One of the biggest things I hate about type 1 diabetes, aside from the constant need to run a big part of my metabolism up to 4 hours behind the curve, is other people’s understanding of the disease.

Before we talk about this subject though, we should examine some base facts.

1. About 0.02% of the world’s population have type 1 diabetes.  Given a population of 7.53 billion, that’s 146 million type 1 diabetics.
2. More adults than children have type 1:
   if a child is diagnosed on the day it was born, it is a child with diabetes for 18 years of their life.  If that child’s life expectancy is 70, that’s 52 years as an adult.
3. It is caused by a fault in the autoimmune response.
4. Treatment is insulin replacement therapy for 98% of people.
5. Transplants rarely work more than 5 years unless the immune system defect is also resolved (one case where the diabetic had a bone marrow transplant at the same time did just that).
6. Most countries in the world see type 1 as a physcial disability in terms of law.

Really, number 6 is listed here?

If we’re talking about discrimination, we need to understand what is being discriminated against.

I quite like American’s view of type 1 as they see it, in terms of law, as missing an organ.  Can you imagine your life without your heart, kidneys or your lungs?  The islets of Langerhans are that fundamental to a mamals life: without this organ functioning well, my body does everything it can to keep going.  It burns muscle, fat, ditches the toxins accumulating in it as fast as it can but ultimately it is starving because it cannot use the sugar from my food and stores.

Instead this sugar builds up with ketones from the use of stores and this leads to damage so severe it leads to death.

Insulin was discovered and purified in 1922 and given to type 1 patients and was quickly establish as a treatment for type 1 diabetes.  After nearly 100 years of this treatment being available, there is no known cure for type 1.

So, basically, your insulin is a bit like a prosthetic?

Yes, basically: it’s not as good as a real limb, but it serves a purpose.  Insulin replacement therapy is not as good as not being diabetic but it keeps things rubbing along and the majority of the time that just works.

The main issue is that even now, even as the loop is being closed on our delivery systems, it’s all in lag.  My insulin, once given, hangs around for 4 hours.  I am having a micro-dose of insulin every 3 minutes, so the values I get for my blood glucose have been influenced by at least 720 microdoses and any boluses and corrections on top of that.

The delivery of the insulin is achieved through a temporary port (called a cannula) which typically performs well for 3 days.  It is subject to a hostile environment and may be blocked, dislodged, heated, chilled, soaked, attached by my autoimmune system, etc.  The insulin itself is under similar stresses.

This is before we start discussing stresses on the type 1 themselves: exercise, food, drink, infections, heat, cold, heat, hunger, dehydration.

Each and every one of these things changes the model the insulin delivery is being subjected to.  From the second the insulin reaches my body, the parameters in which the dose has been determined may have changed completely.  The impact of that may not be seen for 15 minutes and lasts for hours.

It’s a moving target then?

Pretty much, and I am way better informed about what is happening than I was even 2 years ago as I have a CGMS that actually works and gives me what’s been happening the past 8 hours.  I can see the changes and the levels (up to a point).

There are consequences to my blood sugar not being in a euglycemic range, to you and me that’s a fasting level of 3.9 – 7.0 mmol/l.

If it is high, remember anything about 7!!, my body is trying to flush out the excess sugar which causes dehydration.  Remember me talking about my mum suffering as a normal when dehydrated – that’s happening to a diabetic most days.

So you’re a bit high…

High blood sugar is really anything above 8mmol/l to 48mmol/l.  The higher the sugar the more impact it has on me.  To a non-diabetic, I liken high blood sugar to the feeling you have after running a marathon – you have no energy, are dehydrated and hungry because your body is saying it is starving.

The thing my body is craving is going to make the situation worse (although at a push, I have had a sweet drink as it’s been the only safe thing to drink and boluses like mad but that’s a different story).

In the meantime, this is hurting, physically hurting.  Blood vessels in my eyes, brain and kidneys are blocking because of ketones and sugar and that is slowing everything down.  Inflammation can be a result of higher blood sugar too.  This is not even talking about the impact on a diabetics nervous system and the beginings of neuropathy.

Even when I am really angry and pissed off with someone, I don’t wish this on anyone for longer than a day to see what it is like.

That would be incrediably mean.

So that’s the highs… what about the lows?

Lows are not physically as bad.  I can feel quite clean but the after effects can be as devestating.  What do I mean by that?  I usually get a headache.  The longer the low has lasted, the more serious the headache.

I usually miss the hypos when I sleep, because they are usually mild and don’t cause much damage.

One that lasts several hours has a major impact.  The brain is powered by blood sugar and if there is not enough blood sugar, it suffers damage.

I’m much better at precisely treating hypos now, so I don’t tend to get rebounds, but over treating a hypo has all this and then the joys of high blood sugar.

Surely that’s nothing?

Imagine what you are like on no sleep badly dehydrated and hungry.  Now imagine that is happening two or three times a week because of a low grade infection, bones healing or because the weather’s changed.

That’s why we’re covered by the Equality Act 2010 – what we have is 100% of the time no time off for good behaviour and can be upto 90 years.