Diabetes

Giving Up Lent, For Lent

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Of the many things I have attempted to give up for Lent over the years, I can only remember one that I actually saw through until Easter. I managed to give up my favourite computer game, Captain Comic, for a whole forty days back in primary school. I fondly remember playing it on our very first computer in the ’90s, that a family from school salvaged for us from a rubbish heap.

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In recent years, my motivation to keep doing Lent is diabetes. Even though I’m an adult and I’m no longer forced to do Lent, I still like the idea of using it to change my “bad diabetes” habits. Give up chocolate, give up junk food, exercise, have perfect blood sugar levels and perhaps stick with it after Lent…

The reality is that I’ve failed almost every time. I’ll end up feeling guilty and unhealthy for breaking. I’ll end up feeling trapped by my diabetes, with no willpower to control my bad habits. Even when I have made it a fair way in, I’ve ended up subsiding and binge eating towards the end.

But I’m only human, and I shouldn’t have to apologise for my bad habits. Besides, Lent doesn’t just last forty days for me. I already give up a lot for my diabetes, throughout the whole entire year.

Money, for starters. Insulin, test strips, needles and even jellybeans aren’t cheap. In May I’ll be switching to an Insulin Pump, which only costs around $8,000. Thank goodness for private health insurance! Even though my expenses are heavily subsidised by the Australian government through the NDSS, diabetes is still not cheap and I can think of a million other things that I would rather put that money towards.

Food. I have to think carefully about every item of food that I put into my mouth. Carb content? Weight? Is it a pre-bolus food? Or does it need a delayed bolus? Feelings of satisfaction after a nice dinner are often replaced with feelings of guilt and anger if the follow up result is not ideal. I’ll often have to forego tempting foods for which the spike is just not worth it.

Thoughts. Diabetes is one of the first things I think about when I wake up in the morning. I’m constantly plagued with thoughts of where my blood sugar is sitting after a meal. Did I give too much insulin? Not enough insulin? Did I forget to bolus for something? Then at bedtime, I’m usually playing guessing games as to where my levels are headed through the night.

Confidence. It’s hard not to judge myself by my diabetes, when it’s on my mind all the time. It’s hard to feel good about myself when my diabetes isn’t going so great. As my diabetes gets older, I find myself thinking more and more about my future. About how well I am managing my diabetes, and whether I am “healthy” enough to withstand complications.

Time. Finger pricks, insulin injections, treating a high, correcting a low and just thinking about it all! Diabetes doesn’t stay on the desk at five o’clock on a Friday. There is no annual leave, sick days, personal leave or rostered days off. Finding the time to do ALL of this on top of life is a miracle sometimes.

Lent always makes me feel bad about myself, and I know that I’ll end up failing miserably. So this year, I’ve decided to give up Lent, for Lent. I’ll still be working towards some of my diabetes goals in the lead up to Pump Day in May.

But I certainly won’t be shying away from a slice of this Macaroon Cake I made last week. Happy Monday!

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Selfish Perspectives

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I feel like I’ve been pretty selfish this week.

On Monday I shouted iced coffees for my team at work on a 42 degree day. I drove my air conditioned car to diabetes clinic, paid an overpriced fee to park undercover and complained about it. I made the decision to switch to an expensive insulin pump in May, even though I can do the same thing with injections. I whinged about an endo who wasn’t supportive enough, despite the fact that I had access to a diabetes specialist and paid absolutely nothing to see him.

On Tuesday I bought croissants to have for lunch the next day, even though I had bread in the cupboard at home. I bought my favourite coffee capsules that were on sale, despite the fact that I already had a stockpile in my locker and instant coffee in the kitchen that would do the same job in satisfying my caffeine fix. I also went out dinner with my family for Mum’s birthday, despite the fact that the cupboards and fridges at home are never empty.

On Wednesday I wanted to make a cake for my Mum’s actual birthday, despite the fact that we’d already celebrated with a fancy dinner. I drove my air conditioned car to the supermarket that is literally a stone’s throw from my house, despite the fact that I could have walked there. I bought cooking chocolate, almonds and whipping cream, even though I could have easily made a simpler cake with the ingredients on hand at home.

On Thursday I asked my team mates if they wanted to pitch in and play lotto for the $20 million this Saturday, even though I already have enough money to live comfortably. I walked over to the coffee shop at lunch time for an iced coffee, even though I had coffee capsules and instant coffee at work. I apologised for the gift card I gave to my Mum for her birthday because it wasn’t thoughtful enough, despite the fact that I’d spent a generous amount of money on it.

