The deal with Animas (UK)

I have not blogged since January this year.  In all honesty, I hadn't known whether my blogging would continue given that juggling household shift patterns around childcare, an abandoned allotment and a forgotten sewing hobby had all left me feeling as though I simply no longer had the words.  When I did log on to social media the arguments, snarky comments and age-old conversations seemed to be coming up.  It felt as though there was precious little 'new' to even deal with, and the 'old' left me feeling as though I'd already spoken about that and simply didn't want to keep repeating myself with so much else amiss in my world.  The DOC felt to me as though I was no longer a member. 

But then something changed which threw me back into the DOC at full force.

Two days ago, a friend posted on Facebook about Animas in the US and Canada 'closing down and leaving the insulin pump market'.  The article, seemingly from a reputable source and using all the correct language and knowledge of diabetes insulin pump supply, claimed this was happening with almost immediate effect in the US and Canada, and the rest of the world would follow.

What.  The.  Actual.

As a member of the Animas Heroes, and (devoted) Animas customer, I was shocked and so, so saddened to read this, but had also initially missed the bit about the rest of the world.  What do you mean, you are exiting the pump market, with my product?!

I emailed one of the marketing guys at Animas and asked what impact this would have on the UK.  Within an hour, a conference call was scheduled, and the cold facts were dawning on me. 

As I listened on the call to the horrible news, I realised just how much the world will miss Animas. How much I will miss Animas.  For me, they were the leaders in patient engagement, and where other companies only seemed to want to engage with the DOC when they have a product they want advertised, Animas seemed to want more.  They wanted to truly converse with their customers; they wanted to make a difference.

Animas made it clear that as far as the UK goes, it is business as usual; they will be in place for the foreseeable, due to the way in which businesses have to be closed in Europe.  There is no immediate commute over to a competitor, and new customers are still being taken on, but with an honest disclosure about what the future looks like.  While business has been successful in the UK, the picture worldwide has not been so, and in an incredibly competitive market, it simply came to an end.  Which sucks.  It really, really sucks.  The Sports Weekend is, of course, to still go ahead.  And as a J&J weekend as opposed to an Animas one, we hope there will be more.

I was always a little of an odd one out amongst the Heroes.  Some are champions in their sport, some have run unimagineable marathons, and some are insanely Grumpy (in all the best kind of ways).  I was the one who'd struggled with weight and through my journey using sports and exercise to try and tackle those issues, had also discovered deep-rooted issues with food and dieting.  But rather than end my contract there when things got complicated, Animas - and my family in the heroes - carried on just accepting that my daily challenge was just a different kind of challenge to the others. When the end comes, and end it shall, I will leave knowing I was on the team with a group of people, a company, even, who had all their priorities in the right place. 

Any time a treatment option is taken off the table it is a sad day.  But for it to be a company as well-established and market-leading as Animas, is simply devastating.

I will miss those people sorely.

It's sad that words came back to me because something so dear was being taken away.  And yet the last two days the DOC, for me, has been a different place.  It has been a place were people are asking for advice, answers, and support. What a shame that Animas had to be the catalyst for my DOC of old to return.

How do you feel about the news that Animas will eventually close up shop?

Depression, Complications and Diabetes: Seeing the signs

It's hard to pinpoint when or where it began but it's been creeping in for some time, and the feeling is all too familiar.  There is so much in my life to be grateful for; a wonderful family, a beautiful, healthy daughter, a good job and cosy home. I go on holidays and have had a rare, precious opportunity to spend more than a year at home with my kiddo before returning to work, something people all over the world would give their left arm for.   But when the early days of depression begin, it is rarely because of dwelling on what you lack. It is a complicated issue made murkier by the swings and roundabouts of blood sugars and diabetes complications.

I spent days Googling 'Post Natal Depression', confused that I felt none of the typical symptoms, but well aware that something wasn't right.  I felt deeply connected with my child, and although I relished  (good God, did I RELISH) the moments I had away from her for a break, I couldn't wait to hold her again and make absurdly disgusting fart noises just to see her smile. I was also in the 'easiest' phase of parenting so far, when she sleeps through the night and is predictable in routine in the day.  I was finally drinking hot coffee again, the house was tidy and I could indulge in whatever evening TV I wanted, with little chance of interruption.  But despite being unable to connect my feelings with being a few months postpartum, my mood was low: correction, is low.

