Virtual ME sanity

I was having a conversation recently about how isolating ME can be, especially for my severely ill friends, when the person I was speaking to said something that got me pondering: "Social media must have made life so much more connected for people who are unwell. I can't imagine the isolation prior to email, computers …

August 8 – International Severe ME day and my ME heroes

I'm fortunate enough that my ME is currently only in the 'Moderate' range, meaning I can stand up on my own most of the time. I do sometimes use a walking aide/wheelchair as a way to manage my energy levels and prevent further deterioration, but I can usually stand and walk without assistance. I have …

Spoon theory vs Energy Bucks

I have read many descriptions and metaphors to describe what it's like to live with an energy sapping chronic illness, but I find that none adequately describes what it’s like for me, living with ME/CFS. I have a metaphor that I think fits me and my ME which I wrote about in my epic post of …

Growing around my grief

Yesterday I buried a friend, Lois. Well, I didn't literally bury her, I left that to other more able bodied people, but I was there when it happened. She died on Monday, both suddenly and not. She had cancer; an aggressive form of pancreatic cancer which was only diagnosed, at stage 4, earlier this year. …

Today was a good day, so why am I crying? AKA Show me the money!

Ok, I'm pretty tired, having reached my step limit today, but it's more than that...it's the millions missing, including myself, and our invisibility in the world of medical research. It all comes back to Florence Nightingale. For a few weeks the mere mention of Nightingale's name has been enough to set me off. Last week …

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 …

How to make breakfast with cfs

1) find kitchen. 2) try to convince 3 year old 'flatmate' to help. She isn't interested today. You'll have to go it alone! 3) fill kettle with water. 4) put kettle on stove. 5) stare at the knobs on the stove while trying to work out which hob you need to turn in. 6) have …

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 …

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 …