Re-printed

Diabetes is often referred to as a 'hidden' disease.  When Elliott on the TV show Scrubs once told Type 2 diabetic character  Turk, "If you want sympathy get a disease people can see', I couldn't help but laugh.  In many ways, the fact our condition is mostly hidden, is a benefit.  I don't have to worry that an interviewer's prejudices mean the wheels on my chair make them put that 'cross' next to my name.  I am never teased or bullied (other than my family, which I am kinda fond of).  I don't stand out. I am judged on my abilities, not my 'disabilities'.

But the down side of that is that people with diabetes can feel very alone.  I read an article while at University once talking about how people with hidden conditions find it hard to identify an in-group the same way a wheelchair user might. During times when diabetics find managing their condition hard, it is that in-group that helps you through.  It's your fellow diabetics, your friends, your family.  Even the nurses at my GP surgery, who I laugh and joke with, are part of my diabetes in-group.

Diabetic burn-out, a well-recognised time of 'I need a rest' that diabetics can go through, usually polarised by  people not having an in-group for support, hit me around a year ago.  The posts on the blog began to become more sparse (a sure-fire sign that my thoughts are elsewhere) and blood testing and carb-counting had dwindled to embarassing levels.  When my DSN (Diabetes Specialist Nurse) asked me why I had gone three days without testing, I lied and told her I had lost my machine and was using a spare.  I hate liars. 

During that time, I stumbled upon the photo above,which was being used in an artistic education programme by artist Dana Heffern, whose aim is to educate non-diabetics.  This photo had a profound effect on me. At the time I was in the depths of burn out, struggling with what diabetes was doing to me both every day and over my life.  I was tired of the constant effort and dedication demanded of me, which only resulted in average health. I was angry.

When I saw this photo I couldn't take my eyes off of it.  I could think of only one singular word to describe it;  Mutilated.  Seeing the holes in the fingerprint, which when magnified felt like bomb craters, fuelled my very anger.  Your finger print is part of your identity, so much so that even identical twins do not have the same prints.  It is part of who you are.  It is yours.  This striking image was showing me what diabetes does to people; it mutilates them. 

That image haunted me for several months and even now calls out to me when I see the pock-marks in my own fingerprint.  But with the ending of the burn-out phase came a new lease of life for diabetes.  I threw myself back into volunteering for events, attending groups and bloggers forums and picking myself up off the floor with a new determination to wipe that very floor with my condition.

Now, when I look at that image I know that diabetes has changed me.  Beyond recognition, probably.  But not for the worse in fact I feel it has done quite the opposite.  Those marks on my fingers are a sign of the in-group I belong to, one which happens to be about 3 million strong in this country alone.  They plot my journey one crater at a time, and are my proof that diabetes hasn't taken me prisoner just yet.  They are my evidence that I will live a long, healthy, happy life because I am trying to.  They are evidence of my care for myself.  They are also unlike any other person in the world. That makes them as much part of my fingerprint as the very print itself.

I may have a 'hidden' condition but I have chosen to wear my condition for all to see.  I have chosen to find my in-group by wearing an insulin pump and shouting about it.

You, are my in-group, and my fingerprint is both damaged, and as perfect, as this one.

Non-invasive CGMs - The one to watch

Last week I had the pleasure of meeting up with some fellow bloggers and a team from C8 Medisensors, the company bringing to the market the much-anticipated non-invasive continuous glucose monitor somewhat catchily named, 'the HG1-c'.  I mentioned them briefly after happening upon their stand at the ATTD earlier this year and last week provided an opportunity to get some waffley blogger-types together in a room to discuss the Hg1-c, the company, the history and the future. It's all bright, by the way.

In a nutshell this investigational device (not yet CE approved) consists of a small box, around the size of today's smart phones or an insulin pump, which is held in place around the midriff by a neoprene belt.  Here it measures the amount of glucose in the fluid beneath the skin using Raman Spectroscopy technology. For those of you who - like myself - don't speak 'medical journal', Raman Spectroscopy is effectively shining a light through the skin.  This light reacts only with glucose molecules and can therefore identify how much glucose is present.  It then feeds this back to an app on a smart phone (Apple version in the pipleine) for you to keep a near real-time eye on your glucose.  Ingenious, I think you'll agree.

