Diabetes Musings

Is Diabetes Normal?

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In my latest column for Diabetes Daily, I’m pondering over whether I consider myself ‘normal’ as someone living with diabetes.

Since the day of my diagnosis, the notion of diabetes being “normal” has been drummed into me. I can still remember my father reassuring me that although I would be stuck with diabetes forever, I would still live a completely normal life. “The treatments have come so far, son. There will definitely be a cure in your lifetime.”

I rejected this notion that diabetes made me different. I hated seeing campaigns and stories that shed a light on some of the consequences of diabetes. I wanted so badly to project an empowering, superhero-like image of diabetes to the world, even if there were highs and lows along the way.

You can check out the full column here.

Diabetes Before 11am.

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01:46 Frank stirs in his sleep. Glancing at the alarm clock, he reaches for his meter so that he can check his blood sugar. 10.1. He grabs his iPhone, opens the RapidCalc app and calculates a 2 unit correction to bring his blood sugar back down to 5.5. He reaches for his insulin pen, primes half a unit, then dials up another 2 units and sticks it into his arm. His diabuddies are starting to rub off on him…

07:21 Frank rouses once again. Morning light is streaming in from behind the closed vertical blinds. Feeling guilty that he slept over opportunities to follow up on that high blood sugar during the night, Frank reaches for his meter once again. He’s not feeling too hopeful. Blood sugar 11.9. Facepalm.

07:30 Frank opens the RapidCalc app on his iPhone, which reminds him that his 3 unit dose of Lantus insulin is overdue. It’s now been a week since Frank disconnected from his insulin pump, and he’s wondering whether it’s time to reconnect. While it’s been a great week, he’s really missing the customised basal rates and ease of correcting high blood sugars. Ah decisions, decisions.

07:43 After much deliberation over what to do, Frank ends up giving his 3 unit morning dose of Lantus. He opens up the RapidCalc app on his iPhone, and works out a five and a half unit dose of insulin. 2 units to cover his morning coffee. Double what he would normally give for 8g of carbohydrate, but necessary to cover morning insulin resistance that’s returned without his pump. The other three and a half units to bring his blood sugar back down to 5.5. Again, he primes half a unit and then injects five and a half units into his arm.

08:00 Frank finishes his morning coffee. Considering the high blood sugar, Frank decides against breakfast until his levels come down a little. Plus, he’s not feeling particularly hungry at this moment.

09:06 Too soon to test? Bugger it. Frank grabs a fresh test strip, sticks the test strip into his meter, pricks his finger with the lancing device and places blood on test strip. Blood sugar 9.4. Phew! Finally heading in the right direction.

10:00 Blood sugar 7.4. RapidCalc tells Frank he has 2 units of rapid acting insulin left to act. Should be okay.

10:34 Blood sugar 6.3. 1.2 units of rapid acting insulin left to act. Stomach rumbles. Oh – that’s right! Frank remembers that he hasn’t eaten breakfast yet. He heads into the kitchen, and opens and closes the fridge and cupboards. A slice of toast? Wait! What about the leftover croissants in his bag from Friday?

10:43 Opens the RapidCalc app on his iPhone, and calculates a 4 unit dose of insulin to cover the croissants. Primes half a unit of insulin from his pen, and then dials up 4 units. Sticks needle into his arm, but ouch! Blunt needle. Frank toughens up and sticks it into his arm once again, injecting the 4 units and carefully holding it there so that all of the insulin goes in.

10:50 With the criossants heating up in the microwave, Frank decides that he needs another coffee. It’s been one of those days. He heads back to his insulin pen and swaps out the blunt needle for a new one. Primes half a unit, dials up another unit to cover the coffee and injects it into his arm.

11:05 Frank is sitting in front of his computer, and satisfactory pre bolus time has elapsed. Frank decides that he needs to be a bit more disciplined with his pre bolusing to avoid stubborn high blood sugars like last night’s, and sticking with injections for another week will probably help him with that.

11:10 Frank decides he had better start eating those croissants before he goes low.

11.25 Frank thinks that this would make for the most boring blog post ever, and then decides that writing it in third person might make it a little less boring.

So many diabetes decisions before 11am! Time for a drink yet?

What Does Diabetes FEEL Like?

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It feels incredibly permanent. It’s only been with me for the past seven 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 also 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.

A Letter to My Newly Diagnosed Self

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Dear Frank,

If you’re reading this, then I can only assume that you’re coming to terms with a new diabetes diagnosis.

I know that right now, you’re probably just happy to be feeling well again. You’re reluctant to show any visible signs of your condition, convinced that diabetes hasn’t changed you. But it has.

