Pacing
I love swimming. Being in the water is like sweet relief for my body. I feel weightless and wonderful. Getting out is hard. It’s like walking into a solid wall. The air itself feels like molasses, and my body is barely able to hold itself up. Because swimming is so wonderful, I tend to stay in far longer than I should. And then pay for it in the following week.
That is not how to Pace. That is how to exacerbate post exertional malaise (PEM).
Pacing is learning how to “stay within your limits”, and “set appropriate goals”. Whatever that means. It is not to be confused with the abomination that was the PACE trial, nor Graded Exercise Therapy, which is a great way to get sicker.
I like to call Pacing, “Spacing”. To me, it seems far more descriptive of what Pacing is. Pacing/Spacing, means to space out your activities, so that, in between, your body has a chance to rest and recover. Spacing out activities, has been crucial in getting me mobile again, after years of being bedridden. Pacing becomes an integral part of your life. Doing things like reading, having a shower, eating, talking – those have to be spaced out. It’s the daily things, as well as achieving goals, that make Pacing a wonderful tool.
So… How do we Pace? What kind of goals are achievable? Measure your Pace! Use a fitbit or write it down. It is important to monitor any upward trajectory, or any trajectory, really. When I was first trying to Pace, I decided that my goal was to get to the beach. So, I drove myself to the beach once a week. The first few months, all I could do was look longingly at the water. Once this was part of my routine (which in itself is so important) I started going to the beach twice a week. Eventually I was going every day. Then I decided to walk to the water. And again, once a week, I would walk to the water, and dip my feet in the sea. It was bliss. Each week I set a new goal of walking. 10 meters each day for a week. Then 20 meters. Then 50, 70, 100 meters. The trajectory was crawling upward, my step count was going up, and my resting heart rate was going down. Bonus, I had something to look forward to every day.
Then I did too much, had a flare, and was back to square one. This is the expected outcome of an utterly love-hate relationship with Pacing. Do not be fooled. Pacing takes dedication. It is endlessly frustrating. Stopping an activity because you know you will suffer later on, takes hard-wired commitment. It can be upsetting to have to stop doing something that you enjoy, and I have certainly shed my share of tears because it seems so unfair and cruel.
However, learning to stop and Space your Pace means that over time you grow stronger and more resistant to PEM. You become more aware of triggers and warning signs. And the act of setting goals and achieving them is so, so precious. You stop thinking about all the things you can’t do, and instead shift focus to what you can do. It is positive. It gives you inner strength. You prove to yourself, over and over, that you can, that you are able. Which is utterly wonderful for the soul, especially after so many of us grieve over the life that illness stole. That past is gone. This present is a gift. You can do this.