How quickly we adapt

Have you seen that John Lewis Christmas advert on TV at the moment, where the doe-eyed little boy is counting the minutes to Christmas, apparently desperate to open his presents, only for us to discover that truly he just wants to give his own lovingly wrapped, crinkled and adorably wonky present to his parents?

Well, in a weird, completely different and only very tenuously related way, it reminds of when I first went on a pump. More specifically, when I first had to change a cannula. Why? Because when I first attached for the first time in January 2010, I was acutely aware of everything about the pump. The pump itself, heavy feeling and enormous. The tubing, which I tucked away as neatly as possible and found myself being somehow telepathically aware of its positioning at all times and most of all, I was aware of the cannula.

"Where is it?"

"Did I just knock it?"

"Has it come out?"

"Should it feel this, well, invisible?"

I knew the exact hour and minute when it needed changing; three days after first putting it on. Of course I couldn't last the full 72 hours,what with me having the patience of a chocoholic in a Lindor factory and vaguely recall removing it at about 2.5 days.

What a difference two years make. Nowadays I have the once clumsy and fiddly process down to about 10.5 seconds flat, need to give it no second thought and funnily enough, if I don't set my alarm on my phone to tell me when to change, can easily go a day or two longer before my immune system and blood glucose tells me it has outstayed its welcome.

I guess it shows how easily we adapt to new situations and also how we also get excited about the silly little things. I suppose it was also the first 'big' challenge I had as a pumper. Could I change the cannula? Would I do it right? Would it hurt? I still remember the questions. The biggest one at the time still being, will this work for me? After all, without successful cannula changes, the pump was a no-go track. Every time I see that advert I think of my own excitement, anticipation and wonky attempt at changing those first few cannulas.

Turns out it was one of the most simple aspects of being on a pump and I had nothing to worry about.

Fifth Annual Insulin Pumps Association conference

Last week (apologies for the delay) I was invited by INPUT to attend the Fifth Annual Insulin Pumps Association conference in Manchester. Never one to miss the opportunity to jump face-first into events like this, I gladly accepted and before I knew it was boarding a train to Manchester and syncronising hypos with Lesley of INPUT fame.

On arrival and another spookily timed skyrocket out of (ahem) 'optimal range' on both our parts, Lesley and I were having dinner with some of the many other attendees at the conference including several bods from Roche and some healthcare professionals from a number of different hospitals around the country. It wasn't long before one of the sales managers from Roche had spotted that I was on a Medtronic pump and had begun their sales pitch at light speed. Frankly the Combo pump and blood glucose meter did impress, seeing as I was rifling through my bra for most of the duration of the meal to adjust insulin doses as each delicious (and very non-low carb) course came out, while all those with the combo remote controls were testing and bolusing (taking a shot of insulin for their meal) with ease. Truthfully I think the next pump for me will be a tubing free one seeing as the tubing is, for me, the biggest drawback of pumps in general. But it did show me that while my beloved Paradigm VEO was top of the market (again, just in my opinion) when I got it two years ago (is it really two years already??), it has been somewhat overshadowed by the newer sexier pumps on the market in recent years. Funny how quickly things move nowadays isn't it? Our diabetic predecessors must have been using metal and glass syringes for the 50 year mark before hypodermics came in, and now within 2 years the sexy new pump you once sported is the equivalent of the cassette tape to the ipod or what the horse and cart is to the Porsche.

It was with an eager attitude that I met Lesley for a suprisingly low carb but tasty full English breakfast the next morning and with that the conference was under way.

The exhibitions room was as always packed with impressive stands. But this being the first pump specific conference I had attended I was keen to get stuck in, knowing full well that the newer model Omnipod would be on show and I was hoping, the Cellnovo as well. I'd heard rumours about the Animas display which can be seen at these events and true to form, the most eye-catching stand had to be theirs, with a fish tank fully equipment with water, lights, real fish, plants and yes that's right, their insulin pump (!) suspended mid-tank. Although most pumps posit the same level of waterproofness (fairly confident that isn't in the dictionary) Animas are one of the only (if not the only) pump provider who are happy to guarantee their pump when submerged in shallow water. Great waterproofity? Waterprooficiousness? What IS theword!

There were also displays from Medtronic, Adanced Therapeutics (the company who bring the Dana pump and Dexcom CGM to the shores of the UK), Omnipod and my personal holy grail, Cellnovo.

