Diary Day 106: Boundaries Abt CFSME, GET, Friendship, Learning.

This week’s been ‘one of those weeks.’  It started with a day on Monday that knocked me sideways, or should that be, laid me flat. From early in the morning as I got up to get ready to see my counsellor I could tell something was wrong, really quite different and wrong. My back and head […]

Diary Day 104: Talking About ME Symptoms, Gap in NHS Care, Grief, Cancer, Carer, What An ME Crash Feels Like Post 1

This weekend is an anniversary. It’s the anniversary of 2 years since I went into a steep decline in my functioning and symptoms that people with ME call a ‘crash.’   I went from being a moderate ME patient to a severe ME patient in the space of about a month.  In my case, the […]

Diary Day 101: An Example Of How MECFS Really is. Yes Really.

On Sunday afternoon, my family were visiting. It was the first time they’d seen me since Xmas, which, for a group of relatives who all live in London, and all regularly visit my silver surfer Dad, is an example of how much planning it takes for me to host a social event at my place. Honestly, […]

Tory Majority Day 77: What Works – My Rule Of Thumb For Getting MECFS Symptoms Reigned In

I’m suffering from an increase in MECFS symptoms at the moment but if you follow my diary you’ll have read how it feels pretty much every time I post. There’s never a day that goes past where the unwelcome guest isn’t in my life, so what do I do that makes it possible to manage the symptoms […]

Tory Majority Day 71. September 1st. What does your health look like? Housing, decisions, change.

If you could draw your health, what would it look like?  Strange question, possibly, unintelligible, maybe. But think about it for a moment. What does it look like? Over the last week or so I’ve started to visualize, imagine my health as a separate being from me. She’s my Health-me. This has happened because in […]

Tory Majority Day 64: Chillaxed

Today’s post is coming to you from a floating cloud of relaxation. My fingers are barely making sense of the keyboard and my entire body is saying: “It was sooo good to nod off in the sun.” I’m officially a chilled out puppy, a chillaxed babe and so laid back I should have casters on […]

Tory Majority Day 63: Renting In London on Housing Benefit, Unrentable To Rentable – Have I Found Somewhere To Live?

If I write this down will I jinx it?  Yesterday morning I phoned one of the well known high street estate agents that has been so brilliant this week. I called them first thing because, as I left the viewing of the postage stamp sized studio flat on Thursday, they mentioned that they’d got a […]

Tory Majority Day 53: Rest, Cancer, Being A Spoonie, Pathographical Writing, Real Life Situations and MECFS

I went to and fro about what to write about yesterday, partly because I don’t write about everything in this diary. It’s public and anyone can read it and so there is judicious editing about what goes onto this screen. The judicious editing happens partly because for anyone with ME, taking on board the act of […]

Tory Majority Day 38: MECFS Brain Fog, Cooking On Benefits and Energy Friendly Vegetable Soup

It’s been an energy sapping week with the potential house move and once again, I’m in the last few days of an ESA fortnight as well. I have a grand total of £8.43 in my purse and no money left in my bank account. This unenviable combo of tiredness, distraction and very little money sent me to […]

Tory Majority Day 31: Rest. Noun. An Essential Part Of Coping With CFSME

Rest / noun / [rest] An essential component to coping with CFSME symptoms.  The opposite of rest to someone with CFSME is “activity.” Dictionary.com defines rest as:  refreshing ease or inactivity after exertion or labor: to allow an hour for rest. relief or freedom, especially from anything that wearies, troubles, or disturbs. a period or interval […]