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Dear Anna,

I found some photos of you today.  Your mother showed them to me after she rediscovered the scrapbooks she lovingly created of family life as you and your brothers were growing up.  As I flicked through the cataloged memories I came across a few of you. You don't know me, but one day - in say, 27 years or so - our paths will cross. Our journeys are intertwined my friend, and I have some things I wanted to say to you.  

You are three-and-a-half in this photo and what you lack in arms you more than make up for in undeniable sweetness. You are cute as a button and starting to learn it.  You are knee-high to a grass-hopper and so very 'new' in comparison to the world you live in. Your wisps of golden brown hair are still delicate enough to be highlighted under the glow of the Summer sun.  You are learning to pose for the camera and are sporting your own version of the Baywatch bikini.  You are working it, kiddo.  

You are healthy, happy and care-free - as every little girl should be.

It is Christmas Eve 1986 in Germany now, and you are four years old.  You have inexplicable taste in clothing colour-schemes and your parents have clearly favoured the beginnings of a mullet as your hairstyle of the moment.  I'm sorry, I'm not here to help you with this but to deliver the message that it will make a fantastic conversation piece in a place called 'the Pub', a few years down the line.  You're friends will love it. 

It is a special night because tomorrow is Christmas morning; the morning every child lives for.  But you are also tired.  It is an alien tiredness - one that doesn't come from playing too long or running too far.  It consumes you. 

For you, this night will change the course of your life forever. Because tonight, in just a few hours time, you will be taken to hospital, somewhat aptly named 'the ill house' in German, where you will be diagnosed with type 1 diabetes.  

I am sorry.  A million times, I am sorry.  Your parents had already been told this was a possibility at the start of the week but were sent home to play the waiting game. They don't yet know what this truly means but they won't have to wait any longer. Tonight, on Wednedsay, December 24th, 1986, diabetes arrived.

I wish I could make you understand that it's not your fault - you didn't do anything wrong.  And I am not here to take it away - I wish I could.  But that too would change the course of your life.  It would take you away from what you will become, which -  red bikini, mullet and all - is something you can be proud of.  What I can do is give you a 'heads up' from somewhere down the line.  I can make a you a promise; that everything will be OK. 

The man helping you light that candle is your father.  He and your mother will do battle with diabetes, armed only with insulin, syringes and urine testing strips to keep you safe, with a conviction only they and other parents can possibly understand.  They rule your diabetes with an iron fist and walk the perilously narrow tightrope between 'too low' and 'freaking high!' on an hourly basis, because have been warned of what can happen to you if they don't.  The threats they have been given are too much for you to bear so for now, they carry that burden alone. They will make it a big enough part of your life that you take it seriously, and a small enough part that it doesn't become something that defines you.  Quite rightly, you have no idea how hard they work to keep you care-free. Your mother will continue to embrace you, console you, encourage you and challenge you to do the best that you can in your diabetes care, forever.  Even when you have moved away and turned your back on the home she once made for you, she will offer you her warmth to help cradle you from the hurt diabetes can cause.  Never stop saying 'Thank you', even though she doesn't ask.

You are eight, and you have now lived as many years with diabetes as you did without it.  You no longer live in Germany, having moved 'home' to England at age 7.  You have started school and now holiday with your father in Germany in the Summers, choosing to spend most of your time with your friend, Davina.  You have known her since you were both six months old, your birthdays only a matter of days apart. You have also developed a nasty habit of faking hypos in front of Davina, because the attention she gives you makes you feel special.  Davina is courageous, bright and ever-devoted to you. When she sees you go hypo she wraps her arms around you, flags down strangers for help and runs to get your brothers.  You can still recall her being at the end of the table in Kindergarten when the medic had to treat you.  That hypo was very real, very frightening and she was there - I can remember her hand on your foot. Be warned that your hypos  - the real ones - also frighten her. You will grow to be ashamed of this and the first time you have the courage to admit it to anyone, will be in a blog post on the anniversary of your diagnosis.  But I forgive you, Anna.  I know that you are confused, immature and in many ways, still hurting.  I also know that this friendship will endure.  To this day she remains your friend.  You still write her letters (although they are called 'emails' these days) and every time you see her she welcomes you with her kind, warm arms. Be grateful for her.

You are 11 now and making your way up to secondary school.  Over the next few years you will begin to take control of your diabetes yourself; administering insulin, doing blood tests and taking hypo treatments.  You have stopped faking hypos.  But in this part of your journey you will begin your troubled relationship with food - one which will stay with you until a time I have not yet seen.  The tight ship that your parents sailed when you were a child means that you have escaped all complications and appear to be carrying that on.  But you now have a focus on food that secretly hides compulsion and anger.  You will feel the darkness of depression. You will hate yourself at times because you use others as your yardstick.  

This. Will.  Not. Do.

Your weight will swing, as will your focus on health.  You will lose weight in your teens by over-exercising and under-eating, and you will dabble briefly with slimming pills.  But in your late 20s you will turn a corner.  You will learn how to exercise safely with diabetes and you will begin to understand just how and why your battle with weight is so much more complex than someone without your condition. Eventually, you will stand in front of 70 people and tell them about your journey.  In this moment, you will feel only pride.

You will also meet a girl at school.  A girl named Lauren.  Your friendship with Lauren, as with Davina, will be one that endures.  You will see highs and lows, share heartache and joy and eventually when you are 31, she will ask you to be in the room as she welcomes her son, your Godson and nephew, into this world.  This will be the most emotional and beautiful moment of your life.  Your journey with diabetes will be softened immeasurably by the patience, understanding and empathy that this girl will show you.  She makes it seem as though she knows exactly how you feel even though that can't be true.  Remember to reciprocate.  

Only real men wear tutus

You are now in your 20s.  More than two decades with diabetes have passed and you have met someone - someone who will become your husband.  Playful and kind, he will learn the mechanics of diabetes faster than you ever did. Within weeks he will understand hypos, carb counting and daily must-do routines that most young couples don't need to concern themselves with.  You will praise him for this, but not enough.  No praise for the burden he also now bears will be enough.  He will see you in hypos that both frighten and enrage him.  "Why does this have to happen to her?"

