Posted by on Sunday, 29 December 2013

The consistency conundrum

Christmas is an interesting time of year to play at being your own pancreas.

The main Christmas Day meal itself is usually *ahem* relatively easy (especially since I adopt the traditional standpoint of 'no carbs count' for Christmas and birthdays). As meals go, it is big... it is rich... and it will probably involve a pudding the size of a bowling ball... But it is basically just a roast dinner and it is only one day - and you can't expect perfection all the time right?

However, on an alarming number of occasions either side of the 'big day' I find myself faced with my own particular food nemesis - a creaking table full of buffet nibbles. Each little carb-laden, high-fat morsel smiling sweetly up at me daring me to have a go. A festive tipple or two to blur my judgement and weaken my self control and you can see that these meals fall firmly into the 'high risk' category.

Which is quite an odd way to look at food really... But I've been doing it so long that I hardly realise I am doing it.

Over the years it has seemed logical to me that consistency in terms of food intake is likely to be a good strategy for Blood Glucose results. It makes sense surely? Eating similar quantities of similar foods should allow me to try out a number of dose and timing variations until I find one that works. Then I can eat that same meal any time, and get perfect results. Tried. Tested. Predictable. Easy! Other meals are much harder to calculate (read: wildly guess) and almost come with an inbuilt expectation of BG chaos. If you are going to enjoy these... you do so knowing that levels are likely to be less than perfect.

Except that it doesn't actually work like that. At least not for me, or perhaps just not all the time. And when it doesn't work like that... When an 'old faithful' lets you down catastrophically, while in the same week a 'wild stab-in-the-dark' guessfest comes out not too bad, you begin to wonder why you are bothering to make those careful choices in the first place.

When it comes to playing the BG boardgame (not so much Snakes and Ladders as Spikes and Hypos perhaps?), my diabetes, like some cantankerous elderly maiden aunt who hit the sherry early on is a big ole cheat. Not averse to completely changing the rules when it suits, or simply behaving in a completely baffling way. Even *if* I were to eat exactly the same items of food, in exactly the same quantities every single day. Even then, I still could not expect 'perfect' BG levels (whatever that means) to last for long. The consistency conundrum is simply that carbs, doses and timings are only a small part of the picture. There are a lot of other factors in play that can combine (or conflict) to significantly alter the outcomes for the most self-disciplined diet.

Douglas Adams summed up living with type 1 diabetes pretty well:
“The nearest approach the Guide makes to this matter is on page seven-thousand-and-twenty-three, which includes the words “expect the unexpected.” This advice has annoyed many Hitch-Hikers in that it is ‘A’ - glib, and ‘B’ - a contradiction in terms. In fact, the very best advice it has to offer in these situations is to be found on the cover. Where it says, in those now notoriously large and famously friendly letters, 'DON’T PANIC'.”
Douglas Adams, The Hitch-Hiker's Guide to the Galaxy.

In my heart I know that trying to reduce the number of variables involved in juggling my BGs is the 'percentage approach'. After a few days of winging it I usually have had enough misses for the illusion of SWAG invincibility to have worn off.

So I'm reeling my choices back in again, and aiming to lose some of the wilder swings I've seen over the past week or two. It will always be a balancing act. Along the line between complete dietary freedom at one end and monk-like self control at the other there is a place where each person with Type 1 Diabetes will feel comfortable, both with the food they are enjoying, the effort they are putting in and the results they are seeing.

Good luck in finding your own balance.

Posted by on Monday, 18 November 2013

World Diabetes Day 2013 - a late update

As you may or may not know, it was World Diabetes Day on 14th November - Thursday last week. It doesn't always get a huge amount of attention here in the UK, but early on Thursday morning I saw a tweet from someone who said that while they usually spare their Facebook friends and family any boring diabetes-related shenanigans they had decided to post something to Facebook every time they interacted with their diabetes care. That sounded like a brilliant and very simple way to help raise awareness so I shamelessly stole the idea and did just the same on my personal Facebook account. I was absolutely overwhelmed by the reaction from people, pretty much all of whom know I have diabetes (I've never hidden the fact) but who had not perhaps realised the amount of day-to-day faffing about that T1D management involves.

Better late than never - here's what I posted:

10.20 14 November 2013
Today is World Diabetes Day, so I've decided to bore you all senseless with some of the diabetes-based nonsense I have to do every day.
Before breakfast I checked my blood glucose level by taking a tiny blood sample from my finger and applying it to a test trip in my meter. The result at 7.10 this morning was 5.8mmol/L. That's pretty much spot-on. So I took some insulin, waited 30-40 minutes for it to get going, then ate some toast.

It's now a few hours later and I just felt unexpectedly hungry so checked again in case that meant my breakfast dose had been a little out and my blood glucose level was now running a little low. Nope. it was 7.8mmol/L.

That's a smallish rise after breakfast but within acceptable limits. I will need to check again at lunchtime.

12.32 14 November 2013
OK. So it's Diabetes time again. I need to get ready for lunch. At breakfast and lunchtime taking my insulin about 30-40 minutes before eating helps to keep my levels in check after those meals (bizarrely I don’t usually seem to need to do this for evening meals). I've tested at 5.8mmol/L again - this means my breakfast dose worked perfectly, bringing me back to my pre-breakfast level after the 4 hour duration of the insulin has passed.

I have not eaten anything since breakfast because, to be quite honest, juggling multiple overlapping doses of insulin in a short space of time to allow for the carbohydrate in a snack is such a hassle and provides such added complexity to my day that I find I'm better off just not bothering. It’s not that I can’t eat biscuits or cake if I want to... it’s just that the pleasure of those things is offset by the guesswork and calculations involved in trying to achieve good levels day to day.

I've estimated my lunch at 45g of carbs. I need to know pretty much exactly how many carbs are in *everything* I eat so that I can calculate insulin doses correctly. Fortunately I have a helping hand as my insulin pump does the maths for me. At 12.29pm I took 4.05u of insulin. I will have to keep an eye on the time now and aim to eat around 1pm otherwise the insulin will kick-in before my food and I risk my blood glucose level dropping too low.

Today is World Diabetes Day - this is what it's like living with Type 1 diabetes.

15.32 14 November 2013
More diabetes goings-on documented as part of World Diabetes Day. Just checked my BG (now you're used to the idea I'll slip into jargon) and it was 9.9. Not a disaster, but not ideal either. I should aim to be below 9.0 after meals to avoid future 'fun and games' like blindness, heart attack, kidney failure, amputation and so on (cheery!).

I had exactly the same lunch as yesterday (this makes things easier for me as it reduces the number of variables involved in my day to day decision making). But... I also made small changes to my 'background' insulin pattern yesterday to prevent some lower levels I’ve been having recently and it seems I've overcooked it a little.

I've added an extra unit to correct the high level and have re-tweaked my afternoon pattern again for tomorrow. This is one of the main advantages to an insulin pump (which I now use instead of multiple daily injections). The degree to which you can fine tune doses offers potentially amazing accuracy of doses and delivery. The drawback, of course, is that you have to be physically attached to a small pager-sized medical device 24 hours a day... But the benefits soon far outweigh any concerns you have over 24/7 attachment.


18.11 14 November 2013
World Diabetes Day again. Evening meal is pasta. And I'm still 9.1 despite the earlier correction which is well under way. Adding extra correction to meal dose.

18.50 14 November 2013
I’ve not just tested, but I am still thinking (worrying) about how this meal dose will work out. The carbohydrate in pasta usually digests fairly slowly for me, so sometimes I use options on the pump to 'spread' the insulin delivery over a longer period. This time however I have taken all the insulin up front as I'm high to start with and the insulin will probably struggle to keep pace with the food. Of course this means I will have to keep a closer eye on things this evening, just in case my guesswork as to what might happen between the food and insulin turns out to be completely wrong and I end up worryingly high or dangerously low. Today is World Diabetes Day - this is what it's like to live with T1 diabetes.

