explaining what it's really like to live with Type 1

Snapsy said:

I wrote this in April 2014, in the middle of a meltdown.
Things are different now - I'm on a pump, I have a Libre, I have discovered exercise and I choose to not base my diet around much carbohydrate. And I'm finally feeling that I am actually living my life.
This is my story. I am very unsure about sharing it so widely, so please be gentle with me.
Thank you.

* * * * * * * * * * * *

BETWEEN TWO LINES

When I introduce myself to people, I often ‘forget’ to introduce my other half. No, not Jim, my husband-to-be, my partner-in-crime, the funny man to my straight guy, who’s been with me since 2006, but my type 1 diabetes, my constant, lifelong, other till-death-us-do-part companion since May 1986.

And when I say ‘forget’ to introduce it, the inverted commas are there for a reason. Because, well, it’s a bit of a fib.
I choose to not mention it. Because why would I mention it?
It’s not interesting. It’s an effort to explain. And if I talk about it the second I meet you, I feel I would come across as self-obsessed.

And if I do mention it, I find it difficult that people think they know about diabetes. ‘No sugar, and injections, right?’ Wrong.
It’s more complicated than that. It takes a long time to explain.
And in that whole time I’m taking to explain it, I’m the centre of attention. It’s all about me, me, me. And that’s social death, isn’t it? ‘Hi, I’m me. Let’s talk about me.’

Why would people need an introduction to it, though? ‘Hi, I’m Rebecca’ should surely suffice. That’s ‘me’, isn’t it? They don’t need to know that I have type 1 diabetes.

They don’t necessarily need to know.
But actually, I need them to know.

Many people summarise – to me – my diabetes with the catch-all statement ‘You can’t eat sugar’. Yes, I can. But it’s more complicated than that.

You see, sugar isn’t just sugar. What people get confused about is the fact that all carbohydrate in food breaks down into glucose, or ‘sugar’, in the body. If I eat anything containing carbohydrate, it will raise my blood glucose level. Not just sugar.

Not just that white granulated stuff, or the crunchy brown Demerara, or the treacly Muscovado that’s the magic ingredient in my banana cake recipe. Not even just sweet things. There are many things that break down into ‘sugar’ in the body. Things like milk, bread, rice, potatoes, carrots, fruit, oats, pasta, tomatoes, beans, cereal, sauces, yoghurt, biscuits, peas, couscous, curry – and lots and lots of other food and drink.

I can eat what you eat. But it’s a process. It’s not spontaneous – I can’t just decide halfway through Sunday lunch that actually I’ll have another two roast potatoes and a slug of nice thick gravy. Well, actually I can, but I’ll have to go through the process all over again. Which a lot of the time, frankly, is too much trouble. So I’ll either avoid the tempting seconds and feel hard done by, or I’ll have the potatoes and gravy regardless and then beat myself up later for the resulting high blood sugar level.

The process is this:
• I calculate (or estimate and hope for the best) the number of grammes of carbohydrate in the food I am eating.
• I test my blood glucose level – and I’m going to talk about this a bit more later on. It’s a messy, painful, attention-grabbing process involving a noisy, bulky machine, a drop of blood, a tissue. Perhaps then another tissue. If you see me grasping a tissue in my hand, with my fingers tucked into my palm – well, that’s there because I’ve just done a test. And because I do so many tests, there is usually a tissue in my hand. It is not a bandage. Please don’t ask ‘what have you done to your hand?’ because then I’ll have to explain.
• Based on the time of day, the results of my blood glucose test, and the number of grammes of carbohydrate in the food I am eating – these are three separate factors which will inevitably differ from one occasion to the next - I work out how many units of insulin I need to inject. Every time I eat.

I test at these points of the day:
• When I wake up.
• Before I eat or drink anything containing carbohydrate.
• Often after I eat.
• Whenever I don’t feel ‘right’. This is a lot of the time.
• Whenever I am about to go out.
• If I’m going to be in the company of other people and don’t want to make a fool of myself by being low.
• Before important meetings, so I don’t mess up my responsibilities.
• Before I start work. I work alone, and I work with fire. It would be crazy not to test. It would be crazy to go low – or high. I need to be safe.
• During my work. See above.
• Before bed.
• Sometimes during the night.

Let me explain what amounts to a Catch 22, really.
It frustrates me that people don’t know about diabetes.
It frustrates me that people don’t know about my diabetes.
But I don’t want to tell them.
I’m embarrassed to be ‘different’.
And I don’t want to talk about myself, because it’s a) too intimate and b) feels rather self-centred.

So, do I tell them? Well, I suppose I should – because I want people to understand - but it frustrates me that I feel I need to waste their time by telling them everything about it. And yet I can’t summarise it. A little knowledge is a dangerous thing.
If I’m going to tell you, I’m going to have to tell you everything.

Ready? Here goes. You might want to get comfy – it’s going to take a while.

It’s all about numbers.
Keeping between two lines.

There’s a target range for blood glucose test results. It’s between 4mmol/l and 7mmol/l (that’s millimoles of glucose per litre of blood, if you’re interested).

Imagine those numbers as two lines on a graph.

Since the age of 11, my all-consuming ambition has been for my test results to be numbers between those two lines. Always.

Every single test.

It’s a full-time job with no time off, no chance of retirement. Given that the numbers change on a minute-by-minute basis, according to what I’ve eaten or haven’t eaten, whether I’ve correctly or incorrectly calculated the amount of insulin I’ve taken, whether I’ve been very active or inactive, whether it’s a hot day or a cold day, whether I’m stressed out or chilled out, or simply because of that mystical factor of ‘just because’, – well, I’m constantly being chased by a whole series of numbers. It’s fine to be chased by the ‘good’ numbers – the ones between two lines – in fact, that’s quite fun. It’s ‘good’. It’s ‘right’.

The numbers that aren’t between those two lines, though, are the baddies. And I feel as if they’re going to get me.

But whether they’re high or low, they’re not just numbers. Those two lines aren’t arbitrary. Each number on the scale represents its own set of physical feelings.

Most of the time, I feel slightly unwell. Not awful, not ill, just slightly unwell. Bearable. Physically, it’s bearable.
But what does it all actually feel like?

High blood glucose levels
• Over about 10mmol/l, I feel sluggish and slow.
• Over about 12mmol/l, I feel tired and cross. If I’m at this level for a while, I’ll get pain in my lower back, because my kidneys are working harder to get rid of the excess glucose. I’ll feel thirsty. I’ll feel poorly. My breath will smell.
• If the number is higher, I’ll feel worse.
• Over about 18mmol/l, I’ll also feel slightly sick, and will want to curl up and go to sleep. Except I can’t curl up, because if I bend my legs I will get crippling cramp. All that sugar has made me slow and syrupy, and my blood feels just too sticky to move effectively.

Physically, then, if I’m too high, I’ll feel rubbish.

Low blood glucose levels
• At around 4.5mmol/l, I’ll begin to feel shaky.
• At around 4mmol/l, I’ll start to get hot. Very hot. And confused.
And I’ll be talking and talking without making much sense.
• Below 4mmol/l, I’ll be vague and vacant. My eyes won’t focus.
• Below 3mmol/l, I’ll be feeling – and appearing to others – very odd.
• Below 2mmol/l, it’ll get scary. I’ll be soaking wet and freezing cold.

Physically, then, if I’m too low, I’ll feel rubbish.

And if my blood glucose level is dropping fast, I might not even realise any of these things are happening.

