Trying To Get Off The Optimism Train

In which optimism turns out to be really hard work but doesn’t have an off switch. I think that like many things from gender to the bitterness of chocolate, optimism and pessimism are places on a scale. If there were a Kinsey scale for optimism/pessimism I would be at the TOTALLY GAY end of it. … Continue reading Trying To Get Off The Optimism Train

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Speaking of Spoons

In which I talk of many things, of shoes and ships and sealing wax and cabbages and kings. No, wait, spoons. Just spoons. A spoon is a simple thing: a small bowl on the end of a handle. But in the last few years the word has come to mean much more than that. It … Continue reading Speaking of Spoons

Living with ME: Boredom

In which I am so bored I want to scream and break things. Content warning for suicidal thoughts. It was a bad morning anyway because I’d had my hair cut the day before, which involves energy draining activities such as going downstairs (and, worse, coming back up them again!) and talking to people (it’s tiring … Continue reading Living with ME: Boredom

The Frightening Decline

It’s not typical for someone to keep getting worse when they have reduced their activity as much as you have. This was the news the OT from the fatigue clinic gave me when I saw him seven weeks ago. It threw me into a spiral of fear and depression which I have yet to emerge … Continue reading The Frightening Decline

Self-Care Is What We Need It To Be

Self-care! Which of us hasn’t been infuriated on stumbling across yet another article advocating bubble baths and walks in nature? Self-care is a big old trend at the moment and that is an excellent thing. It isn’t enough, of course. We also need a societal structure that supports people to care for themselves properly. The … Continue reading Self-Care Is What We Need It To Be

Severe ME Day 2018

Severe ME Day was begun as a way and a time to remember those who have died from ME/CFS. It is held on the 8th of August because that was Sophia Mirza’s birthday: she was one of the first people in the world to have Chronic Fatigue Syndrome listed as the cause of death on … Continue reading Severe ME Day 2018

On The Nurturing Of My Senses

Trigger warning: Self-harm I regard them with fear and loathing, and I avoid them whenever possible. It’s their own fault. If only they’d be nicer to me, I’d be nicer to them, but instead they keep intruding when they’re not wanted and are a constant, grating, irritant. I have a really bad relationship with my … Continue reading On The Nurturing Of My Senses

Yes, People Die From ME/CFS

Content warning: I talk in this post about suicide and assisted dying. The first recorded death from ME/CFS in the UK was that of Sophia Mirza in 2005. Not that long ago, you will notice, and she suffered some pretty bad abuse from the medical profession before it happened. Recently, another family have spoken out about … Continue reading Yes, People Die From ME/CFS

Living With ME: Priorities

A few years ago I met a young woman. She seemed very amiable and we met up a few times after I’d moved to a more northern city. I realised that she was in fact a prat when she made this remark about a person with ME/CFS: “She annoys me because she only makes the … Continue reading Living With ME: Priorities

Living With ME: Loneliness

Loneliness affects many people: people with chronic illnesses, disabled people, old people, poor people. People with ME/CFS, of course, can fit into any and all of these categories, and it’s a huge problem. The Millions Missing campaign highlights it from the other side by campaigning for more funding for the millions of people who are … Continue reading Living With ME: Loneliness