Tory Majority Day 24: Cooking On Benefits and With MECFS. Getting My Food Stash Ready

At the end of this post I said: “I’m now having to consider how I feed myself this week.” I survive on ESA so my budget for food is always tight – I’ve also got that whole thing happening about choosing whether to¬†heat or eat in winter. Sometimes, whether it’s winter or summer at this […]

Tory Majority Day 23: Normality, Choices, Hello, Payback, You Are On Your Way

CFSME is a fluctuating condition. That means that in my case, some days are better than others. Today was a ‘day that was better than others.’ MUCH better than others ūüôā I was trying to explain it to someone I saw today. I explained it as having choices return. I could choose to do more […]

Tory Majority Day 22: ME Association Report And A Conversation About CBT

In the last 24 hours I had a conversation that has changed my outlook on CBT and CFSME. Hard on the heels of that chat, this morning I woke up and found that the ME Association had published a report into patient experiences of GET, CBT and Pacing therapies. I read it. In that report, […]

Tory Majority Day 21: Do I Have CFSME Because I Am A Woman?

Oh those early days of being ill. It might be a surprise for some people reading this but I look back on them now with such a sense of light and fondness. I didn’t understand what I had when I first was ill, so I still had a job, a social life, a boyfriend, a […]

Tory Majority Day 20: The Queen’s Speech – Where’s The 12bn Bullet? On It’s Way.

Today was never going to be a good day. For a start the majority Conservative government was in Parliament delivering the Queen’s Speech and then I was going to have to actually watch it to find out what they have planned for the 12bn welfare cuts. Today was not pleasant but as rocky times are […]

Tory Majority Day 19: Why It’s Not Possible For Me To Work With MECFS

I tried it, working with my disability MECFS that is.¬† In the 6 months leading up to my diagnosis I had a part-time job in the NHS. I’d worked for some years within the public sector as an academic as well as a clinician and a manager. I was doing a lot of teaching. Before […]

Tory Majority Day 18: Reading The Observer Article, Ian Duncan Smith, 12 Bn Welfare Cuts

It was bank holiday Sunday yesterday and I got out of my home to¬†go out for the short walk I’m meant to do daily to maintain my fitness – this is a form of Graded Exercise Therapy and yes, it’s something I’ve been advised to do by the NHS CFSME clinic.¬† The sense of exhaustion¬†that¬†I […]

Tory Majority Day 17: Bank Holiday Socialising With My MECFS Friend, CB.

I have a very good friend who I met because of one thing; she and I both have ME.¬† The universe must have had both of us in mind on the day CB and I met. She’s one of those people who if I’d been in a room and met her when I was 16, […]

Tory Majority Day 15: Draw What MECFS Feels Like-Got Any, I’ll Post Them!

Spotted the deliberate mistake yesterday ‘cos I didn’t. Due to brain fog¬†¬†I miscounted how many posts I’d published, didn’t spot it until last night. So here’s the missing one, Diary Day 15. Drawing ME I get frustrated with how language doesn’t describe how ME feels, something @_kayleighbell talks about in her article for ME Awareness […]

Tory Majority Day 16: Fuel Banks and Fuel Poverty – I Measure My Home And Health In Units Of Electricity.

On Wednesday this article was circulated over Twitter.¬† It’s a story written about a man who is welfare dependent. Due to the welfare benefit cuts under the Coalition government and the bedroom tax, he is using a fuel bank to have enough hot water to heat his home, wash, wash up and clean his clothes. […]