I lose entire days to hypoglycaemia, low blood glucose. On a particularly ‘fun’ day, I’ll be a diabetes rollercoaster. If I’ve been low in the night, I’ll be stratospheric first thing. That’ll make me cross. I’ll sort that out with a corrective dose of insulin at breakfast time, calculated by me according to the ‘right’ criteria. But that might be too much, which means I’ll go low a couple of hours later. By which time I’ll be cross, and if I’m by this stage sick and tired of the situation, I’ll be impatient, and not want to wait to feel better (a process which takes 10-15 minutes or so). So I’ll eat more glucose. And more. Maybe then a biscuit, just to make sure. Or something else. And then I’ll kick myself for being high again afterwards. Again, cross. And then I’ll correct that with some more insulin. And then I might go low again, and – yes - get cross. Eventually I’ll probably just go to bed and hope that tomorrow will be better.
Tomorrow, though, will be its own rollercoaster. Because diabetes doesn’t ‘improve’. It’s not like a cold, which feels progressively better day after day until it’s gone. Every day, every single day, I feel like a beginner, a novice, a failure. I’m out of control with trying to be in control. It’s a nightmare.

Sorry, where was I? Oh yes:

It’s important to consider – for me to consider as well as for you to consider - my lack of ability, when I’m lower than I should be, to think rationally, to concentrate, and to make decisions. When I’m low, my brain doesn’t work properly. Thinking is not its main priority of function.

Consider this:
Before Jim’s recent operation, we were reading the pre-op assessment blurb from the hospital. This bit caught my eye:

‘If you have had a general anaesthetic or sedation, you should not sign legal documents for at least 24 hours.’

I realised something huge.
One can assume from the above that after general anaesthetic or sedation, one isn’t quite all ‘there’. Not quite compus mentis. Not competent to sign legal documents. Not ‘right in the head’.
I’m not ‘all there’ when my blood glucose levels are below that bottom line. I can’t think. I’m confused. But to you I might not look or seem any different, especially if you don’t know me well.

I probably won’t realise this, though. If you ask me to do something, commit to something, sign something, then the chances are I’ll be keen to do it. I’m a pleaser, and I like to help, but I might be making a decision when I’m not in full control of my brain. Yes, that sounds dramatic, but that’s the only way I can describe it.

Often, when I’m low, particularly if it’s an instance where I’ve ‘crashed’ very quickly, and although I will have awareness of not being right, I cannot be relied upon to make the right decisions and go through the right processes to fix the problem. If I’m away with the fairies, generally I’m more interested in the fairies than in finding a source of fast-acting carbohydrate.

Not only can I not make the decision to take the action required, I don’t have the capacity to make the decision to not make the decision. So I’ll just drift. The social and safety repercussions of such a scenario have the potential to haunt me for a lifetime. Some already do.

Want to hear about the psychological implications of all this? If the number’s not between those two lines on the graph, then I’m rubbish. By that I don’t mean that I physically feel rubbish (although that is often the case), but that I am rubbish.
And that I’ve got it wrong.
I’m an idiot.
It’s my fault.
I’m stupid.
I’m a failure.
And that I’ve broken my day. I might as well not go to work, not go out. Perhaps I’ll go back to bed, or eat a 1kg tin of Quality Street – after all, if the numbers are going to be ‘wrong’ anyway, I might as well make the most of it. Perhaps I’ll drive to Margate on a whim, without telling anybody. I’m unpredictable and I’m complicated. Who knows what I might do? I certainly don’t.
Too high? I feel rubbish both physically and psychologically.
I beat myself up about it. I’m cross. I hate myself for getting it wrong.

Too low? I feel rubbish both physically and psychologically.
I beat myself up about it. I’m cross. I hate myself for getting it wrong.

Do you see a pattern here? This is what it’s like.

And even when I’m not in the process of doing a test, or if I haven’t done one for an hour, or if I’m changing my plans for the day, or I’m drinking alcohol, or am full of adrenaline thanks to things going on around me, I’m always wondering where I am on the scale.
Am I ‘right’?
Am I low?
Am I high?
Am I just right but possibly dropping slowly?
Or dropping fast?
Or going high?
There is no escape. It is in my head all the time.

And for the sake of my long-term health (avoiding diabetes complications such as blindness, neuropathy, amputations, kidney failure) that’s absolutely the way it should be. It is, really.

Aiming for perfect control means that I’m more likely to be low than high. But whenever I’m low, I come across to myself and to others as completely bonkers. That’s not good for my social life, my work, or my confidence. Or indeed my safety.

I am told on a regular basis – often in fact by the very healthcare professionals who gave me the target of those two lines to stay between – that I’m too hard on myself, and that I should ease up. After all, a few numbers here and there that don’t fall between two lines are okay, surely?
Well, are they?

If you tell me to keep between two lines, then it is right to keep between two lines; ergo going out of that range is therefore wrong.

How does that compute, exactly?
‘You’ve got to be right, but actually, being right all of the time is wrong, so it’s okay to be wrong even though you need to be right’.
Eh?

I get so cross when I’m high. And when I’m low.

Sometimes, I’m just cross.

* * * * * * * * * * * *

Love Snapsy xxx

Click to expand...

Snapsy said:

I wrote this in April 2014, in the middle of a meltdown.
Things are different now - I'm on a pump, I have a Libre, I have discovered exercise and I choose to not base my diet around much carbohydrate. And I'm finally feeling that I am actually living my life.
This is my story. I am very unsure about sharing it so widely, so please be gentle with me.
Thank you.

* * * * * * * * * * * *

BETWEEN TWO LINES

When I introduce myself to people, I often ‘forget’ to introduce my other half. No, not Jim, my husband-to-be, my partner-in-crime, the funny man to my straight guy, who’s been with me since 2006, but my type 1 diabetes, my constant, lifelong, other till-death-us-do-part companion since May 1986.

And when I say ‘forget’ to introduce it, the inverted commas are there for a reason. Because, well, it’s a bit of a fib.
I choose to not mention it. Because why would I mention it?
It’s not interesting. It’s an effort to explain. And if I talk about it the second I meet you, I feel I would come across as self-obsessed.

And if I do mention it, I find it difficult that people think they know about diabetes. ‘No sugar, and injections, right?’ Wrong.
It’s more complicated than that. It takes a long time to explain.
And in that whole time I’m taking to explain it, I’m the centre of attention. It’s all about me, me, me. And that’s social death, isn’t it? ‘Hi, I’m me. Let’s talk about me.’

Why would people need an introduction to it, though? ‘Hi, I’m Rebecca’ should surely suffice. That’s ‘me’, isn’t it? They don’t need to know that I have type 1 diabetes.

They don’t necessarily need to know.
But actually, I need them to know.

Many people summarise – to me – my diabetes with the catch-all statement ‘You can’t eat sugar’. Yes, I can. But it’s more complicated than that.

You see, sugar isn’t just sugar. What people get confused about is the fact that all carbohydrate in food breaks down into glucose, or ‘sugar’, in the body. If I eat anything containing carbohydrate, it will raise my blood glucose level. Not just sugar.

Not just that white granulated stuff, or the crunchy brown Demerara, or the treacly Muscovado that’s the magic ingredient in my banana cake recipe. Not even just sweet things. There are many things that break down into ‘sugar’ in the body. Things like milk, bread, rice, potatoes, carrots, fruit, oats, pasta, tomatoes, beans, cereal, sauces, yoghurt, biscuits, peas, couscous, curry – and lots and lots of other food and drink.

I can eat what you eat. But it’s a process. It’s not spontaneous – I can’t just decide halfway through Sunday lunch that actually I’ll have another two roast potatoes and a slug of nice thick gravy. Well, actually I can, but I’ll have to go through the process all over again. Which a lot of the time, frankly, is too much trouble. So I’ll either avoid the tempting seconds and feel hard done by, or I’ll have the potatoes and gravy regardless and then beat myself up later for the resulting high blood sugar level.