When you tell him that you are going to start wearing a piece of medical equipment on the body he so loves, piercing it with cannulas and monitors, he takes it in his stride.  He has plans for when you're 80 and he needs you around for them, so he embraces this change with open arms.  He will joke with you that it's his 'girlfriend remote'. This makes you laugh. To this day, he makes you laugh.  

You will have to talk to him about pregnancy and how hard that journey might be.  He goes with you to your pre-pregnancy appointment and holds your hand, because he understands how scared you are.  You will watch the pregnancies of others play out, wondering if you too will share the same wonderful journey of becoming a parent.  That, I can't answer for you yet, but there is no man in the world you would rather try with.  Just so you know, the man in the tutu is not your husband.  It just felt like a good time to tell you that only real men wear tutus; remember that.

You also start a blog.  The day before you start using that bizarre medical device that you probably can't even comprehend yet.  This project becomes your greatest achievement yet (other than actually getting to adulthood.  Well done, by the way). You start it for God-knows-what reason, but it becomes something that connects you with a million voices around the world.  It will become the saving of you.  

As for me?  Well, you and I will never meet, yet already we know one another.  We have shared a journey, yet the person in the photo has yet to walk my path.  We move in the same direction, but will never be in the same place at the same time. Just know this:

It will be OK.  

Type 2 taboo

I've had type 1 diabetes for almost 27 years and by the measure of time alone, I am an expert in it. I have lived each second, minute, hour and day since I was four years old with it. I will proudly posit that I know more than the world's greatest medical experts because when their day in the office is done and they put down their textbooks, journals and award-winning research and head on home, I don't.  I continue to live with it and feel it, each moment.  

That said, I am in the somewhat unique position that as a person who is obese and has struggled immensely with my weight ever since the diabetes diagnosis darkened our door, I have the opportunity to see a glimpse of the world through the eyes of a person with lifestyle-induced type 2.  I know what it's like to be obese;  I have eaten in secret because I worry what people will think of the 'fat girl' in the corner eating a burger; I have hidden myself from my husband's eyes - and touch - because I'm been ashamed of what I've become;  I've opened myself up and confided in you the psychological warfare I go into each day with disordered eating.  

'Stigma' is a word on many a tongue these days.  It is used in a way to suggest those fighting it are spear-heading a new and forward-thinking world.  We are crime-fighters out for a better world. We talk of changing futures, improving lives, turning pages; of poor media reporting and misconceptions; of re-education and using the global community as the step forward.  And yet, all you have to do is tiptoe into many diabetes forums - forums filled with wonderful, open-minded people - to begin to see that stigma is rife in our very own community.  

The language oft-used to talk about type 2s makes me hugely uncomfortable.  Because if I didn't already have type 1, I would most certainly be at risk of type 2.  It is this blame that I find so raw.  As if the guilt society places upon the overweight for not fitting into an acceptable dress size isn't enough, they are forced too to live with the guilt of having 'brought diabetes upon themselves'.  

"I won't have people thinking I brought it on myself".

"I have no sympathy with people who ate themselves into diabetes"

"I didn't deserve this, I didn't do anything to get this."

Of course you didn't.  None of us did.  But can we really sit there and say that someone with T2 as a result of disordered eating 'brought it upon themselves'?  Is it ever that simple?

In exactly the same way that someone without diabetes cannot possibly imagine how it feels to live with it without making wild assumptions, nor can someone without first-hand experience of disordered eating possibly try to imagine how it feels to have deep-seated issues with food.  It is never just a case of fat, lazy slobs eating too much and giving themselves diabetes. To think so, is to be blind to the truth.  People don't sit there and 'give' themselves diabetes; no-one would make that decision.  And if they got it from abusing food, we should be asking the right questions to understand why!

What do they go through every day?  

Why do they eat this way?  

What happened to them?  

Do they have anyone they can talk to?  

Could I help them? 

Only 70% of people with type 2 are overweight.  There are 30% of people 'tarred' with the unhealthy lifestyle brush too, just as people with type 1 are. But the answer is not to distinguish between those who got it from eating too much and those who didn't - the answer is to reach out and ask WHY they live and eat the way they do.

Perhaps I am so focussed on this issue because this week I sat with my dietician and cried as I begged her for help to address my disordered eating.  Perhaps it is because I am tired of seeing people coldly blame people with type 2 for the poor media reporting of diabetes.  Perhaps it is because I understand what it feels like to feel powerless around food.

Either way my feeling is this; people with type 2 diabetes brought on my over-eating or unhealthy lifestyle did not 'bring diabetes on themselves'.  Diabetes is a by-product of a lifestyle they live and no-one has the right to judge, mock, discriminate or wag their finger at anyone with lifestyle-induced type 2, without first walking a mile in their shoes. No-one.

And until we can rule out stigma within our own communities, we can never truly do so to the rest of the world. That journey starts at home. 

What do you think?  How do you feel about the stigma surrounding diabetes?

World Diabetes Congress 2013: standing up to stigma and starting projects anew.

When I heard that my friend Carrie Hetherington, from Tauranga, New Zealand, was heading to the World Diabetes Congress in Melbourne, I acted sharpish to make sure that she would be the first guest-poster to grace the pages of Insulin Independent.  

Carrie was the first ever person from New Zealand to become a young leader and is known not only for her dedicated campaign to change New Zealand policy of providing only one brand of glucose meter for all, she also recently won the World Diabetes Day essay competition about the future of diabetes in Nigeria. 

Making waves?  You bet.

Carrie kindly put into words what this event, and the sometimes heart-wrenching information she learnt there, mean to her.  Enjoy...

