Monday, 16 May 2016

Thyroid issues? The more the merrier.

Having a baby is like setting a bomb off in the centre-most part of your life.  Everything gets blown to smithereens and scattered around, and chaos ensues.  It's marvelous, in the most 'Armageddon' type way you can imagine.

By four months old even during her most sleep-resistant nights baby McP was doing 3-4 hour stints in between wake-ups, and a routine had started to emerge.  I was told it would take about 4 months to start feeling a little more normal by my more experienced baby-mama friends.  Only at four months exactly I started feeling worse.

My self-raising world-exploding  bomb
Just as I had started to figure out her arse from her elbow (and my own, for that matter), and life had begun to become manageable again (meaning I showered once a day and didn't leave the baby in the Supermarket by accident), I was hit with an overwhelming wall of illness.  If Jamie or my mother were around, I would fling baby into their arms and slump into bed for anything from 3-6 extra hours of sleep each day  

My heart was racing all of the time and stairs left me panting and dizzy at the top. My vision was blurry and my blood sugars all over the place, having already jumped from 6.1 - 7.2 HbA1c since the whirlwind arrived. My blog, advocacy work and consulting had all but disappeared. But it was the fact that my daughter was practically raising herself meant I had to get things checked out.  

Symptoms explained and blood drawn the results came back with a bump.  My last thyroid tests taken only six weeks before my symptoms began had been absolutely fine.  My latest ones showed my T3 and T4 to be as much as four times the levels they should.  And the hyperthyroidism diagnosis followed.

The job at hand at the moment is to find out why it happened (in the hope that it may be temporary) and how to manage it alongside the 'normal diabetes' (whatever that may be) and current lack of hypo symptoms (yay!).  Thankfully the beta blockers mean the pounding heart no longer makes it feel and sound as though I have a little man running around in my head, and I am no longer pounding along at 100 miles an hour.

And hey, when it comes  auto-immune disorders, it's the more the merrier, right?

Anyone else living with this and able to give an old tired girl some tips?

Saturday, 14 May 2016

New UK Dexcom shenanigans

Until now the use of Dexcom Continuous Glucose Monitoring in the UK has been through distributors, mainly Advanced Therapeutics for those using the G4 system with the separate receiver, or for those on the Animas Vibe, which has integrated Dexcom CGM, we could purchase directly from Animas.

However, as from this Monday, 16th May, 2016, Dexcom will be distributing themselves in the UK, meaning changes to the way its done and most importantly, new pricing.

From now on there will be no postage charge (which at a steep £6.95 per delivery would have been an extra sensor and up to one months use, per year), and single sensor cost has been reduced to £61 per sensor, or £246 for a 4-pack.

Below is the official letter from Dexcom with formal price list (***screams at Google Docs while trying to create document***).

And perhaps the most important thing you need to know is that the distribution has been taken over by Karen Baxter, formally of Animas Marketing team and one of the key figures in the creation and running of the Animas Sports Weekend.  I have known Karen for four years since first attending the Animas weekend a the blogger for the event, and know personally of the passion, dedication and second-to-none service she will bring to the Dexcom team.  Your service is in good hands.

Here are the details in photo form, because even threatening to throw my laptop across the room did not yield a suitable Google document...

Wednesday, 16 March 2016

Close calls

This weekend I was reminded just how invaluable my Continuous Glucose Monitor (CGM) really is, and of how precarious the balancing act we have to live by really can be.

I love gym classes - anything by Les Mills, really, but particularly the Body Combat series.  Structured as separate 'tracks' to loud music, it is a high-intensity class which makes me feel strong and powerful - in a flappy-armed, mistimed-stepped kind of way.  I am 'that girl' who can be seen close enough forward to see the instructor without squinting, but far enough in the corner not to stick out like a sore thumb when then instructor shouts 'Right!' and I go left, with great conviction, into the oncoming traffic of coordinated folk.  But no-matter that my actual combat ability is second-to-everybody else, I love the class.  And it gets results.

Since the birth of the small my weight, body image and fitness levels have started to bother me on an increasing scale.  It won't be long before the beautiful whirlwind becomes mobile, and while I am pretty fit for my size in a gym class, crawling around on the floor and helping her beautiful, fascinated soul discover the world is a no-go at the moment, so I have every motivation to get back to the gym.