To the outside world I still smiled and joked.  I gushed about maternity leave and posted happy pictures on Facebook, but inside my head was whirring full of emotions fuelled by blood sugar mayhem and fears about the future.

The earliest place I could pinpoint as the beginning was visiting the Opthamologist's office, being told that they believed my Maculopathy may be developing, and further tests were needed.  I guess they have told people this a thousand times, but for me it was a first.  Casually talking about my sight like it was a sandwich I might miss out on eating, we discussed treatment and risks like they were no big deal.  Blindness and amputation have always been my greatest diabetes fears, and hearing the words out loud, looking over to my daughter sleeping peacefully in her pushchair, my mind was spinning thinking how much I would stand to miss out on; how much I wouldn't see.

Each morning I wake with a jump as the two - now three - trigger fingers jammed shut on hand, horribly shocking and a painful way to start the day.  The only relief being an operation.  That to follow the two carpal tunnel operations I have already had and the double tendinitis which needed shots and still remains in one hand.  Pain is a powerful beast.

Add to that infected Dexcom site which may, or may not, still have a piece of sensor stuck inside  my leg since May which was viewed by five different medical professionals over five separate visits, before someone had to take my hand and tell me it would be OK, as my eyes filled with tears of terror and defeat.  Eventually someone prescribed me antibiotics. It took a visit to the ER and a million tearful 'thank yous', before someone took my hand.

The pain in my left foot, like walking on a stone, may or may not be a diabetes nerve complication.  It's hard to tell given that nerve endings are tricky things to look at.  But it makes even the most wonderful walk a painful affair.  Pain is a powerful beast.

In recent months I have had so much to feel joyful for, but even the most joyful moments have been dulled by the constant aches and pains of the complications which everyone tells me are 'just a part of diabetes'.  The drip-drip-drip of complications, pain and medical mysteries has left me feeling just a little broken, at a time in my life when most women talk about how pregnancy and labour made them 'think they can do anything', I feel nothing but all the things I can't do.   

"There is always someone worse off than you," Is a mantra I've tried to tell myself, but in the moments I spend trying to get out of bed without bending my fingers because they will snap shut with excruciating pain, or the moments where the GP sends me on my way telling me to lose weight, without investigating any of the issues further, I find it hard to take a whole breath.

I don't know if I am depressed.  But I do know that I am a person with diabetes coming to terms with the possibility of permanent chronic pain from repeated inflammation issues. I am the mother of a baby trying to get my head around the fact that my eyes might not keep going forever.  I am the 33 year-old who has to take each step down the stairs one at a time in the morning because her foot, and swollen joints feel particularly painful today. I am 'the diabetic' gasping of thirst because her postpartum tiredness meant she slept through the 'HIGH' alarm on her Dexcom, the Dexcom she currently resents because of the sensor-might-not-be-sensor still stuck in her leg.

I am human.  And part of being human is that I am feeling ever so completely 'diabetic', right now.  As though that is the biggest part of me. Maybe the only part - the rest having been chipped away by a disease I can't escape. I am afraid.  And that's OK to say.

I don't know what the future will hold, but I know that endorphins and 'saying it out loud' can only serve to help.  Small goals at the gym, spending time outside and perhaps re-immersing myself in the community I have turned away from will help.  

For now, it's just one day at a time.

Animas Sports Weekend 2016: Part Two

This May just gone I had a little too much going on to manage to make it to the Animas Sports Weekend.  So this October, when the new-format weekend takes place on 8th and 9th October at Loughborough University, I will be there with bells on.

 

The weekend has been going around five years now and continues to draw people in time and again. Those who are there for the first time build friendships that last a lifetime. Those who have been before, want to go again.

 

Sports Advice

 

Exercising with type 1, particularly for those unfamiliar with exercise or those doing exercise which pushes them to new levels, is a tricky business.  Hypos, hypers, aerobic, anaerobic, diet, muscle repair, insulin dosing: the whole shebang can baffle my brain.  I've been on a number of occasions thanks to the relationship I have had the joy of developing with Animas but every time I go, I pick up something new.  Each time the knowledge and research by people like Dr Ian Gallen (who helped Sir Steven Redgrave reach his five gold medals at the Olympics) and Dr Alistair Lumb, deepens and broadens, so even if you've been before, there is more to learn.

