Tracking Energy & Fatigue When You Have a Chronic Illness

Tracking my chronic illness symptoms has been very valuable for spotting trends and just understanding my illness overall. But did you know I also track other habits and self-care routines that affect my overall well-being outside of my lupus flares? I track some of these on the Flare Symptom Tracker and some of them I look at more closely or track completely separately on their own pages. My sleep & energy tracker is an example of something I keep on a separate page. Why?

The simplest reason is because when I’m not in a flare, I have a lot of control over my energy from day to day. It’s super empowering to realize that decisions I make will help me have more energy and feel more like a productive human! Let’s take a peek at how and why I track my energy.

Day-to-day choices and habits that affect my energy levels

The purpose of tracking my energy is to help me see patterns and to keep myself accountable when I am not in a flare. Outside of a flare, I know I have some control over what affects my energy because tracking has taught me this! I can easily see the pattern between nighttime sleep, naps, water intake and food choices and how it affects my energy levels. During a flare, I still want to be on track with these habits because they will help my overall well-being and they do play a role in how I get through a flare.

For me, the biggest factor affecting my daily energy outside of a flare is the amount of sleep I got the night before and whether or not I’ve napped. I need a ton of sleep, so if I start to see the amount of sleep I am getting fall off, and I don’t make time for naps, I will definitely see a drop in my energy levels.

Two other major factors that affect my sleep are my hydration level and whether or not I’m making good food choices. These are two things I do actually track on the flare tracker as well, partly because when I’m in a flare I really want those two self-care habits to be front and center in my mind. Some may feel that’s overkill, but I like it this way. 🙂

If you’re starting to track your own daily energy levels, you may want to start by identifying the things that affect your personal energy. For most of us, sleep will easily be on this list, but there may be other factors, such as:

• Physical activity may either wear down your energy or it may actually increase it
• Mental stimulation (reading, solving problems, etc) could be draining or stimulating
• Social interactions can drain or stimulate your energy
• The types of food you eat can affect your energy
• Hydration, vitamin and mineral balance affect your energy
• Stimulation and crashes from sugar or caffeine
• Rest periods during the day (naps or meditation)

How fatigue symptoms affect my energy levels

If I’m in a flare, fatigue will be the number one reason my energy is low. While I should definitely be making good self-care choices, sometimes all the sleep in the world or other self-care habits won’t bring my energy level up if I’m fatigued.

So, what is fatigue?

First, I should start by saying that the word “fatigue” can mean different things to different people. But in the chronic illness world, it is generally understood that “fatigue” is NOT tiredness. Here’s the difference:

Taking a nap, going for a walk, changing your activity to something more stimulating, or drinking caffeine will typically relieve tiredness. It may be short-lived, but you will generally feel refreshed or have renewed energy for a time if you do something to address your tiredness.

But none of these activities will relieve fatigue.

If I am having a lot of fatigue, a nap is not going to make me feel less fatigued. I’ll wake up feeling the same as when I went to sleep (sometimes worse). Walking doesn’t help… caffeine doesn’t even dent it… in fact, there is very little I can do during the day to wipe the fatigue away. All I can do is modify my day to cope with the fatigue.

Fatigue can be caused by illness symptoms, medication side effects, inflammation, brain changes, depression/anxiety, and pain. It can affect your quality of life. It can stop you from doing things you love, spending time with friends and family, or being able to work. Fatigue affects your energy (like tiredness), but it also affects you physically, mentally, and emotionally.

Because fatigue is actually a symptom of so many chronic illnesses and mental illnesses, it’s something that is treated medically and is not something that typically fluctuates from hour to hour the way tiredness can. For me, all of the factors I listed above (especially pain and medication side effects) can affect my fatigue level.

I hope that helps clarify the difference and why I don’t compare my “typical” daily energy levels to my flare symptom fatigue levels! Let’s look a bit closer on how I track both and why they are in different trackers.

