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

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 Bloodshot Dark

In this dark room

Where light lamps me sore

Salt and steel

You waft the tide

Drawing its flow

Cradling its ebb the creeping healing

That shades our burning eyes

From the blinding flash of the sudden

And tunes our ears to the throb of earth

Swollen livid muscles glutted with pain

Feel the silk touch of your gentling

Nerve-wrack weak

You catch my stumbled weight

On the lavendered linen-cool of care

Beyond my crozzled corners

The synapses out of sync

Your steady warm word whispers “Home”

Lord, where I am unsteady

Ground me.

Where I am burning,

Cool me.

Where I am fragile glass

Strengthen me

Where I am weak

Be my quiet strength

Pacemaker

Pace me at your steady step

Soothe and strengthen

Through the bloodshot dark.

BMI - Blooming Mental Imagery

After 3 months I've shed the 3 and a half stones(about 22 kg) I had put on pound by pound after I collapsed with ME/CFS in October 2005. 

I voluntarily attended a diabetes type 1 half day course on "Carbohydrate Counting and Insulin Adjustment", a kind of mini "DAFNE (Dose Adjustment for Normal Eating)  at my local hospital. It was as if, in between the plastic fruit and veg and the toe-curling insights into the hopelessness of diabetic "control" for the last 25 years, someone had finally handed me the keys to the kingdom.

I came home and never looked back. No more hurried falsifying of my glucose test results  before attending diabetic clinic. No more mad swings up and down between giggling hypo and treacle swimming hyperglycaemia. No more looking in the mirror and seeing this michelin tyre imprisoned woman I no longer recognised as me.

My long acting basal insulin, that I previously thought as useless as injecting water, was reduced from 60+ units each day to only 18, split morning and evening. My bolus dose before meals that had been an erratic 24-12-18 is now, according to my personal insulin-to-carb-ratio (ICR), just 2 units per 10g carbs consumed. Instead of constantly battling to eat enough carbs and sugar to prevent myself falling into hypoglycaemia, I now eat much less carb without actually "low-carbing". That means between 2-5 units at breakfast, depending on whether I've eaten fruit or a serving of muesli. My new high-tech kitchen scales are a positive joy to help me work out instantly what I'll need to inject. Lunch, if I'm having a vegetable stir fry with some protein like my favourite oily fish, seafood or soya, can mean no insulin at all, as the tyrant carbohydrate doesn' demand it! I never feel hungry between meals, so I'm blessed by not craving snacks, so evening meal, of fruit, crackers, hummous, soup or whatever, only needs up to 8 units max, or, for a treat, unbattered cod with 125g chips on a Friday from our unbelievably excellent local chippie! Then that's 10 units (2 units for each of the 5 carb portions in those chips).

A former chocoholic, I can still completely acknowledge and understand the cravings and binges that haunted me since childhood. But now I can have one square of my favourite choc when my sugar dips into hypo (I rarely get hypo symptoms till I'm dithering about at 1.7!) instead of caving in to the compulsion to finish the lot. My glucose levels and insulin levels are now generally in the range a non-diabetic would enjoy, apart from the usual "unexplained" monthly hormonal dips when my woman's bod throws a wobbly. Same time as those carb cravings and sugar fantasies kick in worst, no coincidence! But with less insulin and less sugary "compensation", the peaks and troughs are much better ironed out now.

So now it's charity shop crawls to buy some smaller sized clothing (luckily I still have some smaller sizes from before I put on the weight through illness.) I tracked my weight loss smugly on one of those online "tickers" you can link to your homepage, and labelled mine "Getting me back from M.E".

So that's the diabetes "Big D" caged and warmly patted on the head for me, after a quarter of a century.  Just the ME to put back in the box now, and believe me, I've got it in my curvilicious sights!

You need to get out more

ME/CFS has a misguided conviction it can suck you dry from the inside, like other so-called "invisible" illnesses. It attempts to change your ability to think, move and function. 