Two nights ago I hit my favourite Body Combat class.  I had told myself I would 'go easy' so had lowered my basal expecting that my blood sugars would drop like a stone in a mid-intensity range.  Twenty minutes in and with music blaring, sweat pouring and calories burning, I was giving it all I had to give without a second thought. The funny thing about having children is that suddenly a gym class, one I may normally have groaned my way through constantly checking my CGM because it was all I had to worry about, becomes an hour of God-given freedom.  Without even realising it I had forgotten all about my diabetes and of taking off the reduced basal - one which would now be far too low given the adrenaline steaming around my body.

Post exercise blood sugar debacle
Back home two hours later and I was frustrated at the high sugars I should have seen coming. SRSLY!! I'd had the best time at the class, my ears still ringing from having edged too close to the speakers, but I now faced the prospect of sleeping with a BG heading skywards, so I took a cursory 2.5 units to bring it back down again, and headed to bed.  

I am incredibly grateful that the Dexcom has a 'last chance saloon' alarm even when in quiet mode.  I've had it on quiet mode ever since the small arrived for fear of waking her up, but at 1am two nights ago something sounding like my Dexcom alarm stirred me from a deep, deep sleep.  I recognised it as the one, long, loud beep telling me my readings were too low for the Dexcom to read.  As I opened my eyes, that feeling instantly hit me.  I could feel myself already convulsing.

I stumbled out of the bedroom as quickly as I could to get away from baby's cot, and got myself to my living room, Jamie swiftly in tow.  I had managed to drink a bottle of Lucozade before getting out of the bedroom, but something was badly wrong.  By 1:05 I recognised my mother's voice at my side (there are benefits to living like modern-day Waltons), but could no longer see and had immense feelings of panic striking through me.  Sat on the edge of the sofa, pale as a sheet and barely conscious (I am told), I could feel the convulsions, each one feeling as though someone was shaking me at my shoulders. I became aware that my mother was on the phone to the ambulance service.  Out of the corner of my eye I could make out Jamie unwrapping a Glucagon injection.  After what felt like a lifetime I started to regain my sight, and my breathing slowed.  As my mum finished her call to the ambulance, still on route to give me an MOT, the tears started to stream.  Why does it have to be like this?

NHS MOT: Still alive and kickin
After a visit from two of the most professional, warm and comical ambulance crew it was decided it was safe for me to stay at home.  I'd had two good BG readings since the ambulance had arrived, I was making sense and I had a ridiculous number of people around in case of a second emergency.
 My full MOT (courtesy of the NHS) came back peachy, and I seemed to be on the road to recovery. But I still felt fragile.  I still feel fragile, emotionally and physically.

I often wonder what I would miss least about diabetes if a cure came about. Would it be the daily grind? Wearing medical devices? The blood tests?  For me, it's the close calls.  The times when my mortality is put to the test, or I get a glimpse of what heading into a coma feels like.  The total loss of myself in a hypo and that dreadful feeling of, 'What if?'.

I am confident that my CGM saved me from an unconscious hospital trip that night.  Had I not been stirred by the CGM's 'final call' alarm, I doubt I would have awoken.  It wasn't my symptoms which woke me, and I was so tired between the demands of a five month-old and the recovery sleep of an excessive gym session that nothing was bringing me out of that sleep.  I've sometimes wondered if CGM really would save my life given how good my symptoms have been up until now, but two nights's ago I saw firsthand how one little alarm can give you that five minutes head-start on a vicious hypo, and can save a life.

It's the close calls I could happily live without.

Monday, 15 February 2016

Sainsbury's apology

Yesterday I posted about why that card represented all that is wrong with using diabetes as a punch line. Within a matter of hours of a diabetes advocate, Diabetes Power's Angela Allison, posting a picture online of a card she had seen about diabetes and obesity on the shelves of Sainsbury's greeting card section, hundreds of people with diabetes - or those speaking on behalf of someone with diabetes - had launched their complaint with Sainsbury's chief exec, Michael Coupe. 