I had a great chance to have a talk with Gary from Omnipod, who went some way to reassuring me that the teething problems I had experienced when I first made enquiries about their system had now been ironed out, thanks to a multiplying workforce and a chance to get their feet under the British market table. The new pod is certainly smaller than the old one and a contender against the much smaller and sleeker Solo (don't get too excited, its not avaialble here yet) and Cellnovo (watch this space, VERY soon). In truth I still have my doubts about Omnipod but only based on the fact that Medtronic's customer service still is - as far as I am concerned - second to none. That being said, the mention of Medtronic brings me on nicely to the holy grail of the day, the Cellnovo.

For anyone concerned about customer service, one of the head honchos at Cellnovo used to be on the Medtronic team and not just any team at that. She started the whole blogger forum craze and was, from what I hear, absolutely a key player in getting Medtronic's customer service at the very high level it is, which has been continued and pushed forward by their Justin Gray. So for a 'new' company who are just about to release their pump in the imminent future, I have a lot of faith they will do well. This, brings me to their pump.

I have looked at the website god knows how many times, but had until this point never had an opportunity to see it. 'Miniscule' is probably the most fitting term, considering inside it there are hundreds of parts, computers, insulin resevoirs and so on and so forth, that allow it to do it's job. It is technically a patch pump as the pump itself sticks to the skin using a velcro attachemnt, but the tubing between the pump and cannula can be varied allowing you to continue to put it in a pocket if you wish. That may sound like it defeats the point, but I have come across suprisingly large amounts of people who say they would like the option of hiding the pump if they were wearing a slinky dress or tight fitting shirt. I don't share these needs, but completely understand the concern. With the Cellnovo, that is possible. It is also equipped with a smart-phone like handset which allows real time measuring of impact of activity on BGs, acts as the remote control for the pump and frankly for the growing numbers of young people on pumps, will be a fantastic selling point. Considering for the most part young people are already well familiar with touch screen phones and wireless handsets.

It was great to see the Cellnovo and their team in action and provided there are no horror stories about the pump failing or customer service nightmares, I imagine this will be the kind of pump I aim for next, albeit in two years time!

But the reason above all else that I was there,was to attend the conference and hear the speakers. The name of this year's conference was 'From Cradle to Grave' and the overall message of the conference was that insulin pumps can be used in ANY portion of society and at ANY stage of life. We were given case studies of people at end-stage renal failure who were on pumps, babies as young as days old who we were shown photos of (which to be honest I found a bit shocking due to the very tiny body connected to the pump, although the shock was more a feeling of sadness that someone so 'new' had to already live that life). We talked about the benefits for pregnant women, children and pretty much every group you could imagine.

I see a specialist team at Portsmouth who are without a doubt a proactive and insulin pump friendly team without whom I would not have been on the incredible journey I have travelled in the last two years, but without a doubt they had nothing on the speakers at these conferences. In Cambridge they purport to have 50% of all their Type 1 child patients on pumps, which without a doubt blows the NICE benchmark out of the water and deeply puts to shame all those PCTs who are yet to welcome and encourage pumps for their most at risk patients. The word 'proactive' doesn't even begin to cover how forward thinking many of these professionals were. When I arrived at Cellnovo, the chair of the conference was even stood next to me (although I didn't know who he was yet) asking questions about what the benefit to the patient, this pump would have. The benefit to the patient; have you ever heard such madness! In some areas they seem to disregard even the benefit to the PCT, let alone the humble patient!

We had a fantastic talk from Candice Ward from Cambridge University Hospital about where the artificial pancreas project was going and how CGM and pump technology could well be the key components which will significantly impact the lives of diabetics. Although it was clear she felt this was not quite an imminent success, she did intimate that it was on the horizon and creeping closer to us day-by-day. My brain has a little party whenever someone says that.

All in all it was a fantastic day and the messages I took away were:

• Don't buy it if you are told your clinic doesn't do pumps, talk to INPUT.



• No matter your age, demographic or favourite day of the week, ASK THE QUESTION OF YOUR SPECIALIST



• No-one is too young, too old, or 'too far gone' (whatever that means) not to benefit from a pump



• Cellnovo are the ones to watch



• There ARE some highly proactive hospitals in the country, so ask about changing if your clinic fob you off.

