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

I’m Back – And I’m Tired!

In which I ramble about the last three months (nearly). It doesn’t seem like such a long time not to be posting, but it’s been strangely hard to get back into writing here. So in this post I’m not talking about any topic in particular, but just making a summary of what’s been going on … Continue reading I’m Back – And I’m Tired!

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

When You Call Me Strong, Who Do You Think Is Weak?

People tell me I’m strong all the time and it always bothered me in that small squirmy way where you aren't quite sure why you dislike the thing, just that you do. Here, I’ve finally thought my way through the problem and discovered that there are a few reasons I am uncomfortable with being called … Continue reading When You Call Me Strong, Who Do You Think Is Weak?

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

Living With ME: A Bad Day

Reading this back, I see that I mentioned going to the toilet a lot. The reason for this is that it was most of the activity I did on this day! Plus, one of my ME/CFS symptoms is a constant slightly-rough throat, which means I tend to drink a lot. 10.15  I wake up. It … Continue reading Living With ME: A Bad Day