19.40 14 November 2013
Another update (are you all bored yet?) Tested an hour and a half after eating and BG was 10.3 Now even though this is *still* too high, it is actually encouraging because it suggests only a very small rise in BG level while the initial burst of glucose from food would be expected and insulin should be active. This means there is unlikely to be any issue with the cannula (the small tube under the skin through which the insulin is delivered) and/or the pump itself. If I had not eaten anything I would probably be well on the way back down now - possibly too quickly! Another check in an hour or two should provide a better picture.

Posted as part of World Diabetes Day. Millions of people all over the world - parents, children, teenagers and pensioners - are making similar judgements today and every day.

20.27 14 November 2013
More World Diabetes Day fun and games. Well, another test reveals my BG has now risen to 12.3mmol/L. Disappointing. I'm lucky in that occasional short-lived forays into double figures/teens don't make me feel awful like they do for some people, but it does mean that I don't necessarily feel it when my BG is rising and I'm expecting it to be falling. I have to find out by testing. I still have over a unit 'active' from my meal dose, but by now I should be approaching normal levels. I've corrected again, but this time I've dosed more than I should need in order to reduce my BG more quickly and will top up with some carbs later if I need to. Yesterday's adjustment which was intended to prevent low levels seems have been a little over enthusiastic for the afternoon and evening. I will be tweaking again it seems.

21.20 14 November 2013
Another hour further on... Another test. Still up at 11.9. Sometimes 'rapid acting' insulin can seem anything but. It would be tempting to add a little more insulin into the mix, but according to my pump I still have at least 1.8u still active. Of course, the pasta I ate earlier is probably still pushing BG upward to some extent, but it's often tricky to work out quite how much of a food's BG raising potential will already have passed. Today is World Diabetes Day, and I much preferred how stable my BG levels were this morning.

22.40 14 November 2013
Today is World Diabetes Day and I've decided to post something here every time I do something diabetes-related today. I haven't given you the full picture of course... These are just the edited highlights. I've not mentioned each time I've looked to check how long it was since I did ‘x’ or ‘y’, to see whether or not I now need to consider doing something else. Since about 3.30pm my blood glucose levels have been higher than I would like. When this happens I can use insulin to bring them down into a healthy range, but I can't overdo it as the body needs a minimum amount of glucose to function properly and if I overcorrect I could easily end up hypoglycaemic (where the brain is starved of glucose and begins to malfunction).
My efforts to correct my high levels so far this evening have been less than successful. I am currently cruising at 10.5mmol/L whereas by now I was expecting to need to be eating some top up carbs. It is difficult to work out exactly what has gone wrong and where all that extra insulin has wandered off to, but having waited and tested and waited and tested all evening I've decided it's time for one last gentle nudge. I still have around 0.5 of a unit circulating from earlier but I've overridden the pump's cautious suggestion and added another 1.25u to make 1.75u in total. I would expect 1u to reduce my blood glucose level by a smidge over 3mmol/L in about 4 hours which *ought* to bring me to the mid-5s by around 2am. That's the theory anyway - if you've been sticking with this from the start you'll know it's not quite been working out as expected so far this evening for one of several hundred possible reasons. I now have to decide whether to set an overnight alarm for 2-3am to check again. Or just hope for the best and see how things are in the morning. As a halfway house I'll probably wait up another hour or so to see what happens. Fun fun fun!

23.57 14 November 2013
My last post for the day - you will doubtless be very glad of that. Just tested again and I've dropped down to 8.4 with 0.7u or so still active. That's much more promising. Not quite sure what happened, but it could simply have been a slight error in dishing out the pasta earlier. Even though the amount of pasta we cooked was carefully measured a spoonful or two too many on my plate could have easily caused that sort of havoc from a highish starting point. On the other hand it may be nothing to do with that.

Today was not a particularly tricky one - I've eaten only tried and tested foods that I seem to be able to manage more often than not... I didn't do anything particularly strenuous or energetic that might have dropped my BG... I wasn't under undue stress or illness, both of which can cause BG upheaval... But I still managed to make a bit of a hash of it levels-wise nonetheless. Even relatively ‘normal’ days can involve a mind-bending number of conflicting and combining variables to navigate around.

On the plus side at least I didn't crash from too high down to too low and back again, but it has been a fairly frustrating 'wait and see' evening.

It won't be World Diabetes Day tomorrow, but I'll still be weighing food, calculating doses and trying to work out how to keep things in some sort of balance. There are around 3 million people living with diabetes in the UK, and something like 10% of them, around 300,000 have type 1. Thanks for reading, and congratulations on all having fully functioning pancreases you lucky lot!

Posted by on Sunday, 6 October 2013

INPUT out West, Truro

I was delighted to be invited to attend 'INPUT out West' in Truro this weekend. Perhaps the biggest single event Input are running this year among other roadshows around the UK. The weekend allowed people interested in pump therapy to get 'up close and personal' with the technology involved, meet some pump users, find out more about NHS funding options and quiz the manufacturers.

The event was held at the very lovely Alverton hotel close to the centre of Truro which, along with Lesley, Melissa and Laura of Input looked after us all beautifully. It was great to see HCPs and patients able to handle pumps, CGMs and other diabetes-related gadgets, with companies on hand to answer questions and provide information both to 'old hands', relatively recently diagnosed families and at least two different people who are about to start their pump journey within a matter of days. Some folks had travelled from as far afield as Cardiff and Preston to attend! It was lovely to meet up with online friends and acquaintances too, to catch up with Patti from DSF and to finally meet Angela 'Diabetes Power' Allison face to face, along with her daughter, pump user and juggler extraordinaire - Claudia.

On a personal level I was slightly disappointed about the 'no show' by Medtronic as there were a couple of questions I wanted to ask them, but that was more than made up for by interesting updates from Roche and particularly an excellent conversation with Martin Harvey of Advanced Therapeutics (Dexcom G4) and the very helpful Animas pump trainer (apologies, I didn't pick up your card!) who answered lots of my pointy questions about the Animas Vibe.

But it wasn't just about the big pump-tech companies. I was delighted to see that relatively small meter company Spirit Healthcare have launched a new 'talking' BG meter to support blind and partially sighted people with diabetes (the CareSens N Voice). Strips for CareSens meters are at the more affordable end of the spectrum for those T2s who need to 'self fund' their own blood glucose monitoring (don't get me started). The accuracy of CareSens meters appears to be excellent, and the company will happily provide the meter itself free of charge to anyone regardless of diabetes classification.

Buzzy also stands out in my mind from the exhibition. It's something I had seen mentioned online ages ago but completely forgotten about. Essentially it's a gadget that reduces pain/discomfort involved in injections or infusion set insertions by up to 80% with a combination of temperature and vibration-based 'nerve distraction'. They look fun too! If your little one (or not so little one!) struggles with injections or set changes, it could well be worth a try.

Undoubtedly one of the biggest draws of the event was the afternoon talk by Professor John Pickup, whose gentle and unassuming manner belies an extraordinary career at the forefront of diabetes technology (his work at Guy's Hospital in the 1970s pretty much earns him the title 'father of the insulin pump' and though non-diabetic he was the second person ever to inject rDNA human insulin 'just to make sure it was safe'). The talk covered all sorts of exciting developments in diabetes gadgets that are waiting in the wings, some nearer to reality/market than others. Pumps seem to be moving more towards patch and micro-pump approaches and Prof Pickup anticipates greater use of pump therapy in the treatment of T2D in coming years. Naturally the work towards a closed loop 'artificial pancreas' was covered (which was introduced with a wry smile saying that such a system was suggested to be 'just a few years away' as far back as 1972). Other interesting developments in the pipeline for CGM might involve non-invasive systems using near-infrared fluorescence and/or nano-sensor 'tattoos'. Exciting work also appears to be ongoing in the spheres of islet cell transplantation (including nano-encapsulation of the islet cells to protect them and improve the success of transplantation procedures). Stem cell research continues, but once again progress is relatively slow with some difficulty in reproducing promising results reliably.

The topic then turned from technology to future possibilities for structures and systems that provide care to people with diabetes. Opening with a bold statement that 'We know what the problems are' followed by a comprehensive list of missed targets, postcode lotteries and structural weaknesses within the existing system, Professor Pickup then laid out a sparkling vision for the future. A future of agreed standards that are met across the country (with action taken where areas struggle to meet them); of universal education for all patients; of professionals incentivised for outcomes met, not boxes ticked; of a funding overhaul that facilitates a multi-disciplinary approach; of seamless integration between primary and secondary care (hospital clinic and GP surgery); of increased staff training (no more waiting lists because only one nurse can deliver training courses/pump starts across a huge area); and of equal access to the very best treatment options wherever people live.

