Would you rather…

I have a question for you to ponder. How much quality of life are you willing to trade to get through the mundane tasks required in your life and home? Would you be willing to give up your entire weekend's socialising and activity because you vacuumed the living room floor on Thursday? Would you be …

If time is money, my time is made of platinum

To someone who isn't privy to the details of my daily activities, it might look like I do nothing all day. It may even seem like I have more time available than someone who works full time. While I do seem to have a lot of free time, it's not as simple as that. Managing …

It’s not just being tired all the time: Post Exertional Malaise, the defining, hallmark symptom of ME/CFS

I recently joined redit and noticed that PEM is poorly understood as a concept, even within the chronic illness world. So here is some clarification. PEM is unique to ME/CFS. It's the defining characteristic that distinguishes it from other chronic illnesses. What it is not Malaise isn't tiredness, it's illness, lack of wellbeing, being sick …

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 …

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. …

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 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 …

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 …

I’m out of lockdown, so now you can buy me a coffee.

While the rest of the world is seeing continued growth of COVID-19 cases, I'm safe in my bubble in the South Pacific. New Zealand spent 5 weeks in what appears to be one of the strictest lockdowns worldwide, a few more at what seems to be the most common version of lockdown, then 2 weeks …