Defining Complications

20 Mar

Oxford English Dictionary definitions:-

1) A circumstance that complicates something; a difficulty

2) An involved or confused condition or state

3) A secondary disease or condition aggravating an already existing one.


An issue, a complexity, intricacy or convolution.


From Latin “complicare” meaning to fold together.

When people speak of complications in the context of diabetes, there is an unspoken, implicit or inferred presumption that the phrase means only a narrow range of specific conditions ( e.g. Neuropathy, Retinopathy), and the the person with diabetes will have brought about these by their actions or inactions.

In my opinion, all of these presumptions are wrong, but not only that, they are very unhelpful.

Synonyms for presumption include:-

Presupposition, an automatic inference, prejudgment and PREJUDICE.

No wonder the conversations about complications in diabetes produce so much judgment and blame!

So, firstly, I would prefer to talk about the issues, complexities and intricacies of living with diabetes, not complications. And secondly, I want to emphasise that they are NEVER caused deliberately by the person living with the condition, but are simply responses to the combination of disease, genetics, physiology and circumstances that people with diabetes may (emphasise that MAY too) encounter during their life.

Having got all the ground rules established, I’ll now tell you what I think of as the intricacies of living with diabetes after having had the condition for 42 years.

The first thing I associate with having diabetes is always feeling a bit tired. It’s a sort of chronic fatigue, and I believe it’s borne of loss of sleep from nighttime hypos, variation in blood sugar levels that results in biochemistry mutating into a physiological effect, and the niggling nag at the back of your mind all the time that you’ve not done something you should have.

The impact of this amorphous haze of weariness that seems to be permanently present is unsurprisingly a degree of grumpiness. This in turn affects relationships, whether at home or work or with friends, who funnily enough get pretty fed up with your always seeming to be in a bad mood and short tempered. Even the most patient or knowledgable about diabetes make it clear at some point that it’s you, person with diabetes, that is in the wrong. It’s your fault.

First strike, as they say. First blame on you. You’ve failed. You must be doing something wrong otherwise why would you feel so tired all the time.

Wrong. You’re not doing anything wrong. You’re coping with a disease that is ever present, so in many ways you could argue they should see you as permanently “unwell” (although we all want to be as well as we can all the time, so I don’t like this way of thinking). The “grumpiness” is caused by the condition, not by you.

Nevertheless, unless you recognise this, it’s pretty easy to become dispirited, demoralized and think that all your efforts at managing your blood sugars are failing. So why bother.

Impact no 2 of tiredness – “burnout”. You give up trying.

Result? Worse blood sugars, you feel worse, you become even grumpier.

A vicious circle develops which becomes a vortex taking you down into depression.

Another “issue” that is not unknown with diabetes, but is also not recognised as a “complication”.

The feeling of being a burden on others can arise even if you’re lucky enough not to feel tired and grumpy, just from all the things you do simply by handling diabetes:-

You’ll be interested in the carb content of food you’re going to eat, and may have other die try requirements that can accompany having diabetes, like being gluten intolerant, you’ll need to do blood sugar tests that involve pricking your finger, you might need to inject insulin or dig a pump out to bolus. Most people will try hard to avoid having a hypo, and will try to look ahead to anticipate what might go wrong and lead to a situation where low sugar is likely. Sometimes this “anticipating” can lead to obsessive planning, which results in extra food being taken, sometimes considered unnecessary by others, or a reluctance to be spontaneous, so you’re thought of as a “drag”.

All of these actions can produce curiosity or frowns faces, but even if the people you’re with are used to you doing these, you’ll know they are aware and you’ll know you are different from them.

By being “apart” or not fitting in or not “belonging”, some people can feel isolated and develop negative self-esteem.

Then there’s the actual capability test – can you stand up to your peers’ scrutiny and do the sums to work out how much insulin you need, just like they can?

In this context, I was told recently that university researchers (at Glasgow I think) determined that on average a person with Type 1 Diabetes makes 100 extra decisions a day, compared to somebody without diabetes. And at a conference last week, it was stated that other research had found the maths ability of many diabetics is equivalent to that of an 11 year old. So, firstly, don’t feel bad – you have to think more that people who don’t have the condition, and secondly, don’t feel different if maths is a struggle – it seems it is for many of us. I shudder to think what the ability is in the population at large too!