Which brings me to Friday. More than likely, I’m going to buy an overpriced coffee on the way to work this morning. I’ll be too lazy to make my lunch at home, and I’ll just buy junk food that I don’t really need to be eating. I’ll probably withdraw some money from the ATM on the way out for the weekend, even though I have bank cards in my wallet that do the same thing.

And you’re probably wondering what the point of this rambly post is, right?

I’ve been reflecting on all of this today, and it really got me to thinking about Spare a Rose and my own donation to Life For a Child a week ago. When I think of the disadvantaged children in other parts of the world who cannot afford insulin and diabetes supplies, my own complaints look really petty and selfish. Compared to all of the unnecessary money I’ve spent this week, my own donation to Life For a Child seems pretty poor.

So, today I’ve matched the donation I made to Life For a Child a week ago.

Without access to diabetes supplies, education and healthcare, people with diabetes will suffer. Without insulin, people with diabetes won’t survive. That’s a human being living with the same condition, just like you or I. Or a son. A daughter. A sister. A brother. A mother. A father. A friend. A family member. An aquaintance. Or even a stranger.

If you are reading this, you are touched by diabetes.

And nobody deserves to die because they have diabetes.

This weekend, consider telling your loved ones that you’ve given life to a child with diabetes rather than gifts.

Flowers die, but children shouldn’t.

Visit sparearose.org, and give life to a child with diabetes today.

Also be sure to check out the folks at t1interational, who advocate for people with diabetes in developing countries. I wrote about their Insulin 4 All campaign in November.

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Stamp Of Approval

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“You want a pump, don’t you?” Gwen asked me in the hallway outside of her office on Monday afternoon.

“The doctor’s written here in your file that you’ve made up your mind and that you want a pump. Have you picked which one you want?” 

I knew which pump I wanted. It’s not like there was a huge choice to pick from, anyhow. I guess I was just a little surprised at how quickly things were moving. I honestly thought that I would have had to justify to Gwen why I wanted the pump.

“Right, I don’t think I have any of the Animas forms left,” Gwen replied as she hurried off towards Reception to retrieve paperwork for the Animas Vibe insulin pump that I’d picked.

We sat down in her office, where I was met with a stack of paperwork. We completed the order form for the pump itself. We completed forms to be sent off to my health insurer, who would be covering the cost of my pump. We completed forms to be signed off by the endo. We completed forms to be sent off to the NDSS, in order for me to be eligible to purchase subsidised pump consumables. We talked through order forms for the consumables that I will need to purchase prior to pump day. And we completed content forms so that everybody has permission to liaise with everybody throughout this whole loooonnnnnng process.

Gwen grabbed her diary from reception, flicking through pages in search of a block of free days for pump fitting. We eventually settled on a Monday and Tuesday in mid May, where I would be hooked up and trained under the supervision of both Gwen and a representative from Animas.

Gwen has been a significant part of my diabetes journey since the day I first walked into her office nearly six years ago. She’s been the one of the few constants I’ve had among an array of rotating diabetes healthcare professionals. I felt as though I owed her an explanation as to where my decision had come from. I felt like I needed to explain to her why I was abandoning the method of injections that she had taught me to do. In some way, I felt as though I needed her stamp of approval in order to move forward with this scary new way of managing my diabetes. 

But the words were struggling to escape from my mouth. I was overwhelmed.

“You don’t need to explain it to me,” Gwen said.

“I do. I never made this decision lightly. That’s why I didn’t decide straight away back in November. But injections are a lot of work. I don’t do the same things every day. I don’t eat the same meals every day. I don’t live that regimented lifestyle that seems to produce those good results. I feel like I owe it to myself to give the pump a go. My hba1c has been fluctuating within the range of a point over these last few years, and I’m aiming for it to be more stable and at the lower end of that range.”

But no matter how many words I managed to string together that day, I realised that this wasn’t Gwen’s decision to make. It was mine. It was a decision that I made for my own diabetes, and my own life. It was a decision that I will have to own. Right now, it’s a decision I’m damn well proud of.

Gwen totally respected that this was my own choice to make, and she never once tried to sway me either way. But it was still nice to feel a stamp of approval in her final words.

“I think you’ll enjoy pumping. I think it will give you the edge that you’re looking for.”

Heatwave

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I felt as though I had just opened the door of a hot oven as I stepped outside of the building where I work yesterday afternoon. Squinting as my eyes adjusted to the bright, early afternoon light, I could feel the sweat on my forehead. I let out a sigh of exhaustion. I instantly felt the burn of the blazing hot, 42 degree sun on my skin as I walked over to my car. I could swear it was hot enough to fry a steak on the burning pavement.

