Sunday, 19 October 2014

CGM: A happy distance

Since the first time I inserted a Dexcom sensor and saw my 5-minutes-apart glucose readings flash up on the screen in front of me in real time, I have never looked back. It was a commitment, deciding to self-fund the arguably expensive tool to manage my blood sugars, but a sacrifice it was not.  My choice to use CGM wasn't about the SafetyNet it provides, although that is a selling point in itself. Instead, it filled in the frustrating gaps I experienced when trying to gain better control.  

Going all non-integrated, again.
But last night, as I pulled myself firmly into the back of my peaceful sleeping husband, matching my shape with his, and trying to improve the already bad night's sleep I was having, my Animas Vibe, now having my CGM readings integrated into it on an almost permanent basis thanks to the convenience that brings, started to violently vibrate in the small of his back.  He awoke with a fright, and patient soul as he is simply asked, "Are you OK?"   It was the third hypo of the night, and it was the third night like this in a row. As tired as I was of treating hypos, I'm sure his tiredness was greater still.  He didn't even need to be awake.  A safety-net it is, but a sleepless night and being awoken by the endless buzzing beeping and frightful noises of the Vibe were enough for me.  I treated my hypo - a slight dip below 4.4 mmol - and turned my CGM function off, leaving the redundant but brand-new sensor in my arm. 

This morning I decided to switch back to my handheld receiver.  The downside being that I have to carry yet another device with me.  But the benefit being I don't have to keep it attached to myself, or my long-suffering husband, for a little while.  I quite often don't hear the initial beep or vibrate of a first hypo warning.  And quite often, my blood sugars are simply nudging above and below the alarm line.  That way, a slight drop in blood sugars which was always going to correct itself doesn't need to be the frustrating interruption it sometimes needs to be.  And my husband can sleep easy.

And sometimes, we just need a break from it all.

Friday, 10 October 2014

The cure? Could it be?

Diabetes 'cure' stories are ten-a-penny these days; as a routine today as collecting your prescription or brushing your teeth. Some hinge on theories or ideas still decades off materialising into anything tangible. Others - okra-cocktails and vegan-raw-superfood diets - are simply hokum. I barely register them anymore, because the psychological bashing that allowing yourself to believe that the rigmarole and emotionally-draining long-term management of a chronic condition could be over, is a bashing I am happy to forego. 

But this morning, as I stood over respectable broadsheet 'The Times' laying on the pile of newspapers at the corner shop, reading and re-reading the title, my heart started to thump a little faster, and I was oblivious to the world around me. 

"Diabetes: a cure at last" it read.

I'd seen a photo of the headline in my Facebook timeline and for the first time ever, had made the effort to pick up a copy and take a closer look at the research. In the past efforts to cure diabetes have been dogged by issues. Islet transplants overshadowed by the need for anti-rejection drugs and limited lifespan of the cells once transplanted, not to mention the 3-4 donors (passed-away people) need per diabetes patient. Stem cell researchers needing to did a way to tailor cells to each individual patient, a task so major that those diagnoses would outweigh cured patients at a rate of knots. And then there was the 'bio-hub' fiasco. A great idea, but little more than an idea, pulling at the heart strings of parents and adults desperate to see an end to diabetes. If was no more than a funding drive, aimed at bringing in the dollars before it could get underway. 

The story in today's paper, was different. It wasn't an idea. It wasn't a piece of research now setting our to address the many anomalies they identified. It wasn't a funding drive. It is a piece abut the success scientists working at Harvard - already 23 years in the making - have seen in identifying a strain of genetically modified stem cells which can be transplanted into ANY person with type 1 diabetes, and 10% of people with type 2, in large enough quantities to eliminate the need for insulin. The cells, protected within a proud capsule (think bio-hub, only already in existence) allowing them not only to be protected from immune attack, but also removed quickly if they were to stop working. The study did say that it would be a number of years before we would be using this routinely in patients, but that it is already in final non-human primate trials, before human trials begin.

Could it be? 

What's more, the article tells of how one of the lead scientists, Professor Doug Melton, chose this field of research when his son was diagnosed with type 1 at six months old. Later, his daughter would receive the same diagnosis. I liked this guy already, now, I really understand his passion. 

As I sit here in my car having thumbed through the pages of the article, my CGM alarming to tell me that my glucose levels have gone over the range I need them to be in today already, the idea that there may be an end to this one day is a dream. It seems possible, but in the murky, strange way a dream does: moments of vivid clarity followed by moments of 'naaaah, it can't be'. 

