INPUT Roadshow heads to Luton!

I can't say how many times I have seen/heard/read people wanting to know more about pumps; how do they feel, what do they look like, how big are they, can I get one?  It's hard to get to everyone at once.  Well, INPUT are starting off the 'getting to everyone' by coming to Luton and are ready for all your questions!  

If you are interested in a pump but don't know whether you qualify, want to have a poke around one first, want to know how to start the process of enquiring about one or just want to ask a question, come along on Saturday and ask any pump related question!

Any questions just let me know and I will endeavour to help out where I can.  I will be there along with members of the INPUT team and a number of the pump companies keep to show off their products.

See you there, everyone!

AP

Uncharted territory - update

A couple of weeks ago I posted about how I was trying to use new areas of my body for my cannula sites, because I am always concerned that one day my poor little sites will have had about all they can take and will become unusable. When I was on MDI (multiple daily injections) I used to use an area on my stomach to inject so often that it ended with lipohypertrophy (say that after 3 glasses of red!). Lipohypertrophy is a thickening of the skin under an injection site which can turn into scar tissue. It does this because the cells response to extended insulin exposure is to grow in mass. Unfortunately for type 1 diabetics or type 2s who use insulin, it means insulin injected into this site also often doesn't disperse properly causing lots of problems with blood sugar control. My problem was that it was totally painless to inject there, so I liked it.


Well, after two weeks of using my stomach for cannula sites I think I must have finally cracked it; apparently the lower stomach (underneath the belly button) causes no problems at all for me. I did have one kinked cannula when I was using a site too close to my hip, meaning when I sat down the insulin was being blocked somehow from getting into my body. But this hasn't happened since I've been using the 'fleshier' part of the stomach. Not that I normally value having 'fleshier' parts, but at least they come in handy.

I guess I have too much - ahem - 'muscle' in other areas; so I will tell my gym instructor, anyway.

Anyway, my advice to anyone who has been using sites as high as the ones often shown in pictures (as below), try using sites a little lower on the stomach. Not that the dude below has any fleshy bits (poser!) but if like me you have an extra inch or 20, why not have a go.  Do it on a day when you can keep a close eye on your bloods, when you are pretty stable (because then you can spot a kinked cannula early) and when you feel like the other sites you use need a break.

Good luck!

Uncharted territory

Site rotation, or moving the cannula around to a new area which has not been used for a while, is a really important part of diabetic management, particularly on an insulin pump.  Why?  Because every time we insert a cannula into the skin for three days to allow for insulin to enter our bodies, we are literally inserting a foreign body into our skin that our immune system will attempt to get rid of.  And it does that through the means of infection and scar tissue.  So kind of my body's immune system to get rid of foreign bodies, which I only have to put there because that very same immune system destroyed all my insulin producing cells.  Thanks for that, body!

Anyway, an infected site looks a little like this:

This photo was swiped from someone else's blog because unlike this rather svelte waistline, I would rather steal than get my wobbles out. But back to the point, it shows what the body can do in just a few short days.  If it were just for some short-lived discomfort, infected cannula sites really wouldn't be that big of a deal.  The problem is in the short term, infected cannula sites cause blood sugar swings, thanks to the body being insulin resistant when an infection is on board.  In the long term, and this is the more worrying for me, the sites become scarred and eventually all but useless for insulin infusion, causing massive problems with management.

Most pancreatically pants people have rules about how long we will use each site; some people go below the maximum of three days while other observe strict rotations, making sure they don't go back to a site for at least two weeks.

In general I only use my arms and 'love handles' (there is a benefit to NOT having a svelte waistline, you know!) because I find these sites the most reliable, the least painful and I have never had a kinked cannula using those sites.  But site rotation is something that does worry me because I want to be able to reap the benefits of insulin pump therapy for years to come.  Unfortunately though, I have never had much luck using my stomach with 6 millimetre, 90 degree insertion (some cannulas come with 45 degree insertion) and when I have used them 9 times out of 10 the cannula kinks at the very beginning, resulting in no insulin getting in and inevitable high sugars.  But I realised yesterday that I have never tried to use the lower part of my stomach.

Why?  No idea.

Challenge?  Count on it!

Today was cannula change day and in true stubborn form, I decided to go into uncharted waters and have a go.

So far things are good; no kinks, no pain and my other sites are grateful of the site rotation.  It is a strange feeling getting used to a new site; almost like the first time I ever wore a cannula.  But other than being acutely aware of where it is, my body seems to have no objection to it, yet.

I will be sure to keep you informed!

Featuring yours truly......!

About a year ago I was bimbling around on the Internet and happened to type into Google, something along the lines of 'Diabetes charities Hampshire', because I really had no idea what there was in my area other than JDRF South. I wasn't expecting to find much, but found myself typing it in anyway.