The process is this:
• I calculate (or estimate and hope for the best) the number of grammes of carbohydrate in the food I am eating.
• I test my blood glucose level – and I’m going to talk about this a bit more later on. It’s a messy, painful, attention-grabbing process involving a noisy, bulky machine, a drop of blood, a tissue. Perhaps then another tissue. If you see me grasping a tissue in my hand, with my fingers tucked into my palm – well, that’s there because I’ve just done a test. And because I do so many tests, there is usually a tissue in my hand. It is not a bandage. Please don’t ask ‘what have you done to your hand?’ because then I’ll have to explain.
• Based on the time of day, the results of my blood glucose test, and the number of grammes of carbohydrate in the food I am eating – these are three separate factors which will inevitably differ from one occasion to the next - I work out how many units of insulin I need to inject. Every time I eat.

I test at these points of the day:
• When I wake up.
• Before I eat or drink anything containing carbohydrate.
• Often after I eat.
• Whenever I don’t feel ‘right’. This is a lot of the time.
• Whenever I am about to go out.
• If I’m going to be in the company of other people and don’t want to make a fool of myself by being low.
• Before important meetings, so I don’t mess up my responsibilities.
• Before I start work. I work alone, and I work with fire. It would be crazy not to test. It would be crazy to go low – or high. I need to be safe.
• During my work. See above.
• Before bed.
• Sometimes during the night.

Let me explain what amounts to a Catch 22, really.
It frustrates me that people don’t know about diabetes.
It frustrates me that people don’t know about my diabetes.
But I don’t want to tell them.
I’m embarrassed to be ‘different’.
And I don’t want to talk about myself, because it’s a) too intimate and b) feels rather self-centred.

So, do I tell them? Well, I suppose I should – because I want people to understand - but it frustrates me that I feel I need to waste their time by telling them everything about it. And yet I can’t summarise it. A little knowledge is a dangerous thing.
If I’m going to tell you, I’m going to have to tell you everything.

Ready? Here goes. You might want to get comfy – it’s going to take a while.

It’s all about numbers.
Keeping between two lines.

There’s a target range for blood glucose test results. It’s between 4mmol/l and 7mmol/l (that’s millimoles of glucose per litre of blood, if you’re interested).

Imagine those numbers as two lines on a graph.

Since the age of 11, my all-consuming ambition has been for my test results to be numbers between those two lines. Always.

Every single test.

It’s a full-time job with no time off, no chance of retirement. Given that the numbers change on a minute-by-minute basis, according to what I’ve eaten or haven’t eaten, whether I’ve correctly or incorrectly calculated the amount of insulin I’ve taken, whether I’ve been very active or inactive, whether it’s a hot day or a cold day, whether I’m stressed out or chilled out, or simply because of that mystical factor of ‘just because’, – well, I’m constantly being chased by a whole series of numbers. It’s fine to be chased by the ‘good’ numbers – the ones between two lines – in fact, that’s quite fun. It’s ‘good’. It’s ‘right’.

The numbers that aren’t between those two lines, though, are the baddies. And I feel as if they’re going to get me.

But whether they’re high or low, they’re not just numbers. Those two lines aren’t arbitrary. Each number on the scale represents its own set of physical feelings.

Most of the time, I feel slightly unwell. Not awful, not ill, just slightly unwell. Bearable. Physically, it’s bearable.
But what does it all actually feel like?

High blood glucose levels
• Over about 10mmol/l, I feel sluggish and slow.
• Over about 12mmol/l, I feel tired and cross. If I’m at this level for a while, I’ll get pain in my lower back, because my kidneys are working harder to get rid of the excess glucose. I’ll feel thirsty. I’ll feel poorly. My breath will smell.
• If the number is higher, I’ll feel worse.
• Over about 18mmol/l, I’ll also feel slightly sick, and will want to curl up and go to sleep. Except I can’t curl up, because if I bend my legs I will get crippling cramp. All that sugar has made me slow and syrupy, and my blood feels just too sticky to move effectively.

Physically, then, if I’m too high, I’ll feel rubbish.

Low blood glucose levels
• At around 4.5mmol/l, I’ll begin to feel shaky.
• At around 4mmol/l, I’ll start to get hot. Very hot. And confused.
And I’ll be talking and talking without making much sense.
• Below 4mmol/l, I’ll be vague and vacant. My eyes won’t focus.
• Below 3mmol/l, I’ll be feeling – and appearing to others – very odd.
• Below 2mmol/l, it’ll get scary. I’ll be soaking wet and freezing cold.

Physically, then, if I’m too low, I’ll feel rubbish.

And if my blood glucose level is dropping fast, I might not even realise any of these things are happening.

I lose entire days to hypoglycaemia, low blood glucose. On a particularly ‘fun’ day, I’ll be a diabetes rollercoaster. If I’ve been low in the night, I’ll be stratospheric first thing. That’ll make me cross. I’ll sort that out with a corrective dose of insulin at breakfast time, calculated by me according to the ‘right’ criteria. But that might be too much, which means I’ll go low a couple of hours later. By which time I’ll be cross, and if I’m by this stage sick and tired of the situation, I’ll be impatient, and not want to wait to feel better (a process which takes 10-15 minutes or so). So I’ll eat more glucose. And more. Maybe then a biscuit, just to make sure. Or something else. And then I’ll kick myself for being high again afterwards. Again, cross. And then I’ll correct that with some more insulin. And then I might go low again, and – yes - get cross. Eventually I’ll probably just go to bed and hope that tomorrow will be better.
Tomorrow, though, will be its own rollercoaster. Because diabetes doesn’t ‘improve’. It’s not like a cold, which feels progressively better day after day until it’s gone. Every day, every single day, I feel like a beginner, a novice, a failure. I’m out of control with trying to be in control. It’s a nightmare.

Sorry, where was I? Oh yes:

It’s important to consider – for me to consider as well as for you to consider - my lack of ability, when I’m lower than I should be, to think rationally, to concentrate, and to make decisions. When I’m low, my brain doesn’t work properly. Thinking is not its main priority of function.

Consider this:
Before Jim’s recent operation, we were reading the pre-op assessment blurb from the hospital. This bit caught my eye:

‘If you have had a general anaesthetic or sedation, you should not sign legal documents for at least 24 hours.’

I realised something huge.
One can assume from the above that after general anaesthetic or sedation, one isn’t quite all ‘there’. Not quite compus mentis. Not competent to sign legal documents. Not ‘right in the head’.
I’m not ‘all there’ when my blood glucose levels are below that bottom line. I can’t think. I’m confused. But to you I might not look or seem any different, especially if you don’t know me well.

I probably won’t realise this, though. If you ask me to do something, commit to something, sign something, then the chances are I’ll be keen to do it. I’m a pleaser, and I like to help, but I might be making a decision when I’m not in full control of my brain. Yes, that sounds dramatic, but that’s the only way I can describe it.

Often, when I’m low, particularly if it’s an instance where I’ve ‘crashed’ very quickly, and although I will have awareness of not being right, I cannot be relied upon to make the right decisions and go through the right processes to fix the problem. If I’m away with the fairies, generally I’m more interested in the fairies than in finding a source of fast-acting carbohydrate.

Not only can I not make the decision to take the action required, I don’t have the capacity to make the decision to not make the decision. So I’ll just drift. The social and safety repercussions of such a scenario have the potential to haunt me for a lifetime. Some already do.

