So Now I Know What NOT To Do...

"With pacing, the goal isn't to use as little (or as much!) energy as possible, but to find a stable amount of activity you can do each day that won't worsen your symptoms."

-Visible Pacing Lessons

  Pacing is something I'm not very good at, as evidenced by my new lowest stability score on my Visible app* this morning. So why am I writing about it? What could I possibly have to offer you on something I obviously am not doing well in? Well, I want to get better at it. I need to get better at it. I have found that putting in the research and learning to put together a post helps me so much to grow in an area, so you're getting insight into the mind of a Salty Zebra. 

 Yep, you read that right. That's a 1, a 1 out of 5. And as it reads below the 1, I am, "Out of balance." How did I get here? Well, I worked pretty hard at it, I can tell you that much! This month, I traveled to Florida, spent 10 days at Disney World with my family, traveled home from Florida, found out my husband had been laid off and spent two weeks (so far) trying to process and support my husband through that, and then I traveled down to the beach (my happy place) where I did less physically until yesterday, beach house cleanup day. You see, we learned during the first year of owning our beach house that we didn't want to spend half of every trip down there doing maintenance, but there is a lot of maintenance that goes into owning a beach house! So, we instituted beach house cleanup weekend on Memorial Day weekend where we invited the friends and family that had used the house that year to join us in a "Many hands make light work" time of getting it all done. Think of it as spring cleaning on steroids. After a few years we learned that really it was best run as a day instead of a weekend, and ever since we've hosted it on the Saturday of Memorial Weekend - rain or shine. The four-story deck needs to be painted every other year because of the weather damage and salt air. The outdoor lighting needs to be replaced, as well as the barbeque, for the same reasons. The green slime needs to be cleaned off the deck chairs. The bushes have to be trimmed back. And that just on the outside! There's a significant amount of indoor maintenance that has to be done each year from heaters to smoke detectors to light bulbs to deep cleaning of windows, dusting, and MASSIVE amounts of laundry. That's my job, coordinating the indoors. And I'm good at it, the coordinating anyways. 

 Can I tell you how hard it is to resist the urge to clean your house before people come over to clean it for you? But it's even worse to be present when they are cleaning it for you and not overdoing it yourself. The last four years I have opted out of the cleaning day for just that reason. In 2022 and 2024 I knew that it would be too much for me to even be present, that I could do nothing and I couldn't make myself sit still and let others do it around me. In 2023 I was in the Neuro ICU, so that was an easy call. But this year, I thought I could give myself a list of things that were really needing to be done by me anyways but wouldn't be too labor intensive, so I could manage it. I was wrong. I just can't balance my energy well, taking the necessary time to rest, when others around me are actively working. I can't do it! Plus being social, while wonderful, is draining as well. So I overdid it yesterday. And that was on top of it being a recovery day as I had had a terribly migraine day the day before. That's double overdoing it. And, I'm still recovering from our trip. That's triple overdoing it. And that = a '1' stability score I guess. I don't know what my stability score was on our Disney trip because I left my armband at home and ignored it completely. I knew it was going to be more than I "should" do, but I didn't care because I was going to do it - even if it killed me. This was my one shot, and I was going to take it. And yes, I am still and will be for the foreseeable future paying for that.

So that's how not to do pacing. Got it. Where do we go from there? I want to get to that stable baseline to start with. Why is that? Well, I've learned that staying within my spoons, or PacePoints, helps to lower my symptoms including pain, fatigue, brain fog and more. Over the last several months, I've learned that pacing may be my only option for managing these symptoms as medications and treatments have failed one after the other. If I want to feel better, I have to do better.

So why don't I? Well, for one thing, I'm stubborn. I want to do something, and I feel like I "should" be able to do it, so I do, even if my body is crying out telling me that it's not a good idea. Sometimes I feel like I "have" to do something, whether that's true or not (the beach house cleanup day would be an example of this). 

 So, that's some of the "why" that I don't stay within my spoons/PacePoints. I think recognizing those things is the first step to doing better, which is what I need to do. So what's next? How will I do better? Visible started offering some pacing lessons in the app this month, very timely if you ask me! I learned that there are three types of energy that will cost me spoons/PacePoints: physical, cognitive, and emotional. 

