The Heat is On

A topical post which I will try to get up before this mini heatwave (end of May 2017) breaks. 

 

I was spoilt for choice with titles based on songs about heat - could have been many from my Feeling Hot playlist, but Glenn Frey's 80s classic The Heat is On came first into my head.

 

This is a diabetes themed post, but before I get on to that, I can't resist making some general observations on our attitude to hot weather to see what others think. 

 

It puzzles me that there's a collective assumption that hot weather is “good” weather. Weather forecasters - especially, dare I say, those whose qualification for the job appears to be based more on looks than on their meteorological expertise - tell us that temperatures are “good” when they just mean hot. Why do they assume we all love the heat? What about those who have to work in a stuffy office, factory or warehouse, exam candidates, hay fever sufferers, babies, old people, people in hospital, or anyone who just prefers to be comfortably warm rather than fried? What about animals? Even my hens were panting yesterday.

 

Rain is assumed to be a bad thing, but what about farmers and growers struggling to keep us fed, gardeners and groundsmen struggling to keep our parks beautiful and our sports pitches lush? 

Don't get me wrong - I like the sunshine, I like warmth. But a heatwave? No thanks. My perfect temperature is around 20°C, and over 25°C makes me feel sleepy, sweaty, lethargic, thirsty - and as a result far from cheerful. 

 

Peoples' response to, and behaviour in, hot weather here in Britain doesn't help either. The British have no idea how best to respond to heat, because it's a relative novelty. Our Mediterranean neighbours tend to slow down, dress in loose, cool clothing, cover themselves up and stay out of the sun, but the British throw off their clothing and expose themselves to the sun and all its harmful and potentially lethal effects. “Mad dogs and Englishmen” do indeed “go out in the midday sun”, and the alarming growth in  skin cancer cases provides proof if it were needed.

 

Very few people of either gender look more attractive when wearing fewer clothes. I’m sorry, but most mens' chests and most womens' arms and legs look better when covered. And I include myself in that statement. Very few men look good in shorts, and when worn by the over 60s with socks and sandals – well just don't! Beyond the age of around forty, unless you're very lucky, you are very unlikely to look good with fewer clothes on. Time and again on a hot day, I see sights that make me just think “please, spare us”. And why do people think hot weather means you can inflict your choice of music on everyone else from your open window, your car or - God help us - your bluetooth outdoor speaker system?

 

Then there's diabetes. I put a poll on Twitter yesterday (25-05-17) to ask my fellow insulin users whether heat makes their blood sugar go high or low. I've had a good response, and around 75% say low, which certainly matches my experience. Here's a shot of it:-

Technically, I believe the reason is that insulin absorption rate is faster in hot temperatures, so for a given dose and carb intake, the hypo risk is greater. This was me yesterday, with my repeated need to compensate for falling BG clearly visible:- 

 

 

But this, remember, is our fickle friend Type One Diabetes, so straightforward it isn't. Some people (25% of my sample) find that heat makes their BG go higher because they are less physically active in the heat, meaning that they need more insulin, not less. You can't win.

 

And there's another problem which I only noticed yesterday when one of my #T1D friends said late last night that she “felt high yet her BG was only 6”. Same with me, I thought, then I realised why. What's the main symptom of high blood glucose? Thirst. What's a symptom of being hot? Thirst. So if you've got diabetes and you feel tired and thirsty, you could be high, but it could just be the heat. Welcome to our world. 

 

So when I hear forecasters speak of a “threat” of a thundery breakdown, to me it's a “promise”. I love the freshness after a storm, and I was delighted to see that next week's temperatures will be back to the high teens.

 

My perfect day is probably a fresh mellow sunny day in autumn, when the temperature rises to around 20, but falls to single figures at night. So please, don't tell me a heatwave is “good” weather. It may be good for some, but they are, I suspect, fewer in number than we are led to believe. Let me know if you agree, and if you don't, enjoy the heat, but spare a thought for those who don't.

