Diabetes

A Rare Sighting of Diabetes In The Wild

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I have a love hate relationship with books. I used to be the most enthusiastic reader in my school days. I would wake up early in the morning just to squeeze in half an hour of reading before school. I would eagerly participate in the Premier’s Summer Reading Challenge, proudly logging hours and hours of reading. I would have competitions with my friends at school to see who could finish the new Harry Potter book first. I can even remember my year 3 teacher telling me off once because I was finishing the classroom books too quickly! And, I remember eagerly convincing my Mum and Dad to take me to buy the final A Series of Unfortunate Events book on the day it was released.

I’ve well and truly lost my passion for reading over the years, and I kind of feel guilty for it. My Mum and my sister laugh at me everytime they see me pick up a new book, knowing that I’ll set it down after a day and let it gather dust. Sure, I still read about the things that interest me. I collect a lot of reference books on technology, marketing, diabetes and diet. I read a lot of newsletters, magazines, news articles and diabetes blogs. But I guess I’ve lost that passion for reading something from start to finish. I’ve lost that motivation for sticking with something through. And I guess I just don’t see the point of reading books anymore.

I was book hunting on Saturday morning at the massive Save the Children Book Sale at UWA. My arms were filled with bargain books about – take a deep breath – diabetes. As I was standing there, leaning over those book tables crowded with people, a woman asked me where I had found the diabetes books I was holding. I pointed her over to the correct table, and she went on her way.

Normally, I would have ended it there. But that day, I felt hesitant. I wasn’t sure if I wanted to follow her. I wasn’t even sure if she wanted to talk to me. But then again, she already had spoken to me. I wanted to help her. I wanted to make sure that she didn’t pick up the books that I had found too medical or too technical to read. And so, I did the craziest thing and decided to chase after this rare sighting of diabetes in the wild.

As we stood there, talking books, we eventually went on to talk about our connections to diabetes. Turns out we both attended the same diabetes clinic, we both knew the same endocrinologist and we had both been diagnosed in the last couple of years. Pretty cool! I was a type 1, while she was a LADA (Latent Autoimmune Diabetes of Adults), or slow onset type 1 diabetic. I was a typical young adult, while she was an older and less common example of type 1 diabetes. She also volunteered at the new Telethon Type 1 Diabetes Family Centre here in Perth, which was quite fascinating to hear about.

After having that conversation, I finally realised that what I am reading at the moment is a big deal. What I am reading does count for something, even if it’s not done from the first to the last page of a book. It doesn’t matter if I’m only reading a chapter out of a book, an article from a magazine or a post off of a blog. What counts is that I have an interest, even if it’s not an interest by choice. An interest that brought two complete strangers together on Saturday. An interest that offered me 5 minutes of great, and hopefully useful conversation. A conversation that helped me to feel a little more grounded and a little further away from the diabetes wild that I live in.

And that’s reason enough for me to keep reading.

If you’re in Perth and looking for some bargain books, the Save The Children Book Sale is on at UWA until Wednesday.

What The #DOC Means to Me

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I joined in a fantastic conversation the other day, regarding whether involvement in the Diabetes Online Community (DOC) benefits or harms patients. Some recent findings by Dr Michelle Litchman suggested that involvement in the DOC was associated with better glycemic control, self care behaviour and quality of life. You can read more about that on Brian’s blog here.

It’s a topic that’s no doubt questioned by diabetes professionals. Last week, for instance, I asked my endo whether she has heard much about what people with diabetes are doing online. Her response was “I can imagine.” She clearly had no idea what I meant, but told me that it was fine to do so.

Outside of this blog and outside of the Diabetes Online Community, I don’t actually know many people with diabetes. I have two extended family members who have type 2 diabetes. My great grandmother, who passed away before I was born, had some form of diabetes in her old age that she treated with insulin. There were two people who I went to school with, before I was diagnosed, who had type 1 diabetes. And there is someone at work who I know of, but don’t really know, who has type 1 diabetes.

That’s about it. I don’t really have anyone in real life who I can talk to about diabetes. Well, I do, of course. But I don’t have anyone who actually “gets” it. And that’s where the Diabetes Online Community comes in handy.