So far the benefits of the system include being vastly cheaper than the current traditional CGMs available such as the Navigator, the Enlite and everyone's favourite, Dexcom.  The price of the unit is approximately £2500 which although still a very large outlay, is a drop in the ocean in comparison with the traditional CGMs.  In fact over the anticipated 4 year lifespan of the device, that is a saving of approximately £10,000.  Imagine how much diabetic chocolate you could buy with that!

Other benefits include being non-invasive and therefore painless, having no expensive parts to replace, it is relatively discreet (although perhaps not underneath any negligee when preparing to seduce the husband/wife!) and the accuracy is comparable with the current systems.  CGM accuracy rates currently range anywhere from 75-89% and the information we were presented with clearly showed that for trend information allowing you to make better self-care choices, this system performs as well as any of those above.  

There are a few drawbacks to mention.  For all those parents out there thinking how fantastic this will be for your little ones, we were categorically told that this device will only receive CE marking for adults.  So alas if you are interested in this, using it on children would be considered 'off-label'.  

It is also - in my opinion - rather on the 'chunky' side at this point thanks to being worn on a girdle style belt and the need for a battery pack alongside the monitor. But for me, this is a trade up I would make for the sake of more affordable, reliable and non-invasive CGM.  I have tiny marks all over my abdomen from the many cannulas I have worn over the years, so the idea of a monitoring device that doesn't even pierce the skin, is wonderful. 

It also isn't waterproof so no skinny dipping while wearing your C8 girdle, because you can't return it if you wreck it, OK? And due to the need for no movement between the skin and the laser for it to work without interruption, it isn't recommended during exercise at the moment.  

That said, if you are looking for a more affordable, reliable CGM system that is up and running in 15 minutes, is close to the 'gold standard' of glucose monitoring and is run through your phone meaning no extra devices to carry around, then I strongly suggest you make your own enquiries about this system.

The plan at the moment is to roll out in the EU imminently, followed by Switzerland, Norway and eventually, Iceland.  So to the Norway readers I discovered a while back - you know who you are - keep your eyes peeled.

The message really is keep your eyes on this company.  If they can get CE approval then they may well have version one of a contender for the likes of the market leaders who have become such a household name in the diabetes community.  We are bombarded with information about how beneficial CGM can be.  Well, maybe C8 are about to bring us the first step closer to CGM being a routine part of our care in the UK.

Watch this space.

I've attached some photos of some very engrossed-looking bloggers for your entertainment...

I hate to say it but...

For the last few days my blood sugars have resembled that of someone harbouring some kind of sugar addiction. My BGs, have been nuts!
Today, for example, I woke up this morning to a very unwelcome 15.5mmol which after a great whack of a correction dose, grudgingly shifted down to 8mmol. Of course, having eaten a 'sinful' bowl of berries and yoghurt, they are now back up rocking a 15mmol. Having switched cannulas and ultimately sticking on a 150% temporary basal rate, I continue to battle against my diabetes today, determined to keep the high teens at bay. I can feel my limbs screaming.

I would be annoyed about it, seeing as I find unexplained high blood sugars infuriating, but I know exactly where I went wrong. The 'right on the money' approach I had adopted which only a week ago had me rocking 6s and 7s all day, was the old exercise and diet system. It isn't rocket science. It never fails. Only a week ago I was low-carbing, gorging on vegetables like they were going out of fashion and exercising every day, without fail. Whether it was a walk with a dog from the local pound, a hardcore body combat class or a yoga session (deceivingly sweat-inducing), I was doing something - anything - every day.

The problem is, as most people know all too well, taking even a few days off means your body becomes less sensitive to insulin, and you start to need more. Add to this two family BBQs which had me reaching for the hot sauce (sugary as hell once you get past the chilli 'bite) and tucking into a range of delicious breads. On day 1 I put the blood sugars down to the BBQ, day 2 I told myself that day 3 I would get back on it and day 3 even having got my diet back in check, the lack of exercise in my life is glaringly obvious.

