Personal Energy Use

Early in my chronic illness life, I wrote an introductory article, Pacing for Beginners. More recently, I wrote about Pacing THRU, Pacing UP, Pacing DOWN.

Pacing, balancing my life, has become even more critical since starting a full-time job. The earlier articles talk about the spoon theory and the battery analogy. Today I’m going to stick with the battery analogy as we all understand what happens when our mobile phone battery dies. That’s it. The screen is dead. You can’t make a call. The only option you have is to recharge the battery.

I find energy difficult to write about. I can’t quantify it like I can quantify calories or steps or weights. Energy seems elusive, hard to pin down. Even though I am using the battery analogy, I don’t have a charge meter on my arm. I can’t tell how much battery I have left at any given point in time. So if it seems like I’m pondering as I write, it is because I am pondering as I write.

Many of us with chronic conditions are a bit like a mobile phone. The battery has a limited capacity. I’ve written about fatigue/lethargy before too, in When was the Last Time You Yawned? Working full-time hours again, I have had to revisit my condition management plan to ensure I avoid the dreaded Boom/Bust Cycle. So far, I’ve managed, although my weight training has taken a bit of a back step, sadly.

The difference between me and my phone is if my phone goes flat, I can plug it into power, turn it on and make a call. If my battery goes flat, that is it. Coffee is not going to help. A sugar hit is not going to help. In fact, either might make the situation worse. Imagine if that phone battery could actually go negative and had to be charged back up to zero before use, even when connected to power. THAT is how we can be (not how we can feel, how we can BE) if we are not careful, if we break the rules.

While I was working part-time, I had everything worked out beautifully for me. I got the exercise I needed, the sleep I needed, I did my job well. I never let myself get a flat battery.

While I was not working in the early part of 2020 my plan was to pace up my exercise to build physical resilience in readiness for a new job. With the success of my new treatment, I could do this. There were some interruptions! A knee put me in hospital, then Covid-19 lockdowns followed by a total knee replacement meant things were a bit stop-start, but I was way ahead of where I had been at, say, the end of 2016.

Working full-time has changed how I can arrange my time and also shone a light on the fact the boom/bust cycle is still very much a risk. There have been times at the end of the work day where I quite simply feel my brain shut down. It goes from 90 miles an hour to a dead stop. Nothing I can do about it. The battery is dead. It isn’t just about physical activity, this battery also runs our brain.

It is challenging for people who have no prior experience of these sorts of conditions to understand what happens. After all, many of us, myself included, LOOK fine! It took my daughter some time to come to grips with it, but she now asks “Do you have enough spoons, Mum?” when suggesting something.

I’ve become better at declining social invitations – no, not on an evening before a work day, or no, not two events on one day.

Every activity we do uses battery power. Showering, drying our hair, driving, working, exercising, cooking. In my experience some things use more battery power depending on the time of day: driving is a classic example. Driving for one hour in the morning is not nearly as tiring as driving for one hour in the evening after a day at work. It is almost as if once the battery gets low, it depletes faster. We have to be aware of all these things. I don’t want to cause a fatal car accident because I lose concentration because I haven’t paid heed to my battery level. Look at the pace column of my walks in the image above. the first walk of the day is the fastest, the last is the slowest. This is a constant pattern.

Early in my journey, I would have been unable to do a weight training session and grocery shopping on the same day. That would have used way too much of my battery. Even now, I shower in the evenings. Why? Because I can do it at a slower pace in the evenings and I am not using up vital battery life I need for the work day.

A good night’s sleep should recharge us, you say? We wish that were true. In many cases it is true – unless we have drained too much – then we end up in that negative charge scenario. Not good. However, disrupted sleep is often a symptom experienced by those with chronic conditions. Imagine trying to charge your flat phone, but the charger plug keeps falling out of the phone overnight. In the morning your phone battery is still at only 50%. That can be us.

Strength can fluctuate as well. I happily did 32 kilogram chest press sets one day with every intention of increasing next visit. Next visit I struggled with 25 kilograms. Why? No idea. By no idea, I mean no rational “healthy” explanation. Just that day my body said, “No, not today”.

