Checkmated by severe illness : ME/CFS

There is a level of boredom that is uncomfortable. There is a level that is distressing. And then there is the kind that comes with severe ME/CFS—where boredom is not just the absence of activity, but the absence of access to your own mind.
Most days, my world is reduced to a bed, darkness, and silence. I spend about 23.5 hours a day lying down. On a typical day, going to the bathroom is an event. On a good day, I might manage a shower. On a rare day, I might walk for ten minutes. Cooking, cleaning, or any sustained activity is effectively impossible.
The physical limitation is only one part. The more severe deprivation is cognitive. At my worst, the brain fog was so extreme that I could not think in any structured way. I could not read, could not follow a line of reasoning, could not even daydream. That last part is difficult to explain: even when completely isolated from external stimulation, the mind usually generates its own content. Mine did not. There was no internal narrative, no images, no thoughts—just a kind of blank, conscious waiting.
That state is not neutral. It is not restful. It is intensely uncomfortable. Time does not pass normally. There is no distraction, no engagement, no sense of progression. It is continuous awareness without content.

More recently, my symptoms have become variable. With the experimental treatment I am trying, different cognitive functions come and go. Some days I can read for up to 40 minutes. Other days I cannot process a single sentence but can visualize images. Often, everything is impaired to the point that forming coherent thoughts is difficult.
During the periods when visualization worked, I discovered something unexpected: chess.
Playing full games was too demanding, so I reduced it to solving simple tactics on paper. Even that required effort. But for the first time in a long time, I could follow a sequence of moves, evaluate positions, and reach conclusions. It was structured thinking. It was progress.
The effect was immediate and disproportionate. Solving even basic problems created a sense of engagement that I had not experienced in months. I could focus on something external, apply reasoning, and reach a correct answer. That loop—problem, analysis, solution—felt almost unreal in contrast to the usual cognitive emptiness.
Objectively, my level is extremely low. I am a beginner with severe cognitive limitations, likely around the lowest end of rating scales. But the level is irrelevant. What matters is that I can think at all.
At my best, I could spend 30 to 60 minutes per day on tactics. That was enough to create a sense of structure and even a small sense of accomplishment. It became the only activity where I could consistently engage my mind.
Then it stopped.
Over the past few days, my ability to visualize has disappeared again. Solving the chess chaptcha(mate in one) that is required to be done to post a blog on lichess was enough for a small headache. In exchange, my language abilities have improved slightly. I can write this(I wrote a chaos of words and sentences and but it through chatGPT) and I can speak to my parents for short periods.
This trade is not neutral.

If I had to choose, I would give up most of my ability to speak in exchange for the ability to think clearly through a position on a chessboard. I do value talking to my parents. The problem is not the interaction itself, but what I am able to bring into it. When the brain fog is severe, I can respond to words, but I cannot process them at depth. I cannot reflect, connect ideas, or form more complex thoughts during or after the conversation. Without that layer of thinking, the exchange becomes shallow and transient. It does not build meaning, insight, or memory in the way a real conversation normally would. So while I still appreciate the contact, much of what makes a conversation meaningful is missing. Talking is passive. Chess is active. It requires reasoning, planning, and sustained attention—things that feel fundamentally tied to being mentally present.
The contrast makes the loss more pronounced. When I could study chess, even at a very low level, I had something to work toward. I could measure improvement, however small. I could occupy my mind with structured problems instead of empty time.
Without that, the boredom returns to its previous form: not just inactivity, but the inability to generate or sustain thought.
The frustration is not only about losing an activity. It is about losing access to a mode of thinking that briefly became available. It showed that engagement is still possible under the right conditions—and then removed it again.
At this point, the expectation is not recovery in a broad sense. It is more specific: I want the return of that narrow window where visualization works well enough to study chess, even in short intervals.
Because in that state, the day is no longer just something to endure. It becomes something that can be used.

This post was heavaly edited with the help of AI.