Shoot Up or Put Up

“...so then I gave him an alpaca wool willy warmer and he said he’d use it to keep his cucumbers warm!” has to be my favourite quote of my diabetes filled weekend.

I spent a fun weekend in Birmingham with 70 people living with diabetes, working with diabetes or caring for people with diabetes. We were discussing priorities in diabetes care over the next few years and what charities could most effectively do to ensure they are delivered. Interesting stuff and more on that soon, but what made it fun was the breadth of conversations you have when you spend a weekend with a group who have only diabetes in common.

Having type 1 and being married to someone with type 1 is apparently a very good thing – you both understand what it’s really like to live with diabetes but the house looks like a war has broken out if you both have a hypo in the night.

I spent an embarrassing amount of time evangelising about pumps, CGMS and blogs.

Claire and I spent a while enthusing about the magic of DisneyWorld,

Gordon and I discovered a shared interest in ballroom dancing, although I think his talents in that area far exceed my attempts.

I met someone else who likes writing about diabetes – the famous and lovely Kate who writes about pumping in Diabetes UK’s Balance magazine.

We talked about how hard it is to get young people involved in volunteering but were very impressed to see that people are starting early nowadays as we shared the weekend with a 4 month old baby.

I talked to so many people about how attitude is so critical when it comes to living with diabetes. We talked about how easy it is to let yourself think that diabetes can stop you, when really it’ll only stop you if you let it. And on the other hand how when we’re sometimes a bit too tough and resilient for our own good people don’t see how hard it can be to live with diabetes or how much we need decent care.

The highlight of the weekend has to be the alpaca wool. Fellow pumper Marian keeps alpacas and livened up an edition of BBC’s Gardener’s Question time by sharing her views on the fertiliser properties of alpaca poo and presenting the Chair with her homespun alpaca wool made into an interesting garment. I didn’t expect to have that conversation when I set off for Birmingham on Saturday!

Fashionable terrorist-chique

I was recently reminiscing about my childhood with some friends.

I grew up in Northern Ireland during the 1980′s amidst the chucklefest that was The Troubles. I usually say we lived in Belfast, but in fact we lived in the leafy suburbs of Cultra – which, as anyone who knows the area will attest, is not exactly the Falls Road. However, despite that, we lived in a house with bulletproof glass windows, barbed wire along the 6ft fence and reinforced gates.

As we chatted about this, I remembered that Sinn Féin was often described as the political wing of the IRA. Therefore it sort of followed that the IRA was the terrorist wing of Sinn Féin. Leaving the heady days of Northern Ireland behind, I wondered whether other organisations could have terrorist wings.

In the UK we diabetics have problems with the NHS, health boards and funding and our chums in the USA have endless issues with healthcare funding and insurances companies. There are clearly plenty of targets, so why not form a diabetic terrorist organisation? We’re all (moderately) clever, well organised and pretty damned fanatical about diabetes – so I can’t see any problems there. We could call it the PCA – the Pancreatically Challenged Army.

I don’t know about you, but I’m somewhat squeamish about real terrorism – I’m almost certain I couldn’t dole out a punishment beating to a health board executive, kneecap a drug rep., or plant high-explosives in an insurance company headquarters.

So I’m thinking more mischief than real terror – rude things said on blogs, seven thousand simultaneous requests for free meter samples, excrement trebuchets, live monkeys released into buildings – that sort of thing. No one will get hurt – just a bit smelly in the case of the fantastical poo-catapult.

So what would an active global campaign by the PCA achieve? Absolutely nothing. In fact it would probably set back the diabetic cause by years – rightly creating waves of public outcry, criminalising those of us with wonky pancreases and leading to sanctions on critical diabetic supplies such as Fruit Pastilles.

But isn’t it just great to fantasise about for just a moment? Turned down for pump funding yet again? Can’t get the number of test strips you need each month? One encrypted message to your nearest underground PCA cell and terrible revenge would be wreaked on your behalf. Oooooh, now that feels good.

Generous readers who a) like fundraising for Diabetes UK; b) don’t like rattling a tin; c) like Intermaweb-based systems, will be thrilled to hear that Diabetes UK have launched a new on-line fundraising system (or you would have been, if I had not stolen my own thunder in the headline…)

The new site can be found at www.diabeteschallenge.org.uk and aims to allow people to set themselves fund-raising challenges – abseiling from a bridge, scaling the south west face of Everest, sponsored lion taming, etc., etc. Friends, family and other hangers-on can contribute to the target by using their well-worn plastic credit cards via the new site.

