Living with Diabetes: The way we speak (three months in)

Miss Chief at diagnosis.

For some time now I've been meaning to post an update to my Sugar Plum fairy post about Miss Chief's Type 1 Diabetes diagnosis. Actually, if I was to try and summarise what has happened in the last three months it would be a really long post that I doubt many of you would find the time to read. Truth is I don't have the time to write it. One thing that living with diabetes does, in the early days at least, is chew up your time, leaving little for much else. And the longer I wait to post, the more time passes, the more our way of living with T1 changes and the longer the post would get and the more I'd put it off.

So I figure the best thing would be to post a little bit each day or once every few days. I will try to be organised about it and cover a specific topic, but I don't think that really reflects my current state of mind so it will probably be more like a diary. Some posts will have a positive spin, others less so and many won't exist because I'll be too damn tired to write them. So far that has been my main experience of living with diabetes - bloody exhausting.

So before I go off and do my pre-bed check of Miss Chief I'm going to do a little dictionary, or Diabetionary, of words, phrases and acronyms that have become part of my everyday vocabulary since October 23rd 2012.

Basal/bolus: A particular insulin regime which consists of providing a low basal dose of insulin throughout the day and then additional bolus doses with each meal. We use a slow-release long-lasting basal in the morning which lasts about 24 hours. Then we administer a fast-acting bolus with each meal, which peaks after 1-2 hours and drops off significantly after 3-4. By 4-5 hours it is out of the system.

BGL: Blood Glucose Level. We do these regularly throughout the day or night by pricking Chief's finger and squeezing blood onto a glucometer. We also call this the fairy test, fairy blood, check, levels, numbers and often just say "so what was Chief?" and we both know what we're talking about.

CGM: Continuous Glucose Monitor, a highly sophisticated, desirable and expensive device that significantly reduces (dare I say eliminates) the need for finger pricks. Aside from the expense the only downside of this is that it is a wee bit bulky but basically it sits on your tummy with a little sensor under the skin and continuously measures your BGL. It can communicate directly with your insulin pump leading to much better control and is just the most awesomest thing for getting a good night's sleep. Not that we have tried one but I'm assuming it would be.

Clinic: Diabetes clinic, attended by T1 kids (and adults) and their carer(s) every three months. Overall BGL is looked at, a paediatrican does a general check which may include scrutinising the log book to determine whether insulin requirements are changing, discussing the insulin regime to ensure it still fits in with the patient's lifestyle, examining injection sites to ensure they are being rotated rather than sticking the needle in the same place every time, which can cause problems, and doing the same with the fingers, writing prescriptions for insulin and glucogen, and coordinating tests for other auto-immune diseases, such as coeliac. There are also diabetes educators, psychologists and dieticians on hand to answer questions and offer advice.

Coffee: Not exactly a new word but a word with a slightly different meaning since diabetes entered our lives. Before it was associated with socialising, sophisticated tastes (I never drink instant), cafes, frothy cappuccinos, days out. Now it is a vital tool in my diabetes carer's survival kit. I have yet to meet a D-mum who doesn't drink coffee.

Diabetes Kit: Also known as "the kit" this contains everything Chief needs and it goes everywhere with her. Includes log book, pen, glucometer and lancet, plus spare glucometer that measures ketones and spare lancet. Spare glucose and ketone testing strips, finger wipes, tissues, basal insulin and bolus insulin pens, hypo kit, needle tips, sharps container.

D: see T1D.

D-mum: Mother (usually carer) of a T1 child (or adult). See T1D.

Fairy Pen: Not technially a diabetes phrase but it's what we call the pens that we use to inject Chief's insulin.

Free snacks: are those with little or no carbs in them, that Chief can eat at any time - so long as she doesn't fill up on these instead of carb foods after having insulin, because then she might go low. I often pack a selection of free snacks in her daycare lunchbox that she can have either after lunch or as an extra snack on hungry days. Unfortunately "free snacks" are not actually free. Reminds me of the whole "free speech, free beer" open source software debate.

Glucometer: Usually just referred to as the "meter", "glucose meter" or "BGL meter", this is what measures the BGL. There are lots of different types, of which we have tried 3. The main one we use is called the Accu-Chek Mobile and is an all-in-one device where the finger pricker can attach to the side of the meter. Instead of fumbling with a test strip wrapped in foil and sticking that in the meter 7 times a day, we pop a cassette in the back with 50 tests in it. The cassette automatically winds the next test strip round and we never need to touch it. Likewise, instead of replacing the finger pricker needle (lancet) every few days (they say every time but as if!) we stick a cartridge of 6 needles in and this lasts us about 1-1½ months. Chief prefers this finger pricker as it seems to be more gentle and daycare love the fact that they have one device to pull out and don't have to faff around with test strips - their time is strapped enough as it is. I prefer this one at night as I can do the test much more quickly - so long as I have access to one of the kids' gloworm toys otherwise I can't see what I'm doing. Apparently they're going to make a version with a light for use at night so hopefully they'll send us one to trial.