There had to be more than one diabetes charity, surely?

To my delight I stumbled across a charity based only 15 minutes down the road from me. Small world, ay! They are called the Diabetes Research and Wellness Foundation and despite being a small outfit, they have a big message; Staying well, until a cure is found.

Over the last year I have taken part in their Bootcamp event, have been brought to tears by their message of hope, have done a sponsored walk in their favour and have popped in for several cups of tea with their team. They make a really good cup of tea, FYI.

To my delight, they asked yours truly if I would like to write their tale end news piece for their February newsletter.

Um, would I ever!?!

I chose to write my piece about exercise because that is one of the true keys to success when 'staying well' with the 'betes, so seemed to fit quite nicely with their aims.

Unfortunately they don't have an online version, so I have copied it all down for you below. But check out their website on this link for more info on what they do and if you can, pop in for a cuppa sometime. I'm sure they won't mind......

My name is Anna and I am many things. A daughter, a sister, a wife and a friend. I love to surf and snowboard but can do neither whilst standing up. I love Autumn, Cornwall, black and white photography and animals. I am also a type 1 diabetic, juvenile onset, insulin dependent - the beast has many names. Diagnosed at the age of four, I must have been through every stage of acceptance in the book; I was the child who couldn't understand it, the teenager who fought against it, the young adult who reluctantly accepted it into her life and am now fully fledged (but still very young at heart!) adult who manages to negotiate each day with reasonable success.

For many years I struggled to achieve anything which looked like even basic control. In fact for me, 'stable' was a place you kept a horse, not something you could expect from diabetes. So after fighting against it for far longer than I care to remember, I finally took up the suggestion my team at Queen Alexandra Hospital in Portsmouth made, of trying an insulin pump. Even though the pump is still something which is only available on the NHS for type 1s who meet certain criteria, going onto a pump came with a wealth of information about carbohydrate counting, exercise and cutting yourself some slack when things go a bit 'wonky'. All of which can make a difference without ever having a pump.

Perhaps the biggest realisation for me was about the benefits of exercise. Having avoided it for many years and using excuses like 'my control just isn't reliable enough', starting exercising on a regular basis was one of the turning points in my diabetic control. I started going for walks in the country or strolling to and from work every day, all the while noticing my insulin requirements dropping almost by the day. I found that whilst cycling and for several hours afterwards, I needed only 10 per cent of the insulin I normally need in order to keep my sugars in range. I found that yoga brought my sugars down nicely every time and even my 10-minute cycle to and from work has my sugars in check by breakfast.

Earlier this year a friend even convinced me to try 'Body Combat'. Whatever you are thinking about how intense it sounds trust me, it's tougher! Imagine being with 50 other people while high octane music blares out and an instructor who apparently has limitless energy shouts through a microphone,while you attempt to mimic them (and fail drastically), all the while using moves from martial arts and - if you do it like me - 90s rave. Now also imagine that this exercise propels your fitness, energy levels, self confidence and general well-being faster forward than anything else you've tried.

So what is the key to exercising? As I found out, it is to treat it like an experiment. When trying a new exercise try to eat similar foods before and after and do it at the same time of day. Take a little carbohydrate (like a banana) before exercise to give your body a little boost, even if you need to inject for it. Be confident and don't write it off after the first attempt. It took me weeks of body combat to discover exactly the right formula and now I am at the front panting away, enjoying every minute and reaping the blood glucose benefits.

The message I want to get across is that it doesn't matter what form of exercise you do whether it is team games, high intensity cardio, a gentle stroll or even stretching; moving your body in any way allows your body to use the insulin you either put in or still produce yourself much more effectively.

And frankly, it makes you feel top notch!

The Advanced Technologies and Treatments for Diabetes conference 2012

The 7^th -10^th February 2012 saw the arrival of the international event known as the Advanced Technologies and Treatments for Diabetes (ATTD) conference, which I was lucky enough to be able to attend as a representative of INPUT and funding from Dexcom to assist INPUT in the work they do. The ATTD is a worldwide conference where research outcomes at the very forefront of technological advance are presented. Being only 5 years old it is still in its fledgling years, but growing noticeably each year. Although I was not at last year’s event, I am informed that there were around 1000 attendees. This year, there were 1600 and I’m sure there are many more who would have attended given half a chance. It is aimed at diabetic professionals (or professional diabetics, in my case) mainly being consultants, nurses and diabetes educators, although the odd advocacy service pop up here and there too!