 

Peer to Peer Time

 

Undoubtedly one of the highlights for me in going to the weekend is the joy of mixing with other people with type 1.  Learning from them, laughing with them, synchronising hypos; every bit of it is a joy.

 

Very few events in the type 1 calendar give the opportunity to mix with so many people living the same condition, so this weekend is socialising gold. It literally leaves you with the warm and fuzzies and 'fills you up' for months more living with diabetes.

 

Inspiration

 

Ever heard of people like Roddy Riddle, the type 1 Scotsman who made the 150 mile Marathon De Sables his bitch?  Or Claire Duncan who takes on ocean swimming or coast-to-coast in one day cycles (this woman eats marathons for breakfast)?  The team of speakers that Animas puts together could inspire a nation to get on their bike and give it a go.  And best of all, they are ridiculously wonderful people to spend a weekend with.

 

Alcohol

 

Because, there's a bar, obviously (hic).

 

How to get registered

 

Whether you are new to exercise, struggling to manage blood sugars in your normal exercise routine or stepping up to the plate for that marathon you always wanted to do, this weekend is for you.  The exercises are adaptable for those just wanting to try them out and for those wanting a challenge.

 

Registration for the weekend starts on the 1st August, when the link on this page will go live.  Spaces fill quickly so don't sit on the fence - hurdle it and give it a go.

 

Want to know more?  Then I guess you'll just have to come and see for yourself.

 

See you on the 8th October!!

 

Pump failure: pregnancy panics and the cocoon of the DOC

It took me a good six months to trust the technology after switching from injections to insulin pump.  And at first there were a great deal of bumbling involuntary midnight cannula changes, kinky moments and at times I was sure my equipment was trying to kill me .  But slowly and surely as my HbA1cs came down, my hours of valuable sleep went up and my quality of life started to soar, it wasn't long before I would have made for the mountains beyond Rio if the NHS had tried to take my pump back.  It was mine: managed by me, and part of me.  

Fast forward five years and with the introduction of Continuous Glucose Monitoring (CGM) into my life and a growing baby in my belly, and the idea of coming off my technology, even briefly, gives me the shivers.  Granted, I dream of the day when I'm no longer tethered and catching my go-go gadget pancreas on door handles or unsuspecting strangers I stand a little too close to, but my choice to remain on a tubed pump indefinitely is based on five good years of a happier, healthier me.  And my choice to use an Animas Vibe which can integrate the Dexcom CGM I use, as well as being waterproof, is a decision I've never looked back on.  

But I still like to moan.  I am British, after all.  Diabetes, particularly during pregnancy, is extremely tiring.  There is no time to burn out because the kicking, wriggling bundle of joy in my belly means there is no taking my eye off my diabetes - well before and beyond the nine months that little hitch-hiker is mooching its free ride.

"I'm almost looking forward to the burnout after baby is born", I joked, bobbing around the swimming pool with my best friend of 22 years.  "I might even take a pump break.  I'm so tired of having to change the reservoir so often now that insulin resistance is in full swing." I said, not so jokingly.

Be careful what you wish for.

Three hours later and with a slightly watery reservoir change having taken place halfway though our spa day, my pump was making some pretty freaky noises.  The kind of noises a distress call from Wall-E might sound like if someone tampered with his electrics.  Noises which I instinctively knew would make for a long and worrisome night.

Driving home I un-hooked my pump, because the semi-permanent not-very-rhythmic vibrating it seemed to be favouring, teamed with the intermittent squawking gave me little faith that I wanted to be connected to a malfunctioning pump with a full reservoir of insulin.  As I reached my home I dashed inside and dialed the number for Animas, knowing that at 5:45pm it would be the support team over the pond in the states I needed to speak with.

While on hold I took a photo snapshot of my basals profiles (which thanks to insulin resistance are barely recognisable and certainly not memorable since the last trimester of pregnancy kicked in), just in case my pump died all together.  This was my best move that night, given that five minutes later while running some checks on the pump, the buttons gave up all together meaning the basal menu was firmly out of bounds. After a few checks and the inevitable diagnosis that my pump was kaput, and the Animas team had fired off an email to the UK office that I would need a replacement ASAP. Awesome.

