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 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 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 17: Bank Holiday Socialising With My MECFS Friend, CB.

I have a very good friend who I met because of one thing; she and I both have ME.  The universe must have had both of us in mind on the day CB and I met. She’s one of those people who if I’d been in a room and met her when I was 16, […]

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 […]