So far, so thrilling. However, using Diabetes UK’s effort does mean that 100% of the cashola does actually go to Diabetes UK. Unbeknownst to me (prior to writing this article, of course) certain well known on-line charity sites are in fact for-profit organisations who take a slice of the cash to fund the running of their site, salaries and, of course, line shareholder’s pockets. Which is great (if you’re a shareholder).

Said well-know sites do, of course, let you know about their fees in advance and there’s nothing wrong with for-profit companies doing this. However, I have to confess I do prefer the idea of all the cash people raise going to everyone’s (well, nearly everyone’s) favourite UK-based diabetes charity – so this can only be a good thing. Now to find my wooden chair and whip – I’ve got lion taming to do.

The terrifying hidden costs of diabetes

More proficient commentators have discussed the hidden costs of diabetes on many occasions. For example, the denial of a pump now may lead to poorer glucose control and the much higher costs of complications later. Poor provision of eye checks may lead to expensive problems decades later. These issues have been well covered, but I’m talking about the real hidden costs.

Before I was diagnosed with diabetes a few years ago I was like any other bloke. I didn’t carry a bag around with me; I just shoved my wallet, keys, mobile phone and all the other junk into my jeans pockets. This gave me the uneven profile of a lumpy rickets-victim but at least I didn’t have to carry some effeminate bag.

Post-diagnosis I was issued with a tonne of kit to lug about – pens, meters, lancets, Fruit Pastilles, Lucozade, needles and so on and so on and so on – and I came to the sad conclusion that I would finally have to embrace the world of the Man Bag.

To begin with, I started off with a simple over the shoulder one-strap Oakley rucksack and that did me for some time. But after it finally fell to bits – and perhaps slightly influenced by my wife who makes handmade handbags – I upgraded. First to a fancier Victorinox rucksack. But then the rot really set in when I indulged in a Visconti messenger bag. The fantastic smell of new leather first attracted me to this work of art and I thought I would treat myself the once – just so I had a nice bag at our wedding, you understand.

But by then it was too late, I was sucked into the heady world of man bags. When you really start looking, there’s a whole range of cool, funky bags for men. All of which are suitably manly and don’t effect your usual rugged, chiselled bloke look.

My fetish most recently reached a peak when I found myself buying a limited edition Jack Spade bag in the Manhattan branch of Bloomingdales and I knew that I had discovered another cost of diabetes – the fancy man bag.

Delicious beer, yesterday

It is with ill-disguised excitement that I’m overwhelming proud to announce your soaraway Shoot Up’s new diabetic events calendar! Woo!

Over on the right hand side of the page (and by clicking here) you can see every diabetes-related event happening in the UK, as long as:

a) we’ve been told about it
b) we’ve bothered to add it to said calendar

If you want to tell us about an event you can have a look at the guidelines (such as they are) and then drop us an email to either of us or to our fancy-pants new email address events@shootuporputup.co.uk.

If that weren’t thrilling enough (readers with a fragile disposition may need to be sitting down for the next part) then I’m also frothing at the mouth with glee to announce Shoot Up’s inaugural meet up in Edinburgh on Saturday 28th November 2009. We’re announcing it quite early so our American friends have time to organise time off work, flights, entry visas, vaccinations, quarantine, etc., etc.

So come November, not only can you have the opportunity to meet me but you can also meet my esteemed co-writer Alison who is travelling up from the wilds of England to be here. Also present will be popular guest writer Katie (aka Tim’s wife) and the non-contributing but moral-supporting Alison’s hubby. Not only that, but Tim’s pharmacist will also be there, for some reason.

We’ll be meeting from 7pm onwards in Au Bar (it’s a pub, so over 18s only – sorry youngsters) on Shandwick Place, Edinburgh, EH2 4SD and we’ll try and keep the diabetes talk to a minimum. More details can be found on our Facebook events page or you can email either of us.

All are very, very welcome, so see you there!

Well chaps, it’s that time of the month again – poll results time. Hurrah! As always, our highly scientific, balanced, bias-proof, carefully weighted survey has caught the mood – the Zeitgeist, if you will – of the diabetic community.

The majority of people answered our question “I know… a) everything about diabetes; or b) nothing about diabetes” with a). Therefore our beloved readers are either experts on diabetes, whose knowledge of chronic illness far exceeds that of the national average or they’re all pathological liars. The jury remains out.

This month, we’re quizzing you about your local health care provider – whether this is your local clinic, hospital, doctor, endocrinologist or whatever – and how good you think they are. You can give your answer to the question “My local healthcare provider is…” over on the right from the following range of possibilities:

• Faultlessly brilliant. I’m in awe
• On the whole not bad at all
• Neither good nor bad – health purgatory
• Needing a lot of improvement
• So bloody awful I may as well use a witch doctor

With regard to the last option, I have to confess I’ve never consulted a witch doctor about my diabetes. So if they are, in fact, absolutely marvellous at treating diabetes I apologise unreservedly to any witch doctor readers that might be offended by the disparaging tone of the option. Please don’t turn me into a frog.

