The Advice I Would Give to My Newly Diagnosed Self

I’ve lived with type 1 diabetes for eight and a half years. Depending on where you sit on that spectrum, that will either feel like a remarkable feat or nothing more than a drop in the ocean.

I can remember the isolation I felt when I was diagnosed. I can remember locking myself in my room, and burying my face in my hands when I had the umpteenth hypo of the day. Or dropping the f bomb and smashing my fists into the wall when I woke up to a BG of 20.

Those things still do occasionally happen. Only the other night, I had been rage bolusing insulin all evening and was getting extremely agitated with every swipe of my FreeStyle Libre reader. When bedtime rolled around and my BG of 14 still hadn’t budged, I swapped out my insulin and changed my site, furious that I wouldn’t make it to bed on time.

But, I’ve come a long way in those eight and a half years. The one thing that stands out to me most in my journey, is that I have never stopped learning. There are so many things that I wish I had figured out sooner. So many tricks of the trade that mean those frustrating, sweary, agitating blood sugar related things don’t happen so often anymore.

If I could go back and give some advice to my newly diagnosed self, these are some of the things I would say.

Get online, and take an interest in diabetes.

Take your diabetes gear with you every time you leave the house.

Food is fuel for your body.

Focus on eating fresh food, and meals that you’ve prepared yourself.

Commit to basal testing, and carbohydrate counting.

Eating when your blood sugar is high, will only send it higher.

Diabetes will affect you emotionally, just as much as it will physically.

Diabetes management is a marathon, and not a sprint.

You can read my advice in full in my special column for World Diabetes Day over at Diabetes Daily. I’m extremely proud of it.

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.