It was quite inspiring and made me wish that Professor Pickup (or someone with the same mindset) was in charge and empowered to bring it about.

In the evening I was invited to join the Input team, Dr Pickup and various other invited guests for a cracking dinner where we talked long into the night and enjoyed learning a great deal more about a pivotal figure in the history of diabetes technology.

All in all it was a thoroughly enjoyable weekend, and as often is the case with these events it is the small, incidental conversations had with other patients, pump users and parents of children with diabetes that made it special just as much as the 'big' presentations.


Disclosure-y gubbins: I was invited to attend the weekend but was not paid or asked to write this post. I paid my own travel and accommodation expenses, but was treated to dinner on the Saturday night.

Posted by on Thursday, 26 September 2013

Does social media empower patients or confuse them?

That was the question posed at an event held by Brandcast Media as part of Social Media Week London yesterday (no, me neither). I was chuffed to be invited to attend by Diabetes UK whose 'Digital Engagement Executive' the irrepressibly perky Amy Burton was speaking on the panel. Alongside her were George du Toit a Paediatric Allergy Consultant, Andrew Schorr 2x cancer survivor & founder of Patient Power and Sneh Khemka, Chief Operating Officer of Advanced Oncotherapy. Charlie Grieve, Brandcast's CEO holding the reins and gently steered the conversation.

When I arrived at Brandcast's groovy offices just off Regent Street the room was already filling up with a heady mix of cool and confident Social Meeja types, healthcare professionals and charity representatives. By the time the discussion started it was standing room only. I found a quiet spot and spent a few moments debating whether to avail myself of the funky Moleskine-esque notebook in Brandcast's signature bright pink. I gave Amy some encouraging smiles and nods.

What followed was a fascinating conversation about the impact of Social Media on patient experience. Almost inevitably the event was live streamed, and heavily tweeted under #smwdigitalhealth. Andrew Schorr gave a powerful account of his own experience, where the information and confidence he received through social media interactions led to him receiving completely different care, without which he quite probably would have died - "Social Media saved my life". Here are a few other snippets that stood out to me during the course of the evening:

"I have not a doubt in my mind that social media is empowering patients. But you need to know where to look/where not to look" Sneh Khemka

"Different people value and need different Social Media channels - everyone finds their own niche" Amy Burton

"Medics are, by and large, cautious of social medial" George du Toit

"Patients who share a diagnosis can push for therapies or question the use/effectiveness of certain drugs by working together" Andrew Schorr

"Some social media platforms are becoming the Trip Adviser of hospitals. Patients can assess the quality of their own care" Sneh Khemka

"HCPs need training in use and governance of Social Media" George du Toit

"What one change would I like to see? For more HCPs to engage with online communities" Amy Burton

As expected there were some concerns raised over the nature of some of the 'advice' in circulation in the FaceBlogTwit-o-sphere, over privacy and the potential (mis)use of data shared over social media, some of which can be quite staggeringly personal and sensitive. The general feeling though was that patients are making their own individual decisions about what they share with whom - and many of the online communities (from my perspective I would say particularly the DOC) are quite good at self-regulation, suspicious of 'miracle cure' nonsense and take all content with a healthy pinch of low-sodium condiment.

I suspect that quite a few in the audience were interested in gaining insight into how to 'leverage' social media channels (sorry, terrible industry phrase) on behalf of healthcare clients, private health providers and Big Pharma, it was encouraging then, that the panel recognised the crucial nature of transparency in these interactions. These online communities exist and are powerfully helping patients, but they are savvy, often fiercely independent and quite naturally suspicious of commercial interference. They will very quickly smell a social media rat if businesses come rampaging in with a clumsy marketing agenda.

It was great to hear the two healthcare professionals on the panel speaking so enthusiastically about their own use of social media in clinical settings (which seems to be on the increase as newly qualified HCPs come through who are already engaged in social media). Additionally there were some tantalising some glimpses of what might be coming next. For instance I had not heard of 'Watson' a computer system that is, apparently, better at diagnosing cancer than many doctors because it uses a constantly-updated database of research and evidence rather than relying on what it can remember from medical school and what Dr Sheh described as 'your own experience, prejudices and preconceptions'. What we need, he suggested, was the computer to number-crunch the data and evaluate the most likely diagnosis based on all the available evidence but then a sensitive, compassionate medical professional to interpret/relay that diagnosis in the light of the individual person in front of them.

The final question for the panellists was, 'What one change would you like to see?'. Half the panel wanted to see more involvement from healthcare professionals in social media communities, while Sneh Khemka rather pragmatically suggested that giving interactions/consultations over social media some sort of tariff so that healthcare professionals would come to see them as 'proper' earning work would be a sure-fire way to drive that.

We shall see!

Disclosure and all that. I wasn't paid to blog about this or attend the event. Diabetes UK kindly paid my train fare and Brandcast Media gave me a nice bottle of beer and some tasty nibbles at the end of the event. I decided against taking the notebook.

Posted by on Friday, 6 September 2013

Type 1 Diabetes - a 30 second guide for busy journalists and scriptwriters

30 second guide to Type 1 Diabetes

Too busy even for the introduction? Click here!

OK. Enough really is enough.

Over the past 24 hours I have seen a *lot* of comment about a piece published in a major online newspaper site yesterday. It is a site that often seems to struggle to get the basics of diabetes the right way around - and it is not the only media resource to struggle, not only that, but TV and movie scriptwriters usually get it just as wrong too. I guess it's understandable... before diagnosis I knew *nothing* about T1 Diabetes either. But if you are going to write about it, it would mean an awful lot to all the people living with the condition if you could just spare 30 seconds to get your head around the basics first.

The story concerned a woman who was forced to leave a popular high street fast food outlet because staff mistook her insulin injections for drug abuse. Thankfully it was rapidly corrected by the site in question following a slew of complaints from PWD. The following snippets have been quoted elsewhere from the original version:

"Sarah P, 36, ordered a Big Mac from the fast-food chain last Friday and used her EpiPen to inject herself with insulin to increase her blood sugar level before tucking into her meal."
Type 1 diabetes accounts for ten to 15 per cent of all people with the condition and if they do not inject enough insulin through the day it can lead to a state called hypoglycemia."

I've marked the obvious errors in italics. Inaccuracies that might cause fatalities elsewhere if someone decided to be a 'have-a-go First Aid hero' are marked in bold. I am given to believe the full article contained many more.

I realise that journalists are busy people, so I've put together this 30-second guide to Type 1 Diabetes. That's a full five seconds per bullet point and five seconds to rest at the end.

1. Type 1 diabetes is an autoimmune condition unrelated to diet or lifestyle and while commonly diagnosed before the age of 18 can occur at any age of life.

2. Successful management of Type 1 involves avoiding both hypo- (rhymes with LOW) or hyperglycemia (HIGH blood glucose)

3. Insulin drives blood glucose levels down.

4. Carbohydrates (especially sweet/sugary/non-fatty foods) push blood glucose levels up.

5. Almost all 'emergency' situations the public will encounter are likely to involve LOW blood glucose, treated by a sugary drink, glucose tablets, fruit pastilles or jelly babies. Administering insulin under these circumstances is potentially fatal.

So there you go. Not too hard was it? Feel free to pop off and have a celebratory tallskinnycappufrappuwhatnot.

It's all about the balancing act to keep the little green ball in the diagram above centred between the two bars of nastiness. Too much insulin and blood glucose can fall to a level where the brain cannot function properly leading to confusion and sometimes convulsions or unconsciousness. The remedy is simply to raise blood glucose levels with something sweet. Preferably liquid. Hypoglycemia, low blood glucose (if you still don't get it, think hypo-allergenic) is usually swiftly treated by the person themselves, but if you come across a Type 1 behaving very oddly or aggressively, not making sense, slurred speech and sweating profusely - the chances are all they need is a few swigs of Lucozade and in 10 minutes they'll be as right as rain.