 Physical activity is pretty straightforward, it's the energy you use in physical activities. It can get a little more complicated than that though. You see, doing the same activity in different situations, on different days, and at different times of day can cost you more points. For example, if I go on a walk in the morning on a good day, it might only cost me one point. If I go for a walk on a hard day in the afternoon, it might cost me 3 points, but it also could put me into an energy spiral where if I try to take a nap afterwards I can't get down into the rest zone and that nap actually costs me points as well! So, I need to take into account where I'm at in my day and my stability score before deciding on how, or even whether I will take part in a physical activity.

 Cognitive activity is a range of brain-related activities, including planning, remembering, learning, concentrating and general thinking. Doing these things requires/uses energy and if your energy is low, it explains why you might make more mistakes (like putting the coffee in the fridge instead of the milk). You participate in cognitive activity when you are working on the computer or learning a new skill by reading a book, but you also participate in cognitive activity when you watch a new tv show or lay in bed daydreaming about a trip to Hawaii. Really, you are always using cognitive energy, just to greater or lesser extents. When you are trying to do multiple things at once, like cooking something on the stove, while chopping and prepping the next thing, and chatting with your daughter at the same time, each activity costs an exponential amount of energy. So if I were to do these three things separately, they might each cost me 1 point, for a total of 3. But if I try to do them all at once, they could cost me 6, or even 9 points! Thus, I will used less energy overall if I do one thing at a time, even if it takes longer. Turns out I actually have more time than energy anyways, so this works out!

 Finally, emotional activity is just what you would expect it to be, energy that is used because of the emotions you are feeling. This might be a low level of energy when you are happy or content ranging to a high level of energy if you are scared, angry or excited. Just like with physical energy, it can cost you a differing amount of spoons/PacePoints for the same emotion based on the circumstances. If I am at the beach house on a restful day and I lay down to take a nap and I'm happy about where I'm at and my comfy bed and the sounds of my little dog snoring on the floor next to me the happiness will lull me to sleep and I will rest. On the other hand, if I'm at Disney World watching my family experience attractions for the first time and get along with each other, the happiness I feel will more likely increase my energy expenditure because it's more along the lines of excitement. Emotional activity can be tricky, though, because it is harder to identify in the moment, and even if you do, it is harder to change. If you're scared of something, to the point where it is costing you emotional energy, it is quite difficult to tell yourself that you don't have enough energy to be scared right now and you have to stop! In addition, socializing, even in a positive environment that we are looking forward to, can cost us a lot of emotional energy. This requires forethought to get adequate rest leading up to, during and after the activity. That said, socializing is important as it keeps us emotionally and mentally healthy. It just needs to be done in a smart way.

I learned earlier this year in a memorable way that cognitive and emotional spend detracts from my energy budget, but the Visible lessons gave me some ideas as to how to identify these things and adjust. They gave me some good steps that offer an excellent starting point.

1. I'm going to start keeping track of my activities in the Visible app for a while, my target is two weeks. I hate doing stuff like this, but the data really does help me to make more helpful decisions. My goals behind this are:
• To identify which activities are restful for me
• To identify which activities are costing me the most energy
• To possibly find ways to reduce the amount of energy used by those tasks.
• Consider how to change exertion activities into regular ones (like cooking) by spreading out the tasks so I'm not doing more than one thing at once and taking breaks along the way.
• Choose WHEN to do an activity so that it will cost the fewest points
• Have a strict plan or clear directions (i.e. use a recipe for something you know how to make)
2. Take more frequent and longer rest breaks in between activities while purposing to do something more familiar as rest (i.e. rewatching a familiar show or movie) as learning and thinking require more energy.

3. Reduce the amount of time each day I spend in the exertion zone as you spend the most points here.

Here's the Thing: Change is hard. Learning something new is hard. Saying, "No" to yourself is hard. This whole thing is hard, but the pacing lessons in Visible reminded me that you need to be patient with yourself as you're learning about pacing. All I can do is my best, and that best will be better if I don't beat myself up about it 🤪

* This is a referral link that will give you $20 off your membership if you join and give me a $20 credit towards mine!