Why would you willingly risk becoming like me?

I'm so baffled by vaccine reluctance, especially in populations old enough to remember polio. Covid causes long term damage and disability in a devastatingly high proportion of the infected. Severe-acute-respiratory-syndrome-Coronavirus-disease-2019, aka SARS-COV-2, AKA Covid-19 attacks the organs, blood vessels, and nerves. It's not just a respiratory infection, it's a systemic disease. We are seeing data …

Beggars CAN be choosers and don’t let them tell you otherwise!

I'm angry. I was feeling miserable about this but now I'm angry. There's a support organisation that provides a variety of different services to people in NZ with ME/CFS, including grocery/meal deliveries, and now a small scale, pilot counselling programme. I have used their services on the past, and found them really lovely. Not this …

With apologies to Billy Shakespeare

To nap, or not to nap, that is the question:Whether 'tis nobler in the mind to sufferThe slings and arrows of staying awake,Or to take Arms against a Sea of fatigue,And by opposing end it: to nap, to sleepsome more; and by a sleep, to say we endthe brain-fog, and the thousand natural painsthat Flesh …

Time to say goodbye

We have to move out of our house. We received notice back in March and have until June 14th (we can leave sooner, if needed). I don't want to go. I love this house. I love the area. I love my room and my bath. I love the view from my bed, and the sunny …

He asked how she was doing, her answer will surprise you.

I went to my ME support group meeting yesterday. I walked in and was greeted by another member: "Hi, how have you been? You look wrecked." "Thanks, I am." It's nice when someone notices.

Under Pressure – finding better ways to monitor my body

This time last year I bought myself a fitness tracker watch with heart rate and blood pressure functions. I haven't compared the bp measure with a properly calibrated one yet, so the actual numbers may well be wrong (I know they're within the right ballpark though), but it is internally consistent, which is all I …

Happy “birthday” to me…

Sunday, 2 October, 2005. I get up around 7.30am and get ready for work. My throat hurts a bit, but I'm otherwise ok. I'd had a busy weekend, going to the physio on Friday for an issue of been having with my neck, then visiting with family (my mum and sister were in town. Mum …

The good news is it won’t* kill you. (*without help)

I want to address something that I've said a few times in the past (Here and here, and I touch on it here, for example) with isn't entirely 100% perfectly accurate. That ME/CFS won't kill you. Aside from the increases in suicide risk, there is a very small chance that with assistance/negligence from medical professionals …

The danger of feeling good

I'm having a good day today. Days like today are dangerous. I woke up groggy but feeling ok. The sun was shining and the weather warming up. I've been sleeping better, making myself stick to a "normalish" day/night cycle. I have also been eating a little better lately, making a conscious effort to undo the …

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 …