But that was really the easy part.  Now I just needed - while 7 months pregnant and with diminshing leels of insulin in my system - to figure out how the hell to make the transition back to injections.  I had, of course, ordered in some spares of my pre-pump insulins Lantus and Lispro when I fell pregnant, knowing that this day may come, but remembering what the hell kind of pattern I was in, when to take the background insulin and how long it might take or that insulin to kick in, felt overwhelming. My last (unsuccessful) pump break had been 4 years earlier and had seen me back on my pump within 8 short hours, so my track record for this kind of manouevre was not good.  Ordinarily I would have just fumbled my way through, but with each swift kick to the inside of my abdomen, I was reminded why this would not be the ideal time to experience my first adult diabetes-related hospitalisation. It was not a time for 'winging it' or making mistakes.

I quickly took to social media as fast as my fingers could type, because having called my clinic a good two hours after they had closed their doors I'd found no-one there to speak to for advice, unsurprisingly.  It was then that I started to panic.  And it was then that the cocoon of the Diabetes Online Community came to life.

Within an hour of frantically typing out my garbled requests for advice I had friends from Devon offering me spare pumps and 'strangers' (whom I feel connected to in indescribable ways) wishing me well.    An hour after that diabetes nurses were offering me advice on what to watch out for and when to test.  An hour after that I was tweeting messages to one of the lead specialists at my home clinic.  An hour after that I was texting my very own consultant for help after a fellow blogger offered me their number, having read about my situation online.  And an hour after that I had administered the insulins I needed and was settling in for bed, feeling secure with the advice I'd received, and that the remaining CGM technology I had going strong would help me keep an eye on my levels overnight

I woke up 2-3 hourly during the night, and managed levels of 8-9mmol throughout.  Higher than I would have wanted, but acceptable considering the back-story.  The next morning the inevitable rise started as the Lantus still had to take effect (having learnt on SoMe that it can take up to a week to become truly stable!), and the two-hourly injections weren't quite keeping me where they should.  But, five hours into the day and after a desperate call to Animas were I firmly played the pregnancy 'card' (cheeky, yes.  Shameful, I don't really care...) and begged them to get the replacement to me that day, and my new pump had arrived. Thankfully, they did.  They probably heard from the wobble in my voice that of all days to go the extra mile, today would be one that truly counted to one very tired and frought person.

The next three days were a roller-coaster of results from the initial highs to the eventual too-much-insulin-sticking-around lows, but my pump was back on, and the baby playing bongos on my kidneys was telling me it was worth it.

Without the DOC I would have muddled through somehow.  But that was how I spent my childhood and teen years, before Social Media became a part of the arsenal I use to manage diabetes; I muddled through.  Since the DOC emerged, and at times like this, it helped me feel safe, secure, empowered and in my time of need, cocooned.  And for that it is worth its weight in gold.

European Blogger's Summit: how YOU can get involved!

Last year I was lucky enough to able to attend the European Blogger's Summit in Barcelona because of the work Insulin Independent has done with Animas (hosting the event) over the past 3 years. It was an insightful and informative experience with fascinating information on how to increase traffic to blogs, but as a group the overwhelming feedback was that we wanted to really open up a dialogue with each other about the local challenges faced by our respective communities; communities which once a year are stripped of their geographical boundaries and amalgamated into one truly global community. This year, Animas gave us a day, several pots of coffee and a place to talk: the rest came down to us.

What became overwhelmingly clear as we came together and began to talk about the challenges was that while we often face many of the same general hurdles - like access to medical technology, political battle or stigma - the ways in which those challenges play out locally, can be very diverse.  The purpose of this meeting was to share our experiences with each other and this year the question which repeatedly raised its head as each blogger took to the presentation stage was this: is there a way you can help us?

But as diverse as the group of people who came together were, we are by no means a true representation of the diabetes community.  We are just a few faces of a community whose reach expands across the world.  So rather than just give you a run-down of the topics we covered, this post is about how YOU could also get involved. 

