ASW2K16 video!

I've posted over and over about the value of knowledge and peer support the Animas Sports Weekend brings and this year was no exception.  As I drove home from the meet in October, the sky blackening as the early autumn nights I so love creeping in, I wondered if the other drivers on the M whateveritwas had enjoyed a weekend as wonderful as mine.

 

Just take a look for yourselves...

 

And don't forget to check out what Sir Steven Redgrave shared when I asked him about the value of Dr Ian Gallen's work.
 

 

A belated look back at the Animas weekend 2015

Somehow life has run away with me in recent weeks, but finding time to review the Animas weekend which took place back at Loughbourough University in May 2015 and give a little look at the photos from the weekend has been a 'must-do' for quite some time.  

Two years ago Sir Steve Redgrave said this about the journey he had been on since meeting Dr Ian Gallen after his diabetes diagnosis, and then going on to win his fifth Olympic Gold medal after his guidance and advice:

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

Want to find out more information for next year, so you can come along and be immersed in a weekend of fun, surrounded by people with type 1 all wanting to learn more about sport and the effect it has on diabetes, then email sportsday@its.jnj.com.

And check out the video montage of this year's exploits.

Enjoy!

Animas Sports Weekend 2015: Registration has opened!

It's that time again, when people with diabetes across the country dive for their laptops to get their registration request in for one of the biggest weekends in the diabetes calendar in the UK.  It's the Animas Sports Weekend 2015!  

The weekend is an opportunity for people with a love of sports, or those wanting to know how to manage the diabetes beast in order to try it out.  The first year I went, I hadn't exercised property in years.  The last time I exercised was two days ago, and my blood sugars stayed between 4.5 mmol and 6.7 mmol throughout my hour-long session. That's on the Animas and Dr Gallen team, having given me the tools knowledge and confidence to exercise property.

Whether you just want to be able to take a gentle stroll with the kids, or want to run an ultra-marathon, this weekend will give you the tools to start on your way. It is run by Animas (but open to people on all manners of treatment) and headed up by Dr Ian Gallen, who helped Sir Steven Redgrave train for the Olympics after being diagnosed during this run of Gold-medal achieving accomplishments.   Sir Steven was kind enough to give Insulin Independent this glowing review of the work Dr Gallen does:

"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."

Added to this already impressive set-up for a weekend, the event also offers the opportunity to meet and have an amazing time with other people with diabetes. That, in itself, is reason enough to go.  Often I hear people say they want to get fit before the weekend starts, because they are put off by the sounds of the activities.  But the weekend goes at your own pace, is full of people with completely varied levels of fitness, and is solely for the purpose of learning.  And as the fun from the activities subsides, the laughter moves to the lobby where there are guaranteed to be a troop of people propping up the bar into the early hours as they swap comical hypo stories, put diabetes to rights and form bonds that will last year after year.

So, I look forward to seeing you there! Just email sportsday@its.jnj.com to register your interest

Adventure D launch weekend!

On Friday morning 12th September 2014, after a night of minimal winks and maximum anticipation, my brother, Chris, and I made our way to CYE sailing center in Chidham West Sussex, for the inaugural Adventure D kayaking weekend!  The two day event in impossibly beautiful surroundings, would see eight fabulous people with diabetes, including Claire Pesterfield, a type one herself and diabetes specialist nurse to boot, along with a team of volunteers and instructors, take the attendees from 'never been in a kayak' to having advanced skills and being equipped with the knowledge of how to kayak safely.  

As the group started to arrive, any fears or nerves we had about the weekend slipped away as the smiling, keen faces of the fabulous group getting to know one another showed us that this was going to be a great weekend.  The weather was idyllic, the harbour was still and the gentle murmur or friendships being made set the relaxed pace for the weekend. We settled after our carb-counted meal and learned from Claire how we might adapt insulin and food intake for the water-based sessions the next day.

Saturday saw the group take to the water, starting off in practically unsinkable 'sit-on-top' kayaks, to learn about strokes, boats and safety.  Throughout the day were relaxed but regular breaks to allow for blood testing and tweaks to insulin or carb intakes here and there, and grow in confidence on the water.  The sessions ended with games - transforming the once-cautious sit-on-top users to competitive kayakers, losing any inhibitions they had in order to smash the other team out of the game, all the while donning fully-fledged Pyranha kayaks, and pulling out some professional moves in order to win the ball, catch the 'robber', or make it through the finish line first.   The laughter resounded through the harbour we called our own. Watching from the sidelines, this was the Adventure D dream come true, playing out in front of us.