Want to hear about the psychological implications of all this? If the number’s not between those two lines on the graph, then I’m rubbish. By that I don’t mean that I physically feel rubbish (although that is often the case), but that I am rubbish.
And that I’ve got it wrong.
I’m an idiot.
It’s my fault.
I’m stupid.
I’m a failure.
And that I’ve broken my day. I might as well not go to work, not go out. Perhaps I’ll go back to bed, or eat a 1kg tin of Quality Street – after all, if the numbers are going to be ‘wrong’ anyway, I might as well make the most of it. Perhaps I’ll drive to Margate on a whim, without telling anybody. I’m unpredictable and I’m complicated. Who knows what I might do? I certainly don’t.
Too high? I feel rubbish both physically and psychologically.
I beat myself up about it. I’m cross. I hate myself for getting it wrong.

Too low? I feel rubbish both physically and psychologically.
I beat myself up about it. I’m cross. I hate myself for getting it wrong.

Do you see a pattern here? This is what it’s like.

And even when I’m not in the process of doing a test, or if I haven’t done one for an hour, or if I’m changing my plans for the day, or I’m drinking alcohol, or am full of adrenaline thanks to things going on around me, I’m always wondering where I am on the scale.
Am I ‘right’?
Am I low?
Am I high?
Am I just right but possibly dropping slowly?
Or dropping fast?
Or going high?
There is no escape. It is in my head all the time.

And for the sake of my long-term health (avoiding diabetes complications such as blindness, neuropathy, amputations, kidney failure) that’s absolutely the way it should be. It is, really.

Aiming for perfect control means that I’m more likely to be low than high. But whenever I’m low, I come across to myself and to others as completely bonkers. That’s not good for my social life, my work, or my confidence. Or indeed my safety.

I am told on a regular basis – often in fact by the very healthcare professionals who gave me the target of those two lines to stay between – that I’m too hard on myself, and that I should ease up. After all, a few numbers here and there that don’t fall between two lines are okay, surely?
Well, are they?

If you tell me to keep between two lines, then it is right to keep between two lines; ergo going out of that range is therefore wrong.

How does that compute, exactly?
‘You’ve got to be right, but actually, being right all of the time is wrong, so it’s okay to be wrong even though you need to be right’.
Eh?

I get so cross when I’m high. And when I’m low.

Sometimes, I’m just cross.

* * * * * * * * * * * *

Love Snapsy xxx

Click to expand...

Snapsy said:

"you though are lucky at least you have a pump. NHS say's i can't have one yet i have terrible injection sites and had laser on both eyes. NHS is predudice (50yrs and no more room to inject)"

@richyb I count myself extremely lucky, especially as I didn't fit the 'standard' NICE guidelines. Instead I was considered suitable for one under the ABCD criteria, specifically the quality of life aspects.
https://www.nice.org.uk/guidance/ta151/documents/association-of-british-clinical-diabetologists2

I'm sure you've had a look already, but do you know about Input? Their mission is to help people to access diabetes technology, and can offer advice on how to go about being considered for a pump.
http://www.inputdiabetes.org.uk

I'd wanted a pump for most of my time spent treating my diabetes with MDI, but had concluded (for myself) that as I didn't fit the standard guidelines, that was it, no chance. I didn't then pursue it properly until last year, and even then was convinced I would not be considered suitable. And to be honest, it was a long journey to get there - a couple of decades wanting one, and then most of last year having numerous appointments with the Diabetes Centre. The 'yes' came last July, and I started pumping last October.

Do keep asking them, @richyb . I hope it all works out.

Click to expand...

alaska said:

Currently, life as a type 1 for me is scanning my arm with my Libre every half hour or so and taking a series of small injections (typically around 10 a day at present) through the day.

Injections and Libre scanning is the relatively easy part.

Needing to sometimes wait to eat until your sugar comes down so that you don't spike your sugar levels super-high from an already high level is one of the annoyances.

Having to make dozens of not easy decisions about how much to inject and when, what to eat, how and when. Taking into account a range of different factors every single can be mentally tiring some days.

Never being able to go much more than 500-yards without taking kit and glucose with you just in case your levels start dropping (or sometimes rising -depending how far you're going).

Having your emotions and ability to cope (physically and mentally) tied to your sugar levels. Low sugar levels making you slow and unable to cope with usual tasks that would be a doddle. High sugar levels making you irritable and/or lethargic plus can also initiate short term depressive symptoms. Both low and high sugar levels amplify emotions making it that bit harder to keep one's head together under some situations.

Having to delay or interrupt sex because of low blood sugar.

Urinary tract infections being more likely if sugar levels have been high for several hours or over a number of days -particularly if stressed at the same time.

Occasionally having to battle off feeling depressed about the risk of developing long-term complications if sugar levels having been high for longer than I'd like.

Mostly for me, type 1 diabetes is fine to deal with when control is good. But, when control goes a bit skewiff, the little persistent things can add up to the short term difficulties and that's when things get tough and you want to scream a bit inside or out.

Type 1 can amplify things. When life is tough, the type 1 makes everything that bit harder. However, perhaps the dealing with the tough stuff makes us a bit sunnier and brighter when the good times do happen?

Ed

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alaska said:

Currently, life as a type 1 for me is scanning my arm with my Libre every half hour or so and taking a series of small injections (typically around 10 a day at present) through the day.

Injections and Libre scanning is the relatively easy part.

Needing to sometimes wait to eat until your sugar comes down so that you don't spike your sugar levels super-high from an already high level is one of the annoyances.

Having to make dozens of not easy decisions about how much to inject and when, what to eat, how and when. Taking into account a range of different factors every single can be mentally tiring some days.

Never being able to go much more than 500-yards without taking kit and glucose with you just in case your levels start dropping (or sometimes rising -depending how far you're going).

Having your emotions and ability to cope (physically and mentally) tied to your sugar levels. Low sugar levels making you slow and unable to cope with usual tasks that would be a doddle. High sugar levels making you irritable and/or lethargic plus can also initiate short term depressive symptoms. Both low and high sugar levels amplify emotions making it that bit harder to keep one's head together under some situations.

Having to delay or interrupt sex because of low blood sugar.

Urinary tract infections being more likely if sugar levels have been high for several hours or over a number of days -particularly if stressed at the same time.

Occasionally having to battle off feeling depressed about the risk of developing long-term complications if sugar levels having been high for longer than I'd like.

Mostly for me, type 1 diabetes is fine to deal with when control is good. But, when control goes a bit skewiff, the little persistent things can add up to the short term difficulties and that's when things get tough and you want to scream a bit inside or out.

Type 1 can amplify things. When life is tough, the type 1 makes everything that bit harder. However, perhaps the dealing with the tough stuff makes us a bit sunnier and brighter when the good times do happen?

Ed

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blinddate said:

Unfortunately being between the two lines does not prevent complications. I have also experienced what you are writing about and it is confusing and a real pain in the a-- but life goes on.
I have every complication you can think of practically, my liver is still ok more or less. I have been a Type 1 since 1960, I was 4. I became visually impaired in my early 20s, but I can still partially see from my left eye. I started with gum disease in my mid-twenties and now have no upper teeth and a bridge on the bottom. My kidneys started malfunctioning in my late 30s and are now about 15% but I am not yet on dialysis. My heart diesease started at 50 and on July 10. 1010, the stent they had inserted because the heart surgeon thought a triple bypass was too risky blew causing a major heart attack. I was told 3 mornings in a row I was going to die, but I am still here having to worry how much insulin and carbs to have. I have fastidiously taken care of myself all my life and I am still here struggling. And I was told you could live a perfectly normal life.