In the UK we are exceptionally lucky to have the NHS which means we don’t pay for insulin and other consumables. I saw a photo today of a till receipt for $807 for 3 vials of

Humalog insulin from an American pharmacy (Walgreens, effectively the US version of Boots)! So we’re lucky and grateful.

However, there can be hidden financial costs even here, with food for low carb diets costing more, hypo treatments like dextrose tablets or lucozade, continuous glucose monitor sensors or flash sensors if you buy them, and the tech kit like smart phones or watches to get the benefit of the readings conveniently. I have developed some neuropathy in my feet, and now find it very hard to know whether a pair of shoes fits well. It therefore takes me a long time to be sure I’m getting a pair that will be comfy and won’t rub, and there’s always a risk I’ll buy a pair only to find after a week that they don’t fit and I need to spend the same again to get the next size up!

All this expenditure mounts up, with some things being prohibitively dear, but how many of them either are pretty much essential or make such a difference we would really miss them? We may not have to pay for medical supplies like insulin, but the burden of finding the money for all the other things that are not explicitly diabetes-related can be substantial, leading to worry, etc. etc.

If you haven’t slit your wrists yet, you’ll be relieved to know I think there’s a silver lining to all these negative aspects – effectively they antonyms to the words I prefer to “complication”.

Firstly, you’re managing the condition, you’re coping with it.

Synonyms for these words are “tackling”, “sorting out”, “contending with”, “facing up to”, “handling”.

These all have positive connotations in people’s minds, being good attributes, associated with traits like courage, determination, perseverance. Bear those in mind. You’ve got all of them.

Secondly, you make a lot of decisions every day. If you have Type 1 Diabetes the anecdote about the research is you make an AVERAGE of 100 extra decisions every day (so some days it might be an extra 150!) compared to other people who don’t have diabetes. (I’m afraid

I have no similar anecdote about research relating to Type 2 Diabetes, but it stands to reason, people with that condition will also be making more decisions than people without diabetes).

This decision making involves getting information, weighing up the options and judging which gives the best outcome. It’s not a knee-jerk choice. That “consideration” process is also considered to be a good attribute, so you’ve got that to accompany your ability to decide (another positive).

When you’ve made a decision, you then have to check to see whether your prediction about the outcome was right. This “monitoring” often involves recording stuff (blood sugar readings for example) over time, and analysing it for patterns.

Depending on what your checking finds, you might have to change what you’re doing in some way, adjusting a temporary basal rate for example.

And you have to do these things all the time, every day, in varying amounts depending on how many curve-balls diabetes throws at you that day. Often you’ll have very little time to make each of these considered choices too, so you have an inherent ability to handle pressure, whether you realise it or not.

Making one decision at a time with a break between each one is perhaps not as impressive as I’ve made it sound. However, from my experience, the decision making frequently has to take account of several factors at once. For example:-

I was intending going for a swim today. I usually do about 45 minutes to cover about 1 km in the pool doing front crawl. I had put in the temporary reduced basal rate for about 30 minutes, about an hour before I was planning to go, and I’d eaten 30 g of carbs. then I go to drive to the pool and the battery is flat.

So, I have to decide what to do to take account of the the temporary basal rate and the extra carbs, now I’m not swimming. Do I put in more insulin to correct, only that will take about an hour to start working by which time my sugar will be high, or do I do alternative exercise? If so, what and for how long?

I chose to go for a walk for about 40 minutes and bolus for the extra carb I had eaten.

Two and a half hours later, I’m now sitting at 4.6 mol/l and likely to need a bit more carb to ensure I don’t go lower before dinner. So, nearly, but not quite!

This is a relatively simple example, but it shows how many factors there are to take into account, and plan for, some before starting out when there’s plenty of time to consider, some requiring decisions on the hoof, and how it’s not always possible to get them all right.

I reckon having to make judgements taking into account multiple factors is more common in diabetes than most people think, so everybody with the condition will almost certainly have done this, probably without recognising it.

This waffle is written from the perspective of somebody with Type 1 diabetes, and I confess I know relatively little in comparison about Type 2. However, I am aware that its causes are complex and not particularly well understood yet.

I’d argue there is no benefit in shaming or blaming people with any type of diabetes as all it is likely to do is to reduce their self-esteem which as I’ve explained earlier is likely to be already under pressure from themselves.