With a Little Help from my Friends

The reason for the title of this post will become apparent when you have read it. I am always very reluctant to use my blog or social media to be negative and critical, but I feel the need to pass comment on a matter which has already attracted much comment elsewhere. Diabetes Care.

I won’t bore readers who already know me with chapter and verse on my Diabetes story – it is in this post if you don’t know it. Suffice it to say that I have been most fortunate, in that I have lived for almost 19 years with Type One with minimal complications, good health and no significant impact upon my life and work. All I would say is that this is thanks in no small part to my own efforts, the care and concern of my immediate family, and in practical terms, the input of the health care professionals with whom I have dealt on a regular basis. Diabetes is hard work, all day, every day.

Six years ago, as a result of my consistently unproblematic condition, it was suggested to me by my hospital clinic that I should be discharged to the care of my GP practice. At the time, this was a welcome and appealing suggestion, which I willingly accepted. I had always found the six monthly clinics a nuisance rather than any help: I had to take an afternoon off work, which for a teacher means setting work for classes, travel to a crowded hospital with (at the time) appalling car parking problems, then sit for ages in a stuffy waiting room between various stages of a ponderous and inefficient process (one room for weight and height, one room for a BG tests, one room for seeing the doctor, another if necessary for seeing the nurses.) I always had a brief and frankly unnecessary chat with a consultant, who congratulated me on how well I was doing, exchanged a bit of small talk and sent me on my way. All very nice, but of no clinical value if the truth be told. The most meaningful and useful input was from the hard-pressed nurses, who scuttled from room to room, stopping to chat in the waiting area to check if I was OK for pens, was my meter OK etc.

The prospect of replacing all this with a convenient appointment at my local GP, ten minutes’ walk from home, was most attractive, and I took it. So for six years, I had this annual review, essentially just a standard GP appointment, but with a doctor who is designated a diabetes specialist in the context of the practice. I still had my twice yearly HBa1c test, annual retinopathy check, foot check and all the right questions from the doctor, so I was happy, and continued to have “good” control and a good HBa1c result (albeit creeping slightly upwards into the 8’s)

Then came the GBDOC. Again, no need to repeat the story – it’s here. But the GBDOC meant that I started to be able to “compare notes” on diabetes care with others. First of all online, then face-to-face with some, as I became more involved with the community. I was becoming more interested in my diabetes, not least with my children grown up and independent and my work life reducing to part-time semi-retirement. I started to realise that I was perhaps being short-changed on my care compared to others, and that perhaps I now knew more about diabetes than the experts who were caring for me. This suspicion was increased when in October 2015, after 6 months’ use of the FreeStyle Libre (which, needless to say, I had discovered via the GBDOC!), I presented at the GP practice with a sudden fall in HBa1c at my annual review. A clearly impressed doctor asked if I had been “doing things any differently”, and when I mentioned the clever little device that was enabling me to react to and control BG levels so effectively, he was stumped. He’d never heard of what many believe to be one of the most significant advances in diabetes management technology, and earnestly made a note of the name of the device. Fair enough, I thought. He’s a busy GP, not a consultant. And a nice guy, manifestly caring and conscientious.

I decided that it was time to see whether the hospital knew any better, so I ‘phoned the helpline to the nurses which I had been given back in 1997 and had never used. I also wanted to ask about a DAFNE course as a way of adding to my growing expertise in diabetes management. The helpline operates from 11-12 daily, is on voicemail until 10:59 and after 12:01 and engaged for the rest of the time. Have they heard of email? After repeated re-dialling, I got through, only to be told that as I was no longer a patient of theirs, I was ineligible for the DAFNE courses at their hospital, and whilst they could advise me over the phone in response to another query, namely about getting a new injection pen, they were really doing me a favour. I thanked them courteously and resolved to get referred back to the hospital.

