Guesswork / Parece aleatório

Uncertainty and unpredictability in chronic illness and aging

Crossroads northeast of Llanmaes, which I chose because crossroads are my go to symbol for all things decision-making and certainty.

Versão em Português: Parece aleatório (mas não é)

My new training project started three weeks ago. I simplified the routines and made a realistic adjustment to my work schedule and fatigue recovery, or so I thought. I ended up with a weekly system based on the three power lifts (squat, bench press, and deadlift) and an emphasis on pertinent assistance work for the back (lower, middle, and upper) and posterior deltoids, addressing both the chronic sacrolumbar joint injury and the right rotator cuff tears. I’d train Friday, Saturday, Sunday, and Monday, when working at the office for three days, or Saturday, Sunday, and Monday, on a four-day office week.

I trained from Friday, March 28, until Monday, the 31st, and felt great. The following Friday was April 4th, and I was no longer feeling great. There was pain, sleep deprivation, and general crapyness. I learned to respect this combination, so I didn’t train that day. I trained well on Saturday, Sunday, and Monday, compressing the work done the previous week into three days and maintaining the same volume and intensity. I was on track, testing this particular training scheme with my work schedule and, until then, it was going well.

And then it wasn’t going that well anymore: Tuesday, the 8th, I woke up sore from a sleep-deprived night and went to work. I have kept a log of my pain levels for years, and now I use the total amount of cannabinoids ingested in the day as a proxy of the day’s pain levels. It’s not perfect but it gives me two useful pieces of information. I could see that Tuesday was better than Wednesday, which was better than Thursday. When I woke up Friday morning, the 11th, it was hard to move. I felt like I had both lifted weights the previous two days at a competition (meaning: maximal effort) and gotten into a car accident where I was thrown around quite a bit. It was a pain like I don’t remember having felt in over a year. I was still delusionally planning to train, counting on a cannabis miracle, but it didn’t happen and instead, I slept the whole day and night as well. I woke up much better the next day, planned to lift, and set out to work on a couple of important things involving sitting down, writing, and reading. Before lunch time pain had increased significantly and not only was it not possible to train, but the daily score was pretty high. Sunday wasn’t significantly better, at least not enough to justify training or a lower dose of painkiller, and neither was Monday. The worst day, almost as bad as Friday, is today, Tuesday, the 15th. I didn’t go to the office (the lab).

Why? What happened? No big weather changes: we expect our pain and stiffness to increase with higher humidity and barometric pressure, but that was not the case. No significant sleep deprivation, no extra stress. What, then? What happened Friday, and what happened today? Was the Friday catastrophe a typical Post Exertional Malaise episode? But why such pain (rather than fatigue) involvement (but it can involve pain)? Or was it all a result of three days of sitting too much, or the wrong way? After all, pain increases during the sequence of work days is not uncommon to me, and I never figured out the reason. If it was PEM, was training the week before responsible for what happened Friday? What about today, why did it worsen, compared to the three previous days? Is PEM an all-or-nothing phenomenon (apparently not)?

None of these questions are naive. They are all deeply informed by the best and most updated medical and scientific evidence on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), longCOVID, the physiology of normal and pathological fatigue, the physiological principles of exercise adaptation, and the biomechanics of the specific back injury I have, as well as of the lifting movements I did in training. I know all these things because I have a background that allows me to survey the literature and understand what I read and because people with mysterious chronic illnesses have a tendency to become experts on their diseases.

Not only do I know all these things, but I have experience prescribing training protocols to people in general, most of which have been athletes, many of which were injured when they came to me. I am known to be versatile as a trainer, using different periodization strategies and dimensions, and a variety of tools and approaches. But I swear I have never encountered anything as weird and hard to train as myself now.

I’ve trained myself before. I know this athlete - her motor response, strength gain dynamic, resistance, recovery patterns, supercompensation of different stimuli. I actually did well with her. But she is not the same. Right now, I have absolutely no idea about what just happened.