Tracking Energy in my Bullet Journal

Two of my trackers are back-to-back in my journal — my water/veg tracker and my sleep/energy tracker live right next to each other so I can look at any given day and see how things are related. (I’ll admit it took me a few months to realize they should be next to each other!) Here’s how these trackers look in my bullet journal:

I track how much water I drink during the day (I track glasses, not ounces), and how many times I ate vegetables or fruit. I am not currently tracking how much sugar I eat but I am making changes to include this soon since I know it plays a big part in my energy levels (can we say sugar crash!!?)

For my sleep tracker, I keep tabs on how many hours I slept at night and how long I napped during the day. And the last column here is a simple rating system for how much energy I had during the day. Five hearts means I had great energy and felt very productive and alert. One heart means I was dragging, felt tired and had a hard time accomplishing my tasks.

One thing to note here is that if you were to look over any of my monthly trackers by themselves, you would see that energy levels for any given day may not correlate to the other things on my tracker. For example, I might have done everything “right” one day and still had terrible energy. What isn’t really shown here are other factors like schedule changes, life stuff (family in town, a draining doctor appointment, etc.) or illnesses. Those are generally noted in other places in my journal and I try to only focus on overall patterns here and not individual days.

Understanding the monthly patterns and not getting bogged down with the daily details is why I created the Tracker Summary page (check it out on the Printables page here). When the month is over, I go through my trackers and summarize trends, what I learned and what I could do differently. Being intentional about this has really helped me find patterns!

Tracking fatigue in my bullet journal

Since fatigue is a symptom and side effect of my illness, it is tracked in my Flare Symptom Tracker. If my fatigue levels are going up, then it’s quite possible I’m heading into a flare. I can see this because my past flares have shown my fatigue levels rise and stay high while I’m in a flare and lower when I’m not.

I talk more about the number system I use in my video for the flare symptom tracker (watch it here!), but I’ll give a quick overview here with relation to fatigue tracking. When I first started tracking I decided to think through and understand my “baselines”. How do I feel on a typical day without being in a flare? Even though lupus is a disease of flares and remissions, there are still daily symptoms and medication side-effects I manage every day even when I’m not in a flare.

When I track my Fatigue level, I am starting at my “baseline”. I only assign a higher point if I am feeling like my fatigue is higher than what is “normal” for me and what is above my baseline.

When I was first diagnosed and wasn’t fully treated, I went through a really bad episode of fatigue. It was a few weeks before Christmas and my family was bringing in our Christmas tree. This is one of my all-time favorite family traditions and I was so excited when I woke up that day.

But as the day wore on, my fatigue became unbearable. As the kids were bringing the tree upstairs, I remember sitting on the floor up against the wall and just feeling like I couldn’t function. I felt I NEEDED to sleep. I closed my eyes and fell instantly asleep among all the chaos and excitement. It was like my body shut down. I didn’t stay asleep, of course, but it was an alarming sensation to crash so hard and feel like a limp noodle on the floor.

That would have been rated a 3 on my tracker. 😀

So, what if you have just been diagnosed, or you’re in a flare, or you have started new medication and you are having some terrible fatigue symptoms. How do you rate your energy levels then?

Great question! The truth is, if you’re in a flare, every one of your trackers is probably going to be affected. You will see your flare symptoms seeping into all areas of your life! So, you will see your energy level drop, as well. But the thing is, when you are out of your flare, your energy level is (hopefully) going to be something you have a bit more control over again.

That’s why I don’t focus on only tracking symptoms of my illness that are out of my control. Instead, if I also track daily habits and self-care, I can begin to see how different things affect how I feel when I’m not in a flare and how I can take control over my own health overall.

I hope this has helped inspire you to track your own energy levels and reflect on what you might be able to do to improve your overall energy when you’re not in a flare! I encourage you to make a habit out of helpful self-care routines and then reflect on what patterns you may be seeing when you start tracking!