Despite my championing multiple daily injections in a previous article, I have to finally come out and confess that I’m getting a pump. Eventually.

Back in the heady days of July, I popped along to my diabetes clinic and spoke to the specialist diabetes nurse about pumps. We discussed my diabetes and the problems that I have with it – the main problem being my BG range is huge – first really high, then really low.

We then had a chat about pumps in general and discussed the research I had done and how I thought one could help me to level out my BG, so that the graph of my results could resemble something less like a profile of the Himalayas. We also had a fiddle around with a pump and got very geeky about how they could be configured and programmed to precisely match my insulin needs. After an hour or so of jolly chat we both reached the considered conclusion that pumps were very definitely the Way Forward.

A month later and I received confirmation that lo! I had indeed been placed on the waiting list for funding and training. The email also casually mentioned said waiting list was eighteen months. Grr.

I would, in other words, have to wait until 2011 to get my pump. By then I would have reached the ripe old age of 34 and would be 2.8% of my lifetime closer to the cold, unforgiving grave (assuming I get my full three score years and ten). I was not, and indeed am still not, pleased.

As I have a legal background in contentious stuff (to use a technical term there) and having been educated in the “Alison Finney School of Badgering Primary Care Trusts” I have decided not to stand for this. This is not because I want to skip the queue to get a pump ahead of everyone else – I want anyone who needs a pump to get one quickly. Healthcare provision is partly about serving the patient’s needs and unless patients let their healthcare providers know what their needs and expectations are nothing will ever change.

Realistically I’m not expecting the NHS to hand pumps out like sweeties (sweeties and diabetes never mix, after all) but it’s not unreasonable for diabetics to get the healthcare support and resources that they need. Especially when an increasing number of studies have shown that provision of pumps and good healthcare lead to fewer complications, which in turn leads to lower healthcare costs in the future. In other words, spend a bit more money now and save a hell of a lot later.

As I mentioned in my article about pumps being debated in the Scottish Parliament, Scotland seriously lags behind the rest of the western world in pump provision. Out of population of five million, only 416 people in Scotland have pumps for goodness sake! Scotland and the UK really do need to be dragged into the 21st century in relation to diabetes care.

So what have I done so far? As a starter for ten, I’ve corresponded with the various groups that support pump users including iPAG Scotland, the tireless Lesley at INPUT and Diabetes UK Scotland. In addition, I’ve written to my Member of the Scottish Parliament (health is a devolved matter – so Scotland deals with it, rather than Westminster) and asked for his support, which he’s confirmed he will give. I’ve also bashed off a note to the doctor who heads up the pump provision at my hospital to ask for his comments.

So, dear readers, the saga continues and I’ll keep you up to date with the thrills and spills of pump provision within the NHS as it happens. As always your comments and experiences are always very, very welcome here and on the forums.

The thills and spills of formulae

In an idle moment and for a bit of fun – I use the term “fun” advisedly here – I decided to knock up a diabetes spreadsheet.

I thought it would be interesting (again the term “interesting” is relative here) to log my insulin doses, carbohydrate intake and resultant blood glucose. By comparing the carb to insulin ratio – over, say, a 14 day period – to the resulting BG target-range hit-rate, I could objectively calculate my ideal ratio at different times of day. From this data I could then create a personalised insulin calculator. I could type in the time of day, my proposed carb intake and from that calculate the correct dose of insulin to stick in – all based on the data I collected earlier.

I don’t need to tell you, it was a dull, rainy weekend.

I know that the minute I publish this, someone will say in the comments below “Ah yes, the ‘Carbotron-XP’ software can already do this for you”. However, despite that inevitability, it was an interesting exercise to work out the formulas, etc., by myself.

This was mainly because I quickly realised how insanely complex it is to note all the relevant factors and come up with objective calculations. Measuring and logging my BG, carb and insulin intake before and after meals is pretty straightforward (if incredibly, incredibly tedious) but then it gets more complex.

What if my BG is high before my breakfast banquet and I stick in a correcting dose – in addition to an amount to cover the roast pheasant and flagon of port I have each morning? If I simply divide the number of carbs by the amount of insulin I’ve put in then that screws up my carb:insulin ratio calculation, as it doesn’t take account of the correction. So corrections have to be recorded separately.

