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 […]

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 76: The Realisation Of The Limitations Of Having MECFS

It’s become obvious again: that this condition, this illness, this disability steals your life, your health and your choices. I’ve been having obvious spikes in symptoms over the last month. It’s not that I was well before the last month, honestly I wasn’t, but today I realised that before pressing the big red button to […]

Tory Majority Day 74: I Feel Like 7 Sacks Of Sh*te, Post Exertional Malaise and MECFS

I.feel.So.Ill. I’ve got that sea-sick feeling in my head and stomach. My balance is off, as if an earthquake is happening and I can’t get my feet firmly on the rolling ground. My head is pounding and throbbing in time with the rolling ground. I started sneezing this morning. I can feel tickling in my throat, […]

Tory Majority Day 54: Crash, Payback, Reason For The Gap In Writing, Thanks Tommy Walsh

I should have seen it coming – a crash, that is. Rather unsurprisingly after all the events of the last few weeks I had a crash which started last Thursday afternoon. For anyone reading who isn’t a spoonie or doesn’t know what a crash is, it’s a term that is used by people who have […]

Tory Majority Day 51: For Anyone Who Wants To Know What MECFS Is

Even when you have an illness and know it’s intricacies, it’s challenges, how it feels, how it affects your life, how it steals you from yourself and your loved ones, how much it has destroyed you and how it rips you from your life, reminding yourself how it can be for other people is important. […]

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 43: MECFS and High Hemoglobin Can Anyone Explain?

The crook of my left arm is filled with holes from the blood tests I’ve had done in the last week.  My weeks used to be punctuated by weekends and working weeks, weekend, week, weekend, week. Since last September they’ve been punctuated with diets and blood tests. Diet, blood test. Diet, blood test. I saw […]

Tory Majority Day 41 Why Would Having MECFS Affect Your Emotional Brain?

I really like puzzles. I particularly like puzzles that are about the human mind, behavior and health. That’s one of the reasons why I studied Psychology.  Having ME has been exactly the same as it is for anyone having ME on an hour by hour basis. Filled with pain, sickness, exhaustion and the rest. However when […]