So, I would suggest we focus on the achievements people with diabetes realise every day and please let’s not use the word “complications”!

There are so many issues and complexities folded together with a broken pancreas that to label only a small number of traits, (which are effectively identifiable physiologically), is a gross over-simplification.

Far better to encourage and value the positive attributes from coping with the condition, like the endurance, stamina, and strength of will required to get up each day and every day to deal with it. Any other approach in my opinion is prejudicial to helping the person with diabetes.


Brian’s Story

28 Feb

Let me introduce myself, I’m Brian Black I live in Arizona, United States. So my journey with my Type 1 Diabetes started real late in my life. So it all began about this time eight years ago. My health seemed to Plummet into this terrible abyss. My body began to ache, had no energy to make it through the day. Then one morning when I woke up my foot was swollen and when I step out of bed to walk, I felt something just burst and blood and fluid covered my left foot. I was scared for what had just occurred. So off to the Emergency Room I went. Upon arriving at the hospital. The Triage Nurse ask me why I was there. I showed her my foot. The first words out her mouth was I a Diabetic. My answer to her was no, that I had never been diagnosed. At that point everything seemed be happening very quick. I was taken to a bed and many blood draws began. I was put on a I.V. and Oxygen. Things seemed to getting worse. I started Vomiting fiercely. Then the E.R. Doctor arrived. He began to explain to me, my body was in DKA. My response what was that. So he explained and told I was very sick man with life threatening illness. So I was off to ICU to be monitored continuously throughout the night. The next morning I was moved to a regular room. They had stabilized from Blood Sugars and Oxygen Levels. So this when I meet this Female Doctor of Podiatry. She came to my room to examine my feet. As the examination continued, she began tell me that it wasn’t going to be a good outcome. That most likely I was going to loose several of my toes or even my whole left foot. So the first surgery would be later that day, to debrief the Infection in my foot. The outcome from this surgery was some what encouraging. That there would an Amputation of The Small Toe and the Removal of The Metatarus. I would spend the next 21 days in the Hospital going through two more surgery’s. And countless Blood Test to formulate a Antibiotic Cocktail to kill the Infection that was still causing me problems. So I went home with one less toe and a broken ego and Type One Diabetes’s It took over me several years to come terms and not to blame myself for the Complications that this Disease of Diabetes brings upon us. Everyday I work hard to take care of myself with my Diabetes. So I leave you with this No Blame and No Shame.

Type 2 – It’s Complicate Too

25 Feb
8.5 years. That’s how long I’ve had type 2 diabetes. I still remember the look of surprise and shock on my gynaecologist’s face, as he went through my blood test results, then:
‘Did we get you checked for BSL  at the start of your pregnancy?’
‘Yes, they were 4.9.’
‘Hmm, I’m afraid your levels are still as high as those after your Glucose Tolerance Test.’
‘What does that mean?’
‘It’s a carbohydrate intolerance and  formally a diabetes diagnosis. We’ll send you to see an endocrinologist.’
‘But how? Isn’t Gestational Diabetes supposed to be cleared, once the pregnancy is over? What is going on?’
‘In a very small number of women, it may stick by, never leaves.’

And there it was. The start of a journey that took me to so many highs and lows.

I was just discharged from a 3.5 week hospital stay, after dealing with pregnancy complications and a horrible loss. I wasn’t sure if my body could handle more blows.

I went home and had a good cry. It wasn’t fair. I was still young, sometimes slightly overweight but always active. Life had already thrown so many curveballs during that pregnancy. This was the last thing I needed.

As I slowly learned to cope, another challenge was waiting for me: the prying eyes, the food police, the never ending comments that left me feeling guilty and accused. Accused of what? Did I cause my diabetes? I was and still am trying my best and doing a good job to maintain the balance. I didn’t need that. It was already hard to keep a lid on my mental health issues, plus a host of other chronic diseases that have been tiring and draining me in their own right. Did I need or deserve these looks of disdain?

It is something when it comes from casual bystanders or ‘friends’. How about health care professionals who have barely met you, but as a type 2, you are instantly branded ‘non-compliant’, ‘closed- minded’ and ‘resistant to change’.