And so it came to pass that yesterday, Monday 28^th November, I went on a sentimental journey back to the clinic I had attended for all those years. Some things have improved: there’s a smart new multi-storey car park, with modest charges and loads of spaces. The hospital entrance has been rebuilt and extended, and feels like a provincial airport or a railway station, with well-designed waiting areas, big-screen TVs everywhere, and branches of Costa, WH Smith and M&S Simply Food. I actually knew of these changes, as I had been to the hospital for other reasons (most recently visiting a pupil newly diagnosed with diabetes as it happens!), but even the clinic had moved on….a bit. There was an automated check-in system, which worked. Someone had realised that it makes sense to do weighing, measuring, handing over the urine sample and testing BG all in one room with two people, rather than three rooms with three people. So far, so good. And having done all that, I was seen within 15 minutes of arrival, and starting to feel I had made a good decision.

But then I went in to see the doctor. A consultant, I presume, although not the named person on the appointment. No sign of #hellomynameis. He was a pleasant, courteous man, but he just asked how I was, waited 5 minutes for a screen full of data to appear, and told me what I already knew from my recent GP review, that I had “excellent” control, and enquired about how I managed my diabetes.  I told him that I had started using the FreeStyle Libre 18 months previously and proffered my tablet screen full of Libre data. He looked blank, then startled. He had clearly never heard of it. I repeat, a diabetes specialist in a large teaching hospital at a clinic had not heard of a device which has been the subject of worldwide interest and is widely thought to be a big step forward in diabetes management. His response suggested that I was extolling the virtues of some quack herbal remedy: he showed no interest in my screens full of data, didn’t ask to see the scanner or the sensor, and clearly wanted the conversation to end, and to move me on to the nurse who would discuss my request for a DAFNE course.

Fortunately, my time was not wasted. The nurse had heard of the Libre, readily agreed to refer me for DAFNE and agreed that as I now had so much data about the minute-to-minute progression of my BG, it made sense to try fully to understand the impact of different foods on levels.

I returned home mildly amused rather than annoyed, to be told by my daughter that there was a voicemail for me on the landline. It was the hospital doctor I had seen about an hour previously, asking me to phone back, giving a bleep number and saying “there was something he needed to talk to me about” but that I had already left the clinic. Yes I had left the clinic, because he and the nurse had told me to.

I was mildly concerned, my wife panic-stricken. A phone message from a doctor asking me to call back and bleep him, less than an hour after I had seen him. Surely a sign that something was amiss. What hideous complication had reared its head that needed such an urgent response? I needn’t have worried. He just wanted to know if I ever suffered from any hypos, if I tested before driving, if I had had retinopathy screening and a foot check in the past year.

Yes, I do have hypos, it’s what happens when you have diabetes, but fortunately I know the signs and deal with them. Yes, I do test before driving, it’s the law. (as well as testing 20+ times a day with this mysterious new gadget). Yes, I have just had retinopathy screening and a foot check – it should be on my records. And that was it. He had clearly forgotten some of the script, and needed to call me to get the answers rather than risk being accused of negligence. I put the phone down and reassured Mrs L that I was not suffering from some hideous life-threatening condition which had shown up as a result of a finger prick blood test and a sample of wee.

So there you go. My journey from hospital care to GP care and back to hospital care. I think I’ll continue to rely on the GBDOC for advice and information. There are several doctors there, including consultants, who are happy to tweet and interact with patients who aren’t even theirs. And there are hundreds of people with diabetes just a tweet away, all with their own experience and expertise, all of whom are there to help. In fact, I’ll just get by With a Little Help From My Friends. 

Oh, and I look forward to meeting DAFNE next year.

A letter of hope

A few weeks ago, I was asked by one of my many friends from the online community to write a "letter of hope" addressed to those new to Type One diabetes, either in their own right or as parents. 

The lady concerned, Maureen, lives in Australia and has a son with Type One. She finds that in Australia, with its smaller population and vast size, it is less easy for people with diabetes and their families to connect with each other, and so she is putting together a website of resources. 

You can read about her project on her blog here: 

https://mumoftype1.wordpress.com/2016/10/19/letters-of-hope/ and follow her on Twitter as @mumoftype1

So this is what I wrote, and I offer it here as my piece for World Diabetes Day:

Dear Dia-buddie,

You, or your child, have just been diagnosed with a condition. Not an illness, not a disease, but a condition.

