#MILLIONSMISSING FROM THEIR LIVES WITH M.E (M.E. AWARENESS DAY 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.

Writing.

Researching.

Photography.

Reading.

Dog-sitting.

Birdwatching.

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.

SO FAR UNDER

SO FAR UNDER

So far under I can't swim back to the surface.

Was I ever up there? Stark in the sunshine?

Shifting ponder mouths me down, floors me.

Somewhere Moon is plucking up tides,

Distorting the equator,

Puckering cliffs,

Frothing rock-pools with crisps of dead kelp.

My ribs ache from the kiss of a flame-tongued chimera,

Thump of pantechnicon push in the seething dark

Breaking me utterly, no tracks to trace retreat.

I should be psalming howls and how longs

Yet I banter and jive from that place called normal

Bobbing my head with quotidian nods

Catching crabs in the slipstream undertow

Sucking me down askance

So cushioned and carried

You need never know.

2017 - COMING READY OR NOT!

Sunset, South Yorkshire (all words and images author's own)

We don't have to search very hard for reminders of why 2016 has more than its fair share of reasons to be lamented loudly and then forgotten. Nightmare politics and propaganda, media meltdowns, financial uncertainty, deaths of a golden host of celebrity friends we thought we knew like family, unfathomable tragedies, war and hatred we children of the sixties once dreamed the world would be too wise and too compassionate for by now.

Sometimes just checking in on social media, letting our eyes scan a newspaper or fix on current affairs on the screen, can trigger a tailspin into hopelessness, cynicism, bitterness, shrugged shoulders, hardened hearts.

Coral and apricot skies

Today I decided. Time to focus on things I might have missed if I hadn't lived through this rollercoaster year. Time to allow myself to be thankful. Thankfulness washes world-weary shredded nerves like a gentle spa of healing for the heart.

Thankfulness doesn't mean you're suddenly Pollyanna. Gratitude doesn't cocoon you from empathy with those suffering or excuse you from giving a damn. But it can help you find your footing on the slimiest slope. It can remind you of the motive that coaxes you to get up for another day.

Spot the pigeon

Here are my treasures gleaned and gathered from 2016:

-taking the plunge of going gluten-free, dairy-free, nightshade-free to try and give my body with its tortured neuroimmune system a chance to heal itself. Gradually glimpsing a life beyond the constant fog of exhaustion, pain and sickness. Doesn't mean I'm miraculously cured of a lifelong knot of autoimmune illnesses, but it seems to have allowed me the blessing, at long last, of better days. I've even had to reduce my blood pressure pills down to the very minimum and my insulin cartridge lasts me a week! A couple of dried dates can bring me back from a low blood sugars now instead of 30 years of severe hypos rescued by jelly babies and lucozade! Result!

-discovering water Kefir grains, brewing homemade probiotic ginger beer and soda and enjoying what a positive effect it seems to have on my digestion. Plus I'm so attached I think of my little jellified chums as pets now, giving back so much more than they get from a shot of sugar and mineral water! Still going strong after six months, they're currently having a little rest and recuperation in my fridge over the holidays! They so deserve it! 

Water kefir in spring water

-being well enough for my first longed-for holiday, five days in June in fabulous Flamborough to restore my soul and get inspired for my novel which is set along that stunning coast. 

North Landing, Flamborough, East Yorkshire 

-reconnecting with my bestie from schooldays after she resettled in the UK after decades living abroad. Our weekly Skype adventures, texting, laughter and far-ranging heart-to-hearts till the early hours are a joy to my spirit. The years fall away and we're in our teens again, but even closer with the richer perspective of the years apart.

My bestie and I conquering the Skype gremlins 

-teaching myself how to bake the most moist, rich, delicious chocolate cake I've ever tasted, using coconut oil, almond flour and ingredients that no longer make my blood sugars spike, with the joy of never needing to deprive myself of my ultimate salted caramel treat! That is, if I've ever got any left after sharing it with eager friends and family!

Gluten-free salted caramel chocolate cake

-dog-sitting a variety of furry friends of friends who fill up, temporarily, that dog-shaped hole in my heart since my own lad passed away.

Cocker Spaniel sisters discovering treat puzzle ball

-inching towards the publication of my second novel, “Cloudhover Solstice” with all the attendant pleasures of plotting, researching, dreaming, writing and editing, plus the privilege of knowing how much my characters have found their fond place in the imaginations of my readers. So thankful to the kind few who support me by leaving a review, sharing posts, tweets and spreading the word. You are worth more than gold to me, even if I never earn a penny from my passion!

