The Truth About Living with Type 1 Diabetes

Imagine you’re a tightrope walker, and you have one hand stretched out, gripping a single teaspoon of sugar. This little teaspoon represents the amount of sugar that is dissolved in the blood in the body at any one time. Now imagine that grains of sugar are falling from the sky – and the aim of the game is to keep the amount of sugar on that teaspoon as close to level as possible. Any decision to consume carbohydrates (bread, rice, pasta, root vegetables (beetroot, parsnips, carrots, potatoes) cakes, biscuits, breakfast cereals, crisps, chips, sauce, milk, yoghurt, fruit, fruit juice, soft drinks, etc) has the effect of hailstorms of sugar cubes falling from the sky and crashing into your spoon. Your spoon is overflowing but the amount of sugar on that spoon can only be reduced with an injection of insulin, which you must calculate with a ratio that depends on your initial blood sugar level, body weight, sensitivity to insulin and sensitivity to carbohydrates. Every injection enables you to shake that teaspoon a little, but only slightly after 20 minutes after injecting, and not fully until 2 hours after. By then, your teaspoon may still be overflowing, or maybe now you’ve miscalculated and there are only a few granules left on your spoon. You begin to shake and wobble your spoon under the grains that continue to fall from the sky, trying desperately to replenish your spoon to its correct level. While all of this is happening, the audience at the circus are throwing inflatable balloons at you. To the audience, they’re balls of air. But to you, they’re full of stress, adrenaline, caffeine, alcohol, dehydration, illness, weather, insulin, medicine, exercise, sleep, heat and hormones; they’re full of all the things that effect sugar levels. To the audience, the balls are harmless. But to you, every single one knocks you and causes you to either lose some of the granules from your spoon or to catch more and overspill. Every step you take affects your immediate or long term survival. Every single moment of every single day.

That’s the core of what Type 1 Diabetes is. Sure, it’s about living with a pancreas that doesn’t work – but it’s about so much more than that. We prick our fingers over 8 times a day and inject ourselves several more times, but you couldn’t pick us out of a line up because we don’t look sick. Having an auto-immune condition means that we live in a body that waged a war against itself, and there was absolutely nothing we could do about it. This is why Type 1 Diabetes is less about what you can see and more about what you can’t.

Living with Type 1 is about living with the burden of trying to manage a disease which is so insidious and so unrelenting that it makes hard work out of staying alive. No two days are the same with diabetes. Hell, no two meals are the same with diabetes. We can do the same thing every single day but we will always get different results. We’re always guessing, always fighting – and there is the constant feeling like nobody notices. But why would you? How would you know that the words I’m mumbling are jumbled because my brain is starved of the glucose it needs to function properly? How could you know that the little orange box I keep in my hand bag contains an injection that could save my life? This isn’t a ‘poor me’ story. It’s the reality of living life with an illness that could turn any day into a medical emergency, and raising awareness of that.

Living with Type 1 diabetes gives you two choices: insulin or death. That’s it. No amount of exercise, healthy eating, or pills will ever make it go away. Can you think of any illness that allows the affected (or ‘sufferer’ as they like to say) to choose their own amount of medication? Sounds crazy, right? But that’s what Type 1 Diabetics do several times a day. We are our own drug givers – we self-medicate – we decide how much and when… and we do this with an injection of a hormone that, whilst essential in keeping us alive, also has the potential to kill us every time we inject. Every. Single. Time.

Living with Type 1 is about not being able to remember what it’s like to wake up in the morning and not immediately reach for my testing kit. It’s about not remembering what it’s like to eat without calculating the number of units I need to inject for my meal or snack.

Living with Type 1 is about enduring the feeling of having hypoglycemic (hypo) symptoms. Me saying ‘I’m low’ means there is a deficiency of glucose in my bloodstream. It means my brain is being starved of the glucose it needs to function, which I need to replace, fast. Without glucose, hypoglycemia may become severe and result in accidents, injuries, coma or death… and by ‘may’ I mean, all it takes is a few extra clicks on my insulin pen – incorrectly estimating a dosage for a meal and then missing the hypo symptoms. It’s about the way a hypo hits differently each time. It’s the feeling of the shakiness when I’m unable to carry out normal tasks, the feeling of nervousness and anxiety, the sweats that wash over and through me and my work clothes. It’s the feeling of irritability, impatience, anger, stubbornness, sadness and confusion, without wanting to be any of those things. It’s the feeling of the rapid heart beat through my chest, lightheadedness and dizziness that makes me question my ability to even stand. It’s the feeling of sleepiness, hunger, nausea and blurred vision. It’s the weird tingling and numbness at the end of my tongue. It’s the headaches, the fatigue and the weakness. It’s the lack of co-ordination. It’s the feeling of frustration at sensing any number of these symptoms at any one time and being physically impaired by my own damn body. It’s the feeling that I am inadequate. It’s the feeling of humiliation as my testing kit falls to the floor because my hands are shaking too hard to hold it still enough to get a reading. And then it’s about the aftermath: the cold and clammy skin from the remnants of sweat, the feeling of exhaustion.