It’s a shock when it happens. Right now, it must seem to you and your loved ones to be pretty bad news. I hope you haven’t just heard a load of “don’ts” and “can’ts”, but it’s those that stick in your mind. Diagnosis with diabetes can seem very negative, and to be fair, medical people have to make sure you keep yourself well and don’t do anything to make things worse.

The trouble is, most people know a bit about diabetes, and they tend to remember the bad stuff, or the wrong stuff. Everyone thinks you can’t do this, can’t eat that, must be careful about this, shouldn’t do that.

Everyone claims to know someone with diabetes – but then it turns out to be Type 2, because that’s far more common.

 

Some will even be callous enough to tell a tale of their auntie, uncle, grandad or someone who had diabetes and went blind/lost a leg/died.

So how about a dozen positives:

•It won’t kill you.

•It won’t even make you feel ill much of the time.

•It won’t stop you doing anything.

•You can eat whatever you want.

•You can refuse food you don’t want and blame diabetes – nobody will dare argue.

•You’ll get free prescriptions for life.

•You’ll get regular health checks for life.

•You get some really cool techie stuff: pumps, meters etc.

•You can eat sweets and claim it’s a medical necessity. (it sometimes is)

•You can get out of a boring meeting by claiming your blood sugar is low/high.

•If you’re at school, you can jump the lunch queue.

•You will meet the most awesome people, your fellow diabetics.

I’m not just trying to make you feel better. I have lived with diabetes for almost 19 years, having been diagnosed out of the blue at the age of 40. Prior to that, I had been a fit and remarkably healthy individual. I still am. Diabetes caused a few weeks of adjustment, with some anxiety – more on the part of my family and friends than me, if the truth be told. But very soon after diagnosis, I resumed the busy and active life that I had always led, and I’ve just carried on that way.

Managing my condition is just a small part of personal care, no different from washing, shaving, going to the toilet, getting dressed etc. It fits around what I do just like those other life’s essentials do.

Diabetes doesn’t make your life any worse than it was before. It just adds a complication, like so many other complications that life throws at you at various stages.

But it gets better than that. You might find this hard to believe, but I genuinely believe that diabetes has enriched my life, developed me as a person, given me some of the loveliest friends I could wish for and is a whole lot of fun.

Let me explain. It’s all thanks to the internet and social media, so only in the more recent years of my life with diabetes. Once we in the UK realised that there were other people with diabetes out there, it suddenly dawned on a lot of us that the very randomness of diabetes makes a delightfully random community of people, whose different lives, ages and circumstances are all over-ridden by one big thing that we have in common – diabetes. It’s called the GBDOC (Great Britain Online Diabetic Community) and there are variants in many other countries. It’s a guarantee of friendship and mutual support which is truly life-affirming, and is used by people with diabetes as well as parents of children with diabetes. The good thing is we don’t even talk about diabetes all the time, yet we know we have that in common. We’re just friends.

So I have one big piece of advice for anyone diagnosed with diabetes or whose child is diagnosed with diabetes: find someone else out there who knows what it’s all about and connect with them. A problem shared is a problem halved? Well, as far as I’m concerned, a “problem” shared stops being a problem and becomes a source of friendship, support, fun and much laughter.

Live long and bolus!

Adrian

Born 1957

Diagnosed Type One Diabetes 1997

Still thriving 2016

Sa Jeunesse

Sa Jeunesse. Your youth. A French song title for this diabetes-themed post. It's a song wrtten and performed by that incomparable Franco-Armenian nonegenarian chanteur Charles Aznavour, a singer-songwriter sadly under-recognised in the English-speaking world. It's a eulogy of youth, and as such is a song tinged with melancholy about the passing of time: the title comes as the end of a refrain that exhorts young people to make the most of their youth while they can: Il faut boire jusqu'à l'ivresse sa jeunesse: drink up your youth until you're drunk on it. 

