What It Feels Like to Live With Diabetes

We’re almost in the middle of diabetes month, and we’re supposed to be raising awareness of diabetes, so today I’m pulling this very awareness-ey post out of the archives.

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It feels incredibly permanent. It’s only been with me for the past eight and a half years, and yet I struggle to remember a life without it.

It feels incredibly monotonous. Checking my blood sugar. Weighing my lunch on the kitchen scales. Looking up carb counts on my iPhone. Pulling out my pump to give an insulin dose. Checking my blood sugar again. Pulling out my pump to glance at the insulin on board feature. Deliberating over a correction dose. It’s pretty hard to muster the enthusiasm to do the same thing over and over each day.

It feels extremely isolating. The twinges of jealousy that surface as I watch others my age who can live like there’s no tomorrow. Wondering if anyone around me can truly comprehend the burden of my condition.

It feels incredibly frustrating. One day can be perfect, while the next can be a complete trainwreck. I can do exactly the same thing that I did yesterday, and get a completely different result today. I can make a decision that makes complete sense on paper, and then stare at the result in disbelief.

It feels utterly exhausting. The physical and mental effort that this condition demands is huge, that there are days where I am left struggling to give my 100% to everything else.

It feels incredibly worrisome. Pushing thoughts to the back of my mind about what my future will look like. Wondering if I am doing enough today to ensure that I will live a healthy and complication free life.

It feels painful. Stabbing the tips of my already blistered fingers. Sticking a gigantic needle into my stomach to insert a new infusion site. Feeling the sting of insulin going into an overused area of skin tissue.

It feels ever so emotional. The journey from high to low and everything inbetween can be an emotional rollercoaster. It’s so hard not to let the numbers get to me.

It feels immensely guilt ridden. Pangs of guilt accompany every single decision I make that has an undesired outcome on my blood sugar.

It feels extremely disruptive. It doesn’t care if I’m trying to work, if I’m trying to sleep, or if I’m trying to chill on the weekend.

It feels incredibly close. Finding my tribe, who I can turn to when I’m having a shit day. Finding folks in the Diabetes Online Community, who I can reach out to at 3 in the morning while I’m waiting out a low blood sugar. Being able to hear the two most powerful words in the english language. ‘Me too.’ Making my world feel that much smaller.

It feels experienced. Every passing day arms me with that little bit more knowledge, that leaves me better equipped to deal with this condition. Like finding another piece in an incredibly difficult jigsaw puzzle.

It feels confident. Confidence to speak up for what I want from my healthcare professionals. Being my own advocate. Sharing what I feel passionate about. Finding my comfort zone when my condition has thrust me far from it.

It feels grateful. Grateful that thanks to modern medicine, tools and technology, my life has a far brighter outlook than it did a century ago.

It feels lucky. Lucky that I live in a country where insulin, test strips, pump consumables and healthcare won’t send me broke. That I have a supportive family and a job which affords me these privileges.

It feels incredibly heartbreaking. Heartbreaking that in this day and age, people are still can’t access the basic tools and healthcare that they need to survive. Heartbreaking that these tools of survival are tied to income and extremely costly insurance premiums. Heartbreaking that without the subsidies I am afforded, these tools are extremely costly. Heartbreaking that people are still dying in some parts of the world because they cannot get their hands on the luxuries that I take for granted.

In an Ideal World

I originally wrote this post some time ago, but the words couldn’t ring truer, particularly when I think about my own blood sugars this weekend.

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In an ideal world, my meter would produce a magical 5.5 while I’m fasting.

In an ideal world, I could select any spot on my stomach for the placement of an infusion site.

In an ideal world, my blood sugars would respond to potatoes in exactly the same fashion as yoghurt.

In an ideal world, I could fall asleep knowing that my blood sugar will stay stable all through the night.

In an ideal world, I could go for a walk and not worry about my blood sugar dropping.

In an ideal world, I wouldn’t have to worry about rage bolusing every time I’m sick or I’m stressed.

In an ideal world, my levels would steadily rise and then fall back into line after I eat.

In an ideal world, my blood sugar wouldn’t be affected by protein or fat.

In an ideal world, I would be able to feel every oncoming hypo.

In an ideal world, my basal insulin needs would be identical through each hour of the day and the night.

In an ideal world, a diabetes healthcare professional would spend a whole day with me if need be.

In an ideal world, I would have been encouraged to consider technology by my diabetes team.

In an ideal world, everyone who wishes to use an insulin pump would have one.

In an ideal world, a Continuous Glucose Monitor would be subsidised for those who want to use one.

In an ideal world, insulin wouldn’t be so fucking expensive.

In an ideal world, insulin wouldn’t keep getting more fucking expensive.

In an ideal world, access to medication and basic healthcare wouldn’t be determined by my location or income.

In an ideal world, diabetes and pharmaceutical companies would have the best interests of people living with diabetes at heart.

In an ideal world, I would be excited about the artificial pancreas systems hitting the market next year.

In an ideal world, nobody would feel isolated or different for having diabetes.

In an ideal world, I would have perfect management of my diabetes.