It's very hard to put the experience of a life time into words. How do you express what it feels like to spend 10 days with over 140 people from 73 countries who have diabetes? People your own age, people just like you. Testing, injecting, carb counting, listening, supporting one another, being understood in a way that only other people with diabetes can. Before I left I worried about being the first ever young leader from New Zealand, little did I know I was about to walk away with precious friends, unforgettable memories and a lifelong global family.

I was lucky enough to represent New Zealand at the November 2013 International Diabetes Federation Young Leaders Programme and the World Diabetes Congress in Melbourne, Australia. The first 5 days involved sitting through intense seminars from morning till night, working during lunches and dinners and taking short coffee breaks. We immersed ourselves in diabetes. We should have been exhausted, but we were running on adrenaline and enthusiasm, we absolutely loved every second of our sessions.

In the remaining 5 days we attended our own selected seminars at the World Diabetes Congress. People of all statuses attended lectures together and I found myself chatting to CEOs, the heads of major pharmaceutical companies, even global leading diabetes specialists. These situations would never happen for young leaders outside of the conference, we were all blown away that people of such high regards wanted to learn about our upcoming projects and had seen us walk on the stage during the opening ceremony. Being at the World Congress taught us how to advocate diabetes, how to put our condition on the map, effectively support our own countries and then extend that internationally. We were taught to change the world.

We spent days learning about the incredible research happening at a global level - the artificial pancreas, genetic testing and the latest diabetes management technology. We even had the privilege of hearing from Dr Fran Kaufman, who truly believes there will be a cure in our own lifetime because their trials are getting so close to that final step. However, it was the personal anecdotes that really moved us. Friends we had made during the first few days stood in front of the audience and bravely shared their own experiences. The situations they had faced due to their diabetes left us speechless and emotional. In China you have to fight to be able to get an education because some schools and universities will reject your application if you have diabetes; your partner's parents will likely end a relationship or engagement due to a diagnosis; and some leaders had even been fired from their jobs. In India the same stigma is rife, diabetes will seriously hinder your marriage prospects, education and survival. In other countries it is seen as a spiritual curse and medication is ignored or withheld because removal of the 'curse' is the only solution they see as being necessary. The implications seem endless, and are of course shocking to hear when you live in such a liberal country with support, technology and funding from your government.

Diabetes has the potential to destroy your future in some parts of the world. People live in fear and they hide their diabetes because of the serious impact it will have on their life. How can you create support groups and help people with diabetes when they are unable to reveal their condition in public? How can you save lives in developing countries when there is no money to buy insulin? These are the questions that remained in our minds, the things that need to change.

It is confronting to hear about these global issues when you have the same condition. But it made all the young leaders stronger, more focused and more excited about creating projects to make a positive change. You can imagine that most of the young leaders arrived with the intention of learning how to improve the situation in their own country, and most of us left bursting with extra ideas about changing the rest of the world. Our enthusiasm seemed to excitedly snowball during each day of the conference.

The primary goal behind the Young Leaders Programme is for each attendee to return to their country and successfully implement a project in the next two years, before the Vancouver 2015 conference. This project could be anything from a small support group to a camp, or a large global initiative. So keep your eyes and ears open, because 140 young leaders are about to try and confront world issues, remove stigmas and make the world a better place to live in for people with diabetes. The quote we were left with was by Mahatma Gandi, 'be the change you wish to see in the world'. What can you do to change the world? How can you help people with diabetes in your country?

If you are ambitious, excited and between the ages of 18-30. You could be chosen to represent your country at the Vancouver conference in 2015, and I'll be there talking about my projects too. Please have a look at the IDF website when applications open in 2014 http://youngleaders.idf.org/join and talk to your national member association. Before you apply, see what you can do to help in your region. How can you use your positivity to make a difference?

Young Leaders, literally flying the flag

Coast to Coast with James: wiping the floor with 'respectable'

There are some people who are placed on this earth do extraordinary things.  They train, plan, focus and commit to sporting challenges that cause others to stand aghast, because the feats they accomplish seem impossible to many.  And then there are people who take those challenges, wipe the floor with them and set the bar well above 'incredible'.  I am not one of those people, but I know someone who is.

I met James Thurlow at the 2013 Animas Sports weekend.  A bright, easy-going person with the ability to make you feel instantly at ease, James and I got talking almost as soon as we arrived.  At the time he was using insulin pens to manage his condition but he was keen to start pumping asap because as the owner of Open Adventure, an adventure sports company, freedom and flexibility were key for him.  We talked pumps, CGM and how to choose which system was best for him for hours.  As the weekend drew to a close James even offered me his help and extensive mountaineering experience to 'climb a mountain', something I have wanted to do since my discovering my desire to lose weight and get active.  When I heard from James a week ago to tell me about a sporting challenge he'd undertaken with a group of friends I was excited for him, but I couldn't have expected what he was about to say.

Coast to Coast is a 192 mile unsignposted walking route from the Irish sea in the West, to the North Sea in the East.  It is a highly popular track with keen walkers and outdoor enthusiasts and a favourite notch on the belt for people who want to push themselves to new limits.  The route consists of 12-stages, typically taking people a leg-battering but respectable 10-12 days to complete.  This was the challenge James undertook, only with a massive, massive tweak: he completed it in just four days - one third of the time it takes even the most determined walkers.

James, supported by his team of friends and family, decided that unlike the usual approach of heading West to East he would go East to West, because James wanted to 'head home'; a motivating factor in the tougher stages no doubt.  

Wearing a Medtronic insulin pump (which he started using just 3 weeks before the challenge) and a Medtronic Enlite CGM, he battled hypos, weather and rugged British countryside to bring his challenge 'home'.

Did he make it?  Well, does James sound like the kind of guy who'd let a little thing like diabetes stop him?  

Check out James' incredible journey here:

 

Mastering the temporary basal rate

Temporary basals (TBR) have never been my strong point: it's what you'd call my 'development area'. I gained a little confidence in tweeking them for my needs at the Animas Sports weekend, which went a long way in helping me grasp the TBR reigns, but I am still clumsy, at best.

