06/14/2026
Learning a lot of new language since I got ill last year that could have also helped me for years regarding autism, especially the boom or bust cycle and pacing.
I'm going to try and explain it but please bear in mind this is relatively new to me and will be a very simple explanation of something quite complex so please research further if it interests you.
The theory is that many chronically ill or disabled people get into a boom or bust cycle, where they go hell for leather and give 100% effort when they feel a little better (boom) and then end up completely wiped out for a while and need to recover (bust). Once feeling somewhat better the cycle begins again.
Being in this cycle can result in their baseline functioning getting lower and lower and they end up able to do less and less over time.
What it means in regards to my new neurological conditional is that I can't let my heart rate go 20 bpm over my resting heart rate because that triggers my nervous system to think there is danger and my symptoms get worse (slurred speech, gait dysfunction, vertigo, migraine).
In regards to autism this would differ from person to person but might involve reducing exposure to sensory input, limiting social situations etc. It could explain why we end up in constant burnout cycles throughout our lives that end up being triggered quicker, lasting longer and take more effort to recover from.
Pacing would involve limiting our activities when we feel good, even when we feel like we can do more, to give our nervous system a sense of safety and allow it to build on that. If the nervous system recovers and then we immediately push it to it's extremes again we are going to reduce its ability to feel safe long term.
The idea is that if we don't push our nervous system and we allow it the safety it needs, over time our baseline ability to cope will increase.
Of course this isn't easy with family, work, responsibilities and commitments. We are put in a tricky spot.
And the modern world is a sensory hellscape.
And resting is seen as a weakness or laziness.
And we have to figure out what our baseline is, with no physical measurements, like heart rate, to go off.
So yeah, not easy!
Do you know more about pacing? I would be keen to learn more and I'm sure others would value your knowledge too!
Excuse my rubbish diagram 😂