All in all a brilliant day.

Parliamentary Showcase

You may have noticed me bang on about INPUT quite a lot these days and for good reason; we are both big time fans of insulin pump. The insulin pump and its real-life pancreas mimicking skills have helped me come full circle from a place where I was frightened of my own future and had quite frankly given up trying a little. Since my pancreas decided it was no longer going to play ball with the rest of my body and would allow my insulin producing cells a very extended holiday (I believe there has been a problem with security at the other end for, ooh, 24 and a half years so far), the insulin pump was my saviour. It has allowed me freedom, better results for my effort, to live more independently, has restored my confidence in my own ability to manage my condition and has opened my world to new opportunities. Not to mention the reduction in complications I was beginning to harbour.

Luckily for me INPUT are equally as fanatical about insulin pumps; so much so, that they spend a huge amount of time lobbying up and down the country for improved access to insulin pumps, awareness raising and taking to task those PCTs (Primary Care Trusts) who have yet to meet the National Institute of Clinical Excellence (NICE) benchmark of 12.5% of people with Type1 diabetes accessing Insulin Pumps. I'm not sure what my PCT is currently achieving, but I know it isn't there just yet.

INPUT kindly invited me to attend the Medical Technology Group's Parliamentary Showcase with them and help them man (well technically woman) their stall and answer questions about the pump and highlight some of the issues faced. This is an opportunity for members of the MTG to set up shop in the Attlee Suite of Portcullis House in Westminster and wait around for MP and parliamentarians to show up ready to impart some wisdom on them.

On arrival there were stalls (wo)manned by us, Medtronic, Heart Research UK, JDRF, Boston Scientific, The Patient Association and The Lindsay Leg Foundation amongst others, each with their own stall packed to the brim with leaflets, diagrams, pie charts and photos to illustrate their cause. As well as being there to answer questions, time was given to focus on the latest campaign of the MTG (last years was insulin pumps) which is UFE, or Uterine Fibroid Embolization. UFE is a non-invasive treatment for Fibroids in women which removes the need for a full abdominal hysterectomy which remains the most common (but not most popular) method of treating Fibroids. Not only does a hysterectomy involve several weeks if not months off work, it is highly invasive, expensive and for women, demands huge psychological adjustment for their female reproductive organs to be all together removed. Just because you may have had babies doesn't mean you want your body dismantled and put out to pasture. Conversely, UFE is minimally invasive and highly effective. Instead of removing the fibroids through a hysterectomy, using a local anaesthetic a catheter is introduced to the femoral artery and fed through to the uterine artery where microparticules are released which find their way to the fibroid cutting off circulation. Within days the patient can be back to work, and within months the benign tumour dies due to the lack of blood and oxygen. It allows women a greater chance or remaining fertile, and for those who have had or do not wish to have children, allows for them to remain completely intact.

Sounds great doesn't it? Well, much the same way the insulin pump are falling behind the expected up take so is UFE. In fact the message from the day was all too familiar; that this superior technology with efficacy far greater than the invasive technologies of the past, is still very much kept on the down-low by many PCTs, rather than making options transparent and clear to the patients, no doubt already suffering from the side effects of the illness they are undergoing.

It was a great day and a positive reminder of all the work being done to educate, increase awareness and improve the experience of the patient, while reducing the cost demand on the NHS. I was glad to be there helping educate and raise awareness about the benefits of the pump and it was a great chance as always to talk all things diabetes with people who were not only prepared to listen, but were actually interested.

The patient perspective

So a couple of weeks ago I was contacted by someone doing some research into diabetes products who was keen to pick the brains of us opinionated blogger-type folk. As I prepared for my over-the-phone grilling, it got me thinking about how much of a business this diabetes lark really is. Not that I hadn't already picked up on the whole big business vibe, what with CGM in its current form costing anything up to £200 per month to fund for those of us who haven't been able to put forward a successful bid for funding through the 'National Health Service'. Even the humble insulin pump is not yet available to all. In fact, in some places you still can't get an insulin pump if your Consultant or 'specialist' happens to think they are just a fancy gizmo. To find out a little more about insulin pumps and whether you may be eligible for one, check out INPUT's pages.