I now regularly use them for exercise and when I am ill and need an increased amount of insulin to keep me in range.  I sometimes do this successfully and sometimes blindingly badly, but I give it a shot. But there is another time that I have found them to be particularly useful; when warding off an unwelcome overnight blood glucose level drop. 

There are times when I go to bed and my continuous glucose monitor (CGM) trace shows that I am dropping, or that I have been dropping and am now teetering above 'low', but a little too close to it for comfort. At times like these in the past I would feed to raise my BGs just a little. A biscuit, a piece of toast or an apple would often suffice, but in all honesty 11pm isn't a time of night I particularly want to be snacking. That's not also considering how much weight might creep on in a year from several biscuits a week to curb a low blood sugar at night. So in recent weeks when I have seen a drop or a number I'm not too confident about leaving as it is, I've been experimenting with TBRs to restrict the amount of insulin going in, on a temporarily basis, therefore allowing my numbers to level out, or bump up just a touch. 

Last night was a great example of this. At just after midnight Jamie and I crawled into bed. I'd seen a spike after my badly calculated dinner and was all too aware of the insulin I had stacked one bolus on top of another trying to get it down. Finally it was coming down, but at this time of night? C'mon! 

I was 9.1mmol (164mg/do) and showing a downward arrow. Great.  I don't want to eat because 9.1mmol is a little on the high side anyway and I don't particularly want to go up overnight. But I'm also fairly sure the downward trend is going to continue, with just a little insulin on board still burning a hole in my CGM picture. I could ignore, which would no doubt end in a 2am hypo, or I could eat, which I don't really want to do. So I opted for secret option C: reducing my basal rate to 0% for 1.5 hours. It seems a long time to be getting no insulin for, but something seemed instinctively right about it. That's something I believe us PWDs (people with diabetes) have a lot of, instinct.

I awoke two hours later all of a sudden. I don't know why, but after accidentally punching my husband in the back of the head after a bad dream, I figured I must have been low. I turned over, clawed around for my Dexcom receiver and with bleary eyes, squinted at the screen. 

Well I'll be damned. I had nailed it, spot on. The downward trend had continued. It had continued for around two hours, having briefly danced with a 3.9 mmol around 30 minutes ago and was now heading back up, nice and safely within the very respectable 5mmol (90mg/dl) range. And back to sleep I went.

Basal rates are funny things. Something which can take days to fully adjust when you make any strategical changes can also impact your blood glucose within a matter of hours. In this case I hadn't needed to eat and was able to nod off to sleep with the use of a carefully timed basal reduction. 

Game. Set. Match. 

Tis the season to get flu-jabbed...fa la la la la, la la la la.

I am a fan of the flu-jab and have it every year.  Since I started taking up the yearly offer of a free NHS inoculation I have never had another bout of flu.  And I don't mean 'the sniffles' flu, I mean flat-out unable to get out of bed, semi-conscious and unable to eat, couldn't look after myself or my diabetes if it happened again, kind of flu. I've only had it twice, but one of those occasions I can't remember at all; I have to be told how ill I was.  The other time I remember attempting to come down on Christmas morning and after 20 minutes of bumping into walls and unsuspecting family members, I keeled back into bed again.  I next woke up the following day, having totally missed Christmas. I don't fancy trying my hand at managing diabetes, cannula changes or carb-counting under those circumstances if I can avoid it.

People often passionately exclaim tell me they "don't believe in it" or "it's a waste of time", but the last people who told me that did so over the splutters and sniffs of a very nasty bout of flu that sent them to bed for 4 days and despite sharing a car journey and accommodation with them for several days, did not come my way.

For me, it simply removes some of the risk.  I am lucky that I have a Jamie in my life so risks of stealthy overnight hypos or Diabetic Ketoacidosis due to illness are lower, but to place the responsibility on him to look after me during those times is not necessary, if it can be avoided.  He isn't, nor should he have to be, responsible for looking after me if I fall ill, so if I can get a jab that will raise my chances of fighting any bugs off, is a no-brainer. It rates the same on my list as keeping a spare box of cannulas in my cupboard, or a spare needle in my blood testing kit.  It is just a safetynet.

So this morning I whipped to my GP surgery for my free jab and went on my merry way no less more than 6 minutes later.  Job done.

Do you get the jab?  Or are you in camp 'no'?

Sometimes you lose; sometimes you....lose

There are a handful of foods that I just can't win at. I've tried, believe me. But no matter what the approach (blousing before, after, midway through, split bolus, split bolus plus 200% basal for 8 hours...), those kinds of foods simply do not work for me.

This, is curry. The blood-sugar bashing not-so-superfood that makes my BGs go from 'hero to zero' in two hours or less. It will briefly allow me to think I've managed it by wafting in front of me a 6-7mmol BG for two hours and then BAM! I'm stroking the heels of 20mmol. 

But it's OK. Because this kind of meal is a once in a while kind of meal, and being able to bolus for it easy means it may feature a little too often for my waistline to handle. So for the meantime I will enjoy, correct, correct again and try not to let it ruin my otherwise delicious Eastern delight. 

What's your food nemesis, and do you still try to find a way to enjoy it? Do you still allow yourself it, or do you stay away to avoid the pitfalls of monster post meal spikes? 

Bloody Dexcom sensors: live or die?

Now and then I enjoy a little break from wearing my Dexcom sensor.  It takes commitment to wear a CGM 24/7 because even though it is a fantastic tool, with that and the insulin pump attached to my arm, I can look a little 'AI' at times.  It's a family joke that I am slowly replacing my organs with mechanical ones so that I can live forever as a machine while they wither and die, but realistically I can look a little experimental at times.  A few days off here or there, sometimes when things are going well and I rely on it less; sometimes as things head South and I need some 'alone time', can do the world of good.  There is no rule book (and even if there was, I probably wouldn't follow it).

"Ah, shit!"