Endurance is linked to our battery too. Some days I can walk two kilometres easily in one walk – other days I have to stick to three separate one kilometre walks. I’ll feel exactly the same at the start of any walk – then sometimes the body just says, “No, not today”. Part of this is linked to my not having the time available at the moment to consistently Pace UP. Between work and weather I have been limited to grabbing my walks in a somewhat patchy manner which breaks all the rules of pacing. Consistency is key. I’m not getting consistency. I suspect similar applies to the weights.

It is very hard to explain to people what this whole energy thing is like. How we constantly have to be aware of how much battery we’ve used. Healthy people would not, for example, think of having a shower as using energy, or should I say using any great amount of energy. I can assure you, many of the chronic illness community will attest to having to rest after a shower.

In my last article I raved, quite rightly, about the medication I am on. I also stated it hadn’t completely solved the energy/lethargy/fatigue aspect, or the “brain fog”. Despite my writing about energy today, these aspects are still much improved from where I was three years ago. To give some sense of measurement, three years ago I was working 24 hours a week and Saturday morning would always be a recovery morning – I’d do nothing until at least noon. Now I am working 38 or more hours a week and I’m actively doing something by 10 am on Saturdays. I might be at the gym, grocery shopping, doing laundry: I’m active. So a major improvement. And some quantification, which makes me happy!

However, I’ve had to cut my second weight session a week because the energy required to drive to the gym, do weights, drive back and then shower is more than I can manage at the end of a work day. I rarely write any more because usually by the end of the work day my brain has said, “No, not today”. I started this article on December 31, it is now January 16 and I still feel this is very scrappy writing. On the other hand it is a very scrappy topic: as I said I can’t quantify it very well. My thoughts about it come and go: after all, we learn, over time, to live with it. It becomes our new normal. At the same time we recognise that our healthy friends, family and co-workers can be baffled by something they have no experience of and it is not visible.

When I wake up in the morning, assuming I haven’t overdone it the day before, I feel perfectly “normal” just as I did before I became a chronic condition patient. The main difference is at the end of the day I will NOT feel as I did at the end of a day back then. Furthermore, depending how much “charge” I use during the day, I could hit that flat battery state earlier in the day. Other patients will not be as fortunate as I am, I am aware of that. So readers, just because I say I can do something, DO NOT, please do not, assume your mother, father, sibling, friend or co-worker can. They may be “better” or “worse” that I. I am simply n=1 – I’m not a study, I’m just one example trying to explain what it can be like!

As I write, at the beginning of 2021, I am very concerned for the long haul Covid-19 patients, many of whom cite fatigue as an ongoing issue. While the studies of this phenomenon may shed scientific light on ME/CFS, we will also have more chronic patients. My thoughts on society and chronic conditions are expressed in Society and Chronic Health Conditions. As communities, we have challenges ahead.

Make 2018 YOUR Year for SMART Goals

Seasons Greetings to all! Christmas is 30 or so hours away as I write (for those of us in the southern hemisphere). As the sun sets on 2017, we have an opportunity to re-evaluate our health progress and polish up our plans to get stronger, more active, more mobile and have less pain, less lethargy, better sleep: culminating in a better quality of life in 2018.

If you are still in “I’m thinking about it” mode, take stock over Christmas. What invitations did you turn down because you didn’t feel you could summon the energy required? Would you like to accept those invitations next year? Were you able to do the shopping you wanted to do without crashing in a heap for two days afterwards? Make 2018 the year you make the choice to include moving more into your treatment plans.

Talk to your doctors, get a clear understanding of what benefits you may expect from moving more.

SMART Goals

Now that my recent treatment change is behind me, I’m making more ambitious plans for myself and setting new goals for the new year. SMART goals. SMART goals are used in many walks of life: I’ve seen various wordings used depending on the context. For our purposes, I like the following definitions.

S = Specific. The goal needs to be something specific, not a nebulous idea.

M = Measurable. If we can’t measure our achievements against the goal, we won’t know if we are getting anywhere.

A = Achievable. It has to be achievable. If I set myself a goal of climbing Mt Everest, while both specific and measurable, for me it is not achievable. Swimming a two kilometre session – THAT is achievable.

