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.

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13 thoughts on “The Truth About Living with Type 1 Diabetes

  1. Rick Phillips says:

    I very much enjoyed your blog this evening. Living with type 1 is also about living and that beats the alternative.

    This item has been referred to the TUDiabetes Blog page for the week of October 31, 2016

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  2. Beverly says:

    Wow! I have never read words that so accurately describe a day in my life. I could relate to each and every example that was given. Thank you for this – the tightrope and the spoon will now become an analogy that I use when trying to describe how much goes into having a good day. I love the shot of your warrior’s belly – I’ve considered having a target, mandella or some kind of grid tattooed on mine to help me remember where I injected last. Sending you wishes for many good days and health.

    Liked by 1 person

  3. Dylan Thompson says:

    This was beautiful, and I personally felt every word. It does, in fact, seem that misery loves company. In absolutely no way do I celebrate your pain. However, it does my soul good to know I am not alone in this fight. Thank you.

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  4. jpavone says:

    I really needed to read this. My younger brother was diagnosed with Type 1 diabetes last summer and it has been incredibly difficult for me to try to understand what he is going through. Being away at college, I hardly know what he endures on a day to day basis because I’m not there with him. I really needed to understand what he goes through, so thank you.

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  5. Lynnanne says:

    Awesome post! My youngest daughter has had Type 1 for 10 years now. This post articulates so well what we often can’t explain to others!

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  6. Katherine Schlenker says:

    Crying… it’s been 16 years since my daughter was diagnosed. Our family has lived a very full life, but we are not really living it. This post tells the reality that my daughter lives and I DON’T. She is great and has always done her best to live as if she was ok. She suffers and we all just keep propping her up and keep going as if the emergency is over but it’s not. She has always done everything she wanted to do no matter what. Her resume is amazing. Black belt in karate, FFA president and Vice President, FFA convention 3 times, FFA American degree, Showing brown Swiss dairy cattle at county and state fairs which she had raised herself. Wonderful grades in high school, finished college at Virginia Tech with a Masters degree (9 hours from our home). Has had three wonderful career positions with major companies in Ag Business. Has traveled with friends cross country twice and has seen most of the US National Parks. She has done more than I could ever hope to do. All while juggling diabetes. Thanks to all of the wonderful people in her life who love her. She was married in June to a wonderful guy who for some reason can handle all of this. The next step is the most difficult to think about, the decision to have children. They want a family but does she want to take the chance that her children will have to live with all that diabetes brings. I don’t even know how to advise her as I am not the one who lives it.

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    • Christopher Stone says:

      hi iv had diabetes for 30 years and have had a wonderful family to support me I also have a beautiful wife who has seen me through the worst period of my diabetes related life and we had to make the big decision about having kids and I’m so happy that we decided to as they are healthy and happy and make the world a much brighter place.
      my advice would be go for it have kids.it’s only a small chance of them getting it and even a life with diabetes is better than not having any life at all. I hope this doesn’t offend anyone and if it dose remember it’s just one man’s oppinion .

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  7. Christie Phillips says:

    Thank you so much for writing this. As a mum of a 3 year old daughter with Type 1 (diagnosed at 14 months), I struggle to understand just how much it affects her little body and moods. At least the scariness of D is on me for now. Hugs.

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  8. Rebecca Bender says:

    Thanks for sharing in words that are so well written. My heart is with you and I feel like there is world out that there has no idea what life is like for us. This writing is full of truth and yet still interesting to read. Word pictures give others a since of us..

    Like

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