Hyperglycemia, high blood glucose (still struggling? think hyper-active) is usually caused by either too much food or not enough insulin. It is annoying, but does not usually present any immediate danger - apart from the fact that the T1 in question is likely to be a bit grumpier and thirstier than normal. Long term though, over several years, it can cause all sorts of nasties... blindness, amptuation, stroke, kidney failure, neuropathy and a host of other 'diabetic complications'.

Of course there's quite a bit more to it than that, and before anyone chips in, yes of course I realise that there are some very urgent medical situations that involve high blood glucose levels leading to DKA, but let's just get the basics in place first and then work from there eh?

If you are hungry for more detail you could always download the Diabetes UK "Reporting on Diabetes: A Guide for Journalists"

Posted by on Monday, 2 September 2013

Annual reviews and first appointments - A guide for junior Doctors,trainee DSNs and other HCPs

To state the ridiculously obvious - Type 1 diabetes is not always very easy to live with.

The relentless requirement to monitor, juggle and account for a hundred-and-one variables (food, doses, exercise, weather, stress, hormones... you know the drill) while trying to live a relatively normal life day to day can be quite a frustrating business.

It is a great comfort to know then, that we have a number of ferociously clever and wonderfully kindly professionals that we can regularly visit who are dedicated to supporting us in our daily battles with the big D. Most of us will only get a precious few hours a year to receive this input, so it's important that we can make it count.

A month or so ago someone who I consider to be quite a good friend (which is odd really since our contact has only ever been of the remote and electronic variety) shared an experience of an appointment with a young and perky Registrar which, from what I can gather didn't work out too well. I think it's fair to say that my friend has now - some weeks later - just about managed to come down from apoplectic-teeth-grinding rage into the significantly calmer strangers-crossing-the-street-to-avoid-thunderously-angry-expression.

This got me thinking about what it is that we long-term pancreas-impersonators (or newly diagnosed for that matter) might hope for out of our precious appointments. If you've not done many D clinics before (or even if you've been running them for years!), here's what I would hope you would bring to the party:

Hello
First impressions count. I've met a lot of HCPs for first-time appointments and you would be surprised how many don't introduce themselves. It's a busy clinic, I realise I may never see you again, but it would be nice to know who you are.

Please, please, please just take a moment before I come in to skim read my file. If you are checking that information is up to date then be a bit careful of how you ask those questions. "So... you have type 1 diabetes?" might seem innocent enough, but some people you will be seeing might have been living with their condition for longer than you've been alive - so it's not really a question that needs to be asked. T1D isn't really something that's going to go away. Know my type. Know how long ago I was diagnosed. Know what direction (if any) my HbA1cs have been moving recently and what insulin(s) I am using. If you are checking records for accuracy and up-to-dateness, tell me that you are checking. Otherwise I'll think you are an idiot.

It isn't your fault
This is slightly unfair, but I'm afraid there's nothing to be done about that. You have no way of knowing what sort of horrendous appointments I have endured in the past (I haven't actually, but many have). The last thing we both want is for the steel shutters to come down behind my eyes and for me to descend into 'smile-and-nod' grunting, just waiting to leave - that will do neither of us any good. Here are a few of the states-of-mind in which I have arrived at appointments over the years:
  • I have identified a problem or issue and I have no idea what to do about it. I'm hoping for suggestions.
  • I have identified a problem or issue and I am working on it. Your suggestions might be something I've already tried and found not to work.
  • I have identified a problem or issue and I think there's a gadget/change of insulin that might help.
  • I know things have been going OK recently and just want my results, thanks.
  • I know my results are a mess and hope I'm not going to get some kind of telling off. Don't you understand how impossibly difficult this is to do day to day?
  • I'm past caring, nothing I am doing seems to make any difference and previous clinic suggestions have just made it worse - I would ask about psychological support, but what's the point?
  • I don't have time for this and want it to be over as soon as possible.
You will need to develop a forensic, interview technique to glean from my merest eyebrow twitch which of those states-of-mind I am in. Alternatively - you could just come right out and ask me at the start - there's a thought. Ask open questions, be interested in the answers. Diabetes is not always textbook, you may know a lot about diabetes that I don't, but I'm the one muddling along with my diabetes 24 hours a day. As we say in the DOC - Your Diabetes May Vary. Most often I'm not expecting you (or even wanting you) to give me definitive answers, but rather to suggest strategies, principles or techniques that I can try out. And be asked about what sort of level of support and follow-up I want.

Not a number
I am not my numbers. I am not my A1c, my high this day, my low that day. These are information, but they don't define me and certainly don't necessarily represent the amount of effort I am putting in. Ask me what I'm aiming for, and why. If you think my A1c is too high or (too low) don't say anything until you've found out what I think about it. Ideally you've already picked up some story-so-far clues from my file (see 'Hello'). There is always ALWAYS something to improve. I want us to work together to make my numbers just a little bit better by the time my next appointment comes around, but I don't need telling off. Ever.

Questions, questions
Questions are your friend - I know you know this already, but it is worth restating nonetheless. Ask me what I am looking for. Find out what I am already doing (or considering starting) to try to reach my goals. That way you'll be in a better position to give me some really helpful pointers. You'll realise, of course that I may have come in with my guard up. You might have to tease the truth out of me, but asking the right questions will make us feel like more of a team - that you are on my side. Be especially careful if I have brought in any information, charts, print-outs and so on - you would be astonished how often these carefully prepared sheets are simply brushed aside. Pay them attention - ask me if there's anything I've spotted that needs looking into. If you spot what you think is a pattern, ask me whether I think it is significant and if not, why not. Sometimes type 1 diabetes is just random and frustrating, but a fresh pair of eyes and a healthy discussion about tactics and options can be just the thing to open up a new line of experimentation. Think of yourself as a top-flight Premiership football coach. Talk to me about strategy, technique and tactics rather than how far to kick the ball.

Never assume I know something
You may be up to speed with all the latest diabetes management techniques and fully immersed in decades of diabetes research. As a long-in-the-tooth patient, you would be forgiven for believing that with all my years of experience I am bound to have come across all this knowledge already. Carb counting... basal testing... dawn phenomenon... difficult foods... correction and insulin:carbohydrate ratios... I may know about these, but ask a carefully phrased question to assess my current approach to challenging day-to-day management situations in order to fill in any blanks I may have in technique and understanding. Once again the questions are crucial - otherwise we are into dangerous chicken-ovulation-inhalation territory.

Never assume I know nothing
Obvious really. But few things will sour our fledgling relationship quicker than you assuming that I have no idea what I'm doing. You never know... I might be one of those people who has read many of the academic research papers that are freely available online these days. I might have spent time keeping up with developments in technology, treatment and even the minutiae of NHS funding options because this stuff really matters to me. I may even have some interesting opinions - it won't hurt to ask.

Never assume. Anything.
That's your 2 second 'lift test' right there. If this is the only bit of this post that you remember, then we'll get along fine.

What about anyone else? Any hints and tips for HCPs for the perfect first appointment? As ever, comments welcome below.

Posted by on Friday, 16 August 2013

mySugr Review - The best Diabetes logging app ever?

When we began this blog almost exactly three and a half years ago (crikey!) I had just made two important and, in their own small way, utterly life-changing discoveries.

One was that I wasn't anything like as good at managing my diabetes as I liked to think I was. And the other, and perhaps more important, was the extraordinary power, knowledge, support and cameraderie of the DOC hive mind. At that stage I felt that my control was 'as good as could be expected' and that diabetes was just pretty random every now and again. Years later I now understand both of those statements to be completely true, but in a very different way - and with the benefit of signficantly better control and confidence in handling my diabetes.

One of the main changes I made at that time, and perhaps the one that transformed my self-management more than any other, was to start testing more frequently, and to record the results more systematically. This information then enabled me to spot patterns in the apparent 'randomness' and apply the knowledge & experience of the DOC to experiment with the whole 'pretending to be my pancreas' business. Identify a problem... find out what others do... experiment... try something else... develop a strategy... test... review... adjust. None of that would be possible for me without a decent feed of data to try to keep track of the million and one variables.