Living with Type 1 is about living a life that is reliant on medication from a pharmacy, just to stay alive. One time at work, I was hungry and my self-control faltered. I had a bunch of carbs and injected my insulin, but it wasn’t enough. Not only did my blood sugar skyrocket, but I’d ran out of insulin. Fortunately for me, the pharmacy that held my prescription was a 5 minute walk up a hill. I stood at the desk while they filled my prescription, biting my nails and blinking hard trying not to cry.

Living with Type 1 is about the occasions I’ve been at work – convinced my shift is going to end in an ambulance because I’m struggling to keep my levels in a safe range, despite consuming sugar. It’s about the multiple occasions I’ve calmly reminded my co-workers where my emergency Glucogen pen is and continued to work, not telling them I’m scared I might drop to the floor at any second, because I don’t look sick, remember?

It’s about the time I lagged behind others during the jog back from interval sessions, 2 miles away off campus, in the cold, dark evening on my own, with my blood sugar plummeting and my thoughts racing – was I visible to traffic if I collapsed? Should I run closer to the road? Would they realise I was diabetic? Would they save me?

It’s about the immediate horror and agitation when I realise I don’t have my blood sugar kit with me. What if I’m high and damaging my organs? What if I’m low and don’t feel it? What if I pass out?

It’s about the terrifying lows. Like the time I started to black out at the coffee machine, just as the sugar I’d consumed kicked in. Or the time I woke up in the night and went to the bathroom before I fell to my knees because I was so low that I couldn’t walk.

It’s about the occasions I seem rude because I’m struggling to string words together, standing there quietly confused and appearing to ignore you because my blood sugar is low and my brain can’t get the glucose it needs to function properly. 

It’s about the times I eat dinner in a restaurant and realise I don’t have enough insulin for the meal I just ordered, or ate, and have to return home as soon as possible.

It’s about the time I was admitted to hospital and hooked up to a Glucose IV drip because I needed fluids but the nurse didn’t understand that this could send me into a coma.

It’s about the nights I prop myself up in bed with the light on to stop myself from falling asleep, because my levels have been unstable and if I sleep, I might not wake up.

It’s about all the times I set alarms at hourly intervals during the night to check I’m still alive.

It’s about the nights I go to sleep feeling fine, but waking up drenched in sweat after suffering a hypo.

It’s about the mornings after the nights like those when I wake up feeling like I’ve been hit by a bus, and having to go to work anyway.

It’s about the bad days when the only time I leave my bed is to go to the bathroom.

It’s about hearing all the natural remedies and friendly suggestions people believe will help cure you, whilst trying to explain that my illness has no cure.

It’s about the grief suffered shortly after diagnosis, of being faced with a life long, chronic illness, but getting on with living anyway.

It’s about living with the thoughts of what might happen to me in the form of complications in the future, without losing the hope that they won’t.

It’s about living in a body that is a little more fragile than it used to be, but also stronger in ways I never knew possible.

Living with Type 1 Diabetes is about fighting for my health every moment of every day. It’s about making it to the end of that tight rope at the end of the day – teaspoon in hand. It’s about closing my eyes and falling asleep, only to wake up in the morning and having the strength to do it all over again.

Thriller in the Chiller: Day 2

‘Never give up and never be afraid of failure because otherwise you box yourself in and you limit yourself…You should be hungry to make your mark and you should be hungry to be seen and to be heard to have an effect out there. You have to think OUTside the box. Don’t be afraid to fail.’ (Arnold SCHWARZENEGGER)

Today we jogged, sprinted, lunged, squatted, sweated and panted. And then I realised that was only the warm-up.

