Post Exertion Malaise and the importance of pacing

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One of the most essential tools for recovery is pacing.

With ME/CFS, we are in a state of perpetual exhaustion. We have very limited energy and our body is not able to generate energy at the rate it used to.

If we use more energy than the limited amount we have, we get Post Exertion Malaise (PEM), a delayed reaction that is often wildly disproportionate to the amount of energy used. This is the familiar boom and bust cycle that can be so heartbreaking, often putting us in bed for days or more on end.

I fall into this trap time and time again. Every time I feel I have some energy, I rush to use it. It’s just so wonderful to feel you can finally do something again, even if it’s just read a book for a short while. It’s like finally catching a break after you’ve been denied energy for so long.

Unfortunately, using more energy than we have is like taking out a short term loan at excessive interest rates. We get the energy up front, but spend much more energy repaying the debt than we received and used in the first place. It’s a terrible deal.

Even though our bodies have repeatedly made clear that this approach doesn’t work (what could be clearer than being flat out in bed for days on end?), our natural instinct is to want to push forward, to not give up, to fight this curse. This approach may have served us well in the past, but it’s the opposite to what we need right now.

To break this cycle, we need to pace.

Pacing is simply matching our energy use to the amount of energy we actually have, not the amount we wish we had or we used to have.

By keeping our energy use under our limit and roughly consistent, we avoid having to pay this unnecessary tax on extra energy usage. Our body is then able to use any spare energy to heal and build up our energy reserves. Over time, this is how we recovery.

If we continue to spend more energy than we have, it is impossible for our body to heal. If instead we save energy, we get the benefit of compound interest. The tiny bits of energy that we save can seem insignificant in the moment, but they have a cumulative effect over time.

As we build reserves, we want to enjoy the experience of having energy, without actually using that energy.

We don’t often know how much energy we have, especially given the delayed reactions, which makes this a frustrating process. That’s why it’s important to track your energy levels and monitor the trend instead of focusing too much on the day to day. Over time, we build up an understanding of our limits and whether we’re saving energy over time or spending too much.

Pacing can be painfully slow, dull and exasperating and can create tension with others who don’t understand the need for it. There are also times when it’s worth going into energy debt, even though we know we will suffer for it. Perhaps there’s a big trip you’d like to do, or a social gathering. Keeping connected to others and to the world is important, and that’s a balance that we need to decide for ourselves and adjust over time.

Pacing requires us to practice extended delayed gratification, often over many years. This is a challenge, but it is also a gift, an act of love and sacrifice for the benefit of our future self.