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 …

Kicking it old school: Payback is a b***h

One of the major difficulties with managing ME, is the way our bodies deal with any form of stress. It can sometimes be hard to predict how much Post Exertional Malaise (PEM) will knock us out. For me, my symptoms are usually roughly predictable as the symptoms on day 3 will equate to the symptoms …

Follow up on the bujo

Earlier this year I started tracking my symptoms, triggers, and activity in a simple Bullet Journal. After about a month of tracking I decided to have a look for patterns. I took my raw data and entered it all into an MS Excel Spreadsheet. Next, I added up the total values of the groups and …

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 …