It must have been well over 50 degrees inside my car, which had been parked in the blazing hot sun for 8 hours straight. An uncomfortable burst of hot, dry air blew into my face as I switched on the car, waiting for the air conditioning to kick in and do its thing. I wanted nothing more than to head home, have a cold shower and flop under the air conditioner with some iced coffee. Instead, I had to brace myself for an uncomfortable drive towards the city to see my diabetes educator.

I’d refilled my drink bottle for the third time before I left work, after I’d been skulling down water for much of the day. My blood sugar was 6.2 before I left work. Although the majority of my rapid acting insulin from lunch time had worn off, I slipped a Merryteaser Reindeer chocolate from my leftover Christmas stash into my bag, just in case I needed it. The heat is often unpredictable.

It has never taken so long for my car to cool down once the air conditioning has been cranked up. That car ride to diabetes clinic was absolutely draining. My water bottle was just about empty by the time I pulled down my window to grab a ticket at the entrance to the hospital carpark. I’m not normally one to rove around for a good parking spot, but a spot undercover, and away from that deadly sun was well worth me wasting a few extra minutes. 

As I sat down in the air conditioned waiting room, my meter confirmed a hypo coming on. I pulled my now melted Merryteaser chocolate reindeer, and sucked all of the remaining life from its packet. Just like the world outside feels to me right now. Sucked of all its life, and its glory.

With the mercury set to remain above 40C here in Perth for the next three days, please look after yourself. Stay indoors, keep covered up outside, drink plenty of water, and be prepared for unexpected glucose levels.

I hate Summer. I hate the hot weather. I hate being cooped up indoors. I hate uncomfortable nights of sleep. I hate feeling exhausted and drained. I hate managing diabetes at this time of the year. And I’m very much looking forward to the cooler months of the year.

Join the Australian Diabetes Online Community for our weekly diabetes support chat on Twitter tonight from 8.30pm AEDT by following #OzDOC. 

The “Fill In” Endo

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I’m very protective over my diabetes. I share it with the people I can trust, and I do my best to shield it from people who aren’t going to be supportive. I can thank my very first endocrinologist for that.

Thankfully, the endo I have today is someone I can trust. Each time I go into diabetes clinic, I find myself able to share more and more with her. Which is funny, considering I only go in there twice a year. But still, I feel a certain level of comfort in front of her, that I don’t in front of strangers.

I’d been planning Wednesday’s appointment out in my head for weeks. I had a list of notes and questions in my diary to ask her. I was nervously anticipating my post Christmas hba1c result. Sidenote: I really need to get these done inbetween my 6 monthly appointments, so that I’m not playing guessing games or making excuses to slack off on diabetes management for too long! I knew exactly what I wanted to talk to her about. I even brought along my FreeStyle Insulinx meter and USB cord, ready to share my data with her. For me, that was a massive step, and a big vote of confidence in her.

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So, when a “fill in” endo came over and called me into the office, my guard was immediately up again. That trust was gone. I would have to tread water carefully, but I was willing to give him the benefit of the doubt.

However, he didn’t seem to be very knowledgeable around my questions.

I asked him if I would be able to get an endo’s sign off on the pump without coming in for another appointment. His response went something like “I’m not really sure. I imagine that we would be able to sign it without you coming in. Gwen will be able to tell you.” Gwen, being my fantastic diabetes educator, of course.

I also asked him if I could have a letter exempting me from limits on subsidised test strips. He responded with “I haven’t really heard of such a thing. It might be a better question for Gwen. There is such a thing as too much testing. Most people probably don’t need to be testing more than 4 or 5 times per day.” 

He also wasn’t very encouraging when we talked about my latest hba1c result.

It had gone up by half a point since last time, but it was exactly where I expected it to be after the past few months I’ve had. I expressed my disappointment, and my desire for it to be lower and more stable with a pump. “Your hba1c is around where we’d like to see it. It’s certainly a good range to be aiming for” he replied, suggesting that I didn’t need to be aiming any lower.

All in all, he left me feeling disappointed. I feel like I’ve come so far with my diabetes management. I’m so proud of the attention and interest that I’ve given to my diabetes in this past year. I had shared my perspective around my diabetes to him, looking for some support and some guidance. Yet some of his answers were so vague and wishy washy, that I seriously doubted whether he was an actual endo.

I got the impression that because my chart looked amazing compared to many of his other patients, he didn’t need to give me too much of his time. I’m not a qualified professional myself, yet I can see that there’s room for improvement. There is always room for improvement.

As I walked out of there with a doctor’s certificate dated from the 1990s in hand, I thought to myself thank goodness I’m seeing Gwen on Monday.

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Spare a rose this February, and give life to a child with diabetes in need. Visit sparearose.org.