I miss my 6s and 7s.

The hardest part about getting back on track, is actually getting back on track. The climb back onto the wagon is a hell of a trip up, when your legs feel like you've run a marathon before you even get out of bed. When you are rocking 15s it is so hard to even think about going back to the gym and even walk is the last thing you feel like doing.

But that is exactly what I will be doing tonight. Forcing myself to go for a walk, even for 20 minutes. And I'm back on the low-carb veggie wagon and tomorrow, I'm gonna give the gym studio a battering!

These moments

This weekend my brother invited me join him at a small meet-up called 'The Little Green Gathering', held at a local sustainability centre where he was giving a talk on the Zeitgest movement, something he is as passionate about as I am about diabetes advocacy.  I've been saying for some time that I'd come along to one of his talks, so this evening I decided to join him and come good on my promise.   But as so often happens when we aren't searching for it, it was an unexpected, wonderful moment that made the event.

Knowing that he was on for an hour and with a serious coffee addiction meaning I would be a fidgety twitcher if I didn't visit the little girls room, I nipped off to the ladies for a loo-stop.  As I waited for a cubicle to become free, two people filed in behind me: a mother and her daughter,  talking amongst themselves.  Normally their conversation would have passed over me barely registering, but all of a sudden a familiar phrase caught my attention.

"We should do your numbers in a minute." Mum said.

I've heard those words before.  I've heard them on more than just a few occasions.  As I eavesdropped them discussing numbers and times I wanted so badly to turn and let them know my little secret too, but the door of a cubicle opened and without meaning to I found myself locking the cubicle door behind me, saying goodbye to that moment.

It's a good job I pee fast.

As I emerged from the cubicle I made it just in time to see a crisp, clean looking testing kit sprawled in front of the young girl, cradled in the open hands of the mother.  Even that image speaks a thousand words, doesn't it?

I squeezed past and whispered to them, "me too," gesturing towards the open kit.

"Sorry", mum said, now making eye contact with me.

"Me too." I repeated.

"Really?" Her eyes now fixed on mine.

"Yup" I smiled.  

"Type 1 or 2?"

"Type 1" (weirdly proud).  

"When were you diagnosed?" She questioned.

"Oh god, 25 years now. So, 1986 I guess."

"Wow, she has had it a month." Glancing over to her child.

And there it was; the future of diabetes.  A bight young thing getting accustomed to a lifetime of hand-washing, loo-testing and number-crunching.  As mum and I exchanged stories the bubble around us grew as I was only distantly aware of people coming in and out of the cubicles behind us.  Like bathroom checkers, we were pushed from one spot to another as people negotiated the room we had commandeered to share this moment.

We talked pumps, diagnosis and injections, and as mum pulled out the needle from a correction dose of insulin, the future generation of diabetes and I high-fived and smiled.  Stupid, crappy injections.  We shared a knowing glance.

I couldn't leave without swapping details.  Having only been on board for a month but already speaking a language they should never have needed to learn, I wondered how many questions mum might have in her head.  Does it get easier? How long does it take to learn? Are you happy?  Will she be OK?

We swapped emails and addresses and promised to keep in touch  so we could ask all the questions we want, without the whirring of a hand-dryer somewhere in the background.  

As I went to leave the room I heard, "Are you a hugger?"

"Oh yeah, I'm a hugger." I replied.

Hug isn't the word. Embrace is closer to the mark.  An embrace that lingered a moment longer than it would have even between friends.  With that and a "Welcome to the club, kid.  We're all pretty awesome", we parted ways with a smile and a promise.

These are the moments I live for.  A moment which could so easily have been missed if any one of us had changed our path.  If we'd doubled back, done that test elsewhere, not mentioned anything about numbers.

I don't know how, but somehow, every time, diabetes finds a way to bring us together.

Tethered

I love my pump.

 I have since I walked into the Consultant's office on day 1 of my pump-life and saw the Medtronic Veo on the table.  It was the very same pump I had wanted when I was soaking up all I could from the Internet about them.

