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…
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 … Continue reading The good news is it won’t* kill you. (*without help)
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 … Continue reading The danger of feeling good
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.
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 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.
I haven't posted in a while. It's been a weird couple of months, and I just haven't had the brain space to form a coherent sentence. I'm not sure I have a coherent post to write today, but I want to address a couple of things - covid and ME/CFS (triggers, the future, and my … Continue reading Covid-19 update
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
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)