Over the years, my diabetes has changed. I had to see HCPs to seek advice. But that was it. I needed advice and guidance. I needed support and, may be, a pat on the back for a job well done. 8.5 years of diet and exercise controlled diabetes. Surely I deserved something positive. Alas, it wasn’t to be found in this Diabetes Educator’s office. Her claws were out to get me, to get every tiny effort I desperately made to make her see me, make her see my efforts, see my achievements and may be, if I was lucky, to congratulate me.


Absolutely nothing!

I had just seen her treating her type1 patients with so much patience and tolerance. How can a change from type 1 to type 2 shift her behaviour and approach?

I was not impressed. I was hurt; deeply hurt and offended.

I left her office never to go back again.

Irina, living with T2D, Sydney, Australia

Risk Management

19 Feb

There is this guy I know.

I’ve known him all my life

From birth he has lived with a condition that will ultimately end his life.

He lives with the risk of health issues that will complicate his life if he gets them.

Heat Attack, Stroke, Cancer, you know the score.

He’s always looked after himself on the whole.

Of course he’s had his moments.

After all you have to enjoy the life you are given right?

But overall he has tried to minimise the risk of these life complicating health issues.


Just over a week ago he had a Stroke.

Caused by a blood clot in his neck.

It affected his arm and speech to a degree.

It’s been removed now and he is on the mend.


At no point through this has anyone made him feel like it’s his fault.

No one has laid blame anywhere.

No one has him feel like he has failed.

Because he hasn’t!

He’s lived his life to the best of his ability for him and the befit of his family.

He’s tried to minimise the risks as best he can whilst maintain his quality of life.


His Condition?

Being alive – The Human Condition.


The Person?

My Father.


He’s going to be ok.

He’s a resilient bastard.

Just a bit too happy at times for my liking…….


So if you wouldn’t blame a guy whose tried to live his life his way for his “Complication”

Then why the fuck would you blame a Person With Diabetes for doing theirs?


Live Long and Bolus.



If I weren’t so lucky by Matt Butler

7 Feb

It is pretty simple……..

If my insulin was not provided for by the National Health Service from the second I was diagnosed, I would be in a lot of bother. I may even be dead. I certainly wouldn’t be married to the woman I am now.

I remember my day of diagnosis well: the nurse called me in to a small room and told me that the blood tests I’d had done did indeed confirm that I have Type 1 diabetes and I would have to inject insulin every day. As crappy as I felt (apparently I wasn’t far from being hospitalised), there was the small matter of being told to stick a needle into myself. See, at the time I could not stand needles. I still cannot watch the television if an injection is being depicted. The abject fear on my face was probably plain to see. I can’t imagine what the look on my face would have been like if the nurse had have added that every injection I did would cost me. Because when I was diagnosed I was in a pretty poorly paid job, as I was only just embarking on my journalism career. So if insulin hadn’t have been provided to me (literally there in that room, mixed 25-75 short and long-term, in a burgundy-coloured pen with a fresh shiny needle of 6 millimetres in length), I would have been faced with a pretty tough choice. Either take out crippling health insurance, pay for my insulin via unsustainable loans, or buy an air ticket home to my parents on the other side of the planet and ask them extremely nicely to fund my new needle habit. Or of course I could have just not taken it. And then died. None of the choices above would have been attractive. In fact looking at the alternatives to having insulin provided to me makes me wonder what I would have done. As well as the new world of regular blood-glucose tests, carbohydrate counting and the need for a supply of jelly babies to be kept close at hand, I’d have had to either uproot my life, take out a second job or be plunged even further into debt. Or I could have keeled over drowning in ketones.

Of course there are people in the world who do not benefit from a comprehensive state healthcare system – but still cannot afford the insulin they need to stay alive. We will ignore the accusations that pharmaceutical companies contribute to an artificially inflated insulin market, but just acknowledge the fact that insulin does cost a lot of money. And it is not as if people with diabetes have any alternative.

Spare a rose. Save a child


Jane’s Story

30 Jan

This year, on January 22nd, I celebrate my 53rd Diaversary. It was also the night I was supposed to see the Rolling Stones in Sydney. I ended up in Hornsby Hospital in a coma, and my brother used my ticket.

I was expected to die, but the medical gods, and insulin, were on my side. I was 15, and about to enter my final year of High School.

