ODE TO THE 'INVISIBLY' ILL (for M.E. Awareness)

BUTTERFLY WITH BONES - a poem for those who live with chronic illness

#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.

SWEET HONEY FROM THE COMB

I'm rather excited this morning!

My very first jar of raw unpasteurised golden honey from British bees has just been delivered to my door!

I avoid all sorts of sugar as a rule, but I still sometimes make dairy-free, gluten-free cake with 85% chocolate icing, using cocoa, coconut flour, ground almond and coconut oil, sweetened with honey so I can satisfy my inner chocoholic (and a growing number of friends who are eager to get their fix too!) with a treat from time to time that has almost no impact on my blood sugar or any worsening of neurological symptoms.

Mass-produced commercially pasteurised "funny" honey, found in squeezy bottles and convenience stores, which I currently use in my baking, is a far cry from raw honey fresh from the hive like this. Supermarket-bought processed honeys are too often adulterated with corn syrup and manufacturers sometimes allow abusive unethical treatment of the bees who labour to make the trickle of real honey that's in there!

So I've taken the plunge and sent for this raw honey, straight from the beekeeper. 

I'm even more excited now I've tried it! 

I've tasted nothing like this since I was a child!

Full of flavour, dripping with living beneficial enzymes like digestion-supportive amylase, natural vitamins, shot through with bee pollen, propolis and honeycomb. Anti-inflammatory, anti-oxidant and all the precious life-enhancing golden goodness humanity has celebrated for thousands of years. Now more than ever, with bees under threat worldwide, I'm keen to embrace honey from happy, healthy, protected bees.

Raw honey has 82 g of nutritious carbohydrate for every 100 g weight, for all of us diabetic carb counters and insulin pumpers. There is some encouraging evidence that raw honey is beneficial to support health, including for diabetics, when consumed judiciously in small amounts, in terms of blood glucose control and lowered cholesterol. Of course, it's possible for studies to be biased, so we have to use our brains and experience to find out what's right for us!

You can read the bit in italics below after the asterisk (*) if you're interested in why I'm changing the way I eat and my personal food journey. If not, I'll just end here by saying that on flavour and service alone, I can highly recommend this honey from Local Honey Man (other raw honey is available!)

*I'm no health evangelist. That's why this bit's just added here out of interest for anybody who wants to know. I'm not recommending my food choices to anyone else, or suggesting my diet has in any way "cured" my lifelong autoimmune conditions. The improvements I've noticed in myself this past year are incomplete, but enough to persuade me to continue to eat in a way that supports my own health. Each person has to find out what's best for them, as we all do.

I'm fortunate that I shop and cook mainly for myself and my elderly mum, who has also seen improvements in IBS symptoms, heartburn and reduction of a constant cough from mucus overproduction. I don't have the additional concern of catering for other tastes within the family circle as many do, or coping with limited choices in work canteens. I rarely eat out, so this is achievable for me, even on a very limited budget.

Sick of 33 years of less-than-optimum type 1 diabetes control, even while following the traditional NHS party line advice on nutrition, carb counting, insulin pumping etc and even sicker of horribly disabling symptoms of myalgic encephalomyelitis (M.E. aka CFS) for which I get no treatment from the establishment after their earlier intervention with CBT/GET at one of their UK 'fatigue clinics' which ended up making me much worse, I decided to make changes to my already low-GI, low-carb eating pattern.

So, for over a year now, I've been eating a delicious, varied diet free from eggs (which I can get away with eating if very well cooked or in baked goods, but not otherwise), dairy-free (cow's milk makes my stomach ache for hours afterwards these days), gluten-free (saying goodbye to other digestive woes!), nightshade-free (white potatoes, peppers, tomatoes) and avoiding other foods like onions and garlic that stimulate my already compromised central nervous system. 

Alcohol, too, along with most stimulants and opiate-based medicines, isn't well-tolerated by my hyper-reactive damaged CNS. No fun in that! Instead I drink home-brewed Kefir as a natural pro-biotic (usually in the form of delicious ginger beer!). Raw honey with all its natural benefits as nature's sweetener is the latest addition to my pantry!

There is ongoing research suggesting that leaky gut and the intestinal microbiota play a role in the pathophysiology of M.E. In simple terms, it may be that M.E. patients' bodies deal with certain foods poorly, allowing common triggers through into the bloodstream and brain that cause the body to attack itself in typically autoimmune ways. 