Spare a Rose

First up Kerri Sparling talked about the Spare A Rose campaign which took the online communities by storm earlier this year.  The idea behind the campaign - started by Partnering 4 Diabetes Change (P4DC) and supporting the International Diabetes Federations's (IDF) Life for a Child movement - is that during the highly commercialised event of Valentine's Day, rather than buying a loved one a dozen red roses, instead give the 11 roses, and give the equivalent cost of one red rose (around $5) to the Spare a Rose campaign, which, through the IDF, provides insulin ad education to developing countries where not only is insulin desperately hard to come by, it can keep a child alive for a month - just for the cost of one red rose which may wilt and die within days.  Spare a Rose started in America in 2013 and raised an impressive $3,000 in its first wave.  But by Valentine's day 2014, it had raised over $24,000, involved more than 24 countries and reached around 8 million people via social media attention.  Just imagine what it could do in 2015?  So if you tweet, blog, give to charity or feel passionately about the situation in impoverished countries and realise how lucky we are to have a butter compartment stocked full of life-giving insulin, then please give whatever exposure (or donation) you can to #SpareARose.  

#ShowMeYouDiabetes

From Italy we learned from Biagio Barletta that they had been working tirelessly on a campaign to educate and awareness raise about life with diabetes, using Twitter as a platform for change.  On the back of the incredible #ShowMeYourPump campaign started by Miss United States of America hopeful Sierra Sandison (Idaho) which took the world by storm during the Summer of 2014 and saw people 'outing' their pumps in a bid to break taboo, Italy are going one step further.  They ask that every day you post a picture on Twitter of YOUR life with diabetes; what it means to you.  Do you use a pump?  Can you share a fact?  Do you want people to know what a blood test looks like?  Then do it, using #ShowMeYourDiabetes.  Make the world see what diabetes really is.  

Parliamentarians for Diabetes Global Network

Renza Scibilia, representing Diabetes Australia as well as her blog, Diabetogenic, talked about Parliamentarians for Diabetes Global Network - an advocacy programme established by the International Diabetes Federation (IDF) in December 2013.  Renza asked bloggers to highlight this Network of parliamentarians who established eight global aims which, amongst others, include eliminating stigma towards people with diabetes, encouraging governments to make active efforts to meet targets set by the World Health Assembly, to provide a platform for dialogue and to work towards urgent action.  How can you do this?  Through the power of your local Member of Parliament.  By linking with them and highlighting the urgency, need and global importance of this network, we can show them why the PGDN is a commitment they can, and should, make.  The Network is only open to parliamentarians so the power is within our hands to bring this powerful and potentially influential network onto the radar of parliamentarians. 

Bringing community for people with to Germany

Ilka and Finn from Mein Diabetes Blog, and Tine from I Can Eat Everything were taking part on behalf of the fast-growing influential German diabetes community, and Ilka presented about the lack of events and come-together occasions for people with type 1 in Germany, and the isolation she felt on walking into an event for diabetes, and being the only person with type 1.  Ilka demonstrated the power of the diabetes community when she approached sponsors to ask for  funding for a diabetes event specifically for people with type 1, and a few months later arranged an event attended by over 180 people from across the country. So if you want to get involved in more events for people with type 1, keep an eye on these  blogs.  Ilka also spoke about the changes going on at MySugr headquarters and new developments of the already wildly popular app.  They look like they could truly make waves in engaging even further with their communities, so keep your eyes peeled!

Adventure D, peer reviews and psychosocial support for people with diabetes

And finally representing the UK The Grumpy Pumper's Chis Aldred and The Understudy Pancreas' Annabel Astle told of their extensive work in the last year with Diabetes UK, JDRF and healthcare professionals in the NHS to help shape services and education.  In particular, Annabel spoke passionately about the Peer review processes she had been involved with to look at the diverse experiences of paediatric care and services in the UK.  

I presented about access - or lack thereof - to psychosocial support within diabetes clinics, and the way in which people experiencing any psychological challenges have no clear path with which to access services available within the  NHS.  This is a project with Ninjabetic's Laura Cleverly at the helm, and the project is so very in its fledgling form that I am not yet ready to share what the next steps are for us locally, but as was intended with these groups, we were already able to learn from the global communities around the table about how they had started these processes within their respective communities.  So watch this space! 

And finally, I told the group about the success of the Adventure D launch weekend (more on this, later).

As the summit drew to a close a list of actions were compiled and plans agreed as to how to move our respective projects on in the coming weeks and months.  

It's not often the  global diabetes 'online' community can come together to become  a global 'offline' community, but when it does, it is a powerful thing. And as the mandatory group shot was taken and the event came to an end, a promising future of global focus on local challenges was emerged.