Halfway through the insertion today I see a pool of blood collecting beneath the transmitter cradle.  It would seem counter-intuitive not to want blood on the sensor, seeing as it feels it should be reading my blood sugar levels, but it's not. The sensor shouldn't really be in contact with any blood, because it reads the glucose in the fluids in my tissue. And from what I've read in forums and support groups, blood on the sensor isn't always a good thing.  

"Please, please let it work, this cost me £50 and I'm on my last one!"

But I've done 'gorey' diabetes more than once, so maybe it'll be OK, right?   It'll be OK, these things are surprisingly tough.

Two hours later the alarm goes, it's time to enter my blood readings. Good news I guess, except that no matter how many times I enter it, I get this confused looking symbol:

A drop of blood and a timer.  

No matter how many times I enter a number, neither symbol disappears, and it doesn't wake up.  So I wait...and wait.

"Please... C'mon... Please..."

I leave it 15 minutes at a time, telling myself that after three hours I'll re-start the sensor giving it another try.  Perhaps the blood will dry.  Maybe if I shower it will wash away from underneath? 

Um, what now? That's new. I've not even seen this one before.  OK, well, 15 minutes it is.  See you in 15.

Fifteen minutes passes and my handset is still giving me all kinds of strange results.  The timer disappears and a 'tick' arrives, but as soon as I enter a new reading, the tick re-appears, as does the other drop of blood.  Meh.  It's pretty much a sure thing this sensor is on its way out, but the £50 note is burning a whole in my mind.  Maybe just 10 more minutes...

SHE'S ALIVE !!!!!!!

And man do I have some work to do to get the reigns shortened again.

World Diabetes Day 2013: Giving thanks.

It's that time of year when diabetes gets some extra air time as the media turn their attention to the our community: it is World Diabetes Day! It is a time for people affected by diabetes in some way to come together, make plans, educate, raise awareness and of course, dress ourselves, our buildings, our kids and even our pets, in blue!!

I was diagnosed in 1986, five years before World Diabetes Day - an opportunity to put the global spotlight on diabetes - was first introduced by the International Diabetes Federation. And dare I admit that until 4 years ago, I'd never heard of it.  Why?  Because I wasn't engaged; I didn't know the DOC even existed or that when they come together they become a powerhouse of motivation, dedication and fun! I didn't know about it, and I didn't know what I was missing.

Growing up with diabetes I didn't feel alone because my parents mastered the delicate balancing act between 'it plays a big role in our lives' and 'she's just going to be a kid, damnit'. I guess I felt unique in that I was the only person I knew who had the condition, but people didn't treat me any differently, something I am ever thankful for.  But  I knew there was an element missing: I knew I was looking for something, I just didn't know what that something was.  On the odd occasion that I ran into another diabetic it felt like meeting a long lost sibling in that we shared a connection that no-one else could understand. I would talk for hours with them, share my funniest hypo stories, my fears, my hopes, my aspirations.  I would share more with that person in 30 minutes than I would with many of my life-long friends in the whole time I'd known them.  We shared a connection: one that no-one else can completely understand.

My world opened up when I wrote my first blog post and almost instantly started spending my time speaking on a daily basis with other people in my line of 'work'.  I met a world of people, young and old, type 1 and 2, male and female, who reciprocated my very feelings on all things diabetes.  Some challenged the way I thought, some made me want to scream because I disagreed so wholly with them and others it was like meeting my reflection.  At last, I found my something missing.

We don't have Thanksgiving in Great Britain, but I always loved the idea of giving thanks for something.  So this Diabetes Day that's what I want to do; I want to give thanks for the community of people I've become acquainted with - no, connected to - in the past four years.  Thank you for holding me up when things get tough and thank you for enjoying the good times with me. Thank you for sharing my journey and thank you for letting me be part of yours. Thank you for inspiring me every day with your strength, resilience, ingenuity and creativity in dealing with this day-to-day. Thank you for encouraging me to take care of myself, because the longer I am here, the longer we all have to share a life.  Thank you for educating me and teaching me to expect more. And thank you for being my A-Z guide of how to deal with diabetes.

Thank you.

Single-handed diabetes

I'm fiercely independent. I know this because after having had a minor carpal tunnel operation on my left hand, I am all but useless. Whether it's going to the ladies, writing a text message or dressing myself, all bets are off as to whether or not I will succeed or become infant-like in my ability to complete even the most basic tasks. Even this blog post is being written through the use of the voice activation on my smartphone. At least Siri finally has a purpose greater than me asking it to 'beam me up Scotty' or telling me how much wood a woodchuck would chuck if a woodchuck could chuck wood (I'm not kidding, look it up. Siri is a smart arse,). But while I have found savvy ways to make the rest of my life easier (and entertain myself while indisposed) when I have only one good hand and one bandage-wrapped club, diabetes has proven a little more difficult to do one handed. 

As I started to move around my home after the op and learned how to navigate my surroundings with only one good hand, I started thinking about how difficult diabetes might be to manage without the use of both hands. I had taken various steps to make life easier when I got back after the op, for example, changing my cannula a day early as I anticipated how tricky that would be without two hands. But as I absent-mindedly pulled up the pyjama bottoms I wanted to wear in order to make myself a little bit more comfortable,  I managed to catch my finger under the tubing and rip my cannula clean out. Shit! Changing my cannula was exactly the sort of task I was thinking about when I considered how difficult the next few days might be. 

I stood staring at the box of Sure-T cannulas in my diabetes supply drawer feeling very sceptical. After all, Sure-Ts are a manually inserted cannula meaning both hands are pretty vital. So the only thing for it was to revert back to my quickset cannulas - the ones with an automatic inserter - that I haven't used for quite some time thanks to the repeated kinking (ooh er!) issues I seem to have with  them.

As I fumbled my way through a one-handed cannula change, choosing this time to go for my left upper arm as my abdomen didn't seem to want to play ball with quickset cannulas last time I used them, I realised perhaps this was my body's way of telling me that it was time to use a new area. I talked in my last post about the mystery lump on my abdomen and my apparent apathy to do something about it, so maybe this was a good thing. One way or another my body found a way to push me into using a site I haven't been to for a while.  Being adaptable, open to change and prepared for all eventualities is something people with diabetes often have to face, so perhaps this is just another little twist on the winding road to diabetes successful management.  

