M.E, Politics

Mini-Roll: Social noise and evil genius

Last week and the weekend held two big events for me: M.E. Awareness Week and Eurovision. For the former, I had written a fictional story about living with what is now firmly moderate M.E. I also waded back in to the increasingly scummy waters of the bird site where a lot of the M.E. community still continue to valiantly raise awareness and lovingly share experiences and treatments doing their best to avoid the constant stream of trolls and shitposters.  (Think beautiful sea creatures choking on the raw sewage pumped into the sea by the billionaire class). And I am still there now, off the coast of the social media equivalent of Bognor Regis trying not to get poisoned by the utter bilge floating around my feed, wondering how long I can stomach this before I have to get out again.

The latter, the gloriously preposterous Eurovision, was an attempt at having something called a “social life” with some friends who live nearby. I got dressed up as France (weirdly had a beret lying around, as you do) and spent the night watching the entire thing laid down on someone else’s sofa. With cake.

I thought I had been careful enough to avoid the worst of PEM, but I had forgot something I am now much more susceptible to: noise exertion.

This is something I experience when there are many different sources of noise at once. It could be a TV on, people talking and having different conversations, others on devices with the sound up at the same time – everything, everywhere, all at once. It’s as if I become unable to integrate these sounds and try to process them each individually, and then when each stimuli hits me its like tiny, white-hot needles pricking my brain in rapid succession. At this point I have no choice but to retreat to silence.

Come Monday and inevitable PEM, I found myself unable to even tolerate the noise of the birds outside and the cars along the main road at the end of the street and had to reach for my noise-cancelling headphones. It has passed now but a new learning for me especially in this new more intense form of M.E. I now have to figure out how to navigate events with friends even when I am flat out on a sofa so the following PEM doesn’t try to kill me for a week (or more) after.

I don’t know whether to be impressed or disturbed by this disease which after thirty-three years is still surprising me with its insidious ability to infiltrate and disrupt every system in my body. Maybe there is a word out there, possibly in German, that describes a state of being both admiring and terrified at the same time. Either way, it’s an evil genius.

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