Tory Majority Day 14: CFSME Dictionary. Payback, Noun. A Doing Too Much Word.

Payback / noun / ˈpeɪbak A symptom associated with the conditions Myalgic Encephalomyelitis / Chronic Fatigue Syndrome / Systemic Exertion Intolerance Disease  A colloquial term describing a range of physical and cognitive symptoms that occur after a patient extends themselves, physically or cognitively, or both, beyond what their body or mind, or both, can cope […]

Tory Majority Day 13: CFSME As A Medical Priority And Getting A Council Home In London

As if being ‘on the sick’ doesn’t make me a enough of a dirty benefit scrounger, I’m also trying to get council housing. My application is based on medical and economic grounds. I’m putting forward evidence to prove to my local council that the conditions I live in are negatively impacting on my health. If it […]

Tory Majority Day 12: Disabled and Stuck, Between Left Wing Sympathy and Right Wing Hard Place

Yes, the mundane but essential task of getting the half price Oyster card was sorted out yesterday. I can hear you cheering loudly from here. Crack open the champagne! Thanks. But that’s not what’s stuck in my mind from Monday. I’m stuck between left wing rock of sympathy and the right wing hard place.  Here’s […]

Tory Majority Day 11: Disability Paperwork, Studying With CFSME, Career Interrupted, CFSME Is Not Depression

Today I need to renew my half price Oyster card.  As mundane as it sounds, no doubt reads and is also to write, getting things ready for today meant I had to bend double behind my sofa / bed and pull out boxes where all my paperwork is hidden. I’ve learned the hard way that […]

Tory Majority Day 10: Brain Fog, Noun, A Thinking Nothing Word

Brain Fog / noun / Brain – fog  \ˈbrān fog fäg\ A cognitive symptom associated with the conditions Myalgic Encephalomyelitis / Chronic Fatigue Syndrome / Systemic Exertion Intolerance Disease  – the absence of mental energy, the sensation of having no thoughts, difficulty in focus, difficulty in concentrating, feeling mentally adrift, untethered, grasping at nothing, inner mental blankness – […]

Tory Majority Day 9: Counselling, Pathways To Healing MECFS, Paying for Treatment, ESA

About a year ago I got to the point where I decided that I needed somewhere to go to work through all the changes that having MECFS has brought to my life.  Hmmm. Beginning to write this, I don’t know how best to explain this without giving the impression that MECFS might be a Psychiatric problem. God, […]

Tory Majority Day 8: Insomnia, Justin Tomlinson. Benefit Sanctions and Victoria Derbyshire

I’ve said it myself: “ME is not only about the tiredness, folks.” I also suffer from insomnia.  I find the insomnia, rather than the sleepiness, one of the hardest ME symptoms to deal with. When it comes around it happens without any warning and is not usually linked to anything obvious that I’ve done or not […]

Tory Majority Day 7: The Mould Patrol At Home, Lunch Visit, Trust The Tory’s Welfare Reforms.

Wednesdays are a different day from the rest of my week because my 75 year old Dad comes to visit me at home. I cook homemade vegetable soup for our lunch – it’s cheap and he likes it – and I listen to him talking about all the things that have happened since last week […]

Tory Majority Day 6: No More Politics Politics Politics, NHS Madness and Oops Brain Fog

Wednesday May 13th I re-read my posts yesterday and am surprised by how much I’m talking about politics. So far this diary been full on politics, politics, politics. I’m a little embarrassed to read my thoughts laid out so bare because it gives the impression that my life and my thoughts and this diary is […]

Tory Majority Day 5: Media Narrative, Welfare Reforms and Housing Benefit London

Tuesday May 12th. ME Awareness Day.  I started watching the news again last night. I thought I detected a slight shift in the media narrative. There was a tone in some reporters’ voices similar to one you would hear from a person pleasantly surprised that their team has *actually* gone ahead and won the cup! I […]