Work-in-progress novel. Not the *actual* cover!

-adventuring on a fungus foray by day and a bat walk by night in local woodland and having the quiet thrill of being at one with the wonderful natural world that surrounds us in this lovely corner of Yorkshire.

Orange Birch Bolete on the Fungus Foray in October

-soap! After night after night of sciatic twinges and cramps, googling in sheer desperation for help with agonising, sleep-shrinking restless legs, I came across what sounds like some mad old wives' tale of putting soap in a sock in your bed. I bought a cheap tablet of soap from the Co-op the next day, stuck it in an old knee-high, shoved it sceptically between the sheets. I haven't had full-blown cramp since that first night! No more idea why this works than anybody else – maybe I'm a mad old girl, too, but who's counting? 

Soap in a sock

-acquainting myself with my new all-singing, all-beeping insulin pump, Humph Mk II and his handset, the rather feisty Rita the Second. Yes, I still scream at Rita when I'm hypo and she's nagging me to eat. I still roll my eyes at Humph when he decides he needs new batteries in the middle of something more interesting. But you've got to love technology and ingenuity. They're keeping me alive from one moment to the next. My great gran was dead at 42 for lack of such inventions being widely available in the 1920s.

Me and my portable pancreas

-the birds, the Moon, passing planes, the trees, the flora and fauna, the clouds, the sunsets, the faces, the patterns, the colours that have kept my camera clicking throughout this year and the privilege of reliving eternally these moments frozen in time and sharing them with friends the world over.

Full Grain Moon over the wood

-friends, old and new, online and with flesh on, who remind me how many truly wonderful and special people are on this planet, fighting to ensure that love will always win over prejudice, bigotry and hate.

2017, you're welcome! You might not be gentle. You might not be all we hope for. But I'm coming to make the best of you, ready or not!

Ricky Gervais using Humpty Dumpty language?

  “I don’t know what you mean by ‘glory,’ ” Alice said.
    Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for you!’ ”
    “But ‘glory’ doesn’t mean ‘a nice knock-down argument’,” Alice objected.
    “When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”
    “The question is,” said Alice, “whether you can make words mean so many different things.”
    “The question is,” said Humpty Dumpty, “which is to be master      that’s all.”
    Alice was too much puzzled to say anything, so after a minute Humpty Dumpty began again. “They’ve a temper, some of them—particularly verbs, they’re the proudest—adjectives you can do anything with, but not verbs—however, I can manage the whole lot! Impenetrability! That’s what I say!” <sup>* quote from Lewis Carroll's "Through the Looking Glass"

Just reading an article in today's online Guardian Culture Section Ricky Gervais: "Bring on the Haters"

How like Humpty Dumpty's stance on semantics Gervais' own perception of the controversy over his use of certain offensive words is.  


I'm not a "hater". I've probably cried with laughter at "The Office" as much as anyone. But I know the "in real life" derision and misperception fostered by his previous jokes about M.E. He joked at one stand-up show how he'd seen someone collecting for M.E.:

-M.E.? Not MS - not the crippling wasting disease. No, the thing that makes you say 'I don't wanna go to work today'.

There was a genuine M.E. sufferer in the room that day. She had to endure the humiliation of the whole room applauding and exploding with laughter at what was, whether Gervais would admit it or not, her expense and the expense of all M.E. sufferers who face the very ignorant attitudes being celebrated and reinforced in the said joke.


Then, recently, we have the outrage caused by the comedian's latest tweeting of an offensive word used to belittle people with Downs Syndrome. Gervais claims he has it on his own authority that the word has changed its meaning. 

Many have challenged him. Yet even in this latest article, all but the brave mum of two disabled children with whom he deigned to discuss the matter, are now labelled as his "haters". Again he paints himself as the hero and victim of the sphere where he dreams he has rewritten the rules of meaning. A tiny world focused away from empathy, compassion and any sense of connection with the lives of others more vulnerable than Mr Gervais.


As his new series' title says: "Life's Too Short".


Life's too short to forget your humanity and the responsibilities that go hand in glove with the rights of free speech. Otherwise, you're just like Humpty Dumpty in his sneering superiority that a word means what you "choose it to mean - neither more nor less". Life's too short to forget that words belong also to the hearer once they are spoken or written. Every mystified, indignant Alice can challenge you then. You can go on believing your own propaganda of course. But it doesn't save you from falling off the wall.</sup>