See you next time, 

Love Anna 'club arm' Presswell 

Rocks, bottoms and food-shaped shadows

As I stood on the scales this morning taking on board the eight pound telling off my scales were giving me for the choices I've been making recently, I realised something: I am losing control.  My diabetes management lately has not exactly been something to write home about.  I've been using my CGM as a disaster safety net, rather than the pre-emptive strike it can be.  I have a lump on my abdomen that I'm fairly sure is a nasty piece of scar tissue from overuse of that area for cannulas, but I have been too apathetic to stop using the area, let alone get it checked out by someone who knows more than Dr Google. The carbs I used to cut out because they led to bouts of mountainous blood sugar landscape are back with a vengeance, and my reaction to the peaks and troughs that inevitably follow is decidedly... meh.  Worst of all, the pounds I had lost in the last 18 months using the tools Animas gave a group of people at their sports weekend, are all but regained.  And I am too tired to care.

Burnout is back.

I don't generally talk about my issues with food widely because my 14 stone out-of-shape and old-before-its-time physique does that for me.  It's not exactly rocket science to know that I overeat and make poor choices. I've always known my relationship with food was... awkward... and I've known for many years that my choices can not only be bad, at their worst they are damaging.  It goes nowhere near the realms of anorexia or diabulimia, for that I am blessed.  But my battle to lose weight because of my inability to exercise self-control around food - far beyond that of any normal person - and my tendency to use food both as a comfort and a weapon, has become much more pronounced in recent weeks. I find myself so compelled to eat a certain type of food, that I will leave the house at ridiculous times of day and night to get whatever that food might be.  And I won't eat one of them; I eat four. I eat in secret sometimes and kick myself so hard when I do, because I am the only one I am fooling.

I know where it comes from. I remember times when I was a kid where I was so, so hungry, but my BGs weren't behaving themselves, so I had to wait.  And wait.  And wait.  My diabetic chocolate (before the world realised what a conspiracy that really is) was measured two squares at a time, and I had to go and run around outside for an hour if I wanted to eat them.  I could never just enjoy them for enjoyment's sake.  At other times my parents would need to feed my snacks and meals when I was half asleep, because yet again my blood sugars demanded so. I know how sorry they must have been and how sad this restriction must have made them.  I've had 'are you allowed that?' and 'you can't eat that!' so many times in my life that I use food as a channel dor my frustrations, my anger, my sadness and even  my successes. When I lose control, I LOSE control. And that's where I am now, and have been for several weeks: Out of control.

Diabetes stole from me a normal relationship with food.

But I'm not a silent partner in this and for the most part I am well aware of the issues I have, I see them and I can keep them at bay. At any time I am probably only one bad choice away from being on the evening news as firefighters take apart the side of my house to remove me by crane, but I can manage just enough self-control to stop myself most of the time. I know this, so I try to make efforts to fight the devil on my shoulder and go for option A, rather than sink to option B.

I know that something has to change if I'm going to raise myself out of the current funky state of affairs.  I get it.  I've been here before, and I will be here again.  That is the nature of managing a chronic illness that needs 24/7 attention. But with the changes that I plan to make will come better BG control; as a side of that I will feel interested again; on the back of that, the burnout will abate.  That's how it works, you see.

So how do I move forward?  We've done this before, right?

There are so many ways that years of teaching myself how to sock burnout in the mouth has shown me.  For starters, I have re-invigorated my refrigerator with mounds of delicious, healthy, low-carb foods, ones that I know help my BGs behave less like the adolescent faff-fest they've been lately.  I am writing what I am eating in my My Fitness Pal account so that I can see just how much 'a couple of cakes' really is, calorie, carb and conscience wise.  I have an agreement with my family members that every night after work, we go for a walk.  It's only a two mile loop around the village where I live, but it is a perfect 30-minute walk with hills and slopes to keep the heart rate chirping along. The pains in my legs are still lurking thanks to having regained some weight ('some', ha!), so for now walking is the best I can manage.  And I am going to go for some thorough basal testing to use the incredible CGM tool we made the commitment to buy this year.  Because using it as a safetynet while I put crisp packets in my face practically whole and three at a time, is ludicrous.

This is how I do it.  With determination, and with friends.  But it's not easy.  You know my 'secret' now, and you will know if you see me and can tell that I've gained some weight, that maybe now is a bad time.  But if you want to join me in hitting this diabetes shit out of the park, find me on My Fitness Pal at annamac1982.

Do you struggle with food yourself?  Then maybe see you there...

Surfing with diabetes: cosy toes

My recent surfing trip to Newquay with my husband and close friends was a highlight of 2013.  In fact, surfing at any time is a highlight of my year. But while I had the time of my life throwing myself into the waves and trying (with reasonable success) to walk on water, my feet took a bit of a battering.  A remarkably small cut to a toe on my left foot has for the first time in my life had me thinking seriously about my choice of footwear whilst in the water.  After a month of sensible shoes and regular airings, my toe is only now entering the final stages of healing.  Pretty lengthy for a less than 5mm cut from a tiny piece of glass that scuffed my toe.

Knowing how to look after our feet is a lesson all PWDs need to learn but if I'm truthful, I've hardly sat down with a 'Good Footcare' guide and studied the ins and outs of looking after my digits.  I simply make sure that any bumps or scratches on my feet are investigated and if I have a cut I make sure I disinfect it thoroughly. Pretty basic stuff.

But after having watched as the recent cut healed at a frustratingly slow rate and with a fair amount of pain, I decided next time I need to be a little more prepared. So I've decided that for my future surfing trips I am going to be rocking a pair of these:

At 7mm thick they are still flexible enough to feel the board beneath my feet, but thick enough to stop the scratches, bumps and scuffs from any sharp edges the beach can throw at me.  They are also ideal for winter surfing if, like me, you have a tendency to feel the cold.

