Diagnosis

Missed Diagnoses

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Dad had been laying on the couch for several days earlier this month. He had been unwell since a family function where he had eaten what we suspected to be an off piece of fish.

A trip to Bunnings at the beginning of the week took its toll on him, quickly wearing him out. As the week progressed, he spent more and more time on the couch. His voice was so croaky, and I could tell that even the simple act of talking used up a great deal of his energy. Towards the end of the week, he could barely remain at the table for the duration of dinner. He was still eating very little, despite my Mum constantly reminding him that “you have to eat or you won’t get your strength back.” He could barely even get up off the couch without puffing.

He went to see his doctor at the beginning of the week, who told him it was nothing more than a simple virus. When he returned again later in the week, his doctor told him that this “virus” was simply taking time to pass, and that he needed to drink fluids, eat soft foods and rest.

We approached the one week mark, and Dad wasn’t improving. Mum broached the idea of testing his blood sugar levels when I woke up on the Sunday morning, and it took me by complete surprise. Diabetes didn’t even occur to me once throughout that whole week. Maybe it was the initial symptoms of food poisoning that had thrown me off. In fact, it’s only now that I am writing this, that I am realising how much these symptoms did mirror that of type 1 diabetes.

When Dad mentioned that his mouth was extremely dry and that he might need to be given a saline drip, the reality that he might have diabetes hit me. I could feel the knots in my stomach tightening, and I knew that I needed to check his blood sugar level. I grabbed my meter, placed a fresh Lancet into my Lancing device, and tested. His blood sugar level was 8.5 mmol. Slightly elevated. He told me he had eaten a biscuit when he woke up, and I breathed a sigh of relief.

We took Dad to the emergency room that day, well aware that a week had passed and he wasn’t getting any better. He ended up staying in hospital for a week and received treatment for something much more serious than a passing virus. Two weeks on, and he’s back home and on the road to recovery.


So I guess the morale of my story is that missed diagnosises aren’t exclusive to the diabetes world. They are very much a reality in the non-diabetes world, as well.

Dad visited his doctor twice in that week prior to going to hospital. While I don’t expect a General Practitioner to be an expert in every illness or ailment out there, I do expect that he would take a patient’s concerns more seriously. Offer referrals, or suggest medications. And I fully expect that he is not the only GP in the world today who is missing diagnosises.

So, that’s where I’ve been these past couple of weeks. I haven’t really had the time or the energy to blog lately. I haven’t really been able to find the right words, and diabetes hasn’t really felt very significant compared to what’s been going on.

But it is good to be back behind the wheel of my blog once again. Stay tuned. 

Food, Glorious Food

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Last night’s OzDOC chat on food was engrossing enough to draw my attention away from the first ten minutes of Australian Survivor, so I’m elaborating on it today.

The dietary advice I first received after my diabetes diagnosis was to eat low fat, high fibre foods that were digested slowly. I was taught to count carbohydrates by my diabetes educator, which eventually faded into regular guesstimates while I was on insulin injections.


I think the most bizarre thing is this idea that we have to eat to avoid going low, rather than adjust insulin! I also hear it from healthcare professionals, and it’s often referenced in diabetes books and magazines. I sometimes wonder if they’re just trying to cover their backs! 

I relied on this advice heavily in the beginning. I religiously sought out foods that were low in fat and had a low glycemic index ranking, regardless of their nutritional value or carbohydrate load. I continued to eat a lot of processed foods that were seemingly healthy – cereals, juices, yoghurts, canned fruit, brown bread, muesli bars – and ridden with hidden sugar! I often remember testing my blood sugar at uni after breakfast, unable to make the connection between a level of 17 and the foods I was eating.

Since I began connecting with other people with diabetes, I’ve read a wide variety of stories and perspectives on food choices. I’ve certainly drawn inspiration here and there, but I don’t really feel that I’ve taken dietary advice from any one source in particular. Ultimately it’s about finding an approach that will make me happy, while achieving the BGLs that I aim for regularly.