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Tanny35 said:

If I said I found living with the dreaded D easy I would be lying.
I have had it since I was 5 - and don't remember not being a diabetic. (Now 35).
I went through my teens not really caring and thinking 'it won't happen to me' I wanted to live a normal life like my friends and family did. I missed appointments for my DN I didn't really care.
Then I had my children. And realised I needed to try my best to control it. Being a single mum of two for many years until I met the lovely Steven was hard to balance work/family and trying to control the diabetes on top of it all. I tried so hard, I had spikes I had lows I felt like I was failing and fell in to depression over it all. But still trying so hard to control it all. And no one else could understand my frustrations. I get sick of injecting, I get sick of bg testing everyday 10/15 times a day and not getting the results I want. I get one day of amazing results and feel on top of the world and like this is easy to control, if I do what I did today the. Tomorrow will be the same - but no, I do the same routine eat the same foods and then 2 or 3 of not so good results. And I think to myself I don't get it? I ask my self all of the time what am I doing wrong, my DN nurse tells me I'm not doing anything wrong but lots of things can affect control. Stress, emotion, hormones and lots more.
Recently, I have hit some complications. I wonder if I had tried harder in my teens would I still have these complications. I sometimes blame myself for everything going wrong right now - but then I sit back and tell myself, it's not an easy condition to live with at all. We all try our best to control it the best we can. And joining this forum has helped me so much, I have learnt I am not the only person that has trouble with erratic BGs, I have realised I'm not the only one that has struggled on a daily basis to get tight control, I have learnt a lot on better ways to get tighter control. I have learnt We all get tempted by that big fat chocolate cake sat there staring us in the face, and we all give in to temptation from time to time.
I have sat and cried at times over the daily struggles of being a T1. But I Jane my meltdown, I then stand tall and brush myself down and tell myself - if I wasn't a D - I wouldn't have met some of the lovely people I have met because of it. I get scared about what the future holds for me and what complications I face in the future. But anyone that lives with diabetes is a true warrior, every single one of us - there is nothing thrown at us that we can't handle or don't somehow manage to get through.


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debz48 said:

PLEASE I REALLY NEED SOME HELP

Hello Snapsy. Im a first time poster, and I have just read your post. I know exactly what you mean, due to the fact I feel the same way you do.
I am a 48 year old woman, who has had type 1 for over 47 years now. I was 11 and a half months old when I was diagnosed, so I have known no other way to live my life. Constantly test my blood levels, working out the carbs and insulin doses. In my later teens I rebelled against my diabetes majorly (when I was younger, my parents were told that "this would happen. No ifs or buts").
I have since then become resilliant to insulin and find it particularly difficult to control.
It was eight years ago put onto the pump, to see if this would help get my diabetes into better control. Unfortunately it has not. I dont know where to turn or what to do. I am at the moment so depressed with it I dont really want to go on. Im constanly stressed with these feelings. My diabeties team have no idea how to advise me. They do genually seem very concerned at this, as they have never seen me so down. I used to always have a smile on my face and very happy with everyþhing. Im only posting on the forum now, as I really do not know where to turn for hèlp and advice. If any one can suggest anything, please replý. I also have numerous oth health issues that are also contributing to the





PLEASE I REALLY NEED SOME HELP

Hello Snapsy. Im a first time poster, and I have just read your post. I know exactly what you mean, due to the fact I feel the same way you do.
I am a 48 year old woman, who has had type 1 for over 47 years now. I was 11 and a half months old when I was diagnosed, so I have known no other way to live my life. Constantly test my blood levels, working out the carbs and insulin doses. In my later teens I rebelled against my diabetes majorly (when I was younger, my parents were told that "this would happen. No ifs or buts").
I have since then become resilliant to insulin and find it particularly difficult to control.
It was eight years ago put onto the pump, to see if this would help get my diabetes into better control. Unfortunately it has not. I dont know where to turn or what to do. I am at the moment so depressed with it I dont really want to go on. Im constanly stressed with these feelings. My diabeties team have no idea how to advise me. They do genually seem very concerned at this, as they have never seen me so down. I used to always have a smile on my face and very happy with everyþhing. Im only posting on the forum now, as I really do not know where to turn for hèlp and advice. If any one can suggest anything, please replý. I also have numerous oth health issues that are also contributing to the way I am feeling lately.
Please any body I would really appriciate some help and advice.
Thank you in advance.

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Snapsy said:

I wrote this in April 2014, in the middle of a meltdown.
Things are different now - I'm on a pump, I have a Libre, I have discovered exercise and I choose to not base my diet around much carbohydrate. And I'm finally feeling that I am actually living my life.
This is my story. I am very unsure about sharing it so widely, so please be gentle with me.
Thank you.

* * * * * * * * * * * *

BETWEEN TWO LINES

When I introduce myself to people, I often ‘forget’ to introduce my other half. No, not Jim, my husband-to-be, my partner-in-crime, the funny man to my straight guy, who’s been with me since 2006, but my type 1 diabetes, my constant, lifelong, other till-death-us-do-part companion since May 1986.

And when I say ‘forget’ to introduce it, the inverted commas are there for a reason. Because, well, it’s a bit of a fib.
I choose to not mention it. Because why would I mention it?
It’s not interesting. It’s an effort to explain. And if I talk about it the second I meet you, I feel I would come across as self-obsessed.

And if I do mention it, I find it difficult that people think they know about diabetes. ‘No sugar, and injections, right?’ Wrong.
It’s more complicated than that. It takes a long time to explain.
And in that whole time I’m taking to explain it, I’m the centre of attention. It’s all about me, me, me. And that’s social death, isn’t it? ‘Hi, I’m me. Let’s talk about me.’

Why would people need an introduction to it, though? ‘Hi, I’m Rebecca’ should surely suffice. That’s ‘me’, isn’t it? They don’t need to know that I have type 1 diabetes.

They don’t necessarily need to know.
But actually, I need them to know.

Many people summarise – to me – my diabetes with the catch-all statement ‘You can’t eat sugar’. Yes, I can. But it’s more complicated than that.

You see, sugar isn’t just sugar. What people get confused about is the fact that all carbohydrate in food breaks down into glucose, or ‘sugar’, in the body. If I eat anything containing carbohydrate, it will raise my blood glucose level. Not just sugar.

Not just that white granulated stuff, or the crunchy brown Demerara, or the treacly Muscovado that’s the magic ingredient in my banana cake recipe. Not even just sweet things. There are many things that break down into ‘sugar’ in the body. Things like milk, bread, rice, potatoes, carrots, fruit, oats, pasta, tomatoes, beans, cereal, sauces, yoghurt, biscuits, peas, couscous, curry – and lots and lots of other food and drink.

I can eat what you eat. But it’s a process. It’s not spontaneous – I can’t just decide halfway through Sunday lunch that actually I’ll have another two roast potatoes and a slug of nice thick gravy. Well, actually I can, but I’ll have to go through the process all over again. Which a lot of the time, frankly, is too much trouble. So I’ll either avoid the tempting seconds and feel hard done by, or I’ll have the potatoes and gravy regardless and then beat myself up later for the resulting high blood sugar level.

The process is this:
• I calculate (or estimate and hope for the best) the number of grammes of carbohydrate in the food I am eating.
• I test my blood glucose level – and I’m going to talk about this a bit more later on. It’s a messy, painful, attention-grabbing process involving a noisy, bulky machine, a drop of blood, a tissue. Perhaps then another tissue. If you see me grasping a tissue in my hand, with my fingers tucked into my palm – well, that’s there because I’ve just done a test. And because I do so many tests, there is usually a tissue in my hand. It is not a bandage. Please don’t ask ‘what have you done to your hand?’ because then I’ll have to explain.
• Based on the time of day, the results of my blood glucose test, and the number of grammes of carbohydrate in the food I am eating – these are three separate factors which will inevitably differ from one occasion to the next - I work out how many units of insulin I need to inject. Every time I eat.