Check out this site for a reduced pair you may be interested in.

Enjoy!

Mediband: diabetes alert bracelets with a twist...

My latest vlog is about medic alert bracelets from Mediband, a company who have their own neat little twist I'd like to talk about. Check it out!

And here are some close-ups for you to check out:

Puurrrrty

Perfect fit

       

A tiny section of Mediband's extensive selection of styles

And here are the company details:

In the UK 

In Australia

In the USA

Check them out!

Animas Bloggers Forum 2013: sex, cocktails and the longest long-tails one ever did see...

OK, so don't get too excited.  In actual fact there were very few cocktails and certainly no sex (that I know of!), but having spent two days with Team Animas in Barcelona this September learning tricks of the trade for making my post titles a little more 'grabby', I thought I'd give it a shot.  Hooked?  I hope so.

I had the pleasure of being invited to the second annual European Association for the Study of Diabetes (EASD) conference in Barcelona, where ground-breaking steps in diabetes technology are showcased. Last year Animas decided to bring a group of bloggers from around the world together and run a blogger's conference alongside the EASD.  Here, the DOC exchange was born and this year, I was able to make it.

A group of around 15 bloggers from the UK, Germany, Italy, Norway, Australia and the US were given the opportunity to share experiences in an environment where Animas hoped to nurture our budding blogger-type minds.  I had the pleasure of catching up once again with the wonderful Ilka and Flyn from Germany and the ever-Grumpy (but strangely loveable) Grumpy-Pumper.  I finally met Annie of The Understudy Pancreas-ness, representing families thriving with type 1, and the troupe of sporty Italians timing their visit to the EASD with the walk/run for diabetes event at the finale of the conference. And last but certainly not least, were Martin Moe from Norway, the lovely Renza, representing the Australia massive, and blogger and open session leader, Kerri Sparling.

The bloggers, flicking health and safety 'the bird'

Day one offered us bloggers the opportunity to learn a little more about what makes a good post, good.  We heard from Gareth Cartman of Clever Little Design about just how Google searches work and why some of our most beloved post titles may need a little tweaking to help us reach the widest possible audience.  We learned how to start with an idea for a post title and use Google's search word tool to explore the many terms that could make that post more likely to rate higher in the Search Engine results and how to use long-tails (literally long blog titles) to make them more unique.  Although no matter what anyone says I still think "Armageddon: Thought-train of a pre-holiday diabetic" is still a bitchin' title.  

Later on day one we learned from Michael Kuhn,, Managing Director of Ergocomprendere, how the ergonomics of a blog are key to the experience of your readers, including how the colours we use can influence the mood of the reader and how the post is received.  As it turns out, the mix of greens and pale blues I use is considered calming and trustworthy.  This, of course, all being completely intentional, and none of it through ignorant accident...

All in all it was a fantastic educational experience of how to understand a little more about the people reading our blogs. It challenged the way I think about my own blog, the bizarre titles I sometimes come up with and how I use photos to drive home the message I want to convey.  But as someone who loves to blog because of my relationship with this vast diabetes community I want to connect with, as opposed to loving blogging per se, the best part of the time away for me was undoubtedly the session 'Validating the Patient's Voice', led by Kerri Sparling on Day two.

Grumpy, fighting the urge to smile despite valiant attempts

Kerri's session was an opportunity to talk about what issues are burning away in our respective countries and communities, and establish a forum to share experiences and offer support for the challenges others face.  Renza highlighted the support Diabetes Australia needs to secure funding for an education platform for diabetes  and Grumpy Pumper's own Chris Aldred highlighted his interest over the lack of consistent information available for those newly diagnosed with type one, which began fruitful conversations on how we can identify what information people most need when they are diagnosed and how we can streamline the delivery of that information (more on this soon...).  

As with all of these events it was the connection with others, the meeting of minds and the sharing of hope that made it what it is.  Meeting others with type one or living with type on in some way never gets boring.  It helps us remember that there are other people out there like us navigating this road. We are a community and a powerful one at that.

We are the diabetes community.

Surfing with diabetes: Face-planting and packing the right kit.

When you start dating, you could choose to put on your best clothes, douse yourself in perfume and dine at the most expensive restaurant in town.  That, is a great way to get to know each other.  The other option of course is that you could, as Jamie and I did, drive to Cornwall, squeeze into a frighteningly tight wet-suit not designed for someone with a chocolate habit and throw yourselves repeatedly into the powerful battering waves of the North Atlantic Ocean.  While doing so, you will of course also face-plant the water over and over again with blind optimism, sheer determination and in an attempt to 'impress' the other.

We first caught the surfing bug when we stumbled across  Escape Surf School, back in 2007. Based under St Christopher's Inn Hostel, Newquay and overlooking Towan beach, it was a beautiful place to be for our first date.  On the first morning we immediately clicked with the instructors, Mike (pro-surfer, coach to the British Surf Team and possibly the most friendly man alive) and Will (awesome guy who's won countless competitions, coached the British Junior Surf Team and can even surf without a surfboard.  Show off.).

Wet-suit unfriendly
diabetes paraphernalia.  

Surfing is a challenging business: not in the least for a person with Type one diabetes. Let's put aside the issue of blood testing in the water (extreme aqua blood testing?) and think about where the hell you keep your glucose tabs, insulin, blood test meter and insulin pump when wearing, well, little more than a skin-tight neoprene wet-suit. Considering there is barely space for my ample rear-end, finding space for my diabetes paraphernalia is even more of a challenge.                   

                                                   

This September Jamie and I made our way back to Cornwall for our annual anniversary trip, and what better way to celebrate than to head back to our favourite surf school, catch some waves and work on our surfing style (see also: face-planting).  

Before heading into the water on day one my blood glucose was a fantastic 9.0 mmol: a great number pre-surf.  With a swig of Lucozade and the removal of my insulin pump, I surfed for the whole session with no problems, and as we got back to Escape's welcoming warm showers and Belushi's legendary burgers, I was rocking a perfect 10.0 (mmol).  It was a resounding success, by anyone's standards.  As was my face-pl...I mean, surfing.  My husband on the other hand, rocked it.