By eliminating such foods, I've had some better periods of resilience, energy and relief from pain than for many years, and my latest full diabetic check-up last month had the experts doing a double-take at the near-perfect results I had for my HbA1c, weight, liver function etc. I've even had to come off my medicine for high blood pressure (I'd been on 10 mg Ramipril for years)in consultation with my GP.

For me, this radical change came from my decision last Spring to commit for a trial period to following the excellent wise advice of UK-based Dr Sarah Myhill. Her website can be found here and her books Diagnosis & Treatment of CFS & ME: It's mitochondria, not hypchondria and Prevent & Cure Diabetes: Delicious Diets not Dangerous Drugs (aimed at Type 2s but also helpful to Type 1s) are available on Amazon. Dr Myhill's good sense and experience with patients leads her to recommend a mineral and vitamin supplemented elimination diet that overlaps in some aspects with the Autoimmune Paleo Protocol (AIP)that developed independently in the US to alleviate other autoimmune conditions like Multiple Sclerosis. 

I'm not one for bandwagons or fads. I'm a magpie gathering the brightest insights I can find to signpost my own journey. These approaches were the springboard and support for my own explorations of ways to cope with what can't be cured at this time.

I can only wish you well with your own health. I understand from the inside all the daily struggles these autoimmune illnesses can involve, for patients and their loved ones. 

I hope one day biomedical research and, at last, a cure, will be found for all. Meanwhile, I hope you find the right signposts to point you on the best path forward for you! 

TREES OF HOPE

If this resonates with you,  you may also be interested in my other blog which I wrote from 2010-2012 about my journey with the autoimmune conditions M.E. and Type 1 Diabetes
M.E. MYSELF AND I ASK YOU

Thank you so much for dropping by and for your comments, shares and wonderful encouragement along the way!

The plot thickens

Had one day well and strong enough to venture out this week. I'd overdone it last weekend attending a wonderful service at Talbot Lane which was soul-expanding and heart warming but crunched my M.E.-ridden crock of a body to a standstill with three long hours in the freezing cold (church couldn't afford to put heating on and lady near me was actually trembling and shivering with cold throughout!).


 I was one of sixteen ministers and communion stewards distributing the bread and wine at this Covenant Service for the whole Rotherham & Dearne Valley Circuit. It was a real joy to meet up with some friends I hadn't seen since I collapsed with M.E./CFS plus erratic diabetic hypos almost five years ago. How can it be that long? This time last year I wasn't even well enough to be at the service, let alone take part, so I have so much to be thankful about! The odd "good" day here and there is like a candle in a naughty world (to quote the Bard waaay out of context)!


So I went on a "good" day later in the week to Wentworth Woodhouse Garden Centre and Walled Garden with my Mum and a dear friend who I met through family history research (she's a very distant cousin). The weather was autumn sunshine, gentle and soft, dry and mellow. We explored the gardens, the cascade, the rock terraces, bear pit (not an icehouse, no matter what folk once believed) and the village. Met some Fallow Deer, lots of wild birds, fish, chickens and local tradespeople selling produce that has not even seen an aeroplane or, in some cases, a car. Had lunch in the Walled Garden Reastaurant. Local business at its best. Cappuccino and comestibles at their best, too!


Overwhelmed and humbled this week to have my third "Highly Recommended"/ shortlisting in four months from the team at "Writer's Forum". This time it was for my recent short fiction "The Butterfly Wall". The critique they offer on your work is invaluable and so helpful, I wish I'd discovered it before. I find one of my particular challenges is plotting. Anyone who knows me will laugh, knowing I'm not the most linear of thinkers! This is all challenging and inspiring me to tighten up on my plotlines and chronology.


I've a couple of a stories on the go at the mo. One's a humorous one provisionally entitled "The Surreptitious Biscuit" (say no more!) and another where the protagonist takes a phonecall from his grandmother in the middle of the night (based on a fragment of conversation I heard years ago from a friend whose gran rang him up and asked him seriously: "Is that your mother?"). 


Yesterday's crash on Facebook had me dipping my toe in Twitter and apart from a wet toenail and potential Athlete's Foot I don't know where that may lead. I do know that my "real" writing is often fed by my erratic blogging, facebooking and maybe even in future by tweeting. I'm also aware I need to use the little energy I have between the M.E. brain-foggery to produce more and more completed and focused writing. 


"You're my favourite waste of time," as someone in the charts (whose name temporarily escapes me) once yortled; but nothing's really wasted if you put it in your pocket, hug it and chew it till it turns to gold or dust!