R = Relevant. You will see realistic often used in this spot, but for our purposes I prefer relevant. We have limitations on our energy, our strength and our time. There is no point in setting goals that are not relevant to what we wish to achieve, which is better quality of life.

T = Timeboxed. There needs to be a time period within which you will achieve this goal. This helps to hold you to account and stay on target.

Let’s give it a try. “My goal is to swim two kilometres.” Is this a SMART goal?

No, it isn’t. While it is specific, measurable, relevant and (I hope) achievable, I have set no time target. “I want to walk more”, while relevant and achievable, is not a measurable goal – “more” could be anything. Walk longer distances or walk more often? Nor is it timeboxed. Walk more by when? 

Let’s have another go at this. “My goal is to swim a two kilometre session by 30 June 2018”. Now I have a SMART goal. I will need a progress plan to reach that goal, so I will need shorter term goals to get there: “My goal is to swim 1.2 kilometres once a week by 28 February 2018”.

That is one of my goals. Yours may well be something along the lines of “I will do my stretches every day for the month of January.” This is specific, measurable, achievable, relevant, timeboxed AND will set you up for the next step in establishing a movement as medicine strategy.

A walking more SMART goal could be very simple. “I will walk for three minutes, five times a day for one week”. At the end of the week a new SMART goal can be set. Remember when setting goals to pace yourself, always pace yourself.

Kyboot

For context, I was on crutches for much of 2014. I was diagnosed at the end of 2014. You can read how I started back to moving more on How tough is it to get moving?. My major goals for 2018 are:

  • Swim a two kilometre session by 30 June 2018.
  • Increase my daily step count to 10,000 steps a day by 30 September 2018.
  • Increase my leg press to 160 kilograms by 30 June 2018. (I was at 140 kg before my treatment change – I have to work back up after dropping back).

As I achieve those, I will set new goals during the year.

Of course, I have one other goal: help others get moving! I am back to normal availability after my recent hiatus, so reach out. It costs nothing to investigate the possibility.

Have a great time over the break! Stay safe!

Beat the Boom Bust Cycle

BOOM! You feel great! You do all the things you’ve had to put off. What a sense of achievement!

BUST…… Can’t move, feel totally wiped out, no energy……

And so the cycle goes.

While the boom/bust cycle is certainly applicable to pain, today I am looking at another symptom of many chronic conditions, fatigue. Lethargy can be a better description.

If you google “fatigue and rheumatoid arthritis” you will get about 579,000 results. Similar with other conditions. “Fatigue and lupus” will find about 705,000 results.

While fatigue can be, often is, linked to pain levels, I have found it can also not be: I can be fatigued without pain. Thankfully, not nearly as much now because I’ve adopted strategies to manage the fatigue much better than I did in the early days. As will be the case with many people, there may be more than one condition involved. In my particular case, hyperthyroid, a condition that may cause sleep disruption/lack of sleep quality – not something that helps a person suffering fatigue.

I still remember one particular day early in my journey. I woke up feeling FANTASTIC! Off to the gym I went, did a great workout, did the grocery shopping on the way home, changed the linen on the bed: and then collapsed. I had no energy for three days. Not how I want to live my life.

In an earlier article on removing stress from our lives, I spoke of certain practical changes I made. Not all were for stress alone.

The following should be read as ideas. This is some of the things I’ve done: all, some or none may work for any other individual, or may simply prompt thoughts about what might be applicable in your own situation.

Depending on how aggressive your condition or conditions are you may not need to be this drastic. Lifestyle changes such as exercise, eating well, ensuring adequate hydration and good sleep hygiene may be sufficient. The Arthritis Foundation has a short introductory article on beating fatigue with lifestyle changes. I certainly incorporate all those (especially the exercise, of course) in my life!

Don’t Overdo It!

Rule Number 1 is the same as Rule Number 1 for pain management. On the “BOOM! I feel so good today” days DO NOT rush around madly doing a list of things a mile long (shopping, go to the gym, vacuum etc etc). Especially in the early days (battling the guilt of not getting things done) we can go completely overboard on the BOOM days. Guess what? The next few days are awful. BUSTed. Then we feel awful again because we aren’t doing what we feel we should be doing…… around and around it goes.