I will let the human trials commence before I let my mind set on the idea of one day not having to worry and fret my way through each day, living a life dictated by numbers, portion sizes and thinking about the future in all the wrong ways. What's more, the idea that my children, who one day may face the same diagnosis, may avoid the decades of injections, food measuring and finderpricks I have, somehow gives me peace. 

I hold on to hope. 

Friday, 3 October 2014

The rough(ish) with the smooth

I'd known when my consultant handed me my blood test forms, with a few more boxes ticked than I care to think about, that my latest set of results were not going to fare all that well.  My recent wrist operation, teamed with a trip abroad and countless (wonderful) hours at the computer arranging the Adventure D launch weekend, mean I have been wildly inactive in recent weeks and have been relying on fast food. And I know what that means for my HbA1c.  

As I approach my mid (arrrrghhhh!) 30s (wait, WHAT!) I consider more and more how I might approach a pregnancy one day, and know that in order to vastly reduce any risk of the endless list of complications thrown as us PWDs with an achey baby-maker, I know that ideally I need to get my HbA1c down towards the 6mmol or below mark.  You would think that with CGM, a pump and my knowledge of which foods do, and don't, work as well for me, I would be able to nail this. Not so.  My approach to managing the busy events of my life of late has been to use my CGM as a safetynet, my pump as a justkeepmealivegoddamnit tool and my diet has been, well, let's not even go there.

My penultimate A1c result was an attractive 6.4%.  My latest was a somewhat less-so 7.6%.  

Normally 7.6% wouldn't concern me greatly, but it highlights for me the battle that wannabe mothers have on their hands, and that no amount of 'getting by' will suffice when considering motherhood with type 1.

And it's back to the drawing board for this little goof-off.

Saturday, 20 September 2014

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.


Friday, 5 September 2014

Finger sticks and spurting capillaries....becoming obsolete?

When I was 9 years old, I punctured the tip of my middle finger for a routine-as-rain blood test.  But this one was a little different.  Rather than the usual prick-squeeze-apply, I had managed to pierce a capillary and when squeezing the finger to produce my tiny drop of blood, managed to inadvertently spatter blood right across my face, Tarantino style.  As I looked in the mirror, horrified, I couldn't yet have known that one day, while watching the film Kill Bill, Uma Thurman's face would remind me of my nine year-old, freaked out own.  Looking back now I see the humour in that.  At nine years old, that 'funny side' escaped me.

In my diabetic lifetime I've done an average of 70,262 blood tests, and as Kerri Sparling's recent post about why she now changes her lancet regularly demonstrates, this takes its toll on the nerve endings and circulation in my fingers.  The beauty of my Dexcom is that only needing two calibration tests a day, this number has rapidly dropped off.  But nevertheless, I always dreamed that one day there might be a different way of doing things.  A less, 'spurty' way.  Well, Abbott have found a way with the Freestyle Libre Flash Glucose Monitoring System!

The Libre works by inserting a small coin-sized sensor into the skin on the upper arm, and placing the receiver next to the sensor for just 1 second, allowing it to pick up the current reading glucose reading from your interstitial fluid.  It's not strictly 'CGM', in that there is no continuous reading, and there are no alarms to alert for highs or lows, but there are trend arrows to indicate the direction of glucose travel. The growing buzz on the internet forums however, is that this would allow users to gain so much more information in a much less invasive way, and that it is very much the next best thing.  Sadly it won't completely remove the need for testing as tests should still be done to confirm lows and highs, but even that is an enormous step forward to permanent bloodless testing.

Early (unconfirmed) reports suggest the system will retail at £150, with sensors costing £50 for 14 day wear, although this has yet to be confirmed by Abbott themselves.  But InPuT have reported that CE marking has been achieved and they have been invited to a release event, so rather than being one of the 'blue sky dreams' we read about as being 'just around the corner', the Libre system seems to be set for public use, very soon.  All that is awaited is release of the MARD (Mean Actual Relative Difference) data to show the accuracy of the device. MARD is calculated by comparing BG meter readings with laborartory standards. A lower MARD value indicates smaller difference between meter value and the reference value. Higher MARD value indicates larger difference between meter value and the reference value.

The only downside at the moment is that it will only be licensed for those over 18 meaning the hopes of parents that they will one day be able to stop puncturing their children's fingers, is yet to come.  I would have no doubt however, that Abbott are aware of how much this product will appeal to parents, and that bringing it to market for paediatric use is a goldmine waiting to be blown open out of the mountainside.

Check out the Freestyle Libre video below.



All in all, it looks a promising signs for fingertips!

Monday, 1 September 2014

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?