An equally pancreatically defective friend of mine and fellow blogger over on Shoot Up or Put Up once said that she was happy for diabetes to be big business, because all the time the 'Big Pharma' companies are striving to improve their products or come up with better ones to the last great idea, us diabetics are only set to benefit. In terms of quality of products, anyway. Unfortunately access to them remains a bit of a lottery. Granted, in some areas (such as CGM) it can still be difficult to actually access the products thanks to the hefty price tag, but that is the way the world works in many areas, not just diabetes. In terms of quality the ideas, improvements and developments seem to literally evolve day-by-day.

Unfortunately I can't talk about the topics we covered here for obvious reasons, but it was a great reminder of the development and progress that diabetes research is constantly undergoing. And with that development comes improved products, services and patient experiences. It is always refreshing to be consulted on my perspectives as a diabetic patient and user of (and payer for!) various products which improve the lives of those working hard to manage this condition. To be asked what I think, what I would use, what I wouldn't and where I see the future going, is a good reminder that the patient is at the heart of research more than ever.

At the end of the day it is us, the diabetics and users of these products, that keep these companies in business and urge them to strive for more. When it comes to our health we are demanding - and rightfully so. And if a product comes out which doesn't quite cut it, we will let them know. If a great one comes out, we will use it. This, is the challenge.

Anna - very excited about our future.

Getting back on track

Thanks to having a solid month off any decent exercise along with a diet similar to that of Morgan Spurlock in 'Supersize Me', I have needless to say been having some issues getting my blood sugars back into reasonable control. We all need a break from the daily gauntlet that is diabetes and I for one am very much in favour of cutting yourself some slack and remembering just how much living with a chronic illness deserves some well deserved rest now and then. However, a 'break' as far as I'm concerned is a day here or weekend there. A month, is not.

Having a month off changes everything. And boy do I know it! Yesterday I decided to bite the exercise bullet and head back to Body Combat. Whatever you are thinking about the name and how intense it sounds trust me, it's worse! Imagine standing in a room with 50 other people while high octane music blares out and an instructor who apparently has no limit to their boundless energy shouts through a microphone, while you attempt to mimic them (and fail drastically) while doing moves from mai Thai, karate, Thai chi, kickboxing and if you do it like me, 90's rave. Now also imagine that this exercise propels your fitness, energy levels, self-confidence, endorphine-crazed laughter and general well-being faster forward than anything else you've tried.

As a diabetic one of the challenges we face is keeping all those trillions of nerve endings alive and (literally) kicking. One of the ways to do this, is exercise. It gives you much better control long term, increases sensitivity to insulin meaning much less is needed, it helps manage weight, it encourages the heart and blood to get pumping and makes you feel wonderful.

Yesterday however, I did not feel wonderful. In fact I felt a little as though (despite it being non-contact) I'd been karate slapped in the face by the entire Olympic martial arts team. I was puffing like a haggard old smoker, sweating like I was smuggling drugs into Thailand and being taken for my frisking and was about as red as Bill Clinton when Miss L went public.

I'm sure my 6 inch meatball sub three hours before with extra south-west sauce (omnomnom) didn't help, but needless to say I learnt my lesson!

My body needs a rest. Not from diabetes, from me and my month off! A day here or there is OK; a month is not.

So today was soya yoghurt with nuts for breakfast and home made veggie soup for lunch. I've had a litre of water already and planning on making a habit of it.

Wagon, you and I must get re-acquainted. STAT!

In your time of need

It is no secret that with the run up to the wedding all things diabetes fell by the wayside. It wasn't so much falling off my wagon as being well and truly run over by it! I carried on regardless, as we do, but only did the bare minimum just to get by. The problem is all the time I pay less attention the more blood sugar control - and subsequently the way I feel - starts to dwindle. And so the circle begins; you try less hard so the control begins to waiver, you get bad results so you test less, because you don't want to deal with the numbers. The less I test, the less I want to test. And so it continues. I think they call this, 'burn-out'. It is at times like these that I start to spend less time on the blog, less time thinking about diabetes and less time finding things I want to write about.

With a spare evening on my hands I decided to sit down and try to find something to write about. I read over some of my old posts, remembering how I felt when I wrote them down and seeing if that helped spring my mind into action. Alas, not.

So I decided to look over the comments section, just to see if anyone had stopped by and if so, whether they found my ramblings of any use. Turns out, this was all I needed to remember exactly why this is one of my favourite places to be. It can be easy to forget that people actually read this stuff, because to me it is just stuff I write down on a page. My thoughts and experiences. It can be easy to forget that most of the time we are thinking about diabetes together. We are laughing at it together. We are living it together. Just that we are, together.