People see a smiling face, they convince themselves you're well. I reckon that's better than always having a face like a fiddle!

So today, a little less crashed than often, I leapt at the chance to get out and about. Two dear friends rang and asked if I wanted to go to the National Trust park that's a half hour's drive away in the next county.

 "D' you fancy a trip to Columba?" 

My brain-fogged mental muscles had gradually reshaped this into the more realistic invitation to "Clumber (Park)".

 I got my walking stick, the dog's lead, my camera and waited by the door!

We arrived for packed lunch, sitting in the car overlooking the trees and fields which make the Yorkshire/Nottinghamshire borderlands so beautiful yet sometimes "overlooked" in quite a different way!  The sun was glowing bravely over a chilly smorgasbord of winter solstice sights and smells. Frost and fire lit webs and tendrils, the lake glistened with extra duck topping, dogs peed on scented tree trunks not seen for a while (the sign near the car park assured us "more "P" on the grass verges" or words to that effect - I  told the dog it wasn't an open invitation), and the corvines grizzled throatily from the Lime Tree Avenue.

For me, it was such a treat to get out into the healing countryside I used to walk and cycle in every spare moment I got. Today's outing was a refreshing  joy to share in Advent . OK, so now back home I feel like someone has taken a blow torch to my eyes and ears, put razor blades rather ungallantly inside my biceps and throat, my calf muscles are twitching and snickering like the nostrils of a well-bred horse, but my soul is soaring!

God bless, everyone;

hope you can treasure the quiet and quirky moments in your build-up to Christmas, and not get too trapped or drained by the frantic.

Safari or (Fire) fox-hunting

Today I've actually spent more than my daily quota of saved energy on trawling techie websites and dithering over whether to "tek no gorm" as we delight to say in Barnsley, of a monster threat. This morning's news reveals that Microsoft has issued an uncharacteristically altruistic warning to users of its browser "Internet Explorer" (it would have been news a few years ago to me that there WAS any browser but IE) that they should dump its cumbersome leaky flagship for any one of its rivals.

Security alert! Hackers have the potential to hijack and render bot my PC and laptop by cat-burgling through the unprotected back passages of IE. Thanks, Bill Gates, you make me feel all warm and snuggly. The surf is up.

So, after scratching my head for a frankly overlong time, wondering how the tattycorum I could get online to search out said alternative cyber-surfboard with the odd bell and whistle, without setting out in Internet Explorer, the light dawned. I recalled being badgered over past weeks to download the latest version of Apple's "Safari" every time I went on iTunes to download the latest episode of the Archers or podcast from TMBG. There it was, glistening reassuringly among my "All Programs" - Safari!

I spent another gut-plumbing few minutes weighing up the pros and cons, then took the plunge. What could I lose but my sanity and access to all my files, family history, photo memories and links to websites best left unrevisited?

So I clicked lugubriously on the  compass icon and said goodbye to a decade or more of the blue "e" with its drunken golden halo and swam out into the unknown. Gone phishing? I certainly hoped so.

Within a couple of hours of fiddling with settings, customising here and there and having to reintroduce myself to favourite websites in my fetching new "Safari" suit, I began to realise that a change is as good as a rest. I may well still test out Firefox in the future, which has such a glowing reputation. But for now, I'm loving the speed at which pages, even large photos load, with that intuitive blue progress bar that Safari has watermarked along the web address box. I was thrilled to see the new browser had happily taken on board my old IE bookmarks, and even whisks me instantly from anywhere to my blog with its unwieldy "seemed like a good idea at the time" title.

I began the day tired and I'm pretty wiped out now, but when I'm laid on that burning mat in the middle of the night, limbs feeling swollen and sore from not being able to pace myself through the day, picture me grinning like a fool at the joy of discovering what a rut I was in before Microsoft pointed to the open cage and clapped its hands to make me fly away.