Hoopoe
Senior Member (Voting Rights)
In many articles, ME/CFS is described as being characterized by debilitating or extreme fatigue. I don't recognize myself in this description. What about you? How would you describe the illness to strangers?
I've been wondering lately how much these descriptions contribute to misunderstanding and stigma.
I do suffer from chronic fatigue, but in a rested state it is mild, so calling it debilitating or extreme seems misleading. It is also not merely fatigue, there's a constant sensation of feeling mildly unwell. If these sensations remained like this, I could push through, but they get increasingly worse with ordinary activities of daily living and soon a point is reached where it becomes painful to continue and performance at the task is degraded (sometimes beyond the point where it makes sense to continue). So there is a certain dose of exertion that is tolerated.
Sometimes I'll also get carried away by enthusiasm or good feelings that mask the underlying fatigue malaise, and do too much. I never feel so unwell that I couldn't push myself further but it becomes stressful, painful, unpleasant that doing so feels like an act of self-harm. And I know that if I push too much, the next day I will wake up feeling unwell right away, with much less or no tolerated dose of activity (and potentially even worse than on the previous day). Sometimes I want to do something despite knowing it would trigger milder PEM. But I never intentionally repeat activities that cause more marked PEM because it's never worth it.
So my illness is not a state of "extreme fatigue" unrelated to activity. It's a balance act between activity and rest encompassing the previous days and the next days, a compromise between what I can tollerate and what I want and need to do. It's a game of optimizing my sustainable performance, not an inability to deliver peak performance or a state of being crushed by extreme fatigue.
I've been wondering lately how much these descriptions contribute to misunderstanding and stigma.
I do suffer from chronic fatigue, but in a rested state it is mild, so calling it debilitating or extreme seems misleading. It is also not merely fatigue, there's a constant sensation of feeling mildly unwell. If these sensations remained like this, I could push through, but they get increasingly worse with ordinary activities of daily living and soon a point is reached where it becomes painful to continue and performance at the task is degraded (sometimes beyond the point where it makes sense to continue). So there is a certain dose of exertion that is tolerated.
Sometimes I'll also get carried away by enthusiasm or good feelings that mask the underlying fatigue malaise, and do too much. I never feel so unwell that I couldn't push myself further but it becomes stressful, painful, unpleasant that doing so feels like an act of self-harm. And I know that if I push too much, the next day I will wake up feeling unwell right away, with much less or no tolerated dose of activity (and potentially even worse than on the previous day). Sometimes I want to do something despite knowing it would trigger milder PEM. But I never intentionally repeat activities that cause more marked PEM because it's never worth it.
So my illness is not a state of "extreme fatigue" unrelated to activity. It's a balance act between activity and rest encompassing the previous days and the next days, a compromise between what I can tollerate and what I want and need to do. It's a game of optimizing my sustainable performance, not an inability to deliver peak performance or a state of being crushed by extreme fatigue.
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