At first I used the ever-faithful pen and paper route, which is fine in its way, but doesn't really let you do anything with the information you are so carefully collecting. Shortly afterwards I started using different apps on iPod Touch and later iPhone (other smartphones are available etc...). I must have tried the best part of a dozen apps in quick succession before settling on one which allowed me to log and track everything I wanted to without making me want to chew off my own fingers in the process. A couple of years ago I saw a mention by Mike Young of Diabetes in Spain about an app he was using called mySugr so I had a look. I've been using it ever since. Recently they launched a major upgrade as v2.0 and to my mind mySugr has now become something really rather special.

Overview
Well let's see...

Fast/easy data entry? Yup.
Pretty graphs? Absolutely!
Useful averages over different time frames? All present and correct.
Additional analysis like SD and number of high/low readings? Correctamundo.
Suitable for pump users? Certainly.
Export data in a variety of formats? Of course!
Fun? Yes!

Erm.... what?

This I think was the biggest difference I found when I first started using mySugr. The team behind it (which includes quite a high proportion of T1s) understand that logging, while potentially *very* useful is not the most fun to be had. Underpinning all mySugr's seriousness and analytical clout is a healthy dose of wit and charm. When you first set the app up you choose a name for your diabetes monster and every time you make an entry you go some way to taming it day by day. They turn diabetes logging into a sort of game, scoring points with every entry made. This may not appeal to you from the outside, but there is something inexplicably smile-inducing about the animated gurgling reactions of your monster when you make an entry - especially one that is above or below your ideal range, which is exactly when I need distraction most.

mySugr allows you to log all the things you would expect - BG (in mmol/L or mg/dl), carbs (in exchanges/CPs or grams), meal boluses, exercise/activity, basal dose for those on pens/syringes and temporary basal rates/duration for pumpers. Naturally you can also make copious notes alongside your entries which I find essential in terms of interpreting the data later. In addition you can also capture photos of meals and even add the geographical location at which the entries were made which is a nice touch. Entries can be tagged with one or more predetermined icons which range from the inevitable 'breakfast' and 'sport' to more emotional options like 'stress' or 'chilling' adding further detail to records. A very useful 'search' option allows you to quickly scan back through months worth of entries to find what you last tried for 'pizza' or 'chinese takeaway' then jump to those records to see how it went and what you might try this time.

mySugr operates on a 'freemium' basis. The fundementals of the app are available absolutely free of charge, but full functionality (eg photos with records) requires a 'pro' subscription. When you install the app you get all the bells and whistles for a few weeks. Following that you can just use the (excellent) core functions, pay a small monthly fee to upgrade to pro, or complete motivational 'challenges' to earn days of pro subscription for free by logging several entries per day or exercising. EDIT: As of January 2014 mySugr seem to be moving away from a subscription-for-pro set up towards a single payment model.

The data analysis on offer in mySugr is excellent. The home screen (above) gives you a general overview of how things are faring over the last week/24 hours in different ways. The graph itself recolours to give you instant feedback if things are altogether too high/low (red) or a bit marginal (amber). There is a logbook screen with pleasingly swooshy draggable graph and table of entries that allows you to quickly scan back through previous week/month - the graph dragging side to side as the table of entries scrolls up and down. A separate analysis screen allows you to see 7-day, 14-day and month-by-month changes in average BG and crucially the SD of those entries (how closely grouped or wildly scattered they are). Dig a little deeper and you'll see a summary of numbers of high/low readings, tags, photos and other useful detail to help you work out what has been going on. If you enjoy your own number crunching and/or want to amaze and impress your clinic with how marvellously you are getting on you can choose between different .csv formats for Excel or export your data as a slick PDF report.

mySugr is registered as a 'medical device' and CE marked (I think it is perhaps the only logging app to have achieved this). Data storage is safe and secure and the entries are seamlessly uploaded and synced in the background. I experimented early on with this and if no data connection is available mySugr will just wait patiently without pestering you until a connection becomes available. If you own more than one device you can log from whichever is closest to you at the time and the data will stay in sync on all of them.

What? No niggly complaints?
If you've read a review here before you will no doubt be waiting for the 'but...' followed by a long list of things I really hate about mySugr. Well it surprises me as much as it might you that I can hardly think of *anything* I would change about the app. I would love to be able to edit the preconfigured list of 'tags', either to just hide the ones I'll never use, or preferably to allow me to customise the text myself. The options they have are decent enough, customisation would be perfect - I gather this is on the 'wish list' for future versions. There seems to be a slight glitch with data export for Excel in that dates are coming through as text rather than an Excel-friendly timestamp. This has almost no relevance to any other user I'm sure, but it makes some of my occasional attempts at analysis/graphing in Excel go a bit wonky. I'm going to drop them a line about that, and it's just the sort of thing they fix in one of their version updates. (Edit: as expected, this has now been fixed!)

So I quite like it then?
I noticed something a few weeks ago that really surprised me. The way mySugr helps me keep track of my readings actually helps me improve them in a way no other app has done before. There is a sort of 'sliding scale' of reward and motivation going on that on one level just lets me know if things are slipping a little, but then - even when they are pretty much perfect manages to encourage me to keep trying harder. That's not a bad effort for some lines of code, comedy noises and a sprinkling of funky graphics. In general terms the BG average and SD over 24 hours 7 days, 14 days or month-so-far offer me a ready reckoner of how well (or badly!) any time period is going. I have a tendency to think 'things have been terrible for ages' so it can be encouraging to look back a few days and see that results were not so bad after all and a little basal testing will probably fix things.

Aiming for amber
For about a quarter of this year things were not going well for me diabetes-wise. Looking back it wasn't a disaster (see previous para) but every month I'd hope for a better average, lower SD, fewer highs and fewer hypos only to find that the results would be slightly worse not better than the previous month's. Despite the fact that I felt like I was trying harder. This is not particularly encouraging... But following my annual Pump Clinic at the end of June where I made some small basal and ratio tweaks things all seemed to slot into place. Day after day with bewilderingly good levels. I felt like I was winning. Even when we were away on holiday (a notoriously chaotic experience for my BG in previous years) I pushed to maintain this success*. Why? Well during this period I began to notice the 'high/low' marker on mySugr's home screen (see the big picture above) was no longer it's customary Red. Quite often it was Amber. Once or twice it was even Green! So in a rolling 7-day period I would find myself pushing to avoid a high or low reading that day, because if I could make it with a 'no hitter' then tomorrow the wobbles from this time last week would disappear and I'd be in amber again. I was playing my diabetes like a game.

The fact that my logging app was providing that motivation should make the folks at mySugr very pleased indeed.

mySugr is available for iOS devices in the App store and an Android version is currently in 'beta test'.

Final score: 5/5

* Fear not. Normality is resuming this week... along with some set failures and hilariously jaggedy mySugr graphs that well and truly revoke my #teamsmug membership.

Disclosure: I wasn't paid to write this review and I have no commercial interest in mySugr at all. I was lucky enough to be one of the beta-testing volunteers for 2.0 and have spoken to Frederik a couple of times but that's it.

Posted by on Monday, 15 July 2013

All supporters need support.

Mine is a supporters voice. As Mike's wife I would like to say I am there to support him in all that he needs. I try; though I freely admit to getting as fed up of diabetes as everyone else, I am not a particularly patient person. Anyway, I think the point is that I try. I'm pretty sure we all want to try, all us supporters; but it is not straight forward.

I recently met with a friend who was diagnosed with diabetes over ten years ago. I visited him in hospital, he had pneumonia along with a heap of complications which sounded suspiciously diabetes related. I asked him whether he had type 1 or type 2. He said, "I don't know." I'm not sure how well I hid my shock, I was pretty much lost for words. My friend lives with his mother. He was diagnosed when he was thirty. He is not adept at communication.

