ME Awareness Day 2026
ME Awareness Day means…being aware that at 58, I’m probably going to be sick for the rest of my life. This isn’t being negative, it’s an honest assessment that the chances of a cure being found before I shuffle off …
#pwME
Gardening with ME: the art of resting in the garden
You would think having a lovely garden to sit in, you would find me regularly resting there. You would think. However, the one curse of being a gardener, even one with ME, is that after five minutes of sitting there …
Gardening with ME: upon reflection
There is some gardening with ME that you can do in bed. I’m not joking. I do my best thinking about the garden whilst resting in bed. Over winter, I spent time reflecting on the past year, thinking about what …
Gardening with ME: Sweetpeas
It is a truth universally acknowledged, that the more you pick Sweetpeas, the more they will flower. Until you realise that if you use your limited energy frequently picking Sweetpeas, then you won’t have energy to do anything else. Sigh. …
Tramping about: accessing nature
I had plans. I had so many plans. I wanted to visit the gardens of Iran. Soak up the history and culture of Morocco. Travel to the Caucasus on an alpine plant holiday of discovery. I wanted to finally be …
Beach scenes: Barry Island and the beach wheelchair
I don’t recall the last time I walked on a beach. It’s been years, then some more years still. To be fair, we either lived in Oxfordshire or South Yorkshire, which are no where near the beach. But mainly it …
Update 2: Using a heart rate monitor to better manage MECFS (finding my baseline, halting decline)
Um, it’s taken me a bit a time to get around to writing a follow up post to that written in August 2021. Somehow life, moving from South Yorkshire to South Wales, and more life, well, it got in the …
Including disabled people in politics
Updated 18th February 2022 Disabled people are often told we are needed in politics and should be more active, but the people saying this never consider what kind of accommodations might be needed to make it possible for us to …
Update 1: Using a heart rate monitor to better manage MECFS (including HRV)
In mid June, I talked about using a heart rate monitor to better manage MECFS. I thought it might be useful to post an update and let you know how it’s going. And I’m adding information about another useful measurement, …
Using a heart rate monitor to better manage MECFS
A couple of months ago I was asking questions on Mastodon and Twitter for help with finding a heart rate monitor to help me better manage pacing and my MECFS symptoms. The reason for this was that I’d read a …