Diary Day 103: Keep Writing, Do I Know Someone With Undiagnosed ME, Language Is Our Barrier, Canary In The Coalmine.

It’s been a while, again, since I’ve written. It seems these days that every day that goes past there’s some new news that affects me, you, our community. Originally this week I wanted to sit down and write about how difficult I find it explaining to anyone what ME is actually like. I mean, words, […]

Tory Majority Day 79: CFSME and Applying For DLA and PIP – Seeking Advice

2 years ago I applied for Disability Living Allowance. I had help – my then disability rights and welfare support worker, the “First Julie”, was exemplary in taking me through the forms, guiding me to what evidence to collate, how to fill it out and what do to to appeal. She lost her job before […]

Tory Majority Day 50: Osbourne’s Emergency Budget – Reflect and Regroup The Protest Continues

George Osbourne’s emergency budget was long feared by myself and many, many people who are reliant on welfare benefits to survive a long term illness or disability.  I cannot overstate the impact mentally and emotionally on me during the wait to find out if my life and health will get significantly worse under the new Tory […]

Tory Majority Day 36: What Julie The Disability Rights Worker Asked In My Housing Assessment

It appears that some of you who read my diary are particularly interested in the situation with my housing.  Since my at-home assessment with Julie, my new disability rights worker, on Tuesday this week I haven’t written more about it. This was intentional because I was processing a lot of what was said and I […]

Tory Majority Day 34: The Cuts, The Cuts, The 12bn Welfare Cuts…Civil Servants, Make That Call.

The look of buoyant glee on George Osbourne’s face these days resembles a teenager finding out what happens when he puts his hands down his pants.  The country has become Osbourne’s, again and again,  riven by the clear Tory message that the economy must run in surplus to be healthy and competitive. Even a law will […]

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 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. […]

Tory Majority Day 11: Disability Paperwork, Studying With CFSME, Career Interrupted, CFSME Is Not Depression

Today I need to renew my half price Oyster card.  As mundane as it sounds, no doubt reads and is also to write, getting things ready for today meant I had to bend double behind my sofa / bed and pull out boxes where all my paperwork is hidden. I’ve learned the hard way that […]

Tory Majority Day 9: Counselling, Pathways To Healing MECFS, Paying for Treatment, ESA

About a year ago I got to the point where I decided that I needed somewhere to go to work through all the changes that having MECFS has brought to my life.  Hmmm. Beginning to write this, I don’t know how best to explain this without giving the impression that MECFS might be a Psychiatric problem. God, […]

The Basics – The Conservative Majority And Disabled Life In The UK

Saturday May 9th: Starting this project Let’s start with a few questions: Who are you?  I’m a single woman in her 40s. I  live in London. The part of London I live in is a bright royal blue.  So is a lot of the rest of Britain since the General Election of 2 days ago confirmed […]