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.

Synonyms:-

An issue, a complexity, intricacy or convolution.

Origin:-

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.

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2 Responses to “Defining Complications”

  1. Tim March 20, 2018 at 1:16 pm #

    Yep – I really like your points about the constant calculations. I picture myself as having a square centimetre of brain that sits there and always thinks of my diabetes. It’s constantly alert to meals, exercise, booze, infusions sets. It’s not a burdensome thing but it is always there.

    To be honest. I’d rather that square centimetre was thinking about something else instead. Dogs, wine or mountain bikes, for example.

  2. Karen March 21, 2018 at 4:21 am #

    Really well put! Thank you!

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