When Numbers Get In The Way of Living

Part One

Why do the numbers matter?  To everyone else, the numbers are a measure of how well 'you' are managing your diabetes, how many highs, how many lows, your A1c!  There - that was pretty much the entirety of a twice yearly consultation with the 'specialist'.

And there is the rub, 'cos they are a specialist - in endocrinology - not in managing diabetes, not in living with diabetes and most certainly not in coping with diabetes.

So there you are, with an A1c that's half a percent up on last time, you feel like a failure - after all, you work so hard at 'managing'.  You take pride in how hard you work to manage your health and this result leaves you devastated, feeling defeated.  Why?

Why do you allow a number to control your life, the numbers are a measure of your condition, not a measure of your life!  Tight control is laudable, aspirational even.  It isn't sustainable if the effect of the numbers mean you lose quality of life. If you're stressed, worried, feeling like any comment is a criticism!  Feeling like you've let yourself down.

So do the numbers matter?  Yes, but not as the be all and end all, and certainly not as a measure of who you are!

This is My Meter - T1D Creed!

This is My Meter

Hooooo Raaah!, Semper Fi.

This is my meter. There are many like it, but this one is mine.

My meter is my best friend. 

It is my life. 

I must master it as I must master my life.

My meter, without me, is useless. 

Without my meter, I am useless. 

I must use my meter true. 

I must test to stop my enemy, diabetes, who is trying to kill me. 

My meter and myself know that what counts in this war is not the tests we do, the results, or the insulin we take. We know that it is the attitude that counts. 

My meter is human, even as I, because it is my life. Thus, I will learn it as a brother. I will learn its weaknesses, its strength, its parts, its accessories, its strips and its lancet. I will keep my meter clean and ready, even as I am clean and ready. We will become part of each other. 

Before my DSN, I swear this creed. 

My meter and myself are the defenders of my body. We are the masters of our enemy. We are the saviors of my life.

So be it, until victory is ours and there is no diabetes, but a fully working pancreas for all!

Hooooo Raaah!

Carb Counting Made Simple

Carb Counting Made Simple

Your body needs energy - Calories (or Kcal) - in order to work.

If you can eat it!!

It can pretty much turn anything you stick in your mouth into energy.  The UK Department of Health Estimated Average Requirements (EAR) are a daily calorie intake of 1940 calories per day for woman and 2550 for men.

There is a fiendish calculation that works out for your height, weight and activity level what your personal total should be, but we'll go with the average for now.

All of those scrummy calories come from whatever we eat or drink.  Different types of food yield different amounts of calories, for example:

• Fats - 9 Kcal/g
• Carbs - 4 Kcal/g
• Protein - 4 Kcal/g
• Alcohol - 7 Kcal/g

Ranked in order of how quickly your body can use that energy?

1. Alcohol*
2. Carbs
3. Protein
4. Fats

* 'cos whilst your body is processing alcohol it can't process anything else!

So if you have a nice cold beer and meal of say, steak & chips with a creamy pepper sauce and vegetables followed by a delicious new york cheese cake (mmmmm)  you would have a combination of fats, protein, carbohydrates and alcohol.

Now your body tries to convert everything you eat or drink into energy, glucose. Some stuff is too hard, even for you! Fibre is tough for the body to breakdown, raw starchy foods are hard work and most raw veg is quite a lot of work too. Carbs are easy peasy.

The body *loves* carbohydrates in all their delicious and addictive forms.  Carbs are easy to digest and turn almost instantly into glucose.  So fast is the process that before you have even swallowed your first bite of that sponge cake the enzymes in your mouth are breaking it down into glucose!

What happens next I hear you cry!  Well, sit back and let me explain.

Assuming you are not doing any exercise, as you digest your food and turn it into glucose you naturally experience an increase in the amount of glucose in the blood stream.  The increase in glucose levels, in non-diabetics, causes the pancreas to start delivering insulin to the body.

