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Wrong place, wrong time, wrong reality

I often ponder the potential evolutionary reasons for ME, and potential advantages it could have. • Maybe it exists simply because it doesn't kill its victims before they can breed, and/or because society evolved to care for the sick and the weak. That's just depressing and boring, so that can't be it. • Or we're … Continue reading Wrong place, wrong time, wrong reality

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Who am I now? Losing your identity to chronic illness

Chronically ill people are often criticised as "making their whole identity about their illness." Whether or not this is true, it's an unfair criticism, because so much of our identity gets stolen when we become sick. When I was healthy and able bodied, and even when I was sick but still working full time, I … Continue reading Who am I now? Losing your identity to chronic illness

I have Hipster Long Covid (I was doing it before it was cool), here’s my advice on how to avoid becoming like me

In March 2020 the scientist of the ME community predicted that Covid-19 would cause ME, a lifelong post-viral fatiguing illness, in a portion of those who recovered from infection. They estimated roughly 5-10%, based on SARS1, would struggle to return to pre-infection energy levels, and that many of these would never recover. It didn't take … Continue reading I have Hipster Long Covid (I was doing it before it was cool), here’s my advice on how to avoid becoming like me

CFS vs ME, or something else entirely, or why names matter.

There is a lot of debate around the place about the naming of this condition from which I suffer and what is should be called. There is general agreement that Chronic Fatigue Syndrome (CFS) is an inappropriate and misleading name. Other names have been suggested by various groups, but there is yet to be an … Continue reading CFS vs ME, or something else entirely, or why names matter.

Mobility parking – it’s not there for your (in)convenience

Today I went to the craft supply shop for sewing machine needles. On arriving, I found a truck parked in the disability parks, no permit displayed. The driver was coming out of a new bed shop that was being set up. I asked him where his permit was... he didn't have one, he was just … Continue reading Mobility parking – it’s not there for your (in)convenience

Reading for pleasure again: thank you, Chris, John, and Arthur.

As a child, I loved reading. I remember my first chapter book, received as a birthday or Christmas gift and read on busses to and from school, The Secret of Nym. I followed it up with Animal Farm, because it was about animals. I remember reserving The Neverending Story at the library and waiting months … Continue reading Reading for pleasure again: thank you, Chris, John, and Arthur.