I Hate Having Carers: A Rant

It’s been a bad week. On Tuesday I had to bring up issues with two of my carers, something which inevitably produces fun anxiety symptoms like tummy problems, pins and needles in my hands, constant rocking in an attempt to self-soothe, and an inability to rest. It’s so frustrating. These are not big issues, yet … Continue reading I Hate Having Carers: A Rant

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

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

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

Living With ME: Despair

Life has been hard recently. It’s hard to say how long for, really. At the outside, I could say life has been hard since I was about ten and discovered the fickleness of friendship for the first time. It’s never been the same since. But, for the purposes of today, the last few months have … Continue reading Living With ME: Despair

Walking Away From My Wellness

Before I get to the meat of this, let me celebrate this historic day by saying CONGRATULATIONS IRELAND! You beautiful, wonderful, brilliant people. Thank you for voting to allow women and other pregnant people to make their own choices about their own bodies. Thank you for voting for people not to be forced to travel … Continue reading Walking Away From My Wellness