The body can do three things with the glucose:

1. It can use it to provide fuel to the cells of the body.  Every cell in the body needs glucose to live and function.

2. It can 'charge up' the liver, where is is stored as glycogen (think concentrated glucose)

3. It can be turned into fat

To get the glucose into every cell of the body, with the exception of the brain and autonomic system (think nerves/heart/spine) which can satisfy their needs directly from the blood stream, the cells need insulin.

Insulin 'unlocks' the cell door.  It transports glucose into the cell.  

No insulin, no energy in the cell.

So for you, you pancreatically challenged fool, if you don't inject insulin, you have no mechanism for transporting fuel to the cells in your body.

"But how much insulin do I need to inject", now the fun starts.  Remember I told you to test?  Remember I told you to log data?  Well this is why.  You are as strange and unique as the next diabetic, and your body will behave in its own beautifully independent fashion.  It will not conform to averages, 'normal' ratios or even guesswork!

You will need to learn!  

You will then need to learn to think like your pancreas. If you *really* want to control your diabetes you will need to grab a hold of it and make it a part of you, accept it, internalise it and get on with living with it - not have it control you!

Keep a paper diary, log everything - time you ate, what you ate, how many grams of carbs (its on the label!!), what was your bg before you ate, was it a meal out, were you socialising, what sort of mood were you in? 

Always check you bg 1.5hrs after eating, 'cos 50% of your bolus will have been used up by then so you should have peaked on you bg post meal and you can check to see if you got it right.

Only with your data can you make informed decisions.

Keep capturing the data and believe me you will soon spot patterns.

Next edition:  Why Low Carb - are you mad?

Testing Times!!

Testing Times!

Why oh Why - someone please tell me why I have to spear myself all the bloody time (& I do mean bloody!).

Simple.

Your BG Meter is the only tool you have to help you make informed choices about managing your diabetes.  Don't want to manage it?  Want to be one of these statistics?

• Kidney disease accounts for 21 per cent of deaths in Type 1 diabetes
• Cardiovascular disease is a major cause of death and disability in people with diabetes, accounting for 44 per cent of fatalities in people with Type 1 diabetes
• People with diabetes are 10 to 20 times more likely to go blind than people without.
• Diabetes is the most common cause of lower limb amputations.  Up to 70 per cent of people die within five years of having an amputation as a result of diabetes.
• Neuropathies (or nerve damage) may affect up to 50 per cent of patients with diabetes.
• Diabetes is the fifth most common cause of death in the world    
• The prevalence of depression is approximately twice as high in people with diabetes as it is in the general population

Source: www.diabetes.org.uk/Documents/Reports/Diabetes_in_the_UK_2010.pdf

Life expectancy is reduced, on average, by more than 20 years in people with Type 1 diabetes

Well I sure as hell don't, so given the choice, and it is MY choice, I want to manage my diabetes!

Easier said than done.....

Here is my first ever chart - the last week of January, my first few insulin injections and the first time I got the meter to say anything other than "HI"!

Max, Min and Average

I was very pleased with this.  Scared, worried that, as the GP had said "It'll take you eighteen months to get your bloods under control, and we don't recommend you do anything more strenuous than a gentle walk maybe once a day", but heartened that it was at least possible to get this thing under control.

One week of data, loads of reading, and no way I was going to have my life expectancy reduced by 20 years!  FFS that would only give me another ten to fifteen years.  Sod that.  Way too much to do yet!

I could barely wait for each new day and each new hour so I could capture more data, test, test, test.  I was racking up at least ten tests a day.  I knew that the more data I had the better chance I would have of being able to make sensible and informed decisions.

By now I had also decided to go  low carb.  I mean really low carb.  I was not my Dieticians favourite pupil any more.

Next edition:  Carb counting, Energy, Pseudoscience and Guidelines!

One Week In.....

I week in....

"But Paul" I hear you ask, "What happened in the 10 days between the General Practitioner (GP) telling you your fasting blood glucose (BG) was 17.6mmol/l and you being put on insulin?"

A very good question, and here's the tale:

I generally liked to think of myself as pretty fit.  Lots of walking with three dogs twice a day, running, cycling and the ever needy garden to tend to.