I liked the integrated CGM and low glucose suspend.  I know this is ridiculous as I'm not funded for CGM and as I don't spin gold from my hair, am unlikely to have it for years yet.  But I liked it.

I liked the colours it came in and the fact I could add a little touch of myself to it.  I liked the automatic inserter, meaning I didn't have to stab myself with the inch long silhouette needle (the first time I ever discovered that I harbour just a touch of needle-phobia).  I liked the Medtronic team and their many nudges in the right direction when I was acting like a diabetes-moron and kinking cannulas left, right and centre.  Most of all, I love the freedom it afforded me and new, improved, complication-free (ish) life it afforded me.  I loved feeling well again. 

I still do.

What I don't like, is the tubing.

Over the last two and a half years I have begun walking through doorways at a distinct angle.  To the knowing diabetic, this is because if there happens to be some wayward tubing protruding from your clothing, you could bet your house on it getting caught on the door handle, wrenching you back stomach-first in a cartoon-like rebound.  To the unknowing eye, I simply look disabled.  The 'in the head' kind of disabled, that is.  I have learnt never to change the cannula when in sight of a cat, because all that rustling and flicking of tubing is enough to entice even the most lazy feline into a stalking frenzy.  I am a little frustrated to say the least by having to find gym clothes with zip-up pockets in, because when I try to exercise, 'pumpy' flies off the trouser band, effectively assaulting anyone within a 3 foot radius (that's the length tubing I use).  I have also learnt that if you are going to snuggle up to the husband during the night, make darn sure he isn't laying on the 3 inches of tubing closest to your stomach, because when you turn over seeking a more comfy position, you will think someone is pulling out your insides, liver first.

As much as I love my pump and the freedom it affords me, I am more than ready to go tubing free.  And although Omipod and I didn't get off the the best start, they are gathering momentum in the UK all the time, and the positive reports make their way back to me time and again. Perhaps a second glance is worth a think or two.

We also have Cellnovo now on the horizon, who despite have gained CE approval (meaning it has been deemed safe for human use) are still hanging on to their new, very sexy, patch-pump.  And although they are a completely new company, most of their team have been head-hunted from the heady heights of likes  of Medtronic, my personal favourite (well, only really) pump-provider.

There are also rumours about the Solo making its way to ours shores in the near future after Roche acquired 'Medingo' (who??), which for me, is probably the best news of all.  Being tubing free but also from a very well established company and with a bolus button on board meaning if you forget the handheld diabetes manager tool you use to deliver insulin (you scoff, but beggar's belief I managed to go out the other day having not even connected Lord Pumpingtopn.  Clever.) then you can still deliver a bolus for meals.

Yes, it is definitely time that I ditched a tethered pump (even the name annoys me these days) and discover a new way of pumping. 

18 months to go before I should be able to apply for a new, less tubey pump.  And very much counting!

An accurate representation of how I currently feel. With only the smallest element of massive over-exageration

The low-down: Animas' Sports and Exercise weekend

If you don't get time to read through blogs then here at last are the cliff notes of the Animas Sports and Exercise weekend 2012.  It should give you a flavour of what the weekend was about and show you that everyone from total beginners like myself to channel swimmers and Iron Man competitors alike can benefit from the weekend.

Look out for yours truly towards the end making some, like, totally profound statements....

As the video is currently unlisted,you can watch it, here :

Enjoy!

Vascular antics: when aterties turn bad

For the past two years I have been struggling with some pesky sporadic pains in my legs which appear whenever I try to walk anywhere for more than a few minutes.  Similar to cramping, it feels as though my calf muscles have all of a sudden become too short for my legs, leaving me limping and in a lot of pain.  It all subsides after a few minutes but needless to say, a 28 (and a bit) year old shouldn't be having this kind of difficulty walking. I visited my nurse at my old (and totally useless) doctor's surgery a while ago asking about it, who during a routine diabetes review told me in a matter-of-fact manner that I had, and I will never forget this, a 'weak pulse in your foot'.