I test at these points of the day:
• When I wake up.
• Before I eat or drink anything containing carbohydrate.
• Often after I eat.
• Whenever I don’t feel ‘right’. This is a lot of the time.
• Whenever I am about to go out.
• If I’m going to be in the company of other people and don’t want to make a fool of myself by being low.
• Before important meetings, so I don’t mess up my responsibilities.
• Before I start work. I work alone, and I work with fire. It would be crazy not to test. It would be crazy to go low – or high. I need to be safe.
• During my work. See above.
• Before bed.
• Sometimes during the night.

Let me explain what amounts to a Catch 22, really.
It frustrates me that people don’t know about diabetes.
It frustrates me that people don’t know about my diabetes.
But I don’t want to tell them.
I’m embarrassed to be ‘different’.
And I don’t want to talk about myself, because it’s a) too intimate and b) feels rather self-centred.

So, do I tell them? Well, I suppose I should – because I want people to understand - but it frustrates me that I feel I need to waste their time by telling them everything about it. And yet I can’t summarise it. A little knowledge is a dangerous thing.
If I’m going to tell you, I’m going to have to tell you everything.

Ready? Here goes. You might want to get comfy – it’s going to take a while.

It’s all about numbers.
Keeping between two lines.

There’s a target range for blood glucose test results. It’s between 4mmol/l and 7mmol/l (that’s millimoles of glucose per litre of blood, if you’re interested).

Imagine those numbers as two lines on a graph.

Since the age of 11, my all-consuming ambition has been for my test results to be numbers between those two lines. Always.

Every single test.

It’s a full-time job with no time off, no chance of retirement. Given that the numbers change on a minute-by-minute basis, according to what I’ve eaten or haven’t eaten, whether I’ve correctly or incorrectly calculated the amount of insulin I’ve taken, whether I’ve been very active or inactive, whether it’s a hot day or a cold day, whether I’m stressed out or chilled out, or simply because of that mystical factor of ‘just because’, – well, I’m constantly being chased by a whole series of numbers. It’s fine to be chased by the ‘good’ numbers – the ones between two lines – in fact, that’s quite fun. It’s ‘good’. It’s ‘right’.

The numbers that aren’t between those two lines, though, are the baddies. And I feel as if they’re going to get me.

But whether they’re high or low, they’re not just numbers. Those two lines aren’t arbitrary. Each number on the scale represents its own set of physical feelings.

Most of the time, I feel slightly unwell. Not awful, not ill, just slightly unwell. Bearable. Physically, it’s bearable.
But what does it all actually feel like?

High blood glucose levels
• Over about 10mmol/l, I feel sluggish and slow.
• Over about 12mmol/l, I feel tired and cross. If I’m at this level for a while, I’ll get pain in my lower back, because my kidneys are working harder to get rid of the excess glucose. I’ll feel thirsty. I’ll feel poorly. My breath will smell.
• If the number is higher, I’ll feel worse.
• Over about 18mmol/l, I’ll also feel slightly sick, and will want to curl up and go to sleep. Except I can’t curl up, because if I bend my legs I will get crippling cramp. All that sugar has made me slow and syrupy, and my blood feels just too sticky to move effectively.

Physically, then, if I’m too high, I’ll feel rubbish.

Low blood glucose levels
• At around 4.5mmol/l, I’ll begin to feel shaky.
• At around 4mmol/l, I’ll start to get hot. Very hot. And confused.
And I’ll be talking and talking without making much sense.
• Below 4mmol/l, I’ll be vague and vacant. My eyes won’t focus.
• Below 3mmol/l, I’ll be feeling – and appearing to others – very odd.
• Below 2mmol/l, it’ll get scary. I’ll be soaking wet and freezing cold.

Physically, then, if I’m too low, I’ll feel rubbish.

And if my blood glucose level is dropping fast, I might not even realise any of these things are happening.

I lose entire days to hypoglycaemia, low blood glucose. On a particularly ‘fun’ day, I’ll be a diabetes rollercoaster. If I’ve been low in the night, I’ll be stratospheric first thing. That’ll make me cross. I’ll sort that out with a corrective dose of insulin at breakfast time, calculated by me according to the ‘right’ criteria. But that might be too much, which means I’ll go low a couple of hours later. By which time I’ll be cross, and if I’m by this stage sick and tired of the situation, I’ll be impatient, and not want to wait to feel better (a process which takes 10-15 minutes or so). So I’ll eat more glucose. And more. Maybe then a biscuit, just to make sure. Or something else. And then I’ll kick myself for being high again afterwards. Again, cross. And then I’ll correct that with some more insulin. And then I might go low again, and – yes - get cross. Eventually I’ll probably just go to bed and hope that tomorrow will be better.
Tomorrow, though, will be its own rollercoaster. Because diabetes doesn’t ‘improve’. It’s not like a cold, which feels progressively better day after day until it’s gone. Every day, every single day, I feel like a beginner, a novice, a failure. I’m out of control with trying to be in control. It’s a nightmare.

Sorry, where was I? Oh yes:

It’s important to consider – for me to consider as well as for you to consider - my lack of ability, when I’m lower than I should be, to think rationally, to concentrate, and to make decisions. When I’m low, my brain doesn’t work properly. Thinking is not its main priority of function.

Consider this:
Before Jim’s recent operation, we were reading the pre-op assessment blurb from the hospital. This bit caught my eye:

‘If you have had a general anaesthetic or sedation, you should not sign legal documents for at least 24 hours.’

I realised something huge.
One can assume from the above that after general anaesthetic or sedation, one isn’t quite all ‘there’. Not quite compus mentis. Not competent to sign legal documents. Not ‘right in the head’.
I’m not ‘all there’ when my blood glucose levels are below that bottom line. I can’t think. I’m confused. But to you I might not look or seem any different, especially if you don’t know me well.

I probably won’t realise this, though. If you ask me to do something, commit to something, sign something, then the chances are I’ll be keen to do it. I’m a pleaser, and I like to help, but I might be making a decision when I’m not in full control of my brain. Yes, that sounds dramatic, but that’s the only way I can describe it.

Often, when I’m low, particularly if it’s an instance where I’ve ‘crashed’ very quickly, and although I will have awareness of not being right, I cannot be relied upon to make the right decisions and go through the right processes to fix the problem. If I’m away with the fairies, generally I’m more interested in the fairies than in finding a source of fast-acting carbohydrate.

Not only can I not make the decision to take the action required, I don’t have the capacity to make the decision to not make the decision. So I’ll just drift. The social and safety repercussions of such a scenario have the potential to haunt me for a lifetime. Some already do.

Want to hear about the psychological implications of all this? If the number’s not between those two lines on the graph, then I’m rubbish. By that I don’t mean that I physically feel rubbish (although that is often the case), but that I am rubbish.
And that I’ve got it wrong.
I’m an idiot.
It’s my fault.
I’m stupid.
I’m a failure.
And that I’ve broken my day. I might as well not go to work, not go out. Perhaps I’ll go back to bed, or eat a 1kg tin of Quality Street – after all, if the numbers are going to be ‘wrong’ anyway, I might as well make the most of it. Perhaps I’ll drive to Margate on a whim, without telling anybody. I’m unpredictable and I’m complicated. Who knows what I might do? I certainly don’t.
Too high? I feel rubbish both physically and psychologically.
I beat myself up about it. I’m cross. I hate myself for getting it wrong.

Too low? I feel rubbish both physically and psychologically.
I beat myself up about it. I’m cross. I hate myself for getting it wrong.

Do you see a pattern here? This is what it’s like.

And even when I’m not in the process of doing a test, or if I haven’t done one for an hour, or if I’m changing my plans for the day, or I’m drinking alcohol, or am full of adrenaline thanks to things going on around me, I’m always wondering where I am on the scale.
Am I ‘right’?
Am I low?
Am I high?
Am I just right but possibly dropping slowly?
Or dropping fast?
Or going high?
There is no escape. It is in my head all the time.

