In the UK, a verbal contract is binding. If you say something will work in a certain way, that is binding.

That makes presentations vital. It also makes what is said to you equally important as what is written down.

When it comes to my diabetes, I use a Powerpoint presentation (other tools are available) to explain some of what happens to me and my body because I cannot make my own insulin and I use a pump to give me my insulin.

One of the key slides is this one, discussing the balancing act:

If a non-diabetic has high or low blood sugar, the imbalance is really small and easily corrected by giving a micro-dose of insulin (in the case of high blood sugar) or glucagon (in the case of low blood sugar) to get things back where they need to be.

Non-diabetics can have a clinical hypo’ with some types of blood pressure medication or if they fast (but still have water) for more than three days.

The reason this slide has the title “Why bother: just take the levels prescribed by your doctor, surely?” is because I tune my insulin to the amount I eat and my physical and mental activities.

I won’t talk about how I change my dose depending on my food intake and activities or how I cope with stress.  It’s five minutes of talking I give with this slide.

After that discussion, I discuss what physically happens when I am hypo’ (aka low) or hyper’ (aka high).  These are the extremes, 80% of my readings are between 4mmol/l and 10mmol/l when I am testing my blood sugar and 63% my interstitial levels.

Hypoglycaemia

Physically, I have more insulin than I need and my blood sugar drops below 3.9mmol/l (although I can feel ill if my blood sugar 8mmol/l if I have a large amount of insulin on board – that is I have bolused for a meal or food and got the amount wrong, I can feel hypo even though, at the moment, my blood sugar is within an eyglycemic range – that range is generally considered to be between 3.9 and 7.2mmol/l as per ).

It can make me feel drowsy, a little “spaced”, docile.  I can have difficulty concentrating and even putting together a sentence when talking (usually that doesn’t happen unless I am below 3.2mmol/l).

I can be disorientated.  I do not like to sit down, it’s actually better for me to be standing or even walking – physical activity can mean my muscles are releasing sugar stores and that can mean I can tolerate a lower blood sugar than if I am sitting down.  If I don’t have sugar to hand, I may act excited, again that’s to get the fight and flight responses in my body to work and they will release sugar stores to allow me to be active.  That is not good practice but can get you out of a hole.

I find it quite easy to doze when I am low and if I am tired, that can be a real pain.  Food tends to wake me up!

Because I inject insulin, the second the insulin is in my body, it is working for the next 4 hours.  If I inject an unit of insulin (1/100th of a ml), I use 0.25 units every hour until it has been used up.

This means if I get my dose wrong for a meal, I am dealing with the consequences up to four hours since that last dose.

Likewise, unless I am very low, it makes no sense to switch my pump off.  My pump gives me a microdose every 3 minutes and the insulin I had 3 minutes ago (up to 3hours 57 minutes) is still working.  For a prolonged, overnight hypo, that’s a good thing to do but doesn’t generally help if I am 3.8mmol/l and my last bolus was 4.5 hours ago and it’s 3pm.  The pump being off will only raise my blood sugar an hour after it was switched off.

If I have the hypo overnight, I can wake up to sodden sheets where I have had the sweats.  I can fit in these circumstances – I usually tell if I have a mouth ulcer after I wake up.

Hyperglycaemia

This is my natural state as I don’t produce my own insulin.

It is caused by a lack of insulin: not giving enough insulin for my food and drink, caffeine, doing sport (while I am doing sports, my blood sugar will be raised by my muscles releasing their stores of sugar and fat), not doing sport, an infection (especially colds), not getting my insulin delivery for food correct (pizza is the obvious example – if I give a single dose for a pizza which is providing 30g of carbohydrate just before I eat the pizza, I will be hypo in the first half hour and my blood sugar will be three or four times normal in an hour’s time), not bolusing for protein (more than 100g of steak for example), stress and worry – exams, job interviews, moving house, etc, issues with my insulin or my pump and of course trauma.

When talking to a non-diabetic, I ask if they do long distance running: being high is like hitting the wall in a marathon.  Every movement is an effort, it’s like walking through mud.

It makes me feel awful: the excess sugar builds up in my blood stream causing blockages, called microaneurysms, in the eye, brain and kidneys.  I produce ketones when my blood sugar gets above 11mmol/l.  Ketones are normal in non-diabetics when fat is burned for fuel – if you are losing weight, you will produce ketones.

In my case, that happens even if I am not dieting and my blood sugar is high.  I produce β-hydroxybutyrate, which is unique to type 1s.  Because my blood cannot use the sugar in my blood (as there isn’t enough insulin for it), it needs to burn muscle and fat to function.

Even low levels of β-hydroxybutyrate cause me pain: headaches, nausea, pain when moving my long muscles (walking and lifting) and thirst as my body wants to get rid of this toxin.

When I am above 8mmol/l at night, I cannot sleep.  I am not producing a huge amount of β-hydroxybutyrate, but it’s enough to cause insomnia.  If the cause of the high is my pump’s cannula failing (bent or blocked tube inside my body), damage to the tubing, damage to the insulin, the insulin being old, heat damage to the tubing or insulin then the high can take hours to come down.  It’s not uncommon in these circumstances for me to get only 3-5 hours of sleep.  As a kid, I used that time to read (it’s just a waiting game to get the levels back to where they should be) or do home work.  I listened to a lot of radio.

Feeling this bad can make me quite irritable and much less articulate.  If there are other stresses, I am likely to seem unreasonable and may be aggressive.

Wow!

Yeah, not a great thing to have.  Then you get the combinations: I had a prolonged hypo in April (jet lag and residual long acting insulin) following a high 14 hours earlier and had to be in work, once in a lifetime learning opportunity.

The next couple of days, I ran high to get my stores refilled (pretty standard approach) but couldn’t shake the headache and was not sleeping well because of the highs.  Work-wise, I was put into a difficult meeting situation.  Not a great combination.  Of course, while they know I am type 1, they forgot the discussion we’d had about high blood sugars.

C’est le vie!

The great thing about the UK is that type 1 is recognised in the Equality Act 2010.  In the USA, it’s a disability full stop (we’re missing an organ so classed with amputees).  That should give us equality of opportunities, only in practice this is largely ignored and our educational and employment opportunities can be dramatically reduced even though we only need a small accommodation.