Blog

I’m out of lockdown, so now you can buy me a coffee.

While the rest of the world is seeing continued growth of COVID-19 cases, I'm safe in my bubble in the South Pacific. New Zealand spent 5 weeks in what appears to be one of the strictest lockdowns worldwide, a few more at what seems to be the most common version of lockdown, then 2 weeks … Continue reading I’m out of lockdown, so now you can buy me a coffee.

There are many ways to say “I love you…”

I am lying in bed writing this, listening to a documentary about Fred Rogers. He's speaking to the camera, asking his audience to spend 1 minute thinking about someone who has helped us in some way, to be the person we are today, someone who has loved us and we have loved back. I could … Continue reading There are many ways to say “I love you…”

I lost all my friends when I got ME/CFS … except for the 300-odd who stuck around.

I keep seeing posts on social media from other people with ME/CFS talking about how this illness stole their friends. For most if us, not being able to go out to socialise means we lose our friends when we get sick, but I have had a very different experience. In February 2000, my friend Charlene … Continue reading I lost all my friends when I got ME/CFS … except for the 300-odd who stuck around.

There’s a hole in my bucket, dear Liza, dear Liza: failures of mobility aides to give independence

I went to an accessibility expo today. It was a bunch of companies promoting mobility aides and other accessibility and disability related equipment and services. While I was there I started pondering something that keeps coming up when I look at accessibility generally, anId for mobility aides for myself... It's like the old woman who … Continue reading There’s a hole in my bucket, dear Liza, dear Liza: failures of mobility aides to give independence

So no-one ever told you life was gonna ME this way (clap clap clap clap)

I saw the doctor today, for routine paperwork mostly. My regular doctor wasn't available so I saw a locum. Seeing someone new really highlighted for me some major failings in the way ME is handled by the medical industry/community/whatever you want to call it, in NZ and quite possibly the world. Today I asked for … Continue reading So no-one ever told you life was gonna ME this way (clap clap clap clap)

What makes ME special? PEM and living on the interest of energetic savings.

I get a lot of people asking me if their fatigue symptoms might be ME/CFS. Some I think yes, others no. How do I know? There are a lot of conditions that cause similar symptoms at the time of activity (including idiopathic CFS), like shakiness, nausea, irritability, pain, neurological problems etc, and many have delayed … Continue reading What makes ME special? PEM and living on the interest of energetic savings.