Half of training was a fairly brutal 12 minute Tabata workout – 4 minutes of squats (20 seconds of exercise, 10 seconds of rest), 4 minutes of push-ups, followed by 4 minutes of sit-ups. The aim was to fit in as many reps of each exercise as possible, and to remember the total number for future exercises. Tabata workouts are great for improving  your aerobic capacity, anaerobic capacity, V02 max (the amount of oxygen your body is capable of utilising in one minute) and your resting metabolic rate (the minimal rate of energy expenditure at rest).

The other half of training was focused on footwork – and the trainers had us bouncing on the balls of our feet with our hands by our cheeks to get used to the movement in the ring. It felt (and looked!) very odd but it was great to learn something new by great trainers.

Bring on day 3!

Thriller vs. Diabetes

Woke up again higher than I’d prefer – 6.6, but because the exercises were less intensive than the beep test sprints, my BG only raised to 8.1 after class. I left it 2 hours after exercise before taking insulin (at which stage I’d only fallen to 6.8). Hopefully following training days won’t spike me as high as day 1 either!

There is nothing as powerful as a changed mind.

You can change your insulin, you can increase your basal, you can bolus more for more food – but it you don’t decrease your carbs, the same experience will perpetuate itself over and over again, because while everything outwardly changed, nothing inwardly changed. You still have a pancreas that doesn’t work. You’re still on the roller coaster ride of diabetes.

If you want a long and healthy life free from diabetic complications; if you want to change yourself; if you want to acquire normal blood sugar levels; if you want hypers to be rare if you want hypos to be even rarer, changing your behaviours, changing your eating habits is a must – it’s challenging. It’s hard. It’s almost overwhelming to begin with. But it’s necessary.

Most diabetics go through life never discovering the benefit of a low carbohydrate diet. Most diabetics never achieve normal blood sugar levels. The only thing that’s going to get you a normal, non-diabetic blood sugar level, my friend, in this year, or any other…is to step up. It’s to rise to the challenge. It’s to discover what you’re capable of, and to feel that incredible power of pushing through the carbohydrate addition and release your fat burning ability.

That’s what this game’s all about.
When you can step out of the known and into the unknown. When you can step into your fears and continue to push yourself on. Something happens for you.

When you look at a diabetic who has normal blood sugars, and you think ‘Wow. That’s amazing. I wish I could have that.’ You’ve gotta dig underneath and you’ve gotta remember something: people are rewarded in public for what they’ve practiced for hours, days, weeks, months and years in private.

If you don’t develop the courage, to do that which has been given you to do, and you spend a lot of time going around trying to convince other people that low carb is good, and trying to get their approval, what will happen is… that you will lose your nerve. And other people will convince you that what you’re doing doesn’t have any value, and you’ll give up on your dream.

How much time do you have left?
How much time do you have left?
When you start to think about that, we don’t know!
Most of us don’t use the stuff that we have brought into the universe. Stop wasting valuable time.

If you want normal blood sugars, you have got to be relentless.
You’ve got to learn how to become resourceful.
You’ve got to learn how to become creative.
The power to hold on in spite of everything, the power to endure – this is the winner’s quality: the hunger, the ability to face defeat from diabetes again and again, without giving up!
This is a winner’s quality.
What this power is, I cannot say.
All I know is that it exists, and it becomes available only when a man or woman is in that state of mind in which he or she knows that they want normal, stable, non-diabetic blood sugars. And they are fully determined not to quit until they achieve them.

There is greatness in you.
And you’ve got to learn how to tune out the critics outside and the critic inside.

I’m gonna harness my will.
And I’m not gonna let anything stop me.
I deserve this.
I deserve normal blood sugars.
I deserve to be healthy.

Most people give up on themselves easily.
They eat carbs because it’s all they’ve ever known. They eat carbs because they’re told to, by people who don’t have diabetes, or know the harm that eating them causes.
But you know that the human spirit is powerful?
It’s hard to kill the human spirit.

You are unstoppable. Live your life with passion, with some drive. Most of us go through life with our brakes on, holding back. Decide that you’re going to push yourself. You’ve got to focus on you. And you convince you, as you sell yourself every day, every day, every day. You will begin to see a difference in the things that you’re doing. Selling yourself on the ability to perform a job, to achieve a certain objective. Telling yourself every day ‘Here I go again. And I’ve got what it takes to live a long and healthy life, free from the risk of diabetic complications. This is my life, my day, and nothing out here is going to stop me.’