Tips, tricks, and life hacks for living with ME/CFS

I did a talk for my local support group. Here's a video of it. CW: discussion of suicide risk towards the end of the video. There may be other sensitive topics too, but I don't remember what I covered at the moment. I did a talk on tips, tricks, and life hacks for people with …

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I have Hipster Long Covid (I was doing it before it was cool), here’s my advice on how to avoid becoming like me

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 …

Heads it wins, tails I lose

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. …

Mobility parking – it’s not there for your (in)convenience

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 …

He asked how she was doing, her answer will surprise you.

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.

The danger of feeling good

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 …

Artsing it Old Skool

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 …

Feeling pleased with myself

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 …

I want my life back.

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 …

How Mari Kondo’s system helped me grieve the life I lost

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 …