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!

Easy this diabetes, isn't it?

Worried - Hell Yes!

Last night was an eye opener.  Ok, so I'm only 7 months old in diabetes years, but I also a grown man, so you'd think I would be able to avoid a self-inflicted scare, right?

Ha, if only.  So there I was, meal cooked, hands clean (please note DSN!), bg measured carbs counted and bolus injected - all ready to eat and chatting away with Mrs. B when 'we' decided to take a closer look at a logo we have been designing. "It'll only take me a few minutes" said Mrs. B, "I'll just pop up and edit it, it'll look so much better!"

No worries.  I sat there and faffed with the website a bit, then decided to check the links, then updated a blog, then faffed a bit more, then went to synch the sites so I could see how it looked 'live' - boom - an hour had passed and all of a sudden I couldn't see properly.  Ringing in the ears, heart beat up...whoa there.

Stood up and walked out of the office, feeling ever so slightly like it wasn't really me, like I was only a passenger on a bus along for the ride, and not really worried about who the hell WAS driving the bus!

Walked into the kitchen, opened the fridge!  Went to the table, picked up my meter and my plate of food. Walked into the lounge - sat down, started at the food in one hand and the meter in the other.

"Are you OK" asked Mrs. B

"I think I might be a bit low", says I. "I took the bolus ages ago." Doh!  Still hasn't registered that I might actually need to eat something, like, fast!

So what do I do?  Another bg test!  What a plonker - bg of 2.6, my first ever below 3 reading and I still sat there like a lemon!  Mrs. B to the rescue, one big glass of orange juice later and an 'instruction' to eat my food and an hour later I was back up to a 4.3.  

Then a 6.8.

Then a 9.8 before bed!! And now scared to correct 'cos its bedtime and worried about going low overnight!

Quote of the night from the wonderful Mrs. B "wow, like you can't lose focus on this even once can you. I mean ever!"

Pah - easy this diabetes, isn't it?

Neighbours - Series 1, Episode 1

A tale of the breakdown in the relationship between Hilary Pancreas and Peter Beta-Cell. Set in the small town of Pancreville.

Episode One

"Well, we'd been together for years"  said Mrs P, "I thought we knew each other so well, I mean, we practically grew up together (sniff, sniff).

Years, I mean literally, years! Living together,  working together, building a beautiful home together - great views by the way and lovely weather on the Islets of Langerhan - and at least I get to keep the house!

And now he's just gone!  Up'd and left me - I bet its that Suzy Amylin, I bet they've run off together, 'cos she's mysteriously disappeared too - cow!  

We even went to councelling, the therapist suggested a 2nd honeymoon might rekindle the enthusiasm, I was willing to try anything, said Mrs P.

We packed our bags, and off we went.  It was like magic! Ohh what memories, the first few weeks turned into a couple of great months, just like the old days, he couldn't keep away from me! 

Then he just seemed to fade out.  

Like he wasn't even really there (sniff, sniff). I tried everything (sobs)

I made his favourite meals, did all the things he likes to do, went to the macth with him, everything! But it made no difference. Slowley, week by week, he just closed down on me, withdrew, physically and emotionally.  It was like being in the house all alone with only the echo of him there....(sobs uncontrollably)....what am I going to do...(wail!)

"Think of the children - all those little mouths to feed, all the time, every day!!  You can't leave me to do this on my own" she cried "Every cell of my body yearns for him - how will I cope!!"

Thank you so much for listening, and the hanky (!), sorry about the tears but I just don't know what to do....what did you say your name was?

Well my dear, let me formally introduce my self - the name is Ian Sulin, perhaps I can help?  Dinner?

Next Episode: Is it on or off?  The Highs & Lows of a new drama about relationships.

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!

Reading Material

Reading Material!

Type 1 Diabetes then?  Wow.  At 44 years old?  Are they absolutely sure?

Having now met the Consultant and spent another two hours going through things in even more detail I was told that 

"Almost certainly you are a Type 1 Diabetic" 

There were other concerns with symptoms, which might be down to any number of things; coeliac, hyperthyroidism, cancer, fatty liver decease (?), aching kidneys, all of which could be due to high blood sugar levels over the last couple of months but still needed to be explained.  Doc explained that he thought my background level of fitness and consumption of gallons of water was one of the reasons I hadn't fallen over yet!!

Good job I love to read, study and learn new things.

Imagine my delight at dipping into the world of diabetes!  Brilliant.  No two 'specialists' can agree on anything.  If one says it's Black, the other says it's White, and both show 'studies' to prove the point. If the UK says its mmol/l the USA says its mg/dl - you work it out!

Have I mentioned Specialist Diabetic Dieticians yet?  

Wow, another whole world of psudo-science and government guidelines!  about the only thing that the Endocrinologists and the Dieticians seem to agree on is that the body needs energy! As if that wasn't enough to be getting my head around, along comes Carbohydrate Counting (Carb Counting), the joy!!

Fortunately I was pointed in the direction of  a few 'must read' books, each of which I will review individually in separate articles:

The Diabetes Solution by Dr Richard K. Berstein, MD was my first read.  Cover to cover, two day, job done.  So now I'm an expert eh? But hold on, everything he says is in direct opposition to the American Diabetic Association? Duh? Why?

POLITICS

Oh for the love of sweets!  Is there nowhere safe from the vested interests of capitalism?  Money + power = politics.  There, I've said it...now I'll have to explain it.  I promise to devote time to write a piece on just this, explaining what I have read, heard, found and observed over the last six months!

Back to reading lists.  So having read about the fight between Bernstein and 'the Establishment' I thought I had better read something from them too. 

American Diabetes Association (ADA) and the Medical Management of Type 1 Diabetes, fifth edition was my second read. Very useful, written for the medical community and surprisingly easy to follow, although I did have to keep the medical dictionary & google close to hand!

Next was Think Like a Pancreas by Gary Scheiner.  Bloody Brilliant, I'll say it again, brilliant!

Type 1 Diabetes for Dummies is exactly what it says it is.  Very 'on message' with the ADA.

Carbs & Cals by Chello Publishing Ltd who also have an iPhone app to go with it - very, very handy for carb counting beginners and experts alike.

Dr. Robert Atkins and Dr Atkins New Diet Revolution

The Glycemic Index for Dummies

Sheri R. Colberg and the Diabetic Athelete's Handbook

and several hundred research papers from institutes all over the world studying diet, exercise, insulin, complications (eek) and everything else affected by diabetes, which I will also share with you over the coming posts.

So what have I immediately learnt form reading all of the above?

One key thing:  I can manage my diabetes

Next edition:  Testing Times!