Tag Archives: pacing

It’s been over a week since I last posted. Between my major projects (Foggy Frog book and AAEE 2016 Conference) and the weather here it’s been difficult to find time to write here.

Yesterday, just as I was about to write my post, the power went out at home. It was out most the day so instead of working (everything I’ve got to do at the moment is online) I spent the day reading Harry Potter and playing with the cats.

It was interesting working out the best ways to stay warm when the heater didn’t have it’s fan (it was warm right in front of it but the heat didn’t get very far) and I didn’t have electricity to make the gas hot water work for a bath or the kettle work for tea.

In the end, I used the stove (gas and I could light it with a match) to boil water for tea and just sat as close as I could to the fire most the day with the cats for company.

Anyway, on to what I was planning to talk about yesterday…

Testosterone – an Update

It’s been over 3 months since I started on Testosterone treatment for pain and energy management.

Using the syringe to measure and apply the cream to my skin

The first few months I didn’t really notice much difference. There was a good reason for that though as, although we started at the usual dose for women and doubled it at the end of each month, I didn’t seem to be absorbing much of it. The free levels in my blood only went up by 0.3 over the first two months from 0.4 to 0.7 (normal range for women is 1.5 to 8 – I don’t remember what the measurement units are sorry)!

Rubbing the cream in to make sure as much as possible gets absorbed

However, once we doubled the dose again, for a total of 1 mL daily, my free testosterone levels in my blood have finally reached low-mid normal range (around 2). I’m beginning to notice some changes in my base levels of pain and a decrease in the number and intensity of the crashes I have. Nothing really worth claiming as a significant improvement yet, but even the change in crash frequency has allowed me to get a lot more done recently.

Foggy Frog and the Pain Gang Book Launch

We’ve set a date for the official book launch! There will be a live event on Saturday 24 September 2016 at Burnside Library, followed by a series of online events during Invisible Illness Awareness Week (September 26 – October 2 2016). Register for the live event here and stay tuned for more details of the online events.

Please note this event is now in the past

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).

Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

• I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
• High levels of pain down the inside of my limbs (especially my left leg).
• Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?

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?

It’s Christmas Eve and celebrations have begun for our family.

During this time of celebration and busyness, don’t forget to look after yourself. I know that, for our family at least, it is definitely a very busy few days and so over the last few years I’ve had to learn a few ways to manage this.

Don’t forget to pace yourself. For me, this means no more than one or two social events each day (if 2, then one has to be a very low energy event) but even this is much more than I normally do so I’ve decided that I’m going to take a break from here until the new year.

2015 in review

Over the last year I haven’t done as much posting as I have in previous years, it has been the year of Enough. This has meant focusing on getting life more balanced and accepting what I have and what I can do, not what I don’t have and can’t do.

The top 3 most popular posts this year have been:

• The 100 Goal Challenge: My To-Do-List
• Living with Chronic Pain – Top 3 tips
• Pelvic Congestion Syndrome – What is it?

Two of these were written in previous years but are still quite popular today.

During the last year I have begun working again (even if only a small amount each week) and it’s been nice to be bringing in some income of my own. I’ve also been working with my husband and close friends to get the Foggy Frog picture book finalised (we should be ready to publish early in the new year).

I haven’t yet taken the time to sit down and reflect properly on everything that has been achieved this year or what I’m hoping to achieve in the new year and that is another reason why I’m planning to take the next week off. When I get back I will hopefully be able to outline better what it is I’m hoping to achieve in the next 12 months.

In regards to our 20 week no buy challenge, I don’t believe I’ll have any troubles with temptation as I’ll be focusing on my health and socialising for the next week or so but I’ll report on weeks 4 and 5 in the new year.

Merry Christmas and Happy New Year.

I hope you all manage to find at least something small to be grateful for and to bring joy to you holidays.

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…

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at P… Pacing.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

P is for Pacing

A form of budgeting time and energy, pacing is an important tool in our toolbox for a simple, sustainable and meaningful life with chronic illness (and I would dare to say without one).

I’ve written a fair bit about pacing in the past as I set my original boundaries, and attempted to stick to them and slowly increase them. Even though I started pacing over 2 years ago, it is still something that I struggle with.

Every time life changes I need to readjust what I’m doing and try to set myself some form of routine or schedule that allows me to pace the new activities in with my old ones.

