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 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 92: CFSME and Finances. About Housing Benefit – Entitlement, ESA, Something To Help You If You Are In The Same Situation.

I’ve moved house 3, nope, 4 times since I’ve had MECFS and been too unwell to work.  All of those house moves have happened as a direct result of not pulling in a salary that covered my London rent on the flat I was living in when I went from being on Statutory Sick Pay […]

Diary Day 91: In My New Home, Housing Benefit, Patient Group Direction Flu Jab, Telling Pharmacist What MECFS Is

….and hello December!  It’s more like the end of February down here at the moment, the sun is shining in the way it does when the season is changing from winter to Spring and you feel that warmth is coming. Maybe it’s also my good mood warming me up because I’m firmly ensconced in my […]

Tory Majority Day 46: Heatwave & Inner Temperature Problems In People With MECFS

Yesterday was the hottest July day on record. Many people with ME or CFS will have suffered acutely. This is because our inner temperature controls are broken, like a thermostat that has gone on the blink. I have to have hot weather or a hot environment to feel well and since it’s become summer my […]

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 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 🙂 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 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 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 […]