Diary Day 107: Research Needed, MECFS Is A Spectrum Disorder, Energy Finite Though?

Yesterday I blogged about meeting a new friend for a cuppa.  While we were talking she talked about the in’s and out’s of having a child who is Autistic. Then we talked about the in’s and out’s of having CFSME. It’s the first time I’ve had to explain my experience of CFSME with someone who […]

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 105: An Open Letter To London Mayoral Candidates About The Housing Crisis

Dear Mayoral Candidate, This letter is to set out what I see are the failings in policy that I am looking to you to address, in order for me to decide on who I vote for in the London Mayoral Elections. For many years I’ve been on the receiving end of the housing crisis in […]

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 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, […]

Diary Day 103: An Open letter To Stephen Crabb – I’m Disabled According To ESA But Not Entitled According To DLA and PIP

An open letter to Stephen Crabb… With the shock resignation of IDS this weekend and all the spin that’s happened I think it’s important to set out my experience of Employment and Support Allowance, applying for the old benefit for Disabled People called DLA and my decision NOT to apply for the new benefit for […]

Diary Day 102: The Care Plan For CFSME Patients, What, No Prognosis?

It’s never happened. What? I hear you ask. Oh, being told what I can expect from this illness, my illness, CFSME. What do you mean? I’ve never been told by anyone I’ve seen in the medical profession, including GPs, Clinical Psychologists, Occupational Therapists, Nurses or Physiotherapists – i.e. all the people I’ve seen for CFSME […]

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, […]

Diary Day 100: Reading Postive Press About The MECFS PACE Trial Upsets Me Again

I’ve been focussing my attention on other things recently – well, focussing what attention I have towards other things recently – I should say. Occasionally though, something has popped up in my timeline through stories that are circulating in the news, or via the ME charities and they pull my attention back towards CFSME and […]