If a person with Myalgic Encephalopathy (ME) says “I’m tired”, it’s not the kind of tired where you go to bed, sleep through the night, and wake up feeling better the next day. Unfortunately.
The ‘tiredness’ of a pwME (person with ME) is usually code for “I’m experiencing post-exertional malaise” (also known as post-exertional neuroimmune exhaustion). The patient will often not have the energy to explain this, however.
So if we say “I’m tired”, what does that look like?
It varies between individuals, but may include any and all of the following: headaches, increased sense of pressure within the skull, cognitive difficulties (brain fog), light and noise sensitivity, flu-like aches and pains (in the limbs, joints, neck, spine, back, chest, etc.), heart palpitations, insomnia, neuromuscular symptoms, gait abnormalities, orthostatic intolerance, nausea, etc.
Not every pwME will experience every symptom, while some may experience all of these, and more, with varying degrees of severity.
So you see, it’s much easier for pwME to simply say “I’m tired”, when actually, our bodies may feel like they’re imploding. At that time, we just need the space to rest, without any expectations or demands made on our already-depleted energy reserves.
I’m really looking forward to seeing the Unrest film about this condition, although personally, it will be difficult to watch. It will show some of the most severely-affected patients in the world—and that’s not me—I’m probably moderate at the moment. This documentary will shed light on the lives of the millions missing.