It turns out that energy isn't simple or straightforward. Each of us have bodies that will have different ways of communicating fatigue to us. And - because we actually want to be able to be productive members of society and participate in the important moments of our lives - we tend to have gotten very good at ignoring the early warning (and even later warning) cues that our bodies give us. It's like we hope against hope that if we ignore them, they will go away and we can have our lives back!
As humans of the 21st century we have got it into our heads that we can know all the things. That we can predict all the weather.That we can heal all the diseases. That we can guarantee that we will not only have food to eat, but that we can have exactly the right food to eat at this moment whenever we feel like it. That since we can put people into space and go to the moon and launch rockets that can destroy cities in moments and have a face-to-face conversation with someone 10,000 km away from us that surely we can be certain about what is wrong with us. Except that sometimes, even today, we can't.
We might never admit it to anyone else, but we sometimes like to believe that we live in a twisted Otherworld. This Otherworld (also known as 'Solipsism') is often seen as an issue just for people who are on the Autistic Spectrum, but the more I talk to people the more I think it's there for most of us unless we have consciously made a different choice. In this Otherworld, the world revolves around me: people exist to make me happy and their negative responses are deliberate and malicious attacks against me. And while most people don't take it all the way to it's logical conclusions, it does seem to show up more often than would be strictly speaking helpful.
Fatigue is a part of most people's regular experiences. It affects people who deal with mental health issues like depression. But it can also take on a whole new dimension when dealing with chronic pain, disease or disability.
When we train, we do a lot of base training - training at a pace slow enough for Trevor to be able to engage in conversation with me. Aside from turning training into date-time, this builds up his cardio and his endurance over weeks and months, and we've seen quite significant improvements using this technique. Since I can't see Trevor running, I use my ears to listen to the rhythm and cadence of his footfalls, and to listen to his breath to help him dial back or pick up the pace accordingly. And when we get to the hills, we have a little mantra, "deep breaths and baby steps".
There is this tendency to want to "fix" people. To make it so that they stop responding "inappropriately" or "fit in" better. But what if we viewed those with disability, autism or mental health issues like canaries - vulnerable yet valuable members of our community, who had the capacity to help us see when we might be in trouble, and make adjustments to the way in which we were living sooner rather than later?
I happen to be part of a very awesome, very unique family. My husband has autism. Both of my surviving children have autism. And I am probably somewhere on the atypical autism spectrum. Which means that all of the fun and challenges of living with someone with autism is multiplied by a factor of four.… Continue reading Joining