Even now, I never do my grocery shopping the same day as I do a strength workout. I don’t do a strength workout the days I go to my day job. I do not check my work emails on the days I am not in the office (that took discipline, developing and sticking to that rule). I plan ahead and I PACE myself carefully.

RELOCATION

When I was appointed to my current role, I lived a considerable distance from my new work location. I love driving, but spending an hour in peak-hour traffic in the morning and up to two and a half hours getting home after eight hours in the office was NOT a happening thing. Not only did I find driving on the freeway in second gear extremely stressful, an eleven and a half hour day was just way too much. The best solution for me was to relocate closer to work.

I can now drive door to door in ten minutes, or I can take a tram and be there in twenty minutes. No stressful driving conditions and a much shorter day.

Reduce Working Hours

This is a tough one. Again this is an aspect of life that can relate to both stress and fatigue. If you are fatigued, you are less likely to perform as well at work and that creates stress (and in some cases, guilt). If your work is being a mother and a wife, the same feelings can apply.

In either situation, reducing working hours can be difficult. There are financial implications of reducing paid hours of employment. For a mother, who is going to do the work?

I have been extremely fortunate and am extremely grateful for my situation. The reduced hours I work allow me to feel I am professional and effective when I am in the office, yet I get enough time to ensure my exercise regime is followed, I can prep meals on a day off for the days I work and I get adequate rest. I can also schedule medical appointments on my days off without feeling guilty for taking time off work.

No, financially it is not as beneficial as working full-time. But I am a lot healthier.

Exercise

Yes, well, it goes without saying that would be high on my list of recommendations! Limberation would not exist if I did not believe so strongly in the benefits of exercise. I won’t repeat my How Tough is it to Get Moving article here, I’ll just repeat, when I say exercise, I’m not suggesting you rush out and start running 10 km a day!

The days I do strength workouts I ALWAYS sleep well that night. Exercise has definitely helped alleviate my fatigue.

Healthy Eating & Hydration

Particularly, I have found, a problem if you live alone. When you are so tired you can hardly keep your eyes open (but of course you can’t sleep either), perhaps also in pain, maybe also stressed because you missed that important deadline at work or missing the school concert: guess what, taking the TIME to eat properly, or even enough, just seems to fall by the wayside.

Once I started making sure I ate enough protein and stopped depending on “easy” solutions such as toasted cheese sandwiches, I did indeed feel a lot better. The meal prep mentioned above is not just about time, it is also about ensuring I have nutritionally balanced meals right there when I am too tired to cook.

Drinking enough is also crucial. I find I am good on the intake when I am at work or the gym. I am slack when I am home – the water bottle always seems to be where I am not and I forget. I certainly know about not drinking enough later on though.

Don’t Worry About the Ironing

Or the vacuuming. Or polishing the furniture (a quick dust will do). Yes, you must feed the cat, dog, fish or bird if you have one. Vacuum one room a day. If you are in a family environment, delegate the ironing if possible: if living alone a) buy clothes that don’t need ironing or, b) iron one thing the night before. Hide the ironing basket in a cupboard out of sight, not only of visitors, but out of sight of yourself so you won’t be tempted to overdo it!

Sleep Hygiene

There are lots of different sleep hygiene strategies/techniques you can try, from breathing techniques to relaxation music, yes, even counting sheep will work for some. Temperature of the bedroom is important, put the screens (iPad, phone, TV) away well before bed-time. Talk to a professional about strategies that might work for you.

This one is an ongoing challenge for me, so I have no brilliant suggestions of my own to share. I know it is important and I’m working on it!

Why the Cat?

Why is my cat the photo? Because Cleo is doing what we must all do. Learn new things, within our restrictions. I don’t have an area I can let her experience the great outdoors freely. Learning to adjust to a harness and lead allows her experiences she would otherwise not be able to have.

Our harness is learning to PACE ourselves, so we can still have adventures.

Additional Resources:

A very interesting media release from 2007 by Arthritis Australia is worth reading, Women’s Insights into Rheumatoid Arthritis.