This was what I call the ‘Dark Ages’ of diabetes treatment: no glucometers, no disposable syringes, no ‘human’ insulin. We had to mix wee with water in a test tube, add a Clinitest tablet, and wait to see what colour the mixture turned. Supposedly there were 5 grades of colour. In reality there were two that mattered: blue, and brick orange. Blue showed that you had probably been hypo 2 hours before, and orange showed that you were high 2 hours before the test. Not really very helpful, especially as I nearly always reported to the parents that it was blue. I took one injection a day, mixing Isophane with Regular insulin, and eating to the insulin. No wonder I put on weight!

Yes, I have complications. In some ways this is not surprising when you think of the treatments of those days. However, not all PWDs from this era have complications. I believe that complications result as much from genetic make up as from lack of good treatment. I am not ashamed of these complications. Diabetes, and its complications, make me who I am.

Very early on, maybe 6-7 years after diagnosis, I used to vomit undigested food after meals, or have bloody aawful hypos. Yes, you guessed it: gastroparesis. I suffered with this for 39 years before it was diagnosed by a very bright GP in country NSW. Once I was put onto Motilium tablets, I didn’t look back. Yes, it was a damned nuisance, especially when it occurred at a dinner party at my parents’ home, and other guests thought I was drunk. My husband had seen me like this before, and knew it wasn’t to do with how much wine I’d had. Socially embarrassing, yes. My ‘fault’? No.

Retinopathy. Ah, now’s there a word to conjure with.

I showed no signs of retinopathy until about 20 years after I was diagnosed. This was treated with laser therapy. I was seeing an eye specialist whose practice it was to schedule 3 patients for every time slot so that, unless I got there first, I waited … oh, how I waited. The man was an arrogrant pig who delighted in making me feel that this was all my fault. I hadn’t kept ‘control’ (oh, how I hate that word) of my diabetes, or I must have been eating the wrong foods. I’m sure he enjoyed lasering my eyes – it doesn’t hurt, he’d tell me. Like hell it didn’t! After the first time I took paracetomol and codeine tablets before I went in, and repeated the dose when I came out. I knocked myself out for the day, but this way I could cope with it. He did so much treatment over a period of about 5 years that I now have almost no peripheral vision, and had to give up driving 14 years ago. The good thing is that since 1992 I have no signs of retinopathy.

I had cataracts removed last year. The eye specialist I now see thinks that they were due to diabetes, but he is not the shaming kind of health practitioner. At least now I only have to wear specs for close up work.

Grumps and I share the joy of having had Charcot foot. I think I was luckier than he. I had a slightly sore spot on the top of my foot that didn’t go away. My GP sent me for X-rays, which showed a fracture of one of the small cuneiform bones. I have no idea how that occurred. I’ve always had weak ankles, and can turn my ankle on flat ground. I could have stepped on something that I didn’t feel (thank you, neuropathy), or walked on uneven ground. Who lnows? I certaily don’t. We went to A&E at the local hospital, and was put in a temporary plaster cast an instructed to make an appointment at the fracture clinic at Gosford Hospital. Boy, was I lucky. I got in quickly, and was seen by two of the best orthopaedic surgeons at the hospital. The consensus? Charcot. Plaster for 3 months. This was in an Australian summer; not the best time to be in plaster. Because of the quick, good treatment my foot is not misshapen by Charcot, only by good old osteoarthritis in a couple of toes.

And my latest (and I hope last) complication: Chronic Kidney Disease due to Type 1 diabetes. Aren’t I lucky? This was diagnosed about 10 years ago. It has not progressed, and thanks to my renal physicians, is unlikely to lead to dialysis.

People, I can live with all this. Shit happens. I deal with it with help from a very good health system in Australia. I just thank goodness I am not in the USA or an African, third world county. I am not ashamed of what has happened. I wish it hadn’t, but there’s nothing I could have done, or can do, about it. Yes, I get depressed at times, but that seems to be normal amongst T1s, whether with complications or not.

Here’s to a good life, and to a cure, but I won’t hold my breath for the latter.

Jane Reid

Stars in my eyes.

28 Jan


When someone asks me if I live with diabetes complications, my automatic response is ‘no’. It’s usually followed by some qualifier such as ‘thank goodness’ or ‘touch wood’ or some other ridiculously superstitious muttering that I don’t actually believe.

But my response is not really one hundred percent correct.

