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 …

Advertisement

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. …

Why would you willingly risk becoming like me?

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 …

The good news is it won’t* kill you. (*without help)

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 …

There are many ways to say “I love you…”

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 …

Don’t fight the quicksand

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 …

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 …