Glucogen: A scary looking injection you have to give if a diabetic has an unconscious hypo. Paramedics are trained to give this so you don't have to if you're too freaked out. But obviously the sooner the patient gets it the better. Glucogen can also be used when a diabetic is sick and refusing to eat, using a less scary looking needle, which is still a fair bit scarier than the pen needles that we use for insulin. (Can't imagine how scary diabetes must have been in the old days.)

HbA1c: Without getting too technical this is a red blood cell glucose test (Hb - haemoglobin) conducted every three months. Red blood cells last up to 4 months so this gives a good indication of your overall control, kind of like an average BGL. D families get very nervous about this number just before clinic.

High: as in BGL is higher than we would like, causing hyperglycaemia and associated symptoms such as irritability, hyperactivity and sore tummy. High for us is above 11, depending upon the time of day. Above 15 or 16mmol/l Chief starts to feel unwell. But as a normal 4 year old she can be hyperactive whatever her level - groan! The meter will measure up to about 27mmol and then read HI. High BGLs can be caused by too many carbs, too little insulin, illness, excitement or other hormonal activity (growth, puberty etc.).

Hypo: No this doesn't mean hyperactive. I often hear people say their kid went "hypo" and I wonder what the hell they mean. I think they mean "hyper". Well, Chief does go hyper, hyperglycaemic that it is, which often results in hyperactive behaviour. But she can also hypo, that is suffer from hypoglycaemia, or low blood glucose. Technically mild hypoglycaemia occurs when BGL is below 4.0 mmol/l. With lower levels come certain symptoms which differ from person to person. They can be lethargic to the point of being unable to move, light-headed to the point of behaving as though they are drunk. They may be quiet, or they may be agressive. They may be incredibly hungry or they may be pale and shaky and refusing to eat. Severe hypoglycaemia can lead to unconsciousness or a diabetic coma, which is a serious condition. Chief hasn't had many lows so we haven't yet determined a concrete set of symptoms for her.

Hypo Kit: A kit of hypo treatments. Ours contains glucogen, jelly beans, juice and a muesli bar. It goes everywhere with Chief but at home we use milk to keep her up and if we need to we give her honey, a jelly bean or juice to get her up quickly.

Ketones: These are toxins in the blood. They can get there with prolonged high BGLs, illness, or if the body has recovered from a severe hypo. Diabetics check ketones if they have a series of high BGLs as they can be difficult to clear if you can't produce your own insulin and a build up of ketones can cause serious illness and hospitalisation.

Lancet: The finger pricker.

Low: A low BGL, as in "she's a bit low" or "she's having a low". This can be quite relative. If you've been high (high BGL) for a while, such as before diagnosis, then a moderate or normal BGL could produce feelings of being low, but generally a low is considered around 4.0mmol and without hypo symptoms. Before bed a low might be 6.0 mmol as generally a higher number is preferred to get you through the night without risking a hypo.

MDI: Multiple Daily Injections. A method of administering insulin, as opposed to infusion via an insulin pump.

Mmol: Millomol. I don't know what this means other than it's the measure of glucose in the blood. For a non-diabetic a normal BGL would be between 3.5 and 8.0 mmols per litre of blood, or mmol/l.

PWD: Person with diabetes. I don't often use this but I do now know what it means. Also CWD, child with diabetes.

Sleep: Again, not a new word but one with changed significance. Before it was something I dreamed of getting more of when Happy One got a bit older. Now it's something other people get.

T1D: Acronym for Type 1 Diabetes, also referred to as simply T1. Amongst the T1 online community a commonly used acronym is D. This is extended to D-families, D community and D-mums. Outside of that community T1 is preferred so there is a clear distinction with Type 2 diabetes.

Target BGL: The ideal BGL falls between  4.0mmol/l and 8.0mmol/l. However, most diabetics sit within this range 60-80% of the time. Over the last 2 weeks, since we increased Chief's basal insulin dose she has only sat in this range 35% of the time (see chart below). However, she is in the honeymoon phase where insulin requirements are small and often changing and fine control can be difficult. What is important is that she has improved. Since 1st December she has been in that range only 28% of the time.

Well, I seem to have written way more than intended. Well done if you're still reading. No doubt there are many concepts and terms I have missed but hopefully this will allow you to better understand future posts as I'm sure more than a few will be on this subject.