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. …

Time to say goodbye

We have to move out of our house. We received notice back in March and have until June 14th (we can leave sooner, if needed). I don't want to go. I love this house. I love the area. I love my room and my bath. I love the view from my bed, and the sunny …

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 …

Look at these overflowing cupboards… I have nothing to wear/eat, I tell you, absolutely nothing!

I really hate menu planning and eating on said plan. I can see the benefits, but I have never been a fan. When I was younger, and on the weight watchers points system I never used their weekly menus (although I liked some of their recipes), preferring to stick with my natural "what do I …

Spoon theory vs Energy Bucks

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 …

Bujo isn’t just for soccer mums

For a while now I've been looking for ways to track my symptoms and triggers to try to better manage my illness. I've tried journals and apps and activity trackers but I always find that I either find it too hard to record everything or it becomes difficult to analyze my data to find any …