days where I over did it. That doesn’t mean there weren’t things I achieved that I’m really glad to have done though…

I managed to make it in to town to have lunch with E and one of his work colleagues before heading to the meeting I had in the afternoon. This is something that I really enjoy doing as it doesn’t happen very often these days unless I have a medical appointment in town.

Are you generally focused on today or tomorrow?

I do have a habit of focusing on things that I feel are important or scary that might be happening in the future but these days, thanks to the uncertainties related to my health, I’ve gotten a lot better at just focusing on one day at a time. Most weeks I don’t even look at my calendar in advance unless I’m booking something in. I might check it the night before when I’m getting ready for bed or when someone asks me what I’m doing.

Would you want a guardian angel/mentor? What would they tell you right now?

A mentor (or several mentors) provides inspiration, advice and guidance to help you succeed the best in life. Yes, I’d want that in my life and look up to several people in my life now as mentors.

Right now my mentor would be telling me to remember to be gentle with myself. As you might be able to tell from the last few posts I’m feeling very frustrated about my limitations at the moment. I’m wanting to do way more than my body will actually allow and I’m struggling to accept it. If my mentor was here right this minute they’d be reminding me that my health is the most important thing, without it I can’t do anything. They’d be telling me to continue to listen to my body and rest when I need to, to accept where I am at the moment, and to not set unrealistic expectations for myself.

Would you rather live in a cave house or a dome house made out of glass? (photos of the houses found on google search)

I love the idea of both but my dream house would be a dome house that’s built into the ground with lots of glass… something like this.

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 understanding and support of the wonderful people in my life. I realised in the last few weeks that I’m not going to meet my deadline for one of my consulting jobs. When I contacted the client to let them know they’ve been very understanding and said there is no rush and to just work on it as quickly as I can.

Being able to spend time with my friends has also been very satisfying.

In the next week I’m looking forward to talking with my doctors about some test results I got in the last week and hopefully getting some guidance on how to approach the issues that have arisen (More to come in an upcoming post on this).

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 been so excited to hear from you all about your thoughts on the most recent A-Z guide to a simple, sustainable and meaningful life. One of the questions I’ve been asked to share more about is how work fits in to pacing with a chronic illness.

One reader in particular approached me with her current situation and I could see a lot of similarities so I wanted to talk about the issue in more detail.

This lady has ME/CFS like me. I’ll let her share her experience in her own words (modified for privacy):

I’ve been working on trying to get my activity level up for a while now but have only been keeping track of my daily steps for about a month. At the moment I seem to be averaging about 4000-5000 steps a day which I’m really happy with. I think a couple of years ago I would’ve been lucky to average 1500-2000. My main problem at the moment is that my step count is very inconsistent. It can vary anywhere from 2000 steps a day to over 8000 a day depending on the activities I have on.

I’ve now been back at work for just over 3 months… I’ve only been doing short shifts (3 or 4 hours) but these shifts involve being on my feet and walking around for most of the time. This makes it hard for me to pace myself and on a work day I don’t think it would be possible for me to keep my step count below 8000. I then find that the day after I have worked I’m exhausted and my step count is very low.

In response to the reader’s concerns I’d like to offer some advice…

The weather here has been up and down with some extreme heat over the last few weeks. Unfortunately, this weather isn’t conducive to me being at my best.

I have been struggling a lot over the last week in particular with very high pain and fatigue levels. Keeping up with the daily blog posts and doing a minimal amount of other work or appointments takes most of my energy and the rest of the time has mainly been spent doing mindless screen activities (tablet games or tv).

My step count has dropped again to a minimum of 2,000 (half the minimum I’d built up to) but I’m not too concerned about that. The thing I’m most to concerned about is if this is a precursor to a crash like I had last year (which I haven’t fully recovered from even now).

I’m hoping by proactively resting and listening to my body I can avoid a major crash.

The problem is that I still don’t really know what caused the crash last year so I don’t know what I can do to avoid it.

On the other hand, I don’t want to go backwards because I’m being too cautious… so I am still trying to maintain a minimum level of activity and because it’s the newest and most meaningful addition to my routine, I’m trying to prioritise my work activities.

Now it’s time for another rest…

Do weather changes affect your health? What steps do you take to minimise the impact?