To keep things simple, I’ve also divided the day into eight separate blocks – that is before and after meals and two night-time blocks. But what if I have a mid-morning snack which I might cover with a unit or two? If that’s not recorded then, it too, will screw up my calculations. I’ve therefore had to cheat and lump my elevenses in with my breakfast. While this is probably near enough, it starts to add a margin of error into the equations.

More errors inevitably creep in as the spreadsheet doesn’t take account glycaemic index, exercise, stress, phase of the moon, tide times and everything else that affects my blood glucose.

And so, in the end, my highly objective exercise results in a rough guide to carb:insulin and requires quite a lot of finger-in-the-air guestimating to get it to work. If carefully recorded data and the massive computing power of Microsoft Excel can’t come up with a useful guide to diabetes, then it’s no wonder I manage to completely cock-up my doses from time to time. I suppose what is more interesting is that – apparently against the odds – I manage to get it right quite so often. Go me!

For years I’ve had a nasty habit that scares and un-nerves my closest relatives. At first they were completely baffled by it, then they came to understand it and have now developed some coping strategies.

I coped fine with my diabetes at university. My housemates were great about not eating my emergency food, they picked up the pieces on the odd occassion there was an alcohol/food/insulin/sleep miscalculation and I didn’t really have any serious problems. I just got on with it.

The problems started in the holidays. Everytime I came home from uni I’d go hypo. Not just a bit low. Proper, need help hypo. I pondered insulin doses, changes in activity levels, sleeping patterns, diet etc but nothing really seemed to explain it. Then the parents spotted the problem. I wasn’t reacting to feeling low. I’d just ignore it. When I look back, I remember sitting in my parents house numerous times thinking “I feel low” but not doing anything about it. I was just waiting for someone else to deal with it.

And even now, if I’m at home with the husband my CGMS alarm always wakes him before me. I can ignore it for ages. Yet if I’m alone, I hear the alarm pretty much as soon as it goes off.

When I’m alone my self-preservation instinct is strong. I react to what my diabetes is telling me and ignoring a hypo wouldn’t even cross my mind. But put me somewhere I feel safe, surrounded by people who love me and know how to cope with a hypo and I take a break. It appears that I subconsciously relinquish diabetes responsibility to those that I trust.

At some point it appears my brain decided it couldn’t cope with the 24/7 nature of diabetes and would therefore take leave whenever the opportunity presented itself. Unfortunatley my brain isn’t a very considerate co-worker. It doesn’t schedule the leave or brief the people who are meant to be covering while it relaxes for a while. It just wanders off leaving a trail of diabetes chaos behind it. Thankfully my habit has been spotted and the family keep a watchful eye for ignored lows.

We think controlling diabetes is all about insulin, but I think we underestimate the power of the mind.

One of my friends introduced me to someone the other day as a “diabetes expert”. I’d never really thought of myself as an expert.

Do I fully, 100%, in depth understand the biology of diabetes? Not really. I function pretty well at the islet cells don’t work level, beyond that I only really take an interest in the biological side when I look at the feasibility of treatments or cures eg you’re giving people new islet cells? Sounds good, how do you make sure you their bodies don’t break those like they broke the last lot?

Do I understand my diabetes? Can anyone say yes to this? If you can, could you please let me into the secret? I have a good idea of how my body reacts to insulin, various foods, stress etc but not to the point where I’d claim to understand it. I understand my washing machine. If I select programme C I get a 30min quick wash, if I select programme F I get a long, hot wash for my whites. I understand it perfectly and it never changes. My diabetes frequently surprises me, my washing machine doesn’t. Therefore I must conclude I am more mystified by my own diabetes than my washing machine, but I do feel I understand it enough to live well.

Do I empathise with what it’s like to live with diabetes. Oh yes. I’m there. I understand that perfectly and am often found smiling or grimacing in empathy when I listen to someone else recount the details of a 3am hypo.

I watched in a mixture of horror, admiration and amusement at a diabetes conference once when a speaker told an audience of parents of diabetic kids that she’d lived with diabetes for 20 years. Actually, she’d been a diabetic nurse for 20 years and I’m sure she was good at her job. Sadly, that’s not quite the same as living with it and she hit a real nerve with the audience. One fabulous mother spent the next 5 minutes passionately pointing out that working with diabetes all day, and living with it 24/7 are two very different things:

“You may consider yourself an expert in diabetes, but you’re not an expert in living with diabetes until you’ve dealt with 3am hypos, been brave enough to put in extra insulin for mysterious highs and survived the terrifying first time you let your diabetic kid have tea at some other kid’s house.” Mother of a child with diabetes

I love parents of diabetic kids, they’re the best!

While I may shy away from being called a diabetes expert, I’m very happy to claim to be an expert in living with my diabetes. I’ve got 26 years of experience and all body parts still functioning perfectly, what more do you want!?