And for the sake of my long-term health (avoiding diabetes complications such as blindness, neuropathy, amputations, kidney failure) that’s absolutely the way it should be. It is, really.

Aiming for perfect control means that I’m more likely to be low than high. But whenever I’m low, I come across to myself and to others as completely bonkers. That’s not good for my social life, my work, or my confidence. Or indeed my safety.

I am told on a regular basis – often in fact by the very healthcare professionals who gave me the target of those two lines to stay between – that I’m too hard on myself, and that I should ease up. After all, a few numbers here and there that don’t fall between two lines are okay, surely?
Well, are they?

If you tell me to keep between two lines, then it is right to keep between two lines; ergo going out of that range is therefore wrong.

How does that compute, exactly?
‘You’ve got to be right, but actually, being right all of the time is wrong, so it’s okay to be wrong even though you need to be right’.
Eh?

I get so cross when I’m high. And when I’m low.

Sometimes, I’m just cross.

* * * * * * * * * * * *

Love Snapsy xxx

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Tanny35 said:

If I said I found living with the dreaded D easy I would be lying.
I have had it since I was 5 - and don't remember not being a diabetic. (Now 35).
I went through my teens not really caring and thinking 'it won't happen to me' I wanted to live a normal life like my friends and family did. I missed appointments for my DN I didn't really care.
Then I had my children. And realised I needed to try my best to control it. Being a single mum of two for many years until I met the lovely Steven was hard to balance work/family and trying to control the diabetes on top of it all. I tried so hard, I had spikes I had lows I felt like I was failing and fell in to depression over it all. But still trying so hard to control it all. And no one else could understand my frustrations. I get sick of injecting, I get sick of bg testing everyday 10/15 times a day and not getting the results I want. I get one day of amazing results and feel on top of the world and like this is easy to control, if I do what I did today the. Tomorrow will be the same - but no, I do the same routine eat the same foods and then 2 or 3 of not so good results. And I think to myself I don't get it? I ask my self all of the time what am I doing wrong, my DN nurse tells me I'm not doing anything wrong but lots of things can affect control. Stress, emotion, hormones and lots more.
Recently, I have hit some complications. I wonder if I had tried harder in my teens would I still have these complications. I sometimes blame myself for everything going wrong right now - but then I sit back and tell myself, it's not an easy condition to live with at all. We all try our best to control it the best we can. And joining this forum has helped me so much, I have learnt I am not the only person that has trouble with erratic BGs, I have realised I'm not the only one that has struggled on a daily basis to get tight control, I have learnt a lot on better ways to get tighter control. I have learnt We all get tempted by that big fat chocolate cake sat there staring us in the face, and we all give in to temptation from time to time.
I have sat and cried at times over the daily struggles of being a T1. But I Jane my meltdown, I then stand tall and brush myself down and tell myself - if I wasn't a D - I wouldn't have met some of the lovely people I have met because of it. I get scared about what the future holds for me and what complications I face in the future. But anyone that lives with diabetes is a true warrior, every single one of us - there is nothing thrown at us that we can't handle or don't somehow manage to get through.


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Jeztrob said:

@Snapsy - agree with all previous comments - so well written and exactly what I've felt over my time as a type 1.

I'm new to this forum lark so bear with me.

Type 1 - diagnosed in Oct 1968. I was 18 months old... So my lovely caring Mum took on board looking after me and my diabetes. What an awesome job she did I am still alive - despite my own ideas of what might seem to be a good idea at the time...!

So - what do I know about type 1? What's it like to live with?

I'm lucky - I'm a healthy 49 year old man, living a life of glee!

Cons:
I test three or four times a day - generally before meals and before bed.
I have to calculate carbs in my food - I've got better at it after the High Wycombe 'Insight' course 10 years ago.
I inject 1 unit for every 10grams of carbs.
I inject 24 units of Lanthus for overnights.
I test before I drive and every two hours into the journey.
I cannot drive a train or a public-service vehicle - always wanted to drive a train...

Pros:
I ski once a year with friends - I'd ski more if I could afford it!
I have an advanced motorcycle licence (November 2012) - although perhaps a mid-life crisis ?
I've (voluntarily) jumped out of an aircarft - with parachute - static line.
I've done one bungy jump - that's enough for me
I eat what I want and inject for the estimated carbs.
I drink - but never inject for the alcoholic drinks.
I have my own limited company.
I have a lovely wife.
I have a car.
I have an affection for the eating of cheese (no carbs, see?)

I lead a normal life - but I'm unsure what 'normal' is?

I know that there are far worse-off folk out there than me.

As for being different - I celebrate this! I've had to learn how - but I do it.

jeztrob

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prancer53 said:

I have had diabetes since the age of 8 which totals 54 years. I did the wee testing and glass and metal syringe bit and felt eternally grateful when blood testing and multiple injections became the norm because life became so much easier. I tend to always eat the same amount of cho for meals because it works better for me. I plan my days around diabetic requirements and usually find I can manage ok. Frankly I can't imagine life any other way now--if I was cured tomorrow I would still eat the same cho at mealtimes (maybe I'm kidding myself)!! I have always done what I wanted to do and never considered that I was unable to do anything because of diabetes. In short it has never stood in my way. When I was a child my mother sent me to ballet lessons "to keep the sugar down". I loved dancing and at the age of 16 auditioned for a London ballet school, was accepted and given a full grant by my local authority. For 3 years I did classes all day, every day, each 90 minutes long. I found I needed to cut my insulin dosage down dramatically whilst eating a lot more cho. At 19 I joined for the Italian Operetta Company and stayed there, as a dancer, for 2 years. I was offered a 3rd year in the company which I accepted but on a visit home I decided not to return. I then worked as a dancer and taught dancing. I married but we had only been married for 6 1/2 years when my husband had an accident and broke his neck after which he was in Stoke Mandeville hospital for 6 months. I used to stay away from home for work but after his accident I needed to drive many miles every day instead, as he couldn't be left on his own, as well as look after him. The life and daily management of tetraplegia is exceedingly complex and time consuming and there never seemed enough hours in the day. I used to worry about what an earth would happen if I had a nocturnal hypo because my husband was no longer able to get out of bed (I had to lift him into his wheelchair from bed and back from wheelchair to bed and also into my car) to get me some sugar. I often used to eat more than I needed before bed because it was the only thing I could do to ensure I didn't go hypo overnight). He did go back to work though and we both were working full time until I had children,, 7 years after his accident which is when I gave up work. I had the usual hypo problems with pregnancy and can remember getting home one night after a long drive and falling asleep. It turned out I was hypo so my husband rang the doctor (no paramedics then) but realised that because I was unconscious I wouldn't be able to answer the door to the doctor so hubby had to ring a neighbour and ask if he could pick my mother in law and deliver her to ours because she had a key so could let herself in and then let the doctor in!! No one had explained about the types of hypos that would occur in pregnancy and the doctor had told me to put my insulin up by a large amount. After that I always put my own insulin up throughout both pregnancies and devised a method of doing so which was safe for me but also kept my HBA1C at between 4 and 4.5. My first baby was born naturally weighing in at 7lbs and the 2nd (also without any intervention) was 6lbs 7 ozs which I was very pleased about because I was told I would have big babies!! I didn't return to work because it would have meant getting someone to look after my husband and a nanny for the 2 children. However when both children were at senior school, and I was 47, I went to University to study for a degree in Dance which was both very physical as well as academic.Three years later I graduated with an upper second class Batchelor of Arts degree. During my last year at Uni I auditioned at the Royal Academy of Dance in London to do a post graduate teaching course which would give me Qualified Teacher Status to teach up to GCSE and A level dance. I was accepted which meant daily train journeys into London and 3 placements at schools and colleges. I qualified at the end of that and have worked as a teacher ever since. Since my husband now employs his own carers I am also able to work on cruise ships during the school holidays providing activities for 8-12 year olds and teenagers (profile picture was taken in the Canaries during one of the cruises). This is also very physically active role with various sports and dance most days. Work starts between 9 & 10 am and finishes between 10pm & midnight. Husband has now retired, A few years ago he had an operation which gave him use of his hands once more so he cooks for me (he absolutely loves cooking) so I have a hot meal when I get home from work which he has prepared. My days are always well planned with regard to diabetes and I always take my own food to work so I always know exactly how much cho I am consuming. Like others I do get angry when BMs are not what they should be and make me feel like s**t but I just take corrective action and carry on. I have gone back onto pork insulin which works better for me (I found human insulin manufactured in lab was not giving me definitive hypo symptoms). After the birth of my second child I also became hypo thyroxic so take levothyroxine daily-- I do find that that can muck diabetes balance up somewhat. Life is not simple, no one seems to understand the vaguaries of diabetes management. I am so old now that GP thinks I am type 2 and tells me that if I eat sweet things my body will produce more insulin and I will become hypo--never quite know what I should say to that so just inwardly smile!!!! Have a morbid fear of doctors so try to see them as little as possible and absolutely hate diabetes check ups......but am compliant!! I tell people I have diabetes, when I get to know them or if D. comes up in conversation but they always seem to forget..........!!!!!!