I also know his mother, who I am sure has all the feelings that any mother has when they find out their son has diabetes. I know from Mike's mum that that can include guilt, fear, and the desire to wrap in cotton wool and never let out of her sight ever again. My friend, unlike Mike, did not talk to his mother, and his mother, unlike Mike's, did not like to push for answers to the thousand questions simultaneously forming in her head. She has had to cope alone. She hasn't felt able to admit that her son's inability to communicate has left her at a loss as to how to support him. So what she does is try to look after him. She makes sure he always has a good big bowl of cereal for breakfast, and that there is always a choice of puddings on hand after his evening meal. He happily tucks in. The only piece of advice from a dietitian she has ever been present to hear is that a combination of grapes and banana is a really bad idea.

As the mother of a diabetic diagnosed in adulthood, she has never received any support. Mike's mum was in the same position, but blessed with Mike and then of course I came along and took him off her hands, again with no support and it is scary, but Mike helped me through. I am aware that Mike and my friend are at opposite ends of the communicative spectrum, most people must be somewhere in the middle. Mike is on his way to a long, healthy life, I wouldn't be surprised if he outlived me (my family have a history of heart disease). My friend is on his way to dialysis, losing his sight, losing his feet and dying before his mother. I believe his control would be greatly improved if his mother had been offered support. My guess is that most adult diabetics don't live alone, that many don't cook their own meals, so the responsibility for the control of their condition does not fall entirely in their hands. It can and should be shared.

All supporters need support.

Posted by on Wednesday, 12 June 2013

Diabetes Week 2013 - A question of research

It was great to be invited to submit a guest post for Diabetes UK's blog to mark Diabetes Week (9-15 June) this year. I'm a little late with it, so it may not make it onto their site this week, but here it is anyway.

"What aspect of your diabetes would you fund research into if you had the choice?"

Some of you may know I've been pottering off to London every so often recently as part of the Guideline Development Group that is updating the NICE Type 1 Diabetes Guidelines. I'm on the Group as one of two 'punters', part of the Patient and Public Involvement programme that seeks to include a grass-roots perspective from patients during the development of NICE guidelines. As a result I've had a bit of homework to do and have come into contact with a whole stack of research papers on all sorts of topics.

I have good reason to be thankful for NICE Guidelines. As a patient, well written guidelines give you a meaty, authoritative document to wave in front of your clinic or GP that says, "Look, this is what the NHS says is the very best way to treat my condition, and that's what I want". NICE prides itself on being 'evidence based' and looks into all sorts of different approaches/treatment options to try to evaluate the very best options in terms of efficacy, balanced with cost-effectiveness. Thankfully 'cost effective' is not a euphemism for cheap here. Even very expensive options, such as an insulin pump, can be recommended provided that the research demonstrates quantifiable benefits to the patient.

At the risk of offending researchers everywhere, to my simple mind the research papers I've been looking at seem to divide roughly into two camps. One is 'I wonder what...' and the other 'I reckon...'. The second camp also appears to include studies with a vested interest in demonstrating a particular outcome, sort of 'Can we show...'. It is a good job that published research is peer-reviewed and some considerable effort is taken to ensure that studies are designed fairly, but nevertheless there is a part of all of us, I think, that looks slightly sideways at research into how marvellous a new drug is that was paid for by the company that makes the product. NICE even have a special method for reviewing research papers to assess their reliability 'grade'.

So what of my own 'I wonder what...' question? To be honest, it's probably a bit more of an 'I reckon...', but only because of my own experience over the last few of years. I also suspect (given some of the online questionnaires I have been invited to complete recently) that there is already a growing body of work on the subject. Best of all, there is no Big Pharma organisation lurking in the shadows looking to make squillions from a new wonder drug. What would I like to see researched? It is simply this: "The use of internet forums, social media interaction and blogs (the Diabetes Online Community) for improved patient outcomes with T1 Diabetes".

Now I'm not for a minute suggesting that posting a couple of threads on a diabetes forum replaces the expertise of dedicated healthcare professionals or attending regular screening or clinic appointments, but diabetes is a frustratingly individual condition and can be quite isolating. Time and again I see new people join diabetes forums, or begin tweeting who have lived with type 1 for decades but rarely, if ever, met or compared notes with anyone else living with the condition. I'm a passionate believer in the power of peer support and have seen its transformative power at work in the lives of many individuals. Successful diabetes forums are huge resource of pooled experience, knowledge and can instantly put you in touch with approaches, techniques and suggestions from clinicians all over the world. Diabetes blog posts that mirror your own experience from another's perspective can give you a real sense of connectedness and help you realise that it is not just you. Conversely, another post might make you realise that anything is possible. Social media channels and interactions provide very genuine and in some cases almost instantaneous support and encouragement when diabetes is not 'playing nicely'.

There is a new breed of Healthcare Professional learning to embrace and value these resources, and it would be nice for them to have some good hard research numbers to back up their enthusiasm. Hopefully we can move away from the time when HCPs never looked at online diabetes resources and suggested that their patients never read them.

If you are living with type 1 diabetes you are not alone. There are 1,000s of others facing the same daily battles and together we can make each other's days just that little bit easier.

Posted by on Monday, 10 June 2013

Diabetes Week - Artificial Pancreas Project

It's Diabetes Week in the UK this week and after my rather forlorn post about the apparent disappearance of C8 medisensors non-invasive CGM last week I was pleased to read this little update on the Artificial Pancreas Project (APP) from Diabetes UK today.

It's still reasonably early days, and to my mind we are still quite a way off a 'real' management solution, but step by step people are cautiously being allowed to hand over the reins overnight to an automated system in their own home rather than under strict lab conditions with technicians standing by the bedside clutching Lucozade and NovoPens.

For those of you who have *no* idea what I am going on about, the Artificial Pancreas Project is seeking to 'close the loop' between two clever bits of diabetes kit. A Continuous Glucose Monitor (CGM) that can measure glucose levels and an insulin pump that can provide varying doses of insulin. In fact most people who happen to see my pump tend to assume that we are there already, and assume that a pump will just somehow 'know' how much insulin is needed and provide it automatically. Sadly it's not quite that easy, and while an insulin pump is a brilliant therapy option it does still require a fair amount of effort, guesswork and to be honest more than a little luck in balancing all of the hundreds of variables involved in day-to-day BG tomfoolery.

Part of the problem with the APP of course is that the technologies involved are improving, but still rather less than perfect. Continuous Glucose Monitors make an estimate of blood glucose levels based on glucose concentration in interstitial fluid (the stuff sloshing around between cells in tissue). This tends to lag a bit behind actual BG values, and those lucky enough to have access to CGM will know that what you are really getting is 'trend' information rather than the accuracy* of blood-based fingersticks. CGM manuals/marketing are usually pretty clear that any doses/corrections made should be done after confirming results with a fingerstick test. But the closed loop system needs to use this very same stream of trend information in order to make dosing decisions.

Currently the human trials of the APP are showing relatively promising results for looking after things overnight. To know that you had a smart system carefully tweaking your levels while you slumbered would be fantastic, but of course a full Artificial Pancreas would have to go much further and tackle the thorny issue of mealtimes. Personally I think we are a looooong way off that. For one thing current 'rapid' analogue insulins are hopelessly inadequate for the task. They take far too long to get going (1 hour for corrections to start taking effect anyone?) and act over far too long a time period to give a bunch of electronics, however smart, the ability to take over entirely.

What I would hope for instead is a commercially viable 'smart pump' which combines much of the effort and user knowledge/experience that currently goes into effective pump use, but with automated AP trickery to take the edges off the errors and irritations of daily pancreas impersonation. A system whereby you would bolus for meals, set TBRs for activity and generally do the basics, but the pump would be constantly monitoring how things were going and have the ability to tweak things and make corrections to keep things on a more even keel.

Now that really would be something.




* It should be noted, of course, that fingerstick BG tests in themselves are not particularly accurate and only really serve as a general guide as to what is going on.

Posted by on Thursday, 6 June 2013

Has the light gone out on C8 Medisensors optical CGM?

Someone left a comment earlier today asking if I knew any more information about the C8 Medisensors non-invasive CGM, which was given CE mark approval late last year. Some of you may remember me getting quite excited about it after having seen the device in action.

At that stage, the general expectation seemed to be a European launch in the Spring of this year. In January I got wind that the launch had been put back slightly to allow for 'further enhancements' to be made prior to the launch in mid-2013.