In a glorious display of the power of social media and a really pissed of bunch of PWDs, Mr Coupe had issued a sincere, warm and humble apology. It went like this: 

"Dear Anna

Thank you for getting in touch.  Firstly let me say how very sorry I am for what has been a lapse in judgment, I completely share your views.

As soon as this was brought to my attention the product was removed from sale across all our stores, and I have this morning asked my team to investigate how this happened.

I pride myself on our values and I do believe our values make us different from other supermarkets, and I know our customers share that view, this is what makes this all the more disappointing.

Thank you again for bringing this to my attention.


Hats off to you, Sainsbury's, and thank you for recognising why this card is below the high standards you usually meet. 

Sunday, 14 February 2016

Stigma, diabetes-shaming and that joke about Bob.

I used to find jokes about diabetes funny; especially that one about Bob.  I liked it because it was sarcastic and witty, and there was no conceivable way anyone would think chocolate could cause diabetes.  That's what was funny about it, no?  My favourite blogs were ones which used humour to talk about life with diabetes, and my family and friends shared in-jokes a-plenty about diabetes and the many foibles living with it brings. But then something changed.  

Sometime around my late twenties people stopped asking "What is diabetes?", when the topic inevitably came up as my paraphernalia appeared, and instead people started to ask me questions about what I did to get it, or tell me they had known someone who got rid of it (chortle).  In my late twenties at University came questions from seemingly intelligent friends about whether or not I knew that my 'foot was going to fall off' from eating a chocolate bar (thank you, Scrubs), and then along came MatthewWright-gate when angry online conversations were held about 'diabetes-triggering 'Easter Eggs. Suddenly it wasn't so funny when I realised that people did believe it and that worse still - the hobby of diabetes-shaming had begun.

This year I will reach 30 years of having lived with type 1 diabetes.  I was diagnosed long before the internet, Sky TV and smart phones came about, and if we wanted to learn anything about diabetes we had to look it up in a giant book warehouse called a library (Google it). Since then with the dawn of the technological era, information can literally arrive at your fingertips with the flick of a button, the ping of a news alert or by the dulcet tones of Siri.  And information equals education, right? Sadly, no.

Jamie Oliver: Anti-Diabetes Warrior
When I was young and diabetes was raised in conversation, my clumsy 11 year-old self would try to give the best definition of what I was living with, hoping it might make sense. I hadn't yet thought of Jeff.  But now that people can easily find photos of the loveable Jamie Oliver standing in front of a coke bottle with the word 'diabetes' blamefully written on the side, or shop for tasteless greetings cards at Sainsbury's where diabetes is once again the butt of a joke, it has become publicly acceptable to use diabetes as a punch line.  With the era of accessible information also came the era of misinformation, and the blaming of people with diabetes for their own condition.  Suddenly everybody's an expert, and diabetes is fair-game for ridicule.

I recently took to Social Media to ask Sainsbury's for a conversation about that diabetes card (and also of course to ask where I can pick up a piece from their emphysema range, or if the do an asthma-specific selection), because the joke just isn't funny any longer - not when people struggle to separate truth from ridiculous humour.  I have been accused of lacking a sense of humour and of needing to lighten up, but here's the thing, if teenagers stop being bullied due to the image that 'diabetes' now has, or people with type 2 stop living with constant stigma as a result of me temporarily shelving my sense of humour and arguing the point, so be it.

The fact is the Sainsburys card isn't even particularly offensive. It's tasteless at worst.  But it insinuates and represents everything which is wrong with the way diabetes is treated both in the media and over coffee-table conversations around the world. We've come such a long way in thirty years.  Technologically we are in the most exciting season of diabetes. We are in the Summer of  advances in medical equipment and hope for a 'cure'.  But when it comes to diabetes-shaming and the way in which diabetes is used as comedy canon-fodder, we are firmly mid-Winter. We have learnt nothing in the last three decades. 

The answer is seven; Bob has seven candy bars.

Saturday, 13 February 2016

Spare a Rose: Save a Life.

There are times in life - when my cannula rips out on a kitchen counter, or my Dexcom itches at my skin from lack of air under the over-used tape - that I find myself feeling less than grateful for the medical technology which keeps me alive. When the clumpy pump won't hide under a slinky top, or my Dexcom sensor protrudes from my leg under my skinny jeans like some kind of bodily 'yuck', I find myself frustrated with diabetes and the cyborg 'kit' that comes with it. But the truth is, that 'kit' - that expensive, wicked clever kit - does more than just keep me alive, it helps me live the life that I want; the life I deserve. 

