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 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 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…”
When I was a kid I thought quicksand was going to be a much bigger problem.* Weirdly, as inaccurate as the movie depictions were of quicksand, they make an excellent analogy for activity and ME. TV and movies taught me that if I fall into quicksand, the worst thing I could do is struggle, and … Continue reading Don’t fight the quicksand
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.
I've seen a lot of criticisms of the Konmari method of decluttering your life. Most of the criticisms I've read are either based on the idea that it's supposed to be one size fits all, that it suggests that everyone should be decluttering and living a minimalist lifestyle, or that throwing stuff away is bad … Continue reading How Mari Kondo’s system helped me grieve the life I lost
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'm fortunate enough that my ME is currently only in the 'Moderate' range, meaning I can stand up on my own most of the time. I do sometimes use a walking aide/wheelchair as a way to manage my energy levels and prevent further deterioration, but I can usually stand and walk without assistance. I have … Continue reading August 8 – International Severe ME day and my ME heroes