For example, when talking about budgeting I mentioned that I am aiming for 4-6,000 steps a day, with 4,000 being my minimum. The last week or so though that hasn’t been the case. Something has changed – the weather, amount of work I’m doing, or the number of social events I’m attending – I’m not entirely sure what, but it has led to a set back in my step count and an increase in my fatigue and pain levels. I’ve almost halved my minimum step count and need to work slowly to build it up again after my symptoms settle down.

The example above is to do with physical pacing (exercise) but you can apply the same technique to other aspects of your life. This is especially important when trying to simplify your life.

The technique I’m attempting to implement at the moment to help me pace my activities and time much better is to set a rough daily/weekly schedule that will help me decide if I have to say no to an activity.

This post is coming in late, and almost didn’t happen today, because I have been trying to stick to this schedule and my appointments came first this morning.

Do you have techniques you use to pace?

I’ve mentioned many times about trying to maintain some form of routine and pacing as a way of managing my health. Now it’s something I need to refocus on.

I’ve got goals and dreams that I want to achieve within the next few years, and in order to do them I need to be as healthy as I can be. As I’ve previously mentioned, over the last few months I’ve begun adding work back into my life and this has thrown the routine I had set for myself out the window.

Why is it so important for you to have some form of routine?

In order to maintain a lower level of pain and more energy I’ve found the only thing that even works a little is pacing myself. Without routine it’s hard for me to keep my step count consistent and to actually motivate myself on my crash days.

I want to increase my step count back up to where I was before I crashed around Christmas last year (an average step count of 7,000). To do this I’m slowly raising what my minimum step count is for crash days. Over the last 3-4 months I’ve raised my minimum step count from less than 2,000 to 3,500. I’m raising in 500 step intervals every few weeks.

But what about the things that happen in life? You can’t plan everything!

No, you can’t but you can set yourself up so that you have some reserve for the unexpected while still maintaining a general routine on a day to day/week on week basis.

What’s your plan?

At this stage I’m still formulating a new plan for pacing and setting a routine that is flexible enough but I think it will look something like this…

8 – 8:30 am

Do some deep breathing, get up and do a short yoga sun salutation

8:30 – 9:30 am

Shower or bath (pain relief technique) and get dressed, rest if necessary

9:30 – 10 am

Breakfast

10 am – 12 pm

High energy work/housework/appointments with regular rest breaks

(no longer than 1 hour activity at a time without a break)

12 – 1 pm

Lunch

1 – 3 pm

Lower energy work/housework/appointments with regular rest breaks

(no longer than 1 hour activity at a time without a break)

3 – 5 pm

REST (tv or nap depending on energy levels)

5 – 7 pm

Make and eat dinner

7 – 9 pm

TV

9 – 9:30 pm

Pelvic Stretches, prepare for bed

10 pm

Bed

It’ll take me a while to build up to this (especially the getting up and going to bed at a regular time) but it’s important to me to push myself without going past my limitations.

Have you ever tried to set yourself a routine? How successful was it?

As I mentioned last week, it’s National Pain Week in Australia this week. I will be sharing my story over at the National Pain Week website and at My Invisible Life later in the week. I’ll also be talking to local media, starting with ABC Riverland Today at 10:45 this morning.

Living with chronic pain can be frustrating, overwhelming and disempowering, however it is still possible to live a meaningful life while coping with it.

With over 2 years experience of living with chronic pain myself, and having spoken to many people who have lived with it a lot longer than I have, I’ve found many tips and tricks that have helped me live a reasonably quality and meaningful life despite constant pain and fatigue. Below I share my top 3 tips for living with chronic pain:

1. Listen to your body and pace yourself
2. Don’t stop researching and trying new things
3. Eliminate the unnecessary so you can focus on what is meaningful to you

Listen to your body and pace yourself

One of the first things I learnt on my journey with chronic illness is that my limits had changed. Before chronic illness I was a high achiever who had to always be doing something active and challenging. Since becoming ill, I still need to be doing something but I’ve had to cut back on the level of activity.

On a day to day basis I need to consider how I am feeling and plan my day accordingly. If my body has higher pain or fatigue levels than normal, or my brain is complete fog, then I know I need to step back and rest most of the day. If my pain levels are lower than normal or I’m feeling energetic (doesn’t happen that often but it could!) I need to remember not to push too hard or I will crash later on.

In general it’s best to aim for consistency and to allow your body to rest when it needs to.

To give you an example, I’m just coming out of a 2-week crash so my step count and activity level has been cut way back to an amount that i can maintain even if I’m feeling really bad. I have to minimise work and social activities and focus on resting. On any given day I usually only have one or two key activities lined up, which could be as simple as make a meal. While I was in the crash I didn’t really do any activities and most days were spent on the couch.