Adventure D launch: come and be part of it

When I fist posted about the start of Adventure D, a project my brother, Chris, and I had started, we were taking a gamble as to whether or not people would agree with us that people with diabetes should have more opportunities to get shoulder-to-shoulder and try adventure sports.  As it happens, we didn't need to worry so much.

Our first weekend, a Learn to Kayak weekend, being held at CYE Sailing Centre in Chichester Harbour, is filling up beautifully...but there s still space!

To explain a little more about the weekend, it is a learn to kayak weekend on 12th - 14th September, which will take you from basic to advanced skills, with freestyle games sessions included using the techniques you've developed.  All equipment and tuition is covered in the cost of the weekend so you would just need to bring yourselves and some basic personal must-haves which we can tell you more about.

The weekend will include a talk on exercise and blood sugar levels from Lead Diabetes Specialist Nurse Claire Pesterfield, who has type 1 herself, and who has climbed Mount Kilimanjaro!  She will give advice and information on the effects kayaking is likely to have on blood sugar levels, to give you an idea of what changes you may want to consider making to your insulin dosing.  This will be put into practice on the Saturday and Sunday across three sessions.

 

Food is all covered in the cost and will also include any hypo treatments you may need over the weekend, as well as there being 'hypo stations' in case sugars drop throughout the day.  The food will also be carb-counted to make everything just that touch easier. In the evening there will be some free time to explore local pubs or chill out in the 'snug' which is a mini cinema style room on the ship.

 

The accommodation is amazing and probably unlike anything you may have seen before.  You can see photos here, at the bottom of the page. The TS Resolute is a multi-purpose floating accommodation vessel with two decks; the lower deck containing the accommodation and snug (cinema) and the upper deck housing the conference room with 180 degree views out over the harbour.  Rooms are new, clean and bright, and all have en-suite facilities.  The cabins have ample room for two people to a cabin (which will be single sex unless you know each other and choose to stay in a room together) allowing you to get to know other people with T1 from the moment you arrive. 

 

The cost of the weekend including all the above is £150 pp which, as mentioned, covers tuition, accommodation, food and the informative talks.

There is still space so if you feel like joining the group for a fantastic weekend, just get in touch at info@adventure-d.org.uk

See you there!

Animas Sports Weekend 2014...

I've been talking about what an incredible experience the Animas Sports weekend is for two years in a row now, and you can find my rave reviews here, and here.  This year, I wanted to shake things up a little.

This weekend is one of the most looked-forward-to events in the diabetes calendar, and I'm running out of ways to say how great it is.

This year the talks were incredible, the people were inspirational and the weekend as ever, was one you don't want to miss.

Thank you to all the incredible people who let me have access to their photos, including all the twitter folks, Animas and Rachel, for letting me show you what the weekend is like through everyone else's eyes.

So check it out, here.

And for Triathlete Terrence Teixeira's top 3 tips from the weekend for understanding diabetes and sports, check out his video here.

2013: Making friends with Sir Steve Redgrave, The World's Smallest Emergency and turning 27

As we say goodbye to the year just passed and welcome in a new year one, I thought I'd run down the fun and frolics I got up to this year as part of my blogging travels.  So here it is, what Insulin Independent published this year:


In January my life was for a very small moment placed in the greatest of danger (see also: not really) when my body went to battle with an evil cannula, taking with it a fair share of my blood supply.  Luckily, I made it.  It was indeed the world's smallest emergency.

By February I'd had enough of the daily grind that diabetes entails and did what any girl in my shoes would have done; I went shopping.  Fortunately my lack of interest in handbags or shoes meant hubs was happy for me to buy myself a Dexcom with our hard-earned wine and beer money.

In March I attempted my first ever VLOG about steel cannulas.  It went well, I think.  See for yourself.

April saw me climb up a Scottish hill and recorded myself trying to master diabetes at the same time. And I rocked some charming head-gear.

May brought with it the delights of the Animas Sports Weekend.  This time I was asked to stand up and tell my story, one of weight-struggles, diabetes and how I used the skills Animas and Dr Gallen, Sir Steven Redgrave's personal physician, brought me to help start shifting my less-than-lovely love-handles.

In June Insulin Independent interviewed the crazy (but lovely) Roddy Riddle, who competed in the world's toughest foot-race with type 1 diabetes.  Although I doubt we'll ever be jogging partners, I'm still in awe of Roddy's inspirational journey.