Being an insulin pump user, a diabetes advocate and a bit of an inquisitive old lass, it is always of great interest to me to see where this diabetes technology beast is heading. We hear terms like ‘Artificial Pancreas’ and ‘non-invasive glucose monitoring’ thrown about on an almost daily basis now and yet many people in the diabetic community feel these are creatures of myth and seem to hold a ‘that’ll be the day’ attitude towards them. So to be involved in a conference where this research is being presented was an honour and frankly, somewhat of an eye-opening occasion for me. .

Clearly it would be impossible to go through each of the presentations, symposiums and workshops in detail. Not in the least because my less than scientific mind would never be able to recall all the details for you. But perhaps giving you an idea of the things that caught my eye would be of use.

One of the stands in the exhibition which I kept circling in a slightly cautious way, was that of C8 Medisensors. In case you haven't heard of them (I hadn't), they are bringing to market a non-invasive glucose monitor that uses Raman Spectroscopy technology which for those of you who don't speak 'medical journal', is effectively a light that shines through the skin and identifies how many glucose particles there are in the interstitial fluid. Phew, mouthful ay. Well, according to early tests they are showing promising results, although the last test only involved 6 people. I would need to see a significant higher amount before I would be convinced it would rival the likes of Dexcom 7+ and Medtronic Enlite. Now we all remember the success of previous non-invasive systems such as the Glucowatch, the remnants of which remains burned on the skin cells of countless diabetics who had the misfortune of using it. But this was impressive. In its current form it is a bit on the 'chunky' side, and is held around the midriff with a tight neoprene band. But for those parents out there who hate the feeling of piercing their children's skin with countless needles they have to face, I think this could be a contender. If, and only IF, they come good in clinical trials. Watch this space.

For quite some time I have been aware that in order to avoid post meal spikes I need to bolus 30 minutes before each meal, otherwise those spikes just creep in a couple of hours later. But we also know that each diabetic is different and we are told all the time to find our own way. So I was very interested in a lecture about bolus times in children using insulin pump therapy. In the results being demonstrated to the audience, the message was that 15 minutes was the optimum pre-meal bolus time to avoid those spikes. In addition to this the study, called “Fine Tuning of Insulin Pump Therapy in children with type 1 diabetes: The importance of bolus timing and type” demonstrated that making the most of dual wave boluses and separating correction boluses and meal boluses, would make all the difference. They found that with mediterranean food for example, boluses were split 70% straight away and 30% over 4 hours, while Pizza was 30% straight away and 70% over 6 hours. They also highlighted that the results of their study showed that when blousing for a meal, any correction bolus being included with the meal bolus, should be separated by 15 minutes, and that this would bring glucose down to normal via the fastest route. Fascinating stuff for me, someone who has always struggled to get my head about a dual waver

One of the key lectures for us to attend included INPUT’s very own Lesley Jordan taking to the stage. Lesley has been involved in a pioneering project to trial the Accu Chek Diaport, an intra-peritoneal (goes into the peritoneal cavity in the abdomen) infusion site which is permanently fixed (as long as the host wants it, that is). It is surgically implanted and regularly maintained and allows for insulin to be much faster acting (see number 3 on my list), removes the worry of hitting a bad site and means much better control. It may not be for everyone as it is surgically implanted but for those with site problems leading to frustration and poor control it provides a very useful tool in helping achieve control over their condition and maintain use of an insulin pump effectively. Lesley has been one of the Diaport 'guinea pigs' and thanks to feedback from her, the new and improved second generation is ready to launch.

There were also stands demonstrating the Omnipod, the Accu-Chek Combo, the Medtronic Veo and my particular favourite of the moment, the Cell-Novo. I had the chance to catch up with some old friends from Medtronic, meet new ones at Roche and Cell-Novo and had a chance to thank Dexcom for supporting INPUT and in a round about way, helped me attend such an inspiring event.

Friday the 13th

I am not a superstitious person. I own two black cats, have walked under countless ladders, I don't wink/wave or clap at magpies and seeing only one doesn't move me in the slightest. I often walk under scaffolding and I never throw salt over my shoulder, that is just plain messy. Dates in the calendar - particularly superstitious ones - mean nothing to me

But on Friday 13th January, I had an extremely unlucky day. After attending the funeral of my grandmother (you could argue that was worse for her than me but nevertheless, it was tough) I found myself having driven for 5 hours and in need of some quick fix food in the evening.

I tested my BGs en route to the shops to buy myself a Pizza and was a comfortable 8.8 mmol (that's pretty good - 4-10mmol is acceptable). I picked out my pizza and knowing how much pizza normally makes my stroppy little condition fly off the handle, injected what I would need for the Pizza nice and early, to give the insulin a chance to work before I bombarded my system with garlic bread and pizza dough.

This was all a good plan and in normal circumstances would probably have been the right way to go. However, after bolusing (delivering insulin through the pump) the amount I needed, I started to complain of how very tired I was from all the driving and asked Jamie, my husband, to take over for me.

