Friday, 12 May 2017


In the middle of living my happy, busy, joyful life, a monster called Myalgic Encephalomyelitis came and ate me whole.

The M.E. monster stole my work, my home, my income, my social life, my health, my independence, my spontaneity, my possibilities and a big chunk of my future.

I spent years blogging about it here:- M.E. Myself & I Ask You (Joyce's other blog about living with M.E. and Type 1 Diabetes) if you want to know more about my journey.

Today is M.E. Awareness Day worldwide.

Today, millions of people with this devastating, life-changing disease, are uniting under the #MILLIONSMISSING  banner to raise awareness of M.E. To fight the willful misunderstanding, underfunding and neglect patients have suffered for decades, from the medical establishment, the media and government.

For years I pushed through, blaming all my pain, bone-crushing exhaustion, vulnerability to infections, heart arrhythmia, unsteadiness, sickness and cognitive dysfunction on my diabetes. But it wasn't just the Type 1. Autoimmune illnesses love to flock together. M.E. had decided to join the party too, to move into my central nervous system, my immune system, my brain stem, my whole body.

One of my social media posts for M.E. Awareness Day 2015

Nobody knows how all this started. One day, we will. I had M.E. symptoms back as long ago as my teenage years, with periods of boom when I felt fine, and bust, when I was totally unable to function for months on end.

It worsened in my 30s when I was working in South America and contracted giardia, a common M.E. trigger. It worsened every time I crashed and tried to struggle back to work and life. I had severe shingles in my head (not "all in my head") 4 times in 8 years as my body struggled to cope with the onslaught of being attacked mercilessly from within.

Then, in October 2005 I collapsed in the week I had the flu jab. Sometimes over the years, the flu jab has made me very ill, other years, less so - a vaccine lottery, for me! That year, whatever the trigger, from that moment, on a Sunday morning before work, life as I knew it was over, in spite of my best efforts to continue as before. My body, my brain, the me with M.E., would no longer co-operate and in 2007 I had no option but to accept early ill-health retirement and put my life into limbo.

All my GP and the NHS could offer was a dose of CBT & GET (from the now resoundingly discredited PACE trial) which made me and so many others worse. In the end, the occupational therapist forced to administer this torture at one of the government's so-called "Fatigue Clinics," knowing I knew as much as she did about CBT and much more about coping with chronic illness long-term, looked at me and said apologetically: "You really *ARE* ill, aren't you?"

Ten years later, here I am. To put a positive spin on it, I have been worse than I am now, both bedbound and housebound. Even now, though I can occasionally get out into the local countryside or a hospital appointment, this often leaves me so drained and poorly, (with the classic M.E. post-exertional exhaustion) that it takes me days, weeks, or months to recover.

On a better day, I can fill my life with joys, subtly different from, but just as valuable to me as what I treasured before.







I am one of the blessed. Others become bedbound and never see the light of day again. Children. Men. Women. Just as I was often convinced I would not. Without the support of a loved one, my dear mum, there's no question. I wouldn't still be here. Too many are not.

Today I give a huge shout-out to all my fellow #millionsmissing all over the world. Those and their carers strong enough to join physical demonstrations to raise awareness, hope, understanding, funds (including the excellent biomedical research championed by INVEST IN M.E.), resources, research and, one day, a cure. A shout-out too, to all those who can't be there with their broken bodies, but who, like me, stand shoulder to shoulder in spirit with the rest from our homes and our beds.

The monster can't keep us down. It tries its hardest, though, every day, in somebody's bedroom, darkened, unseen, mocked, forgotten.

There are #millionsmissing - but finally the lost are finding a voice.

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