I've had a little look around the internet, but all I can find are reports/stories from late last year. Trying to look up the C8 folks I met via LinkedIn suggests that they stopped working for the company in January this year. It seems that at about the same time John Kaiser took over reins at the company - so what happened then?

With an increasing sense of doom, I realised that their website seems to have gone offline in the past few months too.

To be honest, I'm gutted.

Just wondering if anyone knows what the story is? I really believe that their non-invasive CGM, if it lived up to the promise shown, genuinely had the ability to completely change the landscape of diabetes care across Europe, and CGM pricing/availability in particular. £2000 for 4 years, rather than £3000-£4000 every year would put self-funded CGM within the grasp of many more people in the UK. A currently frustrated and untapped market.

I can't have been the only one waiting for lauch with one hand reaching for my wallet.

Anyone from C8 Medisensors out there?

Posted by on Tuesday, 4 June 2013

Splish splash - aquapac insulin pump case

The sun is shining... thoughts turn to Summer holidays.

This year we will be returning to Cornwall, to the very same place we stayed a few years ago. When we were there before the girls and I quite fancied a little gentle sea-kayak pottering in the wide open bay on our doorstep but never quite managed to bump into the kayak hire people who seemed to have a rather relaxed approach to timekeeping (and attendance in general). This year we are hoping to give it another go.

The last time we were there I was on MDI, but this time, of course, I have Artoo to think about.

I don't suppose we will be out for very long so I could just detach and leave the pump on the shore. I suspect there will be enough activity involved in paddling to make hypos more of an issue than raging highs, so the lack of basal for an hour or so would probably not be much of a problem. But... what if something happened. The last thing I'd want if anything untoward were to occur would be to be bobbing about awaiting rescue with the added 'excitement' of being just a few hours from DKA once my last bit of basal runs out.

Having asked around I've had very good reports of the Aquapac waterproof pump case, so I've decided to order one. The case is clear so I will be able to check on how Artoo is doing and it's waterproof enough to cope with anything from a bit of gentle splashing to some full-on dunking - for a short while at least!

All we have to do now is hope the kayak hire people actually turn up!

Posted by on Thursday, 9 May 2013

Diabetes is very annoying - a pointless rant

Just wanted to join with all of you who have recently felt

AAAAAAAAAARRRRRRRRRRRGGGGGGHHHHHHH!!!!!!!!

about the ridiculousness of your D.

I've been having a few unexpected low-level 'dips' recently. Not really hypos exactly, just a few readings under 4 where I wouldn't expect them. And the more of those I have, the more highs I seem to have too. Not ideal. Figured it was probably basal/warmer weather related, so thought I would do some basal tests.

First day I tried to do 'lunch - eve meal'. But I had a 3.7 mid morning after a gym visit so scrapped that idea.
Second day I thought I'd do 'breakfast - lunch'. Woke up to a 3.4. Hopeless.

On Monday evening this week I took the bull by the horns and took my entire basal pattern down by '1 notch' just so I could get some basal tests in.

I've spent Tuesday and Wednesday battling relentless highs. I did manage to get a semi-basal test in yesterday afternoon, which was inconclusive. I've gone from 'a bit too low' to 'pretty much continually too high'.

Woke to 10.8 this morning having gone to bed with what Artoo assured me was exactly the right amount of IOB to deal with my 10.6 at bedtime.

So now I'm back to where I started - basal back down again.

The really annoying thing is that I have two basic basal 'patterns' running. One for weekdays, the other for weekends. Initially this was just to account for waking up a bit later on Saturdays/Sundays, but 'weekend weirdness' soon meant that the weekend pattern was tweaked down and is now regularly only 80-90% of the weekday one. Even when activity levels seem identical I just seem to need less basal on weekends.

It's incredibly frustrating to have to fight relentless highs with a basal of 11.8u a day on Tuesday, when 10.6u on (Bank Holiday) Monday didn't result in those stubborn highs at all.

Less insulin = lower levels. More insulin = higher levels. Madness.

I think this is what grinds me down most about living with diabetes. Where on one week you put the effort in, count carbs, make corrections and levels behave themselves really nicely. But then another week you put in exactly the same amount of effort and use exactly the same approaches for the same meals that you know work well (because you experimented for ages to get to that point) - except that this time it just doesn't work.

And I pretty much know that my basal being 'out' causes this. And trying to fix it so that I can actually test basal has given me the high BG grumps.

Deep breath. Try again.

Posted by on Friday, 3 May 2013

Running. Battles.

It's been a busy old time recently, and updates on the blog have taken rather a back seat. Sorry about that!

I realised this week (on Monday in fact) that I had not yet even managed to post an update following my Half Marathon shenanigans in Bath exactly two months ago today. Shocking!

Part of the reason for this post is to say an ENORMOUS thank you to everyone who donated so very generously in support of my race charity Diabetes UK, in fact your generosity was so apparent that I was also able to donate to Medical Detection Dogs (the tiny charity that is able to specially train clever pooches to sniff out hypos and hypers). In total you raised the mighty sum of £685.50, you should feel very proud of yourselves, you rock!


Ready for the off at the Bath Half 2013
I had a great time on the day itself. It was bitterly cold at the start where everyone stood shivering for about an hour, but the mood was very cheery nevertheless. It was my first distance race of any kind, and I think I had naively underestimated the experience of running among something like 11,000 other people. It took much longer than I'd thought to find space enough to run at my 'own' pace. I was able to finish the 21km (13ish miles) in 1hr 46 mins, which is just about as fast as I ever thought I'd be able to do it.

I think the D fairy must have been having a day off that day, as my levels were bewilderingly good. The race started at 11am, but even so I reduced my breakfast dose to 90% of normal. Thanks to Artoo I was able to set a TBR which took my basal down to 10% an hour before the start and throughout the run. My levels on the day looked a little like this:

3.00am - 7.3
8.00am - 7.5 Breakfast
9.30am - 7.9 waiting to start
1.00pm - 7.0 Finish! I downed a 60g CHO bottle of lucozade on the way round
2.51pm - 6.8 Lunch

To say I was pleased with those is a bit of an understatement! I wondered at the time if perhaps I should run a half marathon every day?

As is the way of things, it has taken me a fair old while to get the last few donations collected, but the cheques are now on their way to the respective charities. Immediately after the race I'd found myself reflecting on the unexpected enjoyment I'd found in the training, but thought I wouldn't hurry to take part in another event. Then a *very* odd thing happened. Last Sunday was the London Marathon, and I actually found myself thinking, "Well... I wonder if I could...". Encouraged by Dave and his tangerine enthusiasm I have unexpectedly put my name forward for the 2014 ballot. The chances of making it into the event are pretty slim - but it would be an interesting challenge!

The rest of March and April have been a bit of a mixed-bag levels wise. March, and Easter in particular involved quite a few family get togethers and celebration meals which are always fraught with guesswork and wild stab-in-the-dark boluses with all the (lack of) success you might expect. April looked to be a little more settled in patches, but by the end of it a few chaotic days had worn me down, wrecked my averages and SD and I ended the month feeling quite grumpy about the whole unrelentingly inconsistent business.

Part of me thinks I am pushing myself too hard and need to learn to be happier with the successes I am seeing rather than contantly reaching for those elusive 'perfect' days. Many people who have lived with Type 1 Diabetes for any length of time will be familiar with that feeling I think.

I've decided it's time to run a few basal tests during the day just to make sure there is nothing obviously wonky on that score. A tiny dip below 4.0 after the gym has put paid to that for today. Ah well.

Enjoy your Bank Holiday everyone!

Posted by on Monday, 11 March 2013

That 'biohub' thinghy...

I don't think this caused quite such a stir over here as it did with people living with type 1 diabetes in the states, but if you'd like to know a bit more about the spongey thing that might make insulin on demand in realtime and the hoo hah it caused you should probably read this post:

http://typicaltype1.com/2013/03/11/the-biohub-brouhaha-of-2013-an-animated-retrospective/

It will make you smile.

5-10 years eh? Sounds quite familiar.

Posted by on Thursday, 31 January 2013

The Einstein Principle

Pick your cliché...

"I had it coming"... "Pride comes before a fall"... "Sod's Law"... "I brought it on myself"...

