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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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. …

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 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 …

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 …

So… My boob exploded. That was fun.

Take 1 bout of flu (substituting a cold may not work as well) Add 1 weekend on feet running a stand at an expo, Mix in a dash of terrorist attack and fear for Muslim friends. Mix well. Fold in an MMR vaccine and sprinkle with bronchitis. Allow to rest for 5 days, applying heat …

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 …

I’m gonna get my KonMari on.

For about the last 6 to 12 months I've been feeling increasingly frustrated with my life and my space. Being bedridden so much of the time means I lie here staring at the contents of my bedroom. It has slowly dawned in me that my frustration and discomfort at being in my bed is not …

What it’s like to be me, living with ME/CFS

If you’re interested in what it’s like to live with CFS/ME then this might be a useful read. Fair warning though, it is Loooong. This is part of the appeal submission when my Disability Benefit (SLP) application was declined. The full appeal document was over 10,000 words long. I’ve edited it, added bits that I …