In the beginning, I definitely used to shy away from foods that weren’t blood sugar friendly. And when I did eventually cave in and eat them, I would feel super guilty for the numbers that followed. One of my biggest shifts in the past year or so has been having more confidence in working my way around the foods that I want to eat. Carb counting and pre bolusing insulin have been my best assets in these past couple of months. I learn from experience. Over time, I’ve gained a pretty good idea of what effect certain foods will have on my blood sugar levels and how I can work my way around them.

Another big shift has been changing some of my old habits around food. Cutting the sugar out of my coffee and tea was one of the hardest, but most worthwhile ones. Ditto for sugary drinks. I don’t feel so guilty for my three coffees a day anymore! Afternoon snacking still remains my weakness, but I am trying to be a little more prepared these days rather than going back and forth from the cupboard and fridge. I still do eat carbohydrates, but in a lot more moderation and balance than I once did. I don’t shy away from higher fat foods either, especially for nutritional value such as iron or protein.

I still do eat chocolate. And cannoli. And donuts. When I go out for meals, I usually give it my best guess, regularly test and try to enjoy myself.

There’s no right or wrong approach when it comes to diabetes and food. But I know that this food approach is the right one for me at the moment, because it makes me happy and I can achieve the BGLs that I aim for regularly.

A New Member of the D-Club

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“Doesn’t your sugar levels go high if you eat too many sweets?”

This was a question that was posed to me over the weekend, as I reached over and grabbed a sweet from the table. 

“I’m low at the moment” were the first words I could get out of my mouth, resisting the urge to add more words until the sugar was sitting safely in my belly.

“I have type 1 diabetes. My body doesn’t produce any insulin.”

I pulled my pump out of my pocket, thankful for my newfound prop that keeps my flailing hand gestures at bay.

“This delivers all of my insulin for me. Technically speaking I can eat anything I want, so long as I give insulin to cover it. Obviously it is better for my blood sugar levels if I eat healthier foods, though.”

This person then went on to tell me that she had been recently diagnosed with early signs of type 2 diabetes, and that the lifestyle changes suggested by her doctor were easier said than done. That she wasn’t sure how changes to her diet would fit in with the rest of her family at home. As she questioned her need for the medication prescribed to her, I could see just how hard it was for her to accept her condition. It brought back my own memories of hiding my diabetes, unable to accept my new ordinary.

I curiously asked if she was testing her blood sugars at home, or whether she had seen a diabetes educator yet. As she told me ‘no,’ I nodded my head. The last thing I wanted to do was to try to give advice. The last thing I wanted to do was to act like I knew what she was going through, or what was best for her. Type 2 diabetes is completely different to type 1. Heck, one person’s diabetes is completely different to another’s.

Yet at the same time, I felt like I should have done more to help her out. I felt sorry for her, because her doctor didn’t seem very helpful or supportive. I hope I said the right things.

“I know it’s hard. It’s taken me ages to make changes that have lasted. I’ve had diabetes for six years, and I still have days where I don’t feel like I’ve got it right.”

All I really wanted to do was to give her a big hug and tell her everything was going to be okay.

Hopefully she sees in me that it will be.

Accepting My Ordinary

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I absolutely hated the thought of being visibly different to anyone else after my diagnosis. I would sit in the hallway at diabetes clinic, watching the other “diabetic” young adults, and I absolutely hated that I was one of them. For the first couple of years, I definitely tried to hide from my diabetes to a certain degree.

I stubbornly refused to wear my Medic Alert bracelet, despite Mum and Dad’s constant reminders that it might save my life one day, on the principle that it branded me as a “diabetic.”

I would travel as lightly as possible whenever I left the house, without even thinking about the consequences. My diabetes educator once asked me where my jellybeans and meter were. I used to live by the motto that it would never happen to me. And shops were everywhere for backup.

I rarely tested my glucose in public situations, even if I needed to. Oftentimes at uni, I would test with the meter hidden in my bag. Or pack up my things and walk off to the bathroom.

I refused to wear appropriate footwear. I would stubbornly walk around uni in rubber thongs. When my feet were blistering at the end of the day, I was proud that I fitted in with many of the other students on campus.

