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 […]

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 82: Renting on Housing Benefit In London, The Flat Is Secured, A Welcomed Break Beforehand.

” I hope you don’t mind me saying this, but you’d have never get better unless you moved on from your old flat, Lindy,” said CB, my friend who also has CFSME.  “It’s OK to say that, I really do know how true that is,” came my reply. She and I were sitting outside in […]

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 57: The Stress Tornado Passing, Payback, Sleep, Light Appears

How long has life felt like this? Since June, when I started the ball rolling by asking my dodgy landlord to move. It’s been weeks at a much, far higher level of activity that I’ve experienced since the long-ago, beginning months of holding down a job with a new diagnosis of MECFS. The last weeks […]

Tory Majority Day 56: Eviction For Repairs, Lettings Agents Reaction To The Housing Benefit Question

Yesterday I wrote about how a series of circumstances had left me with one option: to contact my dodgy landlord and tell him I wasn’t moving after all. Good mental health and self care I did hang  over my email and phone all day on Tuesday waiting for an answer, yes, but I didn’t get […]

Tory Majority Day 55: Renting On Housing Benefit London. House Move, Not Going Ahead.

I should have known. Last week I was on the phone to my current (dodgy) landlord. It was the first time he’d been in touch with me directly since the decision was made to press the big red button and ask them to re-house me. While we were talking I had a sense of there […]

Tory Majority Day 50: Osbourne’s Emergency Budget – Reflect and Regroup The Protest Continues

George Osbourne’s emergency budget was long feared by myself and many, many people who are reliant on welfare benefits to survive a long term illness or disability.  I cannot overstate the impact mentally and emotionally on me during the wait to find out if my life and health will get significantly worse under the new Tory […]

Tory Majority Day 47: Leaked Document About Tory Cuts – Housing Benefit – How More Stressful Can Life Get?

I’m feeling very stressed at the moment and this diary is going by the wayside. Kindly, I think this is what people call having not enough spoons for writing. S.T.R.E.S.S.E.D  O.U.T  That’s true, it is the case I don’t have a lot of spoons in my mental space in my scrambled, stressed out head and […]