It wasn't long before I was sat tucking into my pizza but also being very aware that the overwhelming feelings of tiredness I had been experiencing were actually a nasty hypo which had snuck up behind me without much warning. There was no shaking, nervousness, sweating, nothing. Not until this point, anyway. As my cognitive function began to slow down, leaving me with the last image I had looked at, no matter where I looked, the feelings of panic began to set in. But this wasn't like my usual panic. I usually just worry about where my glucose treatment is, but know that I can cope with it. I downed a huge glass OJ and hoped I would recover quickly.

But this time was different.

I began to convulse (something which I thought was impossible while still awake) and within moments was screaming because my mind could no longer understand what was happening around me. Jamie at this point had managed to lead me to the kitchen to wash my hands for a blood test, but that was the last time I would make any sense. Hearing the TV in the background, my mind had begun to convince me that people were in the flat. I knew for sure they were behind Jamie but he wouldn't turn around. WHY DIDN'T HE TURN AROUND?? I was screaming at him and panicking so much that he stood no hope of getting the Glucagon into me. I could barely see for shaky vision at this point, and the next thing I knew, Jamie was stood above me with the ambulance people on the phone, them asking if I was being violent (what with all the shouting and screaming).

The last thing I remembered was being collapsed on the kitchen floor, screaming and crying because there were people touching me and I couldn't see them (these were the convulsions, only my brain didn't have enough glucose in it to understand that).

As quickly as I slipped into that hypo, I was out again. Two ambulance men arrived within minutes - 3 to be exact, according to Jamie. At this point I was able to talk again, had stopped screaming and the large glass of OJ was taking full effect. As quick as that it was over. It took a while for my glucose levels to return to normal, but even after 2 glasses of orange juice I was still only 2.7mmol (anything below 3 is a serious hypo).

I can only imagine that the 8.8 I had seen only an hour before was on the way down at a drastic rate and that by the time I had taken my insulin for the Pizza I was fueling an already nasty hypo.

I have always been lucky in that hypos come and go for me with never a great deal of excitement. I haven't needed assistance for the last 10 years and expect it will be another 10 before it happens again. But it goes to show that even those diabetics who walk a reasonably stable glucose path can be struck by the odd stealthy hypo.

It also goes to show why even people with 'good' control would benefit from CGM. At the rate that one hit me, I would never have seen it coming even if I hadn't been tired, even if I hadn't eaten the Pizza.

It also goes to show that not everyone gets hypo symptoms all the time. Mine normally hit me like a freight train. This one didn't. This one went all ninja on me!

An islet of Langerhans named Jeff

Explaining diabetes is never straightforward. Most people are lucky enough not to have to know what insulin, adrenaline, islets of langerhans or beta cells are, or what they all have to do with one another. But despite not needing to know, most people do show a general interest and I love to be the one to tell them. Any opportunity to put the record straight is a bonus, as far as I am concerned.

So when I was recently out having some coffee at a Krispy Kreme with my brother and neice, the arrival of the food at the table led to the inevitable retrieval of the pump from my pocket and my brother Ben, always keen to show her knew things, pointed out my insulin pump. Intrigued as most children are about new things she piped up, "What's that?".

Now normally anyone who looks that interested in my insulin pump is fair game as far as I am concerned. The problem is, I have never explained diabetes to a 4 and a half year old and explaining an insulin pump often baffles even those who understand diabetes and know the basics of the condition. So how do you manage it with someone who doesn't yet understand what insulin is, let alone the role it plays in the body.

As I thought about what to say and started stumbling over my words and starting over again and again, it dawned on me that perhaps she thought I didn't actually know what diabetes is! Clearly going down the route of "Once upon a time there was an islet of Langerhans named Jeff" wasn't going to go in the right direction and neither would in depth discussions about the pathophysiology of diabetes and lack of ability of the pancreas to produce and secrete insulin into the bloodstream, allowing for the transportation of glucose to the muscles for energy, was also going to confuse the hell out of her.

I looked at my brother in desperation. "How do I explain this?"

"With the truth" he encouraged me.

As I journeyed with her through some of the very basics about how 'when I eat food I can become ill unless I take a medicine called insulin', and explaining that 'my robot' (as Ben described it) helps me to stay well and have energy because it gives me my medicine, it was clear that I was losing her the further into the conversation we got, even if she tried her best to look as though it made sense.

But at least at the age of 4, she has heard the words diabetes for the first time. Hopefully in ten years time, she will be correcting her school friends when they spout 'facts' they have picked up in our media. Hopefully she will be the first generation of diabetic-free people who know what the hell it is all about.

So what is the message of this story and how do you tell a 4 year old about diabetes?

I still have no idea; I just love the idea that we did it in a Krispy Kreme.