Not a bad piece of advice in my view, but I'm more inclined to say enjoy every part of your life, because in many ways, the best is yet to come as well as being in the past.

Aznavour is clearly troubled by the ageing process: some of his best known songs like Hier Encore and La Boheme express the nostalgic regrets of a middle aged man who wishes he was young again, and in so doing, he gives voice to feelings that we all experience to some extent. Where did our life go? It's a theme as old as time itself.

All this came to my mind recently when reading a blog by Amber, one of my gbdoc friends, called Diabetes is an invalid excuse, a cri de coeur from a young person suffering from diabetes burnout. In it, Amber makes reference to the fact that as a teenager she can't easily do what young people want to do - go out, party, stay out late, drink. This got me thinking about the differing burden of diabetes at different ages, an idea which has come into my mind a lot in recent years, as I have got to know so many fellow Type Ones who, unlike me, were diagnosed as children or teenagers. For them, it is very difficult to "drink of the fountain of youth".

I've said it before in blog posts: I feel lucky to have missed diabetes as a child, teenager or young adult, so I am no expert on life as a Type One at those ages. However, it seems to me self-evident that there are multiple extra issues with the condition for those who are diagnosed young. 

For very young children, of course, the issues are for the parents as much as the child. I shudder to think of the worry and heartache felt by parents having to deal with such a fickle condition, and in effect needing to act as the child's pancreas. I entirely understand why a prominent member of the GBDOC, parent of a T1D child, styles herself Understudy Pancreas, and I can well imagine the multiplied worry when a child starts school, or moves from primary to secondary. 

But let's not forget the child! How difficult it must be to be fussed over, to be told not to do this, or be careful when you do that. Childhood has become so risk-averse in modern times, but for the diabetic child there's a whole extra layer of risk, and it's a real risk as well.

Then there's teenagers. Imagine being landed with a condition that inhibits your freedom just at the time in your life when you want to start to express that freedom. Imagine the difficulty of taking over your own testing and insulin dosing after your parents had been doing it. Imagine the daft and often downright nasty things that get said at school to kids who inject themselves, prick their fingers and sometimes start acting strangely. Imagine the extra complications to sleepovers, sport, parties, trips and holidays. And all of this before we even mention the effect of growing up, puberty and hormones. All of it more fraught with complications for girls than boys.

Then for mid and later teens, the expected lifestyle is so fundamentally incompatible with diabetic life that I really feel for them. I wasn't exactly  wild in my Sixth Form and student days, but nevertheless enjoyed my fair share of late nights, missed meals and generally carefree spontaneity. If a young diabetic wants to enjoy drinking and clubbing, the hazards are self-evident. And goodness knows how awkward it must be explaining the injections, or worse still the pump and tubing, to someone on one of your first dates. "Don't touch me there.....you'll rip my tubing off!" "Take your hands off my...Libre!"

Even for younger adults, diabetes is no friend. Busy lives, building a career and setting up home all carry risks, and what about parenthood? I hear many a tale of sleepless nights with new babies made worse by diabetes. And let's not even mention the potential minefield of pregnancy. I so admire the women I know who have trodden that path with diabetes in tow...

I guess what I'm saying is that Type One diabetes is best suited to sedate middle age - which is the age I was when I got it. Through #GBDOC I have in recent years got to know many other Type Ones, nearly all younger than me and the majority of them female. Unsurprisingly, most of them seem to have a more difficult time with diabetes than I normally do, but then I'm a man in my fifties who leads a pretty sedate and largely predictable life. Type One, male and middle age are a good match  I think.

So I guess this post could be termed The Seven Ages of Diabetes. There are, I know, potential problems with every age, and I prefer not to think about my old age and diabetes (imagine becoming forgetful about injections....aaargh!). Perhaps I should just conclude by once again thanking all the Type Ones of every age whom I have got to know through #GBDOC, whose willingness to share their experiences of diabetes has taught me so much about the condition we all share. I salute each and every one of you, whatever your age.