This is a nightmare: I frequently find myself with rejected hypotheses, rejected alternative hypotheses, and nothing to replace them. Without a satisfactory explanation of an unexpected episode of anything, I can’t predict its incidence. Without predictability, I can’t plan, and without a plan, I don’t have a long-term intervention to improve my condition. Is it possible to do that at all - plan, intervene, be effective - to improve this condition? I have good evidence and rationale that it is: I have observed improvements in one year that point in the general direction of more general conditioning, as well as more general and task-specific strength, suggesting trainability is preserved. In the same period, I’ve recorded better body composition, better sleep, better balance, better digestion, and better tolerance for “work” - work broadly understood as a goal-oriented physical and mental task sustained for a couple of hours.

That’s good, right? Can I place myself within the group of ME/CFS patients that improve their symptoms in the years? May I get excited about this? No, I can’t, because the unexplained episodes or worsening periods don’t let me adopt this more optimistic framework. Does it explain my reality? I’d love it to, but will it work? Can I use it to plan my exercise routine? My work schedule? No, I cannot.

I am still training in the fluid, dynamic and responsive approach, and that’s not going to change anytime soon.

My problem, one that I share with many millions (perhaps billions) of others, is uncertainty and unpredictability. I have a diagnosis that “seems likely” given the acute respiratory infection that I had in 2020, with lingering symptoms including chronic pain and fatigue. It is almost equally likely to be one of two conditions, which we are not collectively certain to be, indeed, separate entities. They involve a myriad of symptoms that can present themselves in infinite combinations, making them practically unique for each patient. This is an essentially uncertainty-based system, where causative chains are unknown, associations are barely known, and there is limited longitudinal information: “‘This’ is what I have; I am not sure exactly what “it” is, nor how “it” progresses. I don’t know how “it” interacts with anything, so I can’t say what makes it worse or better. Therefore, I also don’t know how to ask for help with ‘it’”.

Because I don’t know what “it” really is, I am not sure what I am supposed to observe as cues to something important, like the worsening, or possibly a new pathological trend. Is “this” good? Is “this” bad? Will this discreet stabbing pain over my hip bone on the back decrease as I get more mobile in the day, or increase into a roaring excruciating back and hip pain? Is this a day-long thing or will this have a week-long cycle? I don’t know what the cues are, and I don’t know what the things I feel mean.

Uncertainty is inevitably associated with stress. Whether it's benign stress that we meet with well-developed skills, or pretty harmful stress that does not depend only on good coping skills. The strategies to cope with illness uncertainty involve acquiring more information and improving self-regulation and emotional detachment.

I don’t deal well with uncertainty or unpredictability. If associated with health, they make me feel trapped in a prison of ignorance. They are magnified by old age’s unpredictable fluctuations (and by the intrinsic intolerance to uncertainty that grows with age) and by the uncertainty of our economy and social structure. It’s all processed together as “uncertainty”, as obstacles on the roads of decision-making.

I think it’s a situation that gets worse the less we know, and not knowing much about every relevant context in decision-making is not really something we can “cope away with”.

What I described about my training indecision is a tiny slice of uncertainty’s impact on life. But I am far from the exception in terms of decisions involving health/disease uncertainty. At my age, 95% of adults have at least one chronic illness. Half have multiple chronic conditions. Chronic inflammation among older adults is widespread. The majority of those with a disability are not working. Healthcare for chronic conditions is close to non-existent in the US, and that means all these people are facing a variation of what I face, but with a fraction of the information resources that I have. Thoughts on this lead me right into the social reality of American despair, of the statistics of its deaths, and of the darkness of its dominance in the last stage of life.

My limited tools to make up for the loss of control this general uncertainty introduces include keeping logs of everything, hoping to make sense of this mass of data, somehow, and constantly surveying the literature on the topics related to my conditions. I became my own case study, this hybrid of field and experimental research. My friend and fellow coach, André, keeps me accountable and either helps me make sense of what is going on or joins me in my perplexity. Either way, I guess now it’s an open, if not collective project.

Uncertainty sucks less with friends.