After a delicious home-prepared and carb-counted curry, the group made for the local pub to share a drink with their new-found friends and to re-tell their favourite moments of the day. It was without doubt one of my favourite moments of the weekend; watching budding kayakers become friends and for some of the group, mix with fellow people with diabetes for the very first time.

Sunday saw the group of kayakers, now confident on the water and ready to put their new-found diabetes knowledge to the test, take to the water, keen and excited.  As we journeyed through Chichester harbour to the beautiful sights of Bosham, the instructors gushed about what a delight it was to teach this group. The Adventure D group.

As the Sunday came to a close and the Adventurers told us how they wanted to buy kayaks, had grown in confidence or didn't want to go home, we knew they had enjoyed it as much as we had. Every. Single.  Moment.

When I think about the first time I tried kayaking, a smile creeps across my face, and I can almost feel the warmth of the sun and the spray of the saltwater on my skin.  It was a clear day in late summer, there was no wind to speak of and the water in the harbour glistened as the rays bounced off the gentle undulating waves as the water ebbed and flowed.  That day was good.  This weekend, was perfect. 

Thank you to the wonderful people who joined us for the weekend, and made the event such a success.  Here are your best bits :)

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.

The InPuT team goes airborne!

It's no small secret that my favourite charity in this country is InPuT.  Led by patients, for patients, they are exclusively the UK's only charity increasing access to medical technology.  The team, made up of just two paid members of staff, Lesley Jordan and Melissa Holloway, aim to increase people's awareness of their rights to medical technology, and to advise them and guide them through how to obtain it, often giving them the key language and legislative knowledge which will allow people to speak to healthcare providers in a way they understand and will respond to. They also provide a key and impactive presence in parliamentary groups on diabetes and medical technology.

In 2012 I helped out at the series of roadshows the team put together, and saw first hand the powerful work they do, when a hope-lacking and frightened lady with type 1 explained that she no longer drove her car because she was so afraid of hypoglycaemia (low blood sugars).  A little InPuT advice and a letter to her team later, and she was placed on pump. Her heartfelt thank you letter said it all: that the UK needs InPuT to continue the work they do.

I've also seen how they work to keep their costs down and put the funds exactly where they should go.  Volunteers are encouraged to car share or take pubic transport to any events, and if Lesley can find a better deal for something the charity needs, she will find it.  In a world where charities come under fire for gratuitous expenses and disproportionate 'necessities', it is inspiring to see how dedicated InPuT are to what actually matters.  It is refreshing to see, and a privilege be part of.

This year InPuT need to raise funds in order to keep their dedicated service reaching as many as they do, so both Melissa and Lesley decided that there was only one thing for it: show their dedication to the work they do by jumping out of a plane!

Like this only muuuuuuuch higher up...

This coming Friday, 5th September, the InPut team (minus me, because I'm an enormous pansy-shaped flower) will be sky-diving their way to the ground in order to raise the vital funds they need, and they need YOUR help!

Check out their fund-raising pages here and here, and donate even £5 to help people access medical technology. 

Tell me, how much does your insulin pump or continuous glucose monitor mean to you?  Now imagine if your donation of just £5 could help someone else struggling to get one?

I've donated, can you help out too?

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.

Adventure D!

I was 25 years old the first time I caught my first stand-up surfing wave.  I was exactly 3 seconds older when I came plunging off it.  But as impressive as my wipe-out was, that feeling of complete elation and (wildly exaggerated) sense of total accomplishment, is a feeling I believe everyone should have a chance to experience.

As a person with diabetes (PWD), surfing had its challenges: where to keep hypo treatments; how to adjust my insulin to cater for the increased exercise; how to cater for the adrenaline of that first wave.  But with a team of people around me clued up on what to do and when, it wasn't impossible.  In fact, I barely even remembered I had diabetes as I threw myself into the waves time and time again.

Adventure sports can be a daunting prospect for a person with diabetes. But it doesn't need to be impossible - far from it.  And that's exactly what my brother Chris, a kayak and sailing instructor was thinking when he first told me about his idea to set up an organisation that would allow PWDs to try adventure sports in a safe environment - one that was mindful of the challenges faced in trying outdoor pursuits with the added dimension of diabetes. He also agreed completely as I poured over how incredible it would be to have people with diabetes have a chance to meet, share their experiences ad try something completely new together, knowing they would be safe while doing so.  And that was how Adventure D was born!

Set up officially in February 2014, Adventure D weekends and holidays will always be led by people with extensive experience of diabetes or, wherever possible, with a Diabetes Specialist Nurse (DSN) as part of the leadership team.  That means you won't need to worry that your unique management style or personal needs will be overlooked in order to to keep pace with the group.

 

Adventure D will also offer the opportunity to get together with other people affected by diabetes, whether you have it yourself, or care for someone who does. 