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prancer53 said:

I have had diabetes since the age of 8 which totals 54 years. I did the wee testing and glass and metal syringe bit and felt eternally grateful when blood testing and multiple injections became the norm because life became so much easier. I tend to always eat the same amount of cho for meals because it works better for me. I plan my days around diabetic requirements and usually find I can manage ok. Frankly I can't imagine life any other way now--if I was cured tomorrow I would still eat the same cho at mealtimes (maybe I'm kidding myself)!! I have always done what I wanted to do and never considered that I was unable to do anything because of diabetes. In short it has never stood in my way. When I was a child my mother sent me to ballet lessons "to keep the sugar down". I loved dancing and at the age of 16 auditioned for a London ballet school, was accepted and given a full grant by my local authority. For 3 years I did classes all day, every day, each 90 minutes long. I found I needed to cut my insulin dosage down dramatically whilst eating a lot more cho. At 19 I joined for the Italian Operetta Company and stayed there, as a dancer, for 2 years. I was offered a 3rd year in the company which I accepted but on a visit home I decided not to return. I then worked as a dancer and taught dancing. I married but we had only been married for 6 1/2 years when my husband had an accident and broke his neck after which he was in Stoke Mandeville hospital for 6 months. I used to stay away from home for work but after his accident I needed to drive many miles every day instead, as he couldn't be left on his own, as well as look after him. The life and daily management of tetraplegia is exceedingly complex and time consuming and there never seemed enough hours in the day. I used to worry about what an earth would happen if I had a nocturnal hypo because my husband was no longer able to get out of bed (I had to lift him into his wheelchair from bed and back from wheelchair to bed and also into my car) to get me some sugar. I often used to eat more than I needed before bed because it was the only thing I could do to ensure I didn't go hypo overnight). He did go back to work though and we both were working full time until I had children,, 7 years after his accident which is when I gave up work. I had the usual hypo problems with pregnancy and can remember getting home one night after a long drive and falling asleep. It turned out I was hypo so my husband rang the doctor (no paramedics then) but realised that because I was unconscious I wouldn't be able to answer the door to the doctor so hubby had to ring a neighbour and ask if he could pick my mother in law and deliver her to ours because she had a key so could let herself in and then let the doctor in!! No one had explained about the types of hypos that would occur in pregnancy and the doctor had told me to put my insulin up by a large amount. After that I always put my own insulin up throughout both pregnancies and devised a method of doing so which was safe for me but also kept my HBA1C at between 4 and 4.5. My first baby was born naturally weighing in at 7lbs and the 2nd (also without any intervention) was 6lbs 7 ozs which I was very pleased about because I was told I would have big babies!! I didn't return to work because it would have meant getting someone to look after my husband and a nanny for the 2 children. However when both children were at senior school, and I was 47, I went to University to study for a degree in Dance which was both very physical as well as academic.Three years later I graduated with an upper second class Batchelor of Arts degree. During my last year at Uni I auditioned at the Royal Academy of Dance in London to do a post graduate teaching course which would give me Qualified Teacher Status to teach up to GCSE and A level dance. I was accepted which meant daily train journeys into London and 3 placements at schools and colleges. I qualified at the end of that and have worked as a teacher ever since. Since my husband now employs his own carers I am also able to work on cruise ships during the school holidays providing activities for 8-12 year olds and teenagers (profile picture was taken in the Canaries during one of the cruises). This is also very physically active role with various sports and dance most days. Work starts between 9 & 10 am and finishes between 10pm & midnight. Husband has now retired, A few years ago he had an operation which gave him use of his hands once more so he cooks for me (he absolutely loves cooking) so I have a hot meal when I get home from work which he has prepared. My days are always well planned with regard to diabetes and I always take my own food to work so I always know exactly how much cho I am consuming. Like others I do get angry when BMs are not what they should be and make me feel like s**t but I just take corrective action and carry on. I have gone back onto pork insulin which works better for me (I found human insulin manufactured in lab was not giving me definitive hypo symptoms). After the birth of my second child I also became hypo thyroxic so take levothyroxine daily-- I do find that that can muck diabetes balance up somewhat. Life is not simple, no one seems to understand the vaguaries of diabetes management. I am so old now that GP thinks I am type 2 and tells me that if I eat sweet things my body will produce more insulin and I will become hypo--never quite know what I should say to that so just inwardly smile!!!! Have a morbid fear of doctors so try to see them as little as possible and absolutely hate diabetes check ups......but am compliant!! I tell people I have diabetes, when I get to know them or if D. comes up in conversation but they always seem to forget..........!!!!!!

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Jeztrob said:

@Snapsy - agree with all previous comments - so well written and exactly what I've felt over my time as a type 1.

I'm new to this forum lark so bear with me.

Type 1 - diagnosed in Oct 1968. I was 18 months old... So my lovely caring Mum took on board looking after me and my diabetes. What an awesome job she did I am still alive - despite my own ideas of what might seem to be a good idea at the time...!

So - what do I know about type 1? What's it like to live with?

I'm lucky - I'm a healthy 49 year old man, living a life of glee!

Cons:
I test three or four times a day - generally before meals and before bed.
I have to calculate carbs in my food - I've got better at it after the High Wycombe 'Insight' course 10 years ago.
I inject 1 unit for every 10grams of carbs.
I inject 24 units of Lanthus for overnights.
I test before I drive and every two hours into the journey.
I cannot drive a train or a public-service vehicle - always wanted to drive a train...

Pros:
I ski once a year with friends - I'd ski more if I could afford it!
I have an advanced motorcycle licence (November 2012) - although perhaps a mid-life crisis ?
I've (voluntarily) jumped out of an aircarft - with parachute - static line.
I've done one bungy jump - that's enough for me
I eat what I want and inject for the estimated carbs.
I drink - but never inject for the alcoholic drinks.
I have my own limited company.
I have a lovely wife.
I have a car.
I have an affection for the eating of cheese (no carbs, see?)

I lead a normal life - but I'm unsure what 'normal' is?

I know that there are far worse-off folk out there than me.

As for being different - I celebrate this! I've had to learn how - but I do it.

jeztrob

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cathat23 said:

You are both amazing people and an example to others X

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