Thank you to all those people who have stopped by recently. Because it turns out that while I was ignoring the blog and getting on with everything except diabetes, you were reading it and leaving me comments that remind me why I began this in the first place; because of my diabetes.

Despite my recent burying of head in sand, I don't find it hard to admit that diabetes has brought me a few good things; the odd funny hypo story, a fantastic excuse for why I'm being a grumpy old mare, a wicked sense of humour which enjoys a good security frisk at the airport only to see the look on the face of my frisker as they step back and eye me up and of course the best of all, the odd occasion when I am allowed to stuff my face and it happens to be the day my workmate has brought in her chocolate orange malteser cake (omnomnom). But the best thing by far is the people also doing daily battle with diabetes. Because even when I am ignoring the 'betes as much as possible, the people with whom I share so much are still around. As much as I sometimes wish the diabetes wasn't, I'm glad the people are.

Thanks for stopping by and thanks for leaving your thoughts. It was a hell of a welcome back!

AP

On the back-burner

There are few things which could drag me away from my beloved blog mainly due to the fact I love talking all things diabetes. I started this blog because I quite literally ran out of places to leave my diabetic thoughts and this felt like a good place to come, somewhere I could pour out those thoughts and it didn't matter what I said or who was listening. That said, you may have noticed a drop-off recently in the amount of time I've been spending on here and the number of posts I've left.

There is no denying that there was one clear reason which can be summed up in one word; wedding.

Yes that's right last weekend my fiance and I tied the knot, got hitched, took the plunge, exchanged shackles or any of the other old cliched sayings you may prefer. Now, while I know that writing a blog invites people into your world and often others like to join in with both the high (and often low) points in your life because frankly that's why we do things like write/read blogs - to share, I was desperate to avoid the blog about diabetes being hi-jacked by its own author and turned into a blog about weddings/diets/flowers/song choice or so on as I have all too often seen others do. Equally I have had very little time on my hands thanks to any of the aforementioned tasks.

The day was wonderful and everything went off without any hitches other than the intended. But it struck me that even on my wedding day when I should have a million distractions from the blog, I still found diabetic related thoughts, topics and sentences creeping into in my mind.

When I first discovered blogs and one in particular, I remember finding a post all about how to adapt your wedding dress to cater for your pump. The ingenuity with which us diabetics incorporate insulin pumps into their wardrobes never fails to impress me; stitched into wedding dress skirts, attached in little pouches to waistbands or in garters, pockets made in the skirt, tucked into corsets. If the word 'adapt' came with an 'example of' section in the dictionary, these would be in there.

Having been engaged for two years, I had plenty of time to think long and hard about what to do with my pump on my wedding day and considered a number of options, many of which are listed above. But in the end I reached a decision on how I wanted to wear my own pump which I was perfectly happy with. That way was not at all. I know it may seem controversial or ungrateful, but for me I wanted the freedom on my wedding day of not having to carry a remote with me. I didn't want it tucked into my giant Bridget Jones pants or stuffed down my bra. A pocket would have been a good option, but knowing how tipsy I was planning to be (and successfully got to, thank you very much), I simply wanted to be 'free' of it for just one day.

There are many times when I have had to prioritise my diabetes over my wants; when the cakes get passed around at work and I really want a second (and yes, I did have a first!), when I want to just chill on the sofa but know that exercise is a better option, when I really want an alcopop to drink but know that something with diet coke is better on the body.

So on our wedding day I whacked in some long acting insulin in the morning, unhooked my pump as the ceremony approached and simply forgot about it. During the day my blood sugars did rise and having to nip off for injections was a bit of a pain and reminded me how much I don't miss the little buggers. In the end I was glad to put my little robot friend back on again but for me, being able to just take it off and prioritise our wedding and not the diabetes, was the right decision. This post would probably gain more recognition if I talked about what inventive system for through-the-dress-bolusing I had come up with, but this blog was always about honesty.

So honestly, for just one day, I relaxed, went a bit old-school, put diabetes on the back-burner and got on with something else, for a lovely change.

So here it is, the one wedding blog I will subject you to. It's diabetes from here all out.

Off the pump for 6 hours and blissfully fine with it.