As with most things, the professionals just love to blame it all on the weight.  Because if having to drag clothes from the back of the rail (not so easy when you're sporting a couple of E cup cahoonas) wasn't bad enough, apparently we (the chubbies) need to be reminded on a regular basis that we just aren't doing well enough when it comes to our diet and exercise.  

'Just lose weight and it will most likely improve' she said.

Most likely.  That seems, well, like a hopeful guess.

But you see, I'm not silly.  I know that there are millions, maybe billions, of people far heavier than myself who don't get these crippling pains.  So there must be another cause.  Another explanation.  With the pains in the legs, the weak pulse in my foot (thanks, lady) and the fact that I am now back with my previous great GP, I decided two weeks ago that I'd had about enough of walking like I have wooden feet, and made by appointment with the doctor.

As I trundled through my week-long wait for my appointment, the thoughts of how serious this could be started to dawn on me. Of course with the wonders of Google and having typed in 'weak pulse in feet and pain in legs' I had convinced myself I was harbouring of a whole host of frightening conditions, starting North of 'calf strain' and ending somewhere South of 'fasciectomy' (where they cut limbs open to release pressure, before carrying out a skin graft). I have seen more photos of black feet rotten with gangrene in the last week, than I care to recall.  

I'm a catastrophiser, you see (look it up, there's a picture of me next to the dictionary entry).

'Anna Presswell', the familiar voice called.

Into the sterile, lemon-coloured room I went and launched into my symptoms, hoping he would immediately recognise and be able to explain my condition, offering me some reassurance that this really was just down to the weight.  

After having a good poke around of the feet and a good check of the toes, out came what he refered to as, 'The Doppler'.  It turns out, 'The Doppler' is the same machine they use to hear a baby's heart beat for the first time.  Out came the jelly, and before I knew it I was listening to my own pulse through the medium of foot-whispering.  Little did I expect that the first time I used one of these, it would be to try and hear my own heart-beat, through my feet.  I expected something a little more, conventional.

After some fumbling about, searching and eventual comparison to an area where my heartbeat could be heard clearly, a very faint, distant pulse was found.  And I really mean faint.  Too faint, for my liking.  When comparing it to the other areas, it was like a whisper.  One we had to listen really closely for.

I let out the breath I've been holding onto.

As he took me through the reasons it may be happening, I mentally check every one of the boxes.  Weight, check.  Cholesterol, check.  Diabetes, check,  Smoking, check.  And before you judge me, save it. It was a silly decision the first time took a drag of a cigarette as an angry and rebellious teenager, but it was my decision and I alone am allowed to judge.  I have turned a corner in my life in the last few years and learning that smoking really can be overcome, was on of those lessons.  The cholesterol has been addressed, the weight is coming down, the smoking is a thing of the increasingly distant pass and unfortunately, despite trying to give that up too, the diabetes is a keeper.

Having explained that I am doing all the things the Doctor would be advising me to do had I come in with no intentions of changing, I have been tasked with continuing the weight-loss for another two months and make a mental note in the diary to come back for another check.  I don't think I will be needing to make any mental note, thanks all the same.  It will be the 8th of October when I make my appointment.

I have always prided myself on having been able to keep the complications of diabetes at bay, but it seems I wasn't able to escape forever.  At least this kind of problem is one I can do something about, something I can reduce, reverse or at least stop in its tracks.  I have changed my lifestyle and continue to all the time.  I find new healthy options to foods I once craved all the time.  Each week that goes by cigarettes become more repulsive and exercise becomes more enjoyable, and more frequent.

I am becoming the text book diabetic.

This is the best kind of wake up call.  Yes, it is a complication of diabetes, but its also just a reminder that mixing all of those factors together does have implications, for anyone.  Ones that I can address, but implications nonetheless.

This is also the next challenge along the way.  The next hurdle. And it will be my next success.  There was the smoking, then the eyes, now the legs.

And I will wipe the floor with these vascular antics.

And just for the sake of it, here is a picture of a pair of lovely healthy feet, similar to my own.  I even carry around the leaves, for full effect.