Weirdly, as inaccurate as the movie depictions were of quicksand, they make an excellent analogy for activity and ME.
TV and movies taught me that if I fall into quicksand, the worst thing I could do is struggle, and that the best thing to do is relax and let the water support my body. That is sort of true** for some forms of quicksand. That may be helpful, if incomplete, advice for anyone trying to cross the Fire Swamp to escape a 6 fingered man, or survive the Sainai desert with T.E. Lawrence, but it’s even more important advice for someone with ME.
Research shows that for almost everyone, increasing fitness and staying active is helpful for illness prevention and recovery, and for long term wellbeing and longevity. However, ME differs from most, if not all, other chronic illnesses in that staying active and pushing oneself will cause it to get worse.
The Exercise Intolerance and Post Exertional Malaise of ME are unusual, to the point of being used as one of the defining characteristics of the disease in the International Concensus Criteria. When someone with ME moves, thinks, or just even just digests their food, their bodies get tired. If they get too tired, the next day, they will be less able to do the thing that made them tired yesterday.
As a result, ME is like quicksand. The more we move, the more we fight, the more we resist and panic and try to pull ourselves out, the worse the condition gets. Pushing through the exhaustion and pain, being determined not to let it beat us, and pushing ourselves to do a little bit more each day can all result in sinking further into the illness until we are swallowed up and drown.
Fighting quicksand sucks you down, making it harder to fight. In certain quicksand situations, one can reach a point where even breathing will make things worse.
What can we do to prevent the degeneration? Don’t fight. Relax into it. Let yourself float to the surface. It’s hard work to just do nothing. The current best practice recommendations for treatment of ME is doing as little as possible, then the next day, doing slightly less, repeating this until symptoms are relieved… That is now how much you’re allowed to do, so try to do only 50% of that each day***. Hopefully, over time, you’ll float to the surface again.
* ironically, liquefaction is a kind of quicksand, and liquefaction has been significant problem for me and my city over the last decade.
** according to wikipedia, slow kicks with the feet with loosen the sand and allow you to twist yourself up and around to float on your back. Spreading your weight across the surface and floating that way, lile doing back stroke will let you slowly pull yourself to solid ground. This only works in wet quicksand. Dry quicksand has no self rescue methods, as far as I can find.
*** This may sound ridiculous, but most people with ME have trouble doing nothing, so while they make think they’re resting, they may still have done their taxes, read 4 articles, folded 2 baskets of laundry, and walked the dog. Making us really notice the energy we’re still expending and recognise how little we should be doing so we do not overdo it is the real challenge here. We’re warned constantly about the risks of deconditioning, but I’ve never met anyone with ME who consistently manages to over rest. By aiming for 50% of our minimum, we hope to hit closer to 80% on a regular basis and stay under 100% most of the time. I’m trying to remember which article it was that covered that side of pacing.