Diary Day 118: Standard Letter For MPs Green Paper Work Health and Disability Improving Lives

Here is the link to the documentation: Link to Government Green Papers  At the bottom of this blog post is a standard letter for you to copy and paste and send to either your MP or disability rights organisations.  Here is a link to a Consultation form which asks questions in order for them to […]

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 […]

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 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 42: Permitted Work Claiming ESA or DWP Tripwire?

It was father’s day this Sunday and I spent some time with silver surfer Dad and my sister, HS.  The subject of Permitted Work came up. Permitted Work is a scheme run by the Department for Work and Pensions for people who are claiming Employment and Support Allowance, the UK’s sickness benefit payable to people who […]

Tory Majority Day 39: Type 2 Diabetes and MECFS, Graded Exercise Therapy, On Your Bike?

In September last year a set of routine blood tests carried out by my GP told me something that I literally did not see coming: I was at risk of developing Type 2 Diabetes.  Before ME diagnosis – A OK – blood glucose normal. 2 years in to having ME – this! The blood tests were […]

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 35: CBT Necessary To Aid Claimants With Mental Health Issues? You’re Having A Giraffe..

A while ago – I forget exactly when thanks to brain fog – I read a Tweet from someone in south London saying that in their local job center there’s a team of health professionals who are working with welfare claimants to ‘facilitate them into work.’ I must admit that when I read it, I […]

Tory Majority Day 32: A Game Changer For Affordable And Safe Housing

Anyone who has been following my diary knows I’m struggling with a quadruple-whammy because of my benefits situation, my disability, the unsafe and unhealthy property I rent and the lack of available or affordable housing in London. For those not following the up’s and down’s or are suffering from brain fog and want a recap, here it […]

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 […]