Setting aside short-term complications such as hypoglycaemia, I have lived with diabetes complications. You see, when I was 28 years old, after having diabetes for only four years, I was told I had cataracts in both of my eyes. I checked to make sure I wasn’t in fact an 80-year-old grandmother, and when certain that wasn’t the case, I indignantly demanded that my lovely ophthalmologist (who I have a little bit of a crush on) explain how a young woman could possibly be the owner of matching cataracts.

As it turns out, I was probably always going to get them. Both my parents currently have cataracts and all four of my grandparents had them removed. ‘The likelihood of you having cataracts was always pretty high,’ Dr Ophthalmologist explained. ‘But undoubtedly, diabetes accelerated their development.’ Diabetes: the gift that never stops bloody giving.

For twelve years I lived in fear during the lead up to my annual eye screening, believing my time was up and they would need to come out. I’d made a pact with my ophthalmologist: the cataracts could stay as long as they were not affecting my vision or preventing him from getting a truly good look at what was going on behind my retinas.

As I often do when it comes to diabetes, I made deals with myself: as long as I could still read clearly, the cataracts could stay. As long as I could still see the gorgeous face of my little darling kidlet, the cataracts were welcome. As long as I didn’t need to squint or blink to focus, the cataracts could remain.

And the psychological deal was that as long as my age in years started with a three, those fucking cataracts could cloud my eyes and I’d live with it.

Except then, with my fortieth birthday on the horizon, and middle age crises looming all around me, my vision started to be affected. I stopped driving at night time because the bright light starburst of oncoming cars meant I was often temporarily blinded and couldn’t see what else was happening on the roads. I started to need to shine a bright light directly onto whatever I was reading to illuminate the words so I could make sense of the story.

I knew it was time.

At my next visit, I told my doctor that I needed the cataracts removed. He nodded as he was looking at my retinas. ‘Renza, I can’t get a good look at everything going on back there. I’m sure it’s all still fine, but I can’t be certain. I say they need to go, too.’

So, we scheduled two surgeries (I’d used those twelve years of deal making to convince my ophthalmologist that the cataracts would be removed under general anaesthetic because there was no way I was going to be awake while he came at me with sharp objects and stuck them in my eyes), and three weeks after I turned forty, the first cataract came out. Another three weeks later, I had the second cataract removed. The surgeries were painless, easy, and recovery was ridiculously stress-free. I realised afterwards that I’d been seeing the world through sepia-coloured lenses and for the first few weeks post-surgery, I was actually startled by the colour of the sky.

I could see clearly – a blessing and a curse because suddenly those forty-year-old lines on my face, previously blurred thanks to my cloudy vision, became crystal clear. I dealt with this blow by simply dimming the lights when I was putting on my makeup to avoid spending too much time scrutinising the wrinkles, and renamed them laugh lines, congratulating myself on all I’d seen to cause them!

But while the outcome was all positive, emotionally I was a bit of a wreck. Even though I could understand that shitty genes would probably have meant I was going to grow cataracts, was I to blame somehow for their rapid and early onset? There was some time when I was newly diagnosed that my A1c was way outside target and surely my punishment was diabetes-related eye complications. I felt guilty and guilt-ridden, (damn six years of Catholic school).

And I was embarrassed. What sort of twenty- or even thirty-year old gets cataracts? And who needs cataract surgery the minute they turn forty? I tried to joke about it to cover up just how shamed I felt.

Because that’s what happens with diabetes complications. We are told that if we get them, somehow they happen because of our shortcomings. Obviously, this happened to me because I didn’t do as I was told; because I wasn’t good enough; because I didn’t take my diabetes seriously enough. That’s what I was threatened with the day I was diagnosed; that’s what all the literature about diabetes complications says. My failure to look after myself properly resulted in cataracts. Sure, I got off lightly with a pretty easily managed complication, but still, a diabetes complication nonetheless.

But of course, that’s not the case. Complications just happen sometimes. Of course we know that there are things we can do to minimise the risk, but we can’t eliminate that risk completely. Pointing blame does nothing but stigmatise living with complications and, for many, that results in not seeking care.

Talking about complications – openly and easily – is a way to reducing the shame. In the same way that no one asks to get diabetes, no one asks to get diabetes-related complications. Stop the stigma, stop the shame and let’s talk about it and support each other.