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 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
My husband was performing some music at our former school's spring fair. I knew I'd need to find something sedentary to entertain myself if the activity got to be too much, so I took my sketch kit... sure enough, I started to wilt. We made our circuit of the stalls in fits and starts before … Continue reading Artsing it Old Skool
I'm feeling almost "normal" today. The sun is shining, I got up early (for me) and stayed vertical for hours. I socialised, I helped move a wardrobe, I did laundry. I went out to buy gas for the bbq. I cooked dinner and cleaned up. I have to remind myself to be careful today because … Continue reading Feeling pleased with myself
Feeling low. I know my vit D dose is due tomorrow, so some of it will definitely relate to that. So tired. So anxious... Sad... Scared... Tired... Frustrated... Sick. Everything hurts. I can feel almost normal after sufficient rest, but doing something as little as sitting up and eating puts me back into ME mode … Continue reading I want my life back.
One of the major difficulties with managing ME, is the way our bodies deal with any form of stress. It can sometimes be hard to predict how much Post Exertional Malaise (PEM) will knock us out. For me, my symptoms are usually roughly predictable as the symptoms on day 3 will equate to the symptoms … Continue reading Kicking it old school: Payback is a b***h
Like yesterday, today was a beautiful spring day with glorious sunshine, very little wind, not too hot or too cold, and not a cloud in the sky. The last week has had a lot of those, so I'm making the most if it while I can... read: totally overdoing it while I feel ok. We … Continue reading Adding life content: happy father’s day
I have read many descriptions and metaphors to describe what it's like to live with an energy sapping chronic illness, but I find that none adequately describes what it’s like for me, living with ME/CFS. I have a metaphor that I think fits me and my ME which I wrote about in my epic post of … Continue reading Spoon theory vs Energy Bucks