July saw old faces, ones long moved-on from my diabetes clinic, come back into town.  Faces who reminded me of my years growing up with type 1, and how their support meant I didn't turn into a total basket-case. Not a total one anyway.  Yet.

In August I took on the deeply profound and socially important subject of face-cannulas.  Be prepared. 

By September Sir Steven Redgrave, arguably Britain's greatest Olympian, and Insulin Independent were on first name terms.  Weeeeelll, in fact he kindly took the time to share some thoughts on his journey with diabetes, and share wisdom on what Dr Gallen helped him achieved.  

In October the bright lights of Barcelona beckoned as myself and some of my favourite diabetes bloggers from around the world met as a group to talk about all things diabetes. My highlight of the weekend (other than the many delicious Spanish wines I tried) was talking about what we

hoped to achieve in the next year. 

In November I bared my soul about my issues with food, overeating, and struggling to battle my diabetes demons. The love you showed me in your emails, in person, and in your comments, overwhelmed me.  

And to round the year off on Christmas Eve, I turned 27.  And looked back at the journey.

Thank you for joining me.  Happy New Year and here's to 2014!

27

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.  

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

How do I tell him...?

Thanks to the wildly inaccurate media reporting of type 1 diabetes (and at times, even type 2) there can now be a minefield of social stigma and misconceptions the size of a moon-craters to wade through when trying to talk to someone about your diabetes.  If you are lucky, the person you are talking to will have an open-mind and the willingness to learn.  At worst, you may have a battle on your hands.

But there is one time when being able to explain your diabetes really matters; to someone you might be getting into a relationship with.  While they should also perhaps be the ones most willing to learn about you and your many facets, they are probably also the ones who you want more than any other to understand you - truly understand you, their view untainted by the damage we all know the media can create.

Recently one of my Independent readers contacted me to ask me about exactly this situation. Having got talking to someone she likes, she's now trying to cross 'the diabetes talk bridge' and needs your help. How to drop it in conversation?  When the best time is? What to say? And how to replace years of wacky reporting with our version of events?

So ladies (and gents), to help out a fellow DOC member trying to navigate this sometimes tricky road, how did you start that conversation with your significant other?

T1 Pizza night. Omnomnom.

I was lucky enough growing up to come from a family where every direction I turned there was a pillar of strength to help me cope with diabetes.  It wasn't until I turned nine that I met someone else my age with Type 1 who would truly 'get it'. But seeing as he was a boy it was unthinkable that we could be friends.  At nine years old, all boys are gross.  Everyone knows that.

Now in my 26th year with D and through the wonders of the internet, I finally have an abundance of ways to find others with type 1 to put the world to rights with.  And man, I did not realise what I was missing.

In June this year my friend Michelle - part of the Animas Sports Weekend massive - decided to arrange a T1 night out in London.  Boys were on the guest list too, but this one turned into a girly one as the boys wussed out and left the socialising to the pros.  Seven of us hit Clapham Junction Pizza Hut (yes, you heard right, people with diabetes eating pizza) for a night of carbs, wine, laughs and letting down of the hair.

As usually happens when a group of people with Type 1 meet, it takes only minutes before we're laughing, joking, sharing and becoming friends.  From all walks of life, perhaps we may never have had the opportunity to meet if we hadn't been hit with the diabetes stick at some point in our lives.  Now, we would enjoy sharing stores, comparing diabolical blood sugars (somehow the only two with CGM managed the worst BGs, ), ordering carbs with extra carbs on the side, and learning from each other about new ways we might manage the beast.  And that was just the D-talk.

Three hours later and after a whole bunch of wine (the correct measure of wine by law) I boarded my train with a distinct 'wobble' in my step, thinking about the evening we'd shared.  We can file it under 'A good night was had by all'.

Fancy coming along next time? Then join us October 12th, Clapham Junction Pizza Hut at 7pm.  Bring insulin.  Just mention you are coming so we can order a table big enough and have them order in enough pizza dough and wine.

See you there!

CWD Friends For Life 2012: Hope and Onesies

In 1995 an inspirational man named Jeff Hitchcock, the father of a little girl who had a disease called type 1 diabetes, decided he would use this quirky new thing called 'the Internet' (which he claimed would be a 'big thing') to create a website where parents of, and children with, the condition could talk to one another and find friendship and support.  It quickly caught on and before long became an institution to its already devoted members and growing number of people looking for just what Children With Diabetes could offer; unity.

