In March 2020 the scientist of the ME community predicted that Covid-19 would cause ME, a lifelong post-viral fatiguing illness, in a portion of those who recovered from infection. They estimated roughly 5-10%, based on SARS1, would struggle to return to pre-infection energy levels, and that many of these would never recover. It didn't take … Continue reading I have Hipster Long Covid (I was doing it before it was cool), here’s my advice on how to avoid becoming like me
Am I depressed or flaring? I'm tired and can't get the energy to do anything. I feel sick. I have a headache. My stomach hurts. My mood is low and I'm having panic attacks and anxiety. I can't get to sleep but when I do I can't wake up. I want to cry but can't. … Continue reading Heads it wins, tails I lose
There is a lot of debate around the place about the naming of this condition from which I suffer and what is should be called. There is general agreement that Chronic Fatigue Syndrome (CFS) is an inappropriate and misleading name. Other names have been suggested by various groups, but there is yet to be an … Continue reading CFS vs ME, or something else entirely, or why names matter.
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