Sure I love my food and was perhaps a bit overweight, perhaps I drank a bit too much now and then, but I could also run an 8:30 mile, do hiking all day and cycle for hours without being knackered at the end of it.

In the twelve years or so that we have lived here I think I have been to the GP's maybe three or four times, usual stuff, man-flu (!), stomach bug, you know the sort of thing.  On each visit I have met a different GP, some I think were full-timers, others just passing through, suffice to say I had never met the same person twice.

So on Monday the 16th January when  I went into the surgery it was no surprise to me that I was seen by a temp GP.  She was lovely. I was asked for a urine sample and as soon as it showed positive for glucose I was asked to book in for a fasting blood test.  Fasting?  What's that I asked, and so the use of the word "diabetes" was introduced to my lexicon for the first time.

Having made a booking for the first slot available that Friday I was sent on my way.

Friday the 20th 09:30.  Fasting Blood Test, and cholesterol, liver function, kidney function oooh intriguing!

A Pint of Blood! That's nearly an armful!

Friday the 20th 16:30 - call at home from the GP's!  Some doctor I've never heard of, who apparently is the head of the practise. "Hello" he says, "it's the doctor here".

Now I've never been called by a doctor in my life, never mind at home and I don't know about you, but having his first word be "Don't worry" immediately scared the living hell out of me!

"Hello" says I, "What can I do for you?"

"Now I don't want you to worry, its nothing to worry about.  We have your BG results and they are a bit high so I thought I should call and tell you."

"Oh, how high?"

"Well, a bit higher than we would like really," pause, "so is your cholesterol and liver function and we'd like to check you kidneys"

SHIT!

"OooooKaaay - so exactly what are the results?"

"Well, your fasting BG is 17.6...."

I kind of stopped listening at that point, having been on Google for the last few days looking into what might be causing my symptoms and having a check list of a few really nasty options, a really high BG was not what I wanted to hear!

I was then asked to make an appointment for the next Monday to see someone at the surgery to go through the results, told to "stop eating anything with sugar in it" and "not to worry".

Monday 23rd January.  Another trip to the GP.  Another new face, and before I had even sat down, before even we had made eye contact, I was told I was overweight and needed to exercise, that I was a type 2 diabetic and needed metformin! Now, agreed, I could do with losing a few pounds, but overweight enough to become a T2?  My Body Mass Index was 26, I was 83.5kg, stocky sure, but WHAT!  I needed to "lose weight & exercise"!!

I was incredulous.  Here was someone who wouldn't be able to run down-hill for a bus telling me to lose weight.  Me!  Up until the last few months I had been training for a half marathon, running an 8 minute 30 second mile over 6 miles - bloody cheek!

Suffice to say I had a few questions, having spent the entire weekend researching diabetes - thank you the Diabetic Online Community (#doc)!

I asked for the basis of the diagnosis and the evidence to support it.  I asked for the tests and the data that discounted any other possibilities.  I asked for a copy of all the tests done to date and a full explanation of all of the results.  I wrote everything down in a notepad I had taken with me.  I asked for another opinion as I fundamentally disagreed with the diagnosis and treatment being offered me.  

I asked to see a specialist.

I was told that I could see a specialist in "a few weeks time" as the earliest slot on the system was well into March.  So I asked "does this practise have sufficient insurance to cover the unlikely event of me waking up in ER having been rushed in with Diabetic Ketoacidosis?" That got a response!

I was then give a blood glucose meter, told "not to go mad with it - there's no need to test all the time, a couple of times a day, and if the reading goes above 20, call us"

OK then - thanks!

So, home, open the meter, discover that there are only 10 test strips in the sample bottle and by the time you've figured out how to use the bloody thing you have 2 test strips left!  Back to town to the nearest chemist to see if they sell the test strips you want - they do!  How much!! Holy crap!!  Buy a couple of boxes and home again.

Lets see what happens!

Next instalment - First (Last) Supper, First Real Test & NHS Direct.