Five years on in the year 2000, a lady named Laura Billetdeaux, herself a member of CWD and parent to a young boy with T1, posted a simple message that she was heading to Florida and should anyone wish to meet her there, she would be waiting.  Laura is a person with whom you immediately feel at ease.  She is confident, and warm.  On that fateful day 500 people felt the same way and descended upon Florida where the annual Children with Diabetes event, was born.

Almost two decades on the CWD conference, now dubbed 'Friends for Life', draws hundreds of families from across the United States on a yearly basis. For parents it is a place of companionship, learning and support. For the children, it is an opportunity to let down their hair, rekindle old friendships and have fun just being a kid. All food on offer is carb-counted, green arm-bands show membership to the club and hypo stations dot the halls, making it the safest place in the world.

Four years ago CWD came to the UK and this, was my first year. 

The buzz on Friday night was electric as hundreds of people excitedly arrived at the Beaumont Estate hotel in Windsor.  Which room you were in or what the hotel was like was secondary, this was a time for finding old friends.  And making new ones.  As the sea of enthusiastic people ebbed and flowed through hallways, the atmosphere was thick with excitement. 

The sponsors Animas, Medtronic, Cellnovo and Accu-Chek were out in force with balloon magicians (most awesome CV title ever!), face-painting, cuddly toys and an X-Box Kinnect to keep the kids suitably pumped (no pun intended!).

People, having a ridiculously wonderful time!

Olly Double, everyone's favourite comedian and T1 parent, whom I had the pleasure of meeting at the Spring Wellness day a year ago, opened the floor on Friday with a his brilliant stand up - including an audience-priming version of H-Y-P-O (to the tune of YMCA). Any opportunity to look at the brighter side of diabetes (yes, there really is one) is a welcome event.  Then it was drinks in the bar and off to bed.

Saturday began with an inspirational talk by DiabetesDad  Tom Karlya which kicked off the day at 9am.  By 9.13am, the first tears rolled down my cheek as he told the story of his daughter's diagnosis when  - in his words - she had IVs in both arms and was asking him to 'fix'. He told us with conviction that diabetes 'just won't do' and asked us to take responsibility for looking out for each other.  As the parent of not one but two T1 kids, he told us with the most admirable honesty about the mistakes he had made over his years (right there with ya, Mr K).  Between the laughter (he tells one hell of a good story) and the tears, there wasn't a dry eye in the house by the end.  

The weekend progressed with talks about advocacy, balancing food, exercise and sick days along with a host of other sessions packed with information to help build an arsenal of weapons with which to take diabetes on. We were taught how to avoid spikes after meals by all-round dude Gary Scheiner and how to negotiate family life with diabetes by the most 'New York' New Yorker you'll ever meet, Joe Solo. InPuT presented our own talk on how to get the best pump support (with my own section on Managing Expectations and how to avoid Competitive Parenting).  But for me the session which stood out above all others was one in which two psychologists, Jill Weissberg-Benchell and Korey Hood, led a group talk on Avoiding Burnout. Guaranteed to be a highly-emotional session by virtue of the subject matter, when the first person spoke with their voice already cracking I knew this would be nothing, if not a session to connect us.  For a precious hour we shared stories, offered hope and connected with people    who 'get it'.   Finally, Lesley Jordan profoundly said, "My purpose of being on this planet, is to do more than get a perfect HbA1c."  The room agreed and for just a moment had not a single word to add.

Learning from each other how to avoid burnout

As Sunday came to a close and the final talk, jam-packed with hope, was given by Jeff Hitchcock himself, I couldn't remember the last time I had cried so freely, re-charged so quickly and connected so deeply.  People you had never met before, and might never again, took the time to smile and be your friend.  The kids and young people, in the wonderfully inexplicable way only kids can, launched a mini-craze within the world we had created of wearings onesies 24 hours a day.  And as I basked in the glow of the event and looked on as the last of the revellers peeled away, emptying the fridge of the hotel's remaining complementary Diet Coke as they went, I knew, this weekend would not be forgotten.

This will not be my last Friends for Life.

The Input team, confusing the 'Madness' dance with the one from Blues Brothers, at the Roche 'disco'!

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.