It's hard to imagine, given my fortunate life in a developed country where it is considered wholly unacceptable for any person to have to die from lack of basic necessities like insulin, that there are children and young people in this very world - the one we share with them - who live on a constant perilous precipice.  Why?  Because they don't know whether or not they will have enough insulin to keep them alive today. 

This situation, which millions of children around the world face on a daily basis, is not only unacceptable, it should be impossible.  No child should die because of lack of access to insulin. Every child deserves to live, and not in constant anguish or fear that today may be their last. Every...single...child.

A group called Partnering for Diabetes Change, came together a while back to see how we, the diabetes community and the wider population of the world, can help.  That's when the 'Spare a Rose: Save a Life' campaign was born.

The Spare a Rose campaign invites people around the world to donate the cost of just one rose on Valentine's Day, just £3, to the International Diabetes Federation's Life for a Child programme which provides insulin to those living in developing countries.  That £3 will keep a child alive for a month.  That romantic bunch of roses, will keep a child alive for a year.

Last year $25,579 was raised, from donors in 684 countries, which kept 426 children alive for a year.

On Valentine's Day, why symbolise your love for someone by buying them something which will whither and die within days, when you could declare your love with a gift which will grow and thrive for a year.  Give life.

Thursday, 28 January 2016

Bra shopping and Trainspotting

I've reached the stage in life where my brain is officially full.  Not with useful information or anything which could contribute to a long and happy career, of course.  Quite the contrary; I know nothing of politics, science or history, but ask me the theme tune to 'Captain Planet' circa 1991, or what PSSO means in knitting, and I truly come into my own.  The problem is, due to being full to the brim with theme tunes, lyrics to every Julie Andrews song and the detailed workings of how to make a strawberry smoothie (it's all in the yogurt), in order for new information to enter I have to go through what is officially (not even a little bit officially) called 'brain leakage'.

When I gave birth to the little three months ago, brain leakage of momentous scale took place.  Out went information like how to access my online banking, mathematics and the location of my car keys, and in came how to put on a nappy, the theme tune to Rasta Mouse, and who the hell Macca Pacca is.  As a result of this mass leakage, other key knowledge was lost - like why I had previously always packed spare infusion sets wherever I went.

The thing about people living with diabetes is that we are nothing if not resourceful.

It was shortly after lunch I ripped my cannula out today when a careless trouser waist-band re-adjustment manoeuvre took place.  I was an hour away from home spending a rare few hours with my best friend, buying bras to fit my post-baby body (see also: small refugee family could camp in the cups...).  I was desperate not to go home, but with an abundance of insulin in my possession and no way of administering it, I feared our day together might be coming to the most swift of ends.  Unsure of whether or not I would be successful, we hot-footed it to the local Boots, hoping that our foray into the world of well-fitting bras wasn't the end of our fun today, if we could only secure a hypodermic needle.

I explained my predicament to the pharmacist as she asked me questions about which kind of needle I would need.  Sadly that information was lost in the official (not official) Brain Leakage of 2013, when I got a new job. But between us we managed to establish that 'nothing fancy' would do.

"Would you like one of the drug user kits?" she asked, helpfully.

Slightly taken aback but glad there might be an option, I rummaged through the kits given out free to intravenous drug users in a bid to encourage safer and cleaner ways of using drugs, if they must.  With a veritable Pandora's box of thingameejigees, I eventually came across an individually wrapped  hypodermic needle.

"Perfect!",  I proclaimed as an examination of the needle showed a clear gauge on the side which I could use to draw up insulin to the correct amount.  Sheepishly (but gratefully) I tucked the kit away into my bag, hoping no-one with a knowledge of drug use might see me excitedly fumbling through the kit. 

Luckily, the lady in Boots saved my day, and my diabetes, a great deal of hassle.  On arriving home I was a happy 4.4 mmol, and pleased that I'd found a workaround for not having been prepared. But having learned today that carrying a spare cannula in my bag is absolutely vital, I only dread to think what else has now leaked out of my too-full brain...