Jamie, who tells me that he is expecting O'Neill's call any day...

Day 2 however told a different story.  My pre-surf BG test revealed a 4.0 mmol and as 3.9 mmol is technically already a hypo, I devoured most of my first bottle of Lucozade before we'd even left for the beach.  I put the remainder of the bottle and my blood test kit into Escape's first aid bag, and headed in the direction of the waves. Why it didn't occur to me to take my second (full) bottle of Lucozade I will never know, but one hour in and after a monster wipe out, I felt the tell-tale signs of a hypo arrive.  I told Will I was heading in, enrolled the help of Jamie to babysit my board while I tried my hand at extreme aqua blood testing, and made for the beach.  Escape instructor Sarah had already spotted me wandering in, dragging my board behind me in a less than cool-looking way, and came to check things out. Calm but attentive, she jogged off to get my testing kit, like it was no big deal. There is nothing worse than a panicker when you are feeling hypo, so Sarah's chilled-out attitude was a breath of fresh air.   

Thank you to the photographer, for the photos...
...and the shorts!

Luckily for me the photographer, there to catch our most impressive surfing attempts (see also: watery face-plants), let me to dry my hands on his shorts because I forgot to pack any tissue to dry my fingers (worst prepared diabetic ever award?).  But then what better way is there to get to know someone than to wipe your salty, water-wrinkled hands all over their shorts?

As it dawned on me that my second bottle of Lucozade was at the top of the hill in the changing rooms, I prayed I was just tired from the surfing (see also: sea-bed face-planting). I watched nervously as the meter counted down.

5, 4, 3, 2, 1.

3.2 mmol.  

"Shit."

I looked back up at the hill I might need to climb, wishing that the last mouthful of Lucozade I just finished would be enough to raise my BGs.  I knew it wouldn't be.  

"Hey", I heard from over my shoulder.  "Here you go, have these."

As I turned around Sarah placed in my hand a full packet of glucose tablets and smiled. And just like that, her eyes were back on the surf watching the surfers get acquainted with the sea-bed (see also: beachy face-planting).

I let out a sigh of relief.  

It had never occurred to me that the surf school I learn with might need to be diabetes-savvy. I have always been fiercely independent in my management of diabetes, so other than the mandatory 'type one diabetes' on the medical form, I don't really demand the help of others, or expect them to be prepared.  But as I discovered this year sometimes, they need to be. Because even someone with 26 years of diabetes experience can mess it up sometimes.  

Wild dolphins, who swam amongst us for over an hour

My own complacency after just one successful surf could have brought me crashing to my knees and ruined a fantastic surf (see also: every kind of face-planting there is), but thankfully for me Escape Surf School were totally prepared.  Not just in the amount of instructors they have watching over our inexplicably comical efforts to walk on water, but also in the supplies they took to the beach and the speed at which they calmly dealt with my efforts to derail their lesson.

Escape, thank you. Not just for a weekend where I experienced wild dolphins playing in the harbour while we surfed, but also for being prepared for all eventualities: especially unprepared people with type 1 diabetes.

Can you guarantee the surf company you chose have supplies if you need them to?  I can tell you first hand that Escape do. 

See you next year! 

Me, apparently trying to kill Sarah

Sir Steven Regrave, or 'Steve' to his crew...

After the resounding success of the Animas Sports Weekend headed up by Dr Ian Gallen (diabetes expert in Sports and Exercise) and the Animas team, I had a little idea (smirky face). 

I wondered what Sir Steven Redgrave, arguably one of the most inspirational people with Diabetes, carrier of the Olympic Torch at the London 2012 Games and FIVE TIME Gold medal winner for rowing, might have to say about the help Dr Gallen gave him when diagnosed with diabetes.  

I dropped by his website and sent him an e-mail hoping I might hear back with just a few words about what Sports, Exercise and Dr Gallen mean to Sir Steven.  It was a long shot.  After all, I was mentioning insulin pump companies, weekends that cost money and events that Sir Steven may never have heard of, let alone know about.  For all he knew, I was touting for comments to sell my diabetes autobiography.  

But, after several weeks (apparently he's a busy chap....) I received an email I was sure was going to begin with, "Thank you for making contact, however..."

Instead, Sir Steven himself offered these words:

When I was diagnosed with diabetes and thought that my sporting career would have to come to an end I was absolutely devastated.  But with the support of Ian Gallen and his team, I was given the confidence to carry on with rowing and I was able to stay at the same level that I was at before having the condition; going on to win gold at the Sydney Olympics 2000.  I came up with the quote "diabetes has to live with me not me live with diabetes."  And that has stayed with me ever since in whatever I do in life.
Steve

Thanks 'Steve' (that feels like calling Jesus Christ, J-dog).  Hopefully these words will offer those trying to continue conquering their sports and exercise goals some encouragement to go out tomorrow and push harder, run faster and climb with more determination.

And if not, did I mention my new diabetes book, 'My diabetes Journey' by Anna Presswell.  "A cracking and moving read, Sir Steven Redgrave."

Lesley Jordan: show her your love!

A couple of weeks ago I blogged about the Quality in Care People's Award, which seeks to give recognition to the hard work put into patient advocacy by a group of nominated individuals.  You can catch up with the post here.

My passion for my work with INPUT and the team there is well-known, and I am so pleased to share that Lesley Jordan is one of the finalists!

Lesley has been working for INPUT for years, first as a volunteer and more recently as the Chairman, after having discovered the wonderful work they do in trying to increase access to medical technology for the people with Diabetes.  Lesley, herself a type 1 for more than 40 years and a pump, Diaport and CGM user, has taken the work INPUT do and brought it flying into the limelight to highlight the challenges faced by PWDs trying to access medical technology.

Please show her your support and thanks for the tireless commitment she gives to helping people with diabetes!

Vote for her here