It should be easy but it's not. I’ve got other things to write about but this has been bugging me. Why can’t I just ask for stuff? On the face of it it’s simple, but really it isn’t. It’s so complicated that often it just becomes impossible. It’s been a problem with me for, like, … Continue reading Why Can’t I Just Ask For Stuff?
Tag: Chronic Fatigue Syndrome
My Stairlift: Delight and Disappointment
In which I get a stairlift and while it’s better than having no stairlift it isn’t ideal and is a good reminder of how disabled people are so often forced to accept second best. This stairlift has turned into rather a saga. First the delivery lorry broke down and the provider decided it was reasonable … Continue reading My Stairlift: Delight and Disappointment
Living With ME: a video
In which I make a video for the first time and talk a little bit about how it feels, with really bad visual and audio (sorry). Also sorry about the lack of subtitles, it seemed really complicated to add them and I'm so tired. There is a transcript below though. https://youtu.be/Z2aoW6NV2tg Transcript 00:00 … Continue reading Living With ME: a video
Five Times Telling Stories Saved My Life
…and how reading them saves my life every single day. If this sounds like hyperbole, it’s not, or only slightly. At the moment I pretty much live on the Coping Precipice and story is one of the things that stops me from tumbling right over. I want to take a moment to define what I … Continue reading Five Times Telling Stories Saved My Life
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
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