I absolutely love the fact that I can pick up my phone and I’m instantly connected with people on the other side of the world who have diabetes. I love that I can ask my Twitter friend Aaron how his pump is going. I love that I can read moving pieces of writing that I instantly just “get,” like this blog post I Don’t Want Anyone To Know from my #doc friend Malina (seriously, you MUST read this). I love that there are people like Lala, Marian and Aaron who reach out to me with words of encouragement and advice after reading my blog posts. And I love that I have my wonderful OzDOC friends who I can chat and laugh with every Tuesday night.

It saddens me to think that I have lived with type 1 diabetes for 5 long years without knowing that this wonderful community exists. It saddens me to think about how unwise and unenthusiastic I was about diabetes before I started this blog a few months ago. And it saddens me to think about day to day life without the support of this community.

As for the science of it all, it doesn’t matter to me in the slightest whether it’s proven or not.

I know that I instantly feel better by being able to connect with this community of positive, inspirational, supportive and non judgemental people. I know that I’m inspired by this community to live my very best each and every day. I know that this community has opened my eyes and ignited a passion for the very disease that I live with every day. A passion that drives me to write and to share so much, so often. I know that this community has provided me with a cushion of support to fall back on at times. And I know that this community has a positive influence that will motivate me to manage my diabetes in the best way I can.

I get all of that from people who are complete strangers to me. People who I’ve never met. People who I could walk past on the street without even giving a second glance. I think that is bloody amazing.

I Need To Accept That I’m Only Human

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After writing about having a perfect week numbers wise, I already knew that I was on borrowed time. I knew that I was a ticking time bomb. I knew that sooner or later, I was bound to subside. And sure enough, reality hit me in the face yesterday morning as I woke up to a lovely blood sugar reading of 17.2.

It was no suprise, really. After riding on a high these past few weeks, I’ve been lulled into a sense of false security. In fact I felt so secure that even my mind was starting to agree, offering me words of encouragement to give into temptation.

“I did so well in that endo appointment today, I’ve bloody well earned that white hot chocolate from San Churros on the way home.”

“After all those hours of stable night time BGLs, I can easily afford one of Nonna’s cannoli and biscotti for afternoon tea.”

“One of those hot chocolates I saw them making on TV would go perfectly with my cannoli on this miserable day.”

“That Lindt chocolate is on sale for $1. I’ve been wanting to try it for ages!”

And there it was. By Monday it had gotten to the point where I didn’t even have to find a diabetes related reason to indulge in temptation. You can probably guess how the rest of that day panned out. A few squares of chocolate at lunch time. A few squares to bide my time until knock off. A few more squares because I’d already wrecked my blood sugar levels for the day. And finally, a few squares just for the sake of finishing the packet.

And so yesterday morning rolled around, leaving me with a number to think about. The number 17.2, to be exact. I live my life thinking about numbers. I go about my days judging myself for numbers. I eat, sleep, inject and correct in search of those numbers. And I will do absolutely crazy things in pursuit of those numbers. The perfect numbers.

But numbers certainly aren’t everything. A number doesn’t always define how much work I put into managing my diabetes. A number doesn’t define how good, how “normal” and how sane I feel when I get to indulge in treats such as that chocolate. And a number is certainly not something that will last forever. Because try as I might, every time I’ve come even close to achieving a run of perfect numbers over the years, I’ve subsided.

My point being, I need to accept that I am only human. I need to stop telling myself that those guilty pleasures are bad for me. And I need to stop justifying my choices and just be.

I need to tell myself that it’s these guilty pleasures that remind me that I’m human. It’s these small temptations that motivate me to keep going.

By being more accepting of those small temptations, I hope that I won’t feel the need to eat a whole block of chocolate again. And by being more accepting of those small temptations, I hope I’ll get back on track to keep at that winning streak.

Building Trust With My Endocrinologist

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I have struggled to place my trust in endocrinologists over the years. Trust that I can comfortably pour my heart and complete honesty on the table. Trust that I’ll receive total support and complete understanding in return. Trust that any and every judgement will be reserved. And trust that I won’t walk out feeling fragile and disheartened once again (you can read about that here).

Because trust might mean admitting that I had hypos every day last week. Trust might mean confessing to eating a massive dinner on Thursday and then having high blood sugar levels for the rest of the night. And trust might mean admitting to feeling overwhelmed and frustrated by diabetes at the moment. On some level, I’m scared of what will come next. Will she tell me that my diabetes control is terrible? Will she threaten me with complications? Will she tell me that I need to be locked away in a mental hospital because I can’t deal with it all?

