“Sail on silver girl*, sail on by, your time has come to shine, all your dreams are on their way…”

Did anyone else get to witness the amazing auroras? I love how they're (weather and light pollution permitting) visible almost everywhere in the world. The Aurora Australis is really important to me. The first time I saw it, I didn't know what it was and it was entirely by accident. It was 31 March, 2001, …

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 …

Being informed isn’t always helpful.

I think it might be a good time to remind people that if you find that the news and world events stress you out or trigger your anxiety, you can turn it off, stop watching, reading, or following and ignore it.*If following what's going on in the world is harmful to you, then stop following …

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. …

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.