Today I went to the craft supply shop for sewing machine needles. On arriving, I found a truck parked in the disability parks, no permit displayed. The driver was coming out of a new bed shop that was being set up. I asked him where his permit was... he didn't have one, he was just … Continue reading Mobility parking – it’s not there for your (in)convenience
I woke up craving a sweet, syrupy raspberry flavour with a very particular mouthfeel and sort of tingling on the lips... the liquid paracetamol I used to have as a child. I guess that means my body is hurting. I've been doing so well lately, my covid vaccination giving me a good 8 weeks of … Continue reading Not a good day
As a child, I loved reading. I remember my first chapter book, received as a birthday or Christmas gift and read on busses to and from school, The Secret of Nym. I followed it up with Animal Farm, because it was about animals. I remember reserving The Neverending Story at the library and waiting months … Continue reading Reading for pleasure again: thank you, Chris, John, and Arthur.
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 … Continue reading Why would you willingly risk becoming like me?
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 … Continue reading Beggars CAN be choosers and don’t let them tell you otherwise!
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 … Continue reading With apologies to Billy Shakespeare
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 … Continue reading Time to say goodbye
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.
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 … Continue reading Under Pressure – finding better ways to monitor my body
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 … Continue reading Happy “birthday” to me…