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.
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
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
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
I was having a conversation recently about how isolating ME can be, especially for my severely ill friends, when the person I was speaking to said something that got me pondering: "Social media must have made life so much more connected for people who are unwell. I can't imagine the isolation prior to email, computers … Continue reading Virtual ME sanity