This past week I’ve been doing a lot of thinking about the concept of energy. Energy, in the context of what I am looking to discuss is essentially the thing that gives us an ability to do something, like thinking, walking, talking and riding a bicycle. A more detailed definition found online notes that energy is “the strength and vitality required for sustained physical or mental activity.” This definition resonates with me because in spite of my struggles and from my very simplistic perspective, I’ve never been unable to do “something” as a result of my MS and my MS symptoms. Unlike some others in our community, I have not lost my eyesight or my ability to use any of my limbs. For me MS has, at times, reduced my “strength and vitality required for sustained physical and mental ability.” In short, it has reduced my energy to ‘do things’.

Another reason why I relate to this definition is because in my work life, the term sustainability is used to describe the ability for something that is working to continue to do so. Work speak warning, replace “something” with “a process or a control”. Things that aren’t working first need to be “fixed” or “remediated.”

In the years since I was diagnosed I have thought more and more about the concept of energy without necessarily putting my finger on why it is so important. For instance: How much energy do I have exactly? What are the factors that influence my level of energy? Am I doing the things that make best use of my limited energy?

For me, there are a lot of negative emotions that come to mind when asking these questions. Denial, shame, guilt, sadness, hopelessness all come to mind. I’ll say things like “I’m not that tired” or “I will stay home today because I don’t want others to see me like this” or “I should be doing more than I am” or “This sucks, I used to be able to do more during my day” or “What’s the point of even trying?” In spite of the many benefits of establishing boundaries and sticking to them, having to say “no” time and again in the context of all these negative emotions that I associate with having MS has had the cumulative effect of creating a lasting scar.

The reality is we all can relate to changing levels of energy throughout our days and throughout our lives. This isn’t something unique to the MS community. What’s different in the MS community is that this process typically happens much earlier in life and is much more unpredictable day to day and even hour by hour. I know for me I have reminders of this everywhere I go because of the lens I have on the world where the quote “get busy living or get busy dying” from one of my favourite movies evokes the need to do as many things as possible to maximize what I am “getting” out of life. I have so much more to say but Baby Yoda is imploring me to move on and “pack your bags you goof or the RV is leaving without you.”

Bless both my therapists this past week for their contributions to my wellbeing. One kindly suggested to not book a session in the upcoming week but instead offered to remain available as needed throughout my journey. The other offered to work together to draft a plan that would serve me well for the challenges that I am about to encounter on the road ahead. As she often does, she used an analogy by describing Mel Robbin’s concept of “Blue Water”. At first I was confused but before long I was feeling more and more like the Jedi apprentice I love to think that I am. The “Blue Water” analogy was an eloquent way of speaking to the things that give us energy. “I know where this is going” I’m thinking… “what are the things that are going to fill my tank.” I’ve now jumped a few steps ahead and I am already generating my list as the explanation goes on. “Encouragement” I blurt out… “Encouragement gives me energy.” I am gently nudged to keep building my list. “Thinking about why I am doing this ride gives me energy. Speaking to follow MS’ers gives me energy because it reinforces my why.” We added a few others to complete the list.