Diary Day 114: How To Have A Life and CFSME – A Spoonie’s Progress

It’s been a couple of months since I last blogged and that’s because I’ve been grasping the nettle of life!  It’s almost my 5 year anniversary of being diagnosed with CFSME. To some that’s a newbie, to me it represents 5 of the hardest years I’ve ever been through, period. But I’m 5 years into […]

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 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 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 […]

Diary Day 96: On Mirtazapine That Helps My CFSME, Plus SSRI Antidepressants and Amitriptyline

So, yesterday I blogged about  how I’m taking control of the things I know affect my ME symptoms in an attempt to gain more quality of life. I signed off saying that I would be more silent here – on the blog front-  in order to finish other writing I’m doing. Famous last words! It’s me, […]

Diary Day 93: Having A Nasty Winter Cold Makes Me Look Back On Journey With MECFS

It was inevitable: it’s winter, I am running central heating for the first time in 2 years and I’ve just been through a house move, which for someone without ME would be stressful, but for someone with CFSME is doubley so. Yup, I’ve got a nasty horrible cold. My nose has been blown constantly since […]

Tory Majority Day 84: Why I Don’t Pick Up The Phone – MECFS and Noise Sensitivity or Hyperacusis

Yesterday my dodgy ex-landlord accused me of not picking up the phone when he called.  The day before, The Telegraph had published an article about GET and CBT, the UK NHS treatments for CFSME. I was vocal over Twitter about the bad news the publication of this article meant for the ME community. Yesterday The Telegraph […]

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 […]