So hands up who thinks they know what has happened just as I posted something about how well things have been going recently. Right. So that's pretty everyone with diabetes reading this, every parent of a child with D, or anyone who lives with someone 'pancreatically challenged' then. Thought so. OK you can put your hands down now. Don't want your arms getting tired.

Yup. As you would all expect, immediately after I allowed myself a little glimmer of diabetic self-satisfaction the other day, things have well and truly gone 'off the rails'. In no small part self inflicted (a family birthday celebration with not quite enough self-control on my part). Partly stupidity - I forgot to press the final 'confirm' to administer a lunchtime bolus, cue stratospheric BG mid afternoon. A suspected big fat tubing bubble overnight (I know!). And also partly a little basal-tweaking needed as my half marathon training has started to kick in. What was looking to be a pretty decent set of figures for the month are suddenly looking decidedly ropey.

It's like that moment when [insert the name of your favourite sports star or team here] has put in all the hard work throughout the [season/game] and looks on course for glorious victory only to throw it all away with an errant putt on the 18th green, a missed double 16, by spinning out on the corner, conceding a sloppy goal in the 89th minute, or double-faulting the set away with a catastrophic loss of concentration.

It hasn't helped that I had a letter today from the fine folks at the mobile eye screening service today to say that they had spotted some 'background changes' in my eyes again. They said that once before a few years back, but I have to confess I far prefer the letters since then where they had been saying, "Nope, nothing to see here matey". No treatment needed, just another 12 month check. But not ideal news in a week where on-target readings have been a bit thin on the ground.

And of course (crassly stupid mistakes aside) those days when the wind is behind me and my pancreas-impersonating-guesses all come together with effortless perfection rarely 'feel' that different to the days when every reading seems determined to skip over that ever-so narrow target range that we all try to aim for. Days when meter and pump are constantly warbling warnings of imminent doom for being too high or too low. This is particularly the case when, like now, my basal profile needs a little tweaking. Tried and tested approaches, ratios and meal choices lose all reliability. Corrections and doses either seem to disappear entirely or hit home like a sledgehammer. And all the time I'm trying to just do the 'normal' things that I know work.

Albert Einstein is often quoted as having said that:

"Insanity is doing the same thing over and over again and expecting different results."

Well I don't know about insanity, but that's a pretty darned good description of living with type 1 diabetes.

Posted by on Saturday, 26 January 2013

Bubble, bubble, tubing trouble

Looking at my stats it seems Artoo has been having a bit of a run of form recently. Not without a wobble here and there obviously (let's not be silly) but certainly a decent punt at things on the whole, and far fewer eye watering levels in the 20s than in any of the months since I started on an insulin pump (which were never really part of my MDI experience). According to the funky monthly reports on my current BG logging app of choice (the excellent mySugr - 'making diabetes suck slightly less') my purple patch seems to date back to October. I even seemed to manage Christmas with fewer Quality Street induced gaffes than I would normally expect. Generally average BG in the high 6's low 7's (108-126), with an SD around the mid 2's (36). This makes me happy.

Aside from me taking a *very* long time to get used to the whole pumping business (Artoo was very patient with me) I believe there are a couple of changes which have helped me, so I'm posting this insufferably smug blog entry just in case there are any frustrated insulin pumpers who stumble upon it that are putting in all the effort but not seeing the results they are hoping for.

Firstly, September was the time that I switched infusion sets. I'd been having a fair few failures for some months, but only in amongst a majority of set changes that worked perfectly. At the time it was less obvious, but looking back, a readings/recoveries from mid 20s almost every month were messing things up for me. If you are getting set failures/site issues more than a couple of times a year it could well be worth asking your clinic/DSN/endo what alternative lengths and types of infusion sets are available to you. I've not had *one* site failure in the past four months - and aside from the lack of eye-frying levels, it also makes me feel a lot better about the whole business of diabetes day to day (as hard as I try not to part of me always takes these out of range disasters as a sort of personal failure).

Secondly, and my initial reason for writing this post, I think I have cracked the 'bubbles in the tubing' problem. Maybe not 100%, but pretty darned close. I'm not sure how common this is, but throughout my first year on a pump I was occasionally victim of a 'phantom bubble of doom'™. I'd fill the reservoir with room-temperature insulin as advised, having first moved the plunger up and down to lubricate the inside of the reservoir. I'd flick and jiggle for all I was worth until I was absolutely sure that there were no bubbles in the insulin. Fit the reservoir to the pump, and prime with the pump vertical, tapping all the while to ensure that any rogue bubble-ettes got expelled in the priming, and then connect everything up happy in the knowledge that I had achieved the perfect bubble-free set change. BUT. The next day, look at the reservoir and BAM, there it was a big, fat, lurking, bubble of doom. Ready and waiting to find its way into the tubing at some inconvenient moment and then effectively deprive me of basal for an hour or two. Or mess up a meal bolus. Or both. I do try to check my tubing a few times a day but these suckers are hard to spot. And just as frustrating as the high BGs they caused - was not knowing where they were coming from! I was as sure as I can be that they were not there when I changed the set. They just seemed to be emerging out of nowhere with an evil glint in their eye overnight.

I did discover a suggestion on You Tube, which I won't link here as it was a complete disaster for me. The technique (described as something like 'degassing the reservoir') involved creating a fairly strong vacuum in the insulin vial by repeatedly drawing air out of it until you could do no more. Do not try this! My experience is that reservoirs are just not designed to operate under that kind of pressure. On more than one occasion (and I only tried it about 3 times!) the o-rings failed and insulin began to leak 'behind' the plunger while the reservoir was in use. Complete BG chaos. But it did get me thinking...

If you too suffer from occasional 'phantom bubbles of doom' - here's what seems to be working for me. When you draw up the insulin into the reservoir it is usual to first inject air into the vial, equivalent to the insulin you are about to withdraw, to equalise the pressure. Instead of this only inject half of the air into the vial. Additionally you should make sure that you inject the air with the vial downward, then invert the whole caboodle to draw up the full insulin amount. Then flick and jiggle any bubbles that have crept in as normal. Disconnect the reservoir first, to allow the air pressure in the vial to normalise again. It seems that the very slight vacuum created is not enough to worry the o-rings, but is sufficient to make the insulin less 'aerated' in the reservoir. Or something. Anyhow, it seems to be working!

Obviously... Disclaimer, disclaimer. Not medical advice. Consult a qualified person. Don't try this at home. Read the documentation supplied with your pump. Simply reading this blog post may void your warranty etc etc.

If you have any top tips that you have discovered for yourself - please share them below :)

Posted by on Monday, 7 January 2013

New year. New challenges.

Happy New Year all of you. Trust you had a suitable treat-filled festive break and hope that your levels played nicely if you are also one of those people who 'enjoys' a little pancreas-impersonation on the side.

In an unexpected (and possibly quite unwise) move I have decided to take on a little new year challenge and will be running the Bath Half Marathon on Sunday 3rd March 2013. I blame the decision on a good natured after-dinner family conversation fuelled by the dangerous combination of optimism and red wine.

I've always quite liked Marathons. Particularly pre-diagnosis. Which is lucky really, because by the time I got diagnosed they had made that fateful name-change decision, which completely ruins this gag.

On the other hand I've never run any kind of real distance. Ever. I've been going to the gym semi-regularly for a few years, so at least I'm not starting from absolute potato, but I am still quite daunted by the prospect. Fortunately a keen distance-running forum friend has been on hand to offer tips, advice and even a detailed eight week training programme.

Day 1 was today. Thankfully the instruction was to run '30 minutes at easy pace'. The rest of the week looks a little more challenging. I'm not even going to look at next week - I suspect it mentions hills.

I am very grateful to Diabetes UK for the offer of a place at the 'Bath Half', and have committed to raising a minimum of £250 for their worthy cause.

If anyone would like to support my endeavours you can make a donation safely and instantly online via JustGiving here: www.justgiving.com/everydayupsanddowns. And the great news is that all your money will go to the charity and that DUK can reclaim tax to make your money go further.

If you live near Bath feel free to pop down and laugh at me on the Sunday. I'll be the sweaty one at the back, breathing hard and clutching fruit pastilles.