Don’t stop researching and trying new things

For many of the causes of chronic pain there is no known reason or cure for the pain. As a result there is usually always someone claiming to have the solution. Although it’s important to consider each solution offered to you carefully it is good to keep an open mind and try many different things.

What works for one person may not work for another.

I’ve tried multiple prescription drugs, none of which helped. In fact, most of them caused side effects worse than the symptoms they were meant to be helping. For other people though these drugs have helped.

I’ve tried (or I’m trying) physiotherapy, various exercise programs with guidance from an exercise physiotherapist, acupuncture, breathing techniques, a tens machine, and hypnosis.

Using the TENS Machine for Pelvic Pain

Eliminate the unnecessary so you can focus on what is meaningful to you

Because of my limitations I have gone through phases where I’ve felt that my life had no meaning. To help me get over that I’ve had to focus in on what is meaningful to me.

I’ve worked on identifying my values and changing my lifestyle so what little energy I have is used doing things that fit with these values.

Since living with chronic pain I have taken up blogging so I can still contribute to the wider community, I’m focused on shopping and living as sustainably as possible, I meditate daily and practice gratitude, and I make time each week to spend at least an hour with family and friends.

I have eliminated my gym membership (I can’t exercise to that extent at the moment any way), full time employment (again beyond my limitations), and cleaning the house (we get a cleaner in fortnightly to do the major cleaning, and I’m slowly decluttering so there’s less to pick up and care for around the house).

Bonus Tip: Have Fun

I personally believe the most important tip I’ve been given on my journey towards a simple, sustainable and meaningful lifestyle while living with chronic pain, is to focus on what makes you happy and to have fun.

Tasks such as cleaning can be outsourced and when you have limited energy to contribute to society you are more likely to be happy with your life if (as in the tip above) you focus on what is meaningful to you and make sure you do at least one thing to have fun each day.

Whether it’s taking the time to look out the window and connect with nature, reading a good book or spending time with family and friends, it’s important to make time for fun in your life.

What tips would you give someone who was living with chronic pain and struggling?

HEALTH – an acronym and guide for living your own simple, sustainable and meaningful life

Hopes and Dreams – Just because you’re not as healthy as you once were, doesn’t mean you need to roll over and forget about everything you ever wanted to do in you life. You are still you, and with a bit of support and modification it’s still possible to live a meaningful life in which you can fulfill your hopes and dreams.

Exploration – You have passions and values that feed into your hopes and dreams. By exploring what your values are and what you’re passionate about you can discover ways to create your own simple, sustainable and meaningful life. One of the best ways I’ve found to identify your passions and values is to participate in the 100 Goal Challenge. Through this process I was able to identify that family, making a difference, and living sustainably are the highest things that I value in my life. This fits well with my dreams to start a family and run my own business helping others live simple, sustainable and meaningful lives.

Action – Once you’ve identified your hopes and dreams, and explored your passions and values the next step is to take action. Decide on one small step you can take today to move yourself one step closer to the life you want to live. My first steps included setting up this blog, fundraising through Kickstarter to publish the Foggy Frog and the Pain Gang picture book (happening later this year), and networking to find opportunities to help others.

Listen – Your body knows what it is capable of. Make sure you pay attention to changes in symptoms and pace yourself accordingly. Although I’d love to do everything I want as soon as I want, my health dictates that I can’t. By making sure I rest when I need to I’m able to do more in the long run as I’m less likely to crash.

Talk to others – Having a network to support you is important if you actually want to live your own simple, sustainable and meaningful life. The best way to create that network is to talk to others. Share your ideas, form partnerships and build a community around you. I do this through social media and this blog, talking with neighbours, friends and family, and identifying relevant workshops and conferences to attend when I’m well enough.

Highlights and Reflections – As we move through the process, it’s important to take time to identify the highlights, reflect on where you have come from and where you are going. People do change over time so it’s important to make sure that the path you’ve set yourself on is still the right one for you. By doing this regularly you can make changes as you need to so that you can maintain a simple, sustainable and meaningful (to you) lifestyle.

I’ve been following this guide for the last 12 months and I believe it has put me on a path to a simple, sustainable and meaningful life despite the problems living with chronic illness throws at me. This is not a be all and end all guide but a broad overview of things that need to be considered.

Have you focused on your H.E.A.L.T.H.?

What steps have you taken towards your own simple, sustainable and meaningful lifestyle?

I must apologise for falling off the band wagon with the HAWMC posts. I’m still working out how to pace myself with the new casual work.