Around two years ago, I was transferred from the ‘young adult’ to the ‘adult’ diabetes clinic at my hospital. I was no longer a newly diagnosed, high priority patient. I felt a great sense of independence, achievement and liberation over my diabetes. And I was finally given an endocrinologist who I could call my diabetes specialist (it was a bit of a russian roulette before). Over time, I’ve become more and more comfortable with her. I’ve been able to place a greater level of my trust in her. And each time I go there, I’ve felt confident in sharing more with her. And Wednesday’s appointment must have been my most successful yet.

First up was my hba1c result. It was a few points higher than last time, but I felt satisfied that it had gone up rather than down. I shared that I’d been having lots of hypos prior to my holiday. I’d become obsessive compulsive in checking my blood sugar levels, and was trying to correct them shortly after eating dinner. The holiday did a perfect job of taking my mind away from obsessive testing, and my blood sugar levels had stabilised nicely in these past few weeks I’ve been back. I’ve just had My Perfect Week!

Next up was insulin doses, and we talked through my lunch. 7.9 before lunch, cheese toastie on Burgen bread with 4 units of insulin, 4.6 after lunch. Perfect. As usual, that dreaded question of how many hypos in a week came up. And as usual, I gave a vague answer that did have some truth. I was having significantly less hypos, and none were happening overnight anymore.

I brought up my recent eye concerns. I told her about my twitch, and that I’d gone and had my diabetic retinopathy scan in the process too. My recent bloodwork came back with good kidney and urine functions and some apparently ‘amazing’ cholesterol levels also.

We went into the exam room, where she had a look at the injection sites on my stomach. I hate this part because I always get really ticklish at the pokes and prods! She couldn’t believe that I used 6mm needles because I am so skinny, and gave me some 4mm needles to try at home.

It felt great to review and talk over everything in there. And as I voiced my issues, I made some realisations about myself that my endo seemed to notice as well. I was a proactive patient. I seemed to be able to identify and stay on top of my issues. I was among the least concerning of her patients. And according to her, this was the best case scenario she could expect from one of her patients.

I definitely walked out of there with a stronger focus and motivation to get me through the next few months. I’m glad I rang for that cancellation and didn’t wait until January. “Don’t test!” my endo jokingly said to me as I walked out of there, a smile on my face.

To My Dear Friend Mr Hypo

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To My Dear Friend Mr. Hypo,

I’ve been in denial about you. For a very, very long time, I’ve been pretending that you don’t exist. I’ve done a pretty good job of hiding the way you make me feel. In fact, the people around me wouldn’t even know that you are there.

I am writing to say that you are one of my least favourite things about diabetes.

You have a knack of waking me up in the middle of the night.

You are the reason I swear.

You are the reason my family and friends see me in a bad mood.

You leave me feeling ashamed.

You leave me feeling guilty.

You leave me feeling demoralised.

You make me feel about this big.

And you know exactly how to make a grown man cry.

For a long time, I’ve struggled to admit that you are one of the biggest hurdles I’ve had to overcome. Because saying that you have gotten the better of me is like admitting defeat. And admitting that I am not controlling you as well as I should be.

Locking you away two weeks ago was one of the best things I ever did. During these past two weeks, I’ve had some of my best nights sleep all year. During the past two weeks, I’ve rediscovered what it’s like not to be bothered even once between the hours of 10pm and 6am. And during the past two weeks, I’ve woken up feeling on top of the world.

Every morning when I test my blood sugar levels, I know exactly how you feel every time you come to visit. I raise my arm in victory, and quietly exclaim “yes!” I am so pleased that you have not caused a single wave in my blood sugar levels for 8 whole hours straight. And I am so pleased at the thought of those perfect blood sugar levels for 8 whole hours straight. There is no better way to start my day.

I think I have finally found the key that will keep you locked away for a very, very long time. I’ve hung it up on a hook labelled ‘Patience.’ With ‘Patience,’ I am able to resist the temptation of checking my blood sugar levels straight after dinner. With ‘Patience,’ I am able to resist the temptation to over correct my blood sugar levels to get them where I want them to be now. And with ‘Patience,’ I have finally been able to rediscover myself away from you.

And that person is someone I look forward to getting to know.

With no regards,

Frank