Diabetes does make you different, and that’s not necessarily a bad thing. The sooner you come to accept this, the easier it will be for you to manage both physically and mentally. Speaking of, did I mention just how much of a physical and mental effort diabetes can be? Don’t forget to give yourself some credit for this when you’re having a tough day.

This is your baby. The decisions you make around managing your diabetes are yours and yours alone. Don’t ever feel guilty for them. How much you decide to involve others in your diabetes and management decisions is up to you. That being said, don’t be afraid to lean on those around you. They will more than likely surprise you. You will feel far less isolated and much better supported.

This is about you, and you alone. People you speak with will want to jump in and give you their two cents worth. Ignore it. What your great aunt’s-brother’s-second cousin did to manage their diabetes certainly won’t hold any relevance to you. You’ll likely look at other people with diabetes and try to draw comparisons to what they’re doing or how they’re managing. It’s not worth it. Everyone is different. You’re on your own unique journey, and the way in which you manage your diabetes is completely up to you.

Don’t be afraid of the internet. You’ll find endless amounts of practical information here that you won’t necessarily receive from your doctor. Best of all, the majority of it comes from the community, for the community.

The internet is also a great place for peer support. There are plenty of friendly folk from all over the world online who are in, or have been in your shoes. They are accessible day and night. Best of all, you’ll get to experience this sense of community that will help you not to feel so isolated or alone in this.

I know that connecting to other people with diabetes in person is probably the last thing that you want to do right now, but let me tell you that it is just so worth it. There is nothing more uplifting than having a tribe of people who you can turn to when diabetes doesn’t play nicely. Or hearing the words “me too.”

Speak up in front of your healthcare professionals. Your diabetes team are busy people, and they will likely be pressed for time. Make it clear what you want from them. Use them to get what you need to live the best life you can. If they won’t support you, find a new team that will.

Everything and anything affects diabetes. Food. Activity levels. Stress. Hormones. Routine. Even sleep! It’s impossible to achieve perfection. You can have days where you feel you’ve done everything by the book, where you’ve done exactly the same thing you did yesterday, and still receive a completely wild result. Don’t beat yourself up over it. You can only do the best you can, while trying to live your life. Diabetes is 100% something that you fit into your life, and not the other way around.

You will have bad days. You will slip up. You will get burned out. You will go through a rollercoaster of emotions. I’d be surprised if you didn’t! It’s part and parcel of living with the condition, day in and day out. But you will get over it. You will come out the other end stronger, and more resilient.

Your biggest assets in the long term management of this condition are time and experience. With time and experience, you learn. You are always learning!

Diabetes does indeed make you different, but I can honestly say that it won’t stop you from living your life and achieving what you’d like to achieve.

With every passing day, you will be a little wiser and better equipped to live with this condition.

 

 

 

 

 

 

 

 

 

Diabetes Daily are running a series of ‘dear diagnosis’ letters during November. If you have your own letter that you would like to share, e-mail editor@diabetesdaily.com.

Relentlessness.

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There are days where I find myself exhaling loudly out of exhaustion. My alarm wakes me for work at 6.30am, while I want nothing more than to close my eyes and go back to sleep. I find myself unable to muster any enthusiasm for the new day ahead of me, nor for the people around me. I find myself walking around with a long face, and an expression that will put a damper on everything and everyone around me. There are days where I feel like coffee, toast and swear words are the bane of my existence. Then, there’s the inevitable feeling of limping toward the finish line on a Friday afternoon.

Over the years, I’ve told myself that I was burned out. Or that I wasn’t eating the right kinds of foods. That I was overworked, and trying to juggle too many different things. I wondered if it was the exhausting nature of rollercoaster blood glucose levels. Or the mixed bag of emotions that came from dealing with an unpredictable condition that was downright isolating.

Time has gone by, however, and I think it’s safe to say that I’ve addressed each of these issues to the best of my ability. The variability in my glucose levels are far less significant than they once were. I am more connected, supported and engaged in my management. I have a far better understanding of a condition that even at the best of times makes no sense. I am far more conscious of taking time out for myself and not burning out.

But I’d be lying if I said that those feelings don’t linger, like flames from a fire that simply will not go out. There’s only one rational explanation that I keep coming back to.

Diabetes.

Diabetes is relentless. The physical and mental effort required to keep those flames at bay is huge. Throw in a full time job, freelance writing, friends, family and time out for myself, all while working towards financial independence, a career and other life goals, and it’s no surprise that at times I feel like I’m only further fanning those flames.

Diabetes is no easy feat.

When I look on in envy at the person with a spring in their step while I’m limping it toward the finish line of a Friday afternoon after a challenging week, I remind myself that most people around me don’t have to deal with the relentless diabetes demands that I do.