I wouldn’t talk about diabetes if I didn’t have to. I didn’t lean on the people around me enough for support. I wasn’t confident or enthusiastic about it when it did come up.

Finding peer support and knowledge online, and opening up about my diabetes through this blog has definitely changed my attitude towards diabetes for the better. (Perhaps some age and maturity comes into play here as well…)

Today, my hypo containers accompany me most times I leave the house. Even if they sit in my jacket all night, or stay in the car on a quick trip to the shops, I feel much more comfortable having them on me. My contingency pack is also ready for when I’m away from home for a prolonged period of time.

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I’ve developed a new love for shoes. I’ve been a thongs-and-sandals-in-the-summer kind of guy my whole life, yet now I wear them half as often. While I certainly don’t wear “diabetic” shoes, I do dress more suitably for the occasion. And a good pair of Converse shoes looks good with anything.

Today, my glucose meter sits proudly on my desk at work, within easy reach when I need it. I test in the office that I share with a few other colleagues, and it’s sparked a couple of conversations in particular during recent weeks.

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I’m still tragically hopeless at stringing words together when people ask me if that is a diabetes testing thingy (translation: blood glucose meter), but boy am I so much more confident in addressing it.

I still don’t wear a Medic Alert bracelet most of the time, but that’s purely just because I’m annoyed at the old expanda band sticking to my wrist (something I need to get onto, soon).

I’ve recently began wearing an insulin pump – a very visible sign of my diabetes. When I think about those first few weeks on the insulin pump, I think about how much I talked it through with my family every morning when I woke up – something that I simply wasn’t able to do after I was diagnosed.

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I’ve been watching Diabetes Victoria’s Diabetes Won’t Stop Me campaign for National Diabetes Week, trying to think of something grand to say about how I am not stopped by diabetes.

Accepting that these diabetes intricacies are my ordinary over the past few years, is far more extraordinary than what climbing a bridge will ever be.

That, folks, is how I will not be stopped by diabetes.

(Coincidentally, today is also my one year BridgeClimb-aversary!)

Finding My Tribe

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People don’t see me at 2.30am in the morning, shivering, and shoving skittles down my throat. They don’t see me on a restless night, rage bolussing stubborn highs that refuse to go down. Or the finger pricks I perform every time I walk out of the room.

People don’t see the insulin pump that I pull out of my pocket underneath the table. They don’t see the loads of discarded test strips and insertion devices underneath the lid of my rubbish bin.

People don’t see the guilt I feel every time I put a donut or a piece of chocolate into my mouth. They don’t see how tied down I feel every time I walk out of the house, with a jacket or satchel stuffed full of diabetes crap. Or the failure I feel at the bruises and scars that are hidden underneath my shirt.

People don’t see the exhaustion I feel, every time the alarm clock goes off to check my glucose in the middle of the night. They don’t see the burnout I feel behind every smile, and every single ‘good morning’ that bounces off my face.

People don’t see the rollercoaster of emotions that flood through my body when the door to my room is closed. They don’t see the fear I feel, every time this condition takes an unpredictable turn. Or the judgement I place on myself, every time I go quiet.

You don’t see diabetes, when you look at a person like me. You see normal. I daresay you even see healthy. You see me drinking coffee and eating donuts, just like everyone else. You don’t see all of the tasks that managing this condition entails. You don’t see the isolation I feel, living with a condition that you need to experience to fully understand (and trust me, I wouldn’t wish that on anyone).

For me, a big part of what was missing from my own diabetes equation for the first four years was peer support. Nothing really does beat the feeling of hearing someone else say the words “me too.” “I get it.” Or “I hear you.” Nothing beats the anticipation I feel, every time I refresh my diabetes feed reader. Nothing beats the enthusiasm I feel during OzDOC chats every Tuesday night. Nothing beats the sense of community I feel every time I am glued to Twitter, that makes me feel far less alone with my condition. Nothing beats being able to lean on my family for support when I need it, something that I simply wasn’t able to do after my diagnosis.

There’s an old saying that goes, “find your tribe and love them hard.”

I’ve definitely found mine, and they certainly won’t be going away anytime soon.

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