 

Our launch weekend will be taking place between 12th - 14th September 2014, and will be based at the incredible and unique CYE Sailing Centre in Chidham Harbour, West Sussex.  Able to cater for 20 people in total, but with interest already flooding in, the weekend will take you from never-kayaked-before to having a developing set of skills.  It will also give you the chance to mix and mingle with other people with diabetes.  This weekend is best suited to people with type 1 as the advice on offer from the DSN leading the education programme on the weekend will be more applicable to those with type 1. But the plans for the first type 2 weekends are already in place!

And this is just the scratching the surface of where Adventure D is planning to go.  Already under way are 2015 plans for more kayaking, surfing, skiing in Europe, traversing the peaks of the Lake District, sailing and even climbing!

If you want to know more about Adventure D or would like to express your interest in a spot on the kayaking weekend or any of the other events we are planning, please check out the Website, Twitter and Facebook pages.

Register your interest now!

A mother's response to Matthew Wright

My mother, Christine, is my greatest role model.  Strong, reflective, vulnerable, open and generous beyond words, she too felt the effects of Matthew Wright's recent verbal assault on the diabetes community.  And she was kind enough to put into words how his words - and the bigger problem they represent - affected the mother of someone with diabetes. Here is her beautiful guest post.

Anna has wanted me to write a blog post from a mum’s point of view for some considerable time, but it was Matthew Wright’s outrageous sound-bite about “diabetes-triggering chocolate Easter eggs” that has at last galvanised me into action.

At the tender age of “just-turned 4” my blonde, blue-eyed, slim daughter had not spent the summer sitting around eating chocolate and watching TV but had returned bronzed and happy from a 5-week family holiday in the Austrian Tirol – where at the age of “still only 3” she had walked up mountains (once to glacier-level) every other day and, to the utter astonishment of the local tourist board, had completed enough walks to earn herself a gold “Wanderpass”.

Just 3 months later, on Christmas Eve, I drove my semi-conscious, critically hyperglycaemic daughter to hospital while my devastated husband stayed at home wondering how he would find the heart to “celebrate” Christmas the next day with our 2 sons. 

Within a year of Anna’s diagnosis of Type 1 I had the opportunity to attend a week-long conference in Kaiserslautern, being both cared for (yes, we mothers need looking after as well) and educated about Type 1 along with 30 other mothers and their newly-diagnosed D-children. The age of these children ranged from 18 months to early teenage and not a single one of them was overweight. 

Every one of us mothers, however, felt both guilt-ridden and confused that their beautiful child had developed Type 1. We were all asking why – where on earth had this come from? Of the 30 children only one had a living relative with Type 1 – the 18 month old baby girl - and her desperate father (the Type 1) was so devastated - because he thought it was “his fault” - that he couldn’t yet inject his baby daughter with her life-saving daily insulin.

In amongst all the heartbreak and guilt the various reasons we mothers were putting forward as having been the trigger for the Type 1 were variously stress, shock, the coxsackie virus, a recent immunisation against measles and mumps and bereavement. Guilt, fear and lack of information is a toxic combination. I was soon convincing myself that I had over-stretched my 3-year old and that in fact the 5 week holiday and the gold medal had stressed her little body so much that her insulin-producing cells had failed as a result.

But for all the reasons we were throwing into the ring about possible causes for Type 1 we all knew deep down that our friends and neighbours who heard that our child had developed diabetes were all presuming that the reason for the condition had been “too much sugar in their diet”. They also thought that diabetes management was simply a case of “not eating any more sugar”. 

This was 25 years ago. My daughter was the only child I knew with diabetes, other than the ones I met on that conference. The kindergarten (and, later, the school) had never seen a case before and the day they had to call the helicopter to deal with her hypoglycaemic collapse practically made the newspapers. It also sorted the men from the boys with teachers drawing lots NOT to go with her in the helicopter.

So where have we got to, in Britain, 25 years on? Not very far, if Matthew Wright’s remarks are any indication.

But the D-community appears to be increasingly well-informed, supported and educated, thanks in part to bloggers like my daughter. They take the time to get alongside each other, to share information and experiences, to encourage each other and support each other during the tough times. And believe me, there ARE tough times. They are also embracing a range of new technologies that help them recover some of the spontaneity and confidence that are often the first casualties of this condition.

What neither the D-community nor Joe-Public needs is the kind of ill-informed, casual, misleading remarks that return us to the dark ages of Edwina Curry and her salmonella-triggering eggs.

I suggest that Matthew Wright sits down to a decent-sized portion of humble pie this Easter and takes the time to issue an apology to a whole community that he has deeply offended.

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

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.

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...