Insomnia, of the Diabetes Kind

I stir in my sleep. Not like stirring on a fresh morning, after a relaxing night’s sleep. But rather stirring, as a result of nocturnal discomfort.

I open my eyes and squint at the bright red display of the clock radio sitting beside my bed, which reads 2.12am.

I feel hot. I’m not sweating. I simply feel hot. Mostly in my face. You could feel it in my face, for sure.

My mouth feels like the Sahara desert. It’s dry. And salty. It’s nauseating. I so badly want a drink of water, but can’t be bothered getting up and out of my bed.

I desperately need to go to the bathroom, but at the same time don’t want to budge from my bed. Discomfort wins out. I drag myself out from my bed, and into the hallway.

I stumble through the dark, not wanting to switch on any lights. I don’t want my eyes to adjust to the light, otherwise I’ll never get back to sleep. I don’t want my blood sugar levels to get any whiff of light either, and begin triggering dawn phenomenon before morning has even arrived.

I emerge from the bathroom. I grab a glass from the kitchen cupboard, and a bottle of water from the fridge. I pour the cold water into my glass, and slowly begin to relive my mouth of it’s revolt. I could easily go for another. But common sense wins out here, knowing that I have no inclination to budge from my bed for another bathroom break until morning.

I slip back into bed. I toss and turn, My eyes are closed, but my mind has zero inclination of nodding off. I suddenly have the urge to rip the light green blanket from my bed, despite feeling cold when I tucked in several hours ago. I want to turn the fan on, but I know I’ll probably be shivering by the time I wake up. My pillow feels more like a heat pack than a pillow. I flip it over, hoping that the cooler side of it will help me ease into a sleep once again.

It’s nearing 3am, and I can’t believe that I’ve been awake for a whole hour.

Do I get up and watch some early morning television in the sitting room adjacent to mine? Do I switch on my bedside lamp, and grab a really boring book? Do I stay here in the dark, continuing this pathetic attempt at sleep for a while longer? Or is it time to begin counting sheep?

This, is what hyperglycemia feels like.

Restaurant food does it to me nearly every time.

In and Around the DOC of Late IV

Hello Tuesday! I’m fresh out of a relaxing 3 day weekend, complete with lovely grey skies and a nice cool change over Perth this week. Today I thought I’d share a few of the tidbits that have caught my attention in the DOC of late. BYO coffee…

I was so excited when I someone mentioned a Sophie Sweet spelled with all the ‘e’s. She’s only my favourite diabetes Instagrammer out there. She posts all these pictures of her latest Libre graph and what she’s about to eat. She shares the highs and the lows, and the snaps are so damn relatable. I just love her attitude, and she almost makes diabetes look fun.

I’ve just finished reading the book Think Like a Pancreas by Gary Scheiner, and I can’t recommend it enough. It’s a book for anyone with diabetes who uses insulin. It starts with the very basics of diabetes and insulin, then goes into fine tuning basal and bolus insulin doses and adapting it into your life. I wish I had this book handy a year ago when I started out on insulin pump therapy and had to work out my basal rates and all. I’m already finding myself re-visiting sections of it for reference. It’s like having my diabetes educator’s advice handy at home for easy reference. I’ll definitely elaborate more on the book soon. I’m more of a paperback kind of guy, but you can also buy it through Amazon and start reading it on your mobile device today.

Bec made it to Rotto! The CEO of the Telethon Type 1 Diabetes Family Centre swam a length of 19.7km in the Rottnest Swim last month to prove to the kids that type 1 is a life without limits. I was fascinated reading through her blog, Swimsulin, where she talks about the challenges of fuelling her body and maintaining stable blood sugar levels during the race. She’s inching closer to her goal of raising $10,000 for the Family Centre, and it’s not too late support her cause.

Another plug for T1 Talk if you haven’t read it already. Myself and Bec of Sweet and Sour Diabetes wanted to start a bit of a dialogue that explored some of the similarities and differences of being diagnosed with type 1 at a similar age. Our first T1 Talk tackled some of the initial challenges we faced adjusting to life with type 1. Part 1 is here and Part 2 is here, and we plan on continuing this dialogue in the months to come.

I’m a big fan of Diabetes Daily, and in particular reading Ginger Viera’s practical advice on how she manages her type 1 through pregnancy. 

The pressure of managing a child with type 1 diabetes, who’s existence relies on your ability to care for him. This post from The Diabetic Journal is everything.

A person’s absence is the first thing that’s noticed when I arrive at a family function, or on a Monday morning at work. Everyone just has to know what’s wrong. Why do we have to explain ourselves all the time? Is this really the best way to support a person who has lost, is hurting or unwell?  Why can’t we just say are you okay? or I’m here for you. This piece over at Beyond Type 1 really nails it.

Need a good TV show to watch? Broadchurch season 3 has just started. It’s one of those season long mysteries with a tonne of suspects, leaving you unable to figure out whodunnit. It’s on Friday nights on the ABC.

I receive my fair share of messages about doctors who can cure diabetes, requests to share infographics, search engine marketers telling me what I should be doing to increase my site traffic, and sometimes just thanking me for the really “helpful” website. So, you can understand why Church goods really took me by surprise last week!

Last but not least – don’t forget the OzDOC chat at 8.30pm AEST tonight. Follow @OzDiabetesOC and the #OzDOC hashtag on Twitter to join in.

T1 Talk: Back To The Beginning

Today’s post begins a series of conversations between myself and Bec of Sweet and Sour Diabetes. We first connected through our blogs, and our mutual friend type 1 diabetes. Despite our three year age difference, we have discovered that we both have quite a lot in common. Starting with the fact that we were both diagnosed with type 1 diabetes in May 2010, only a couple of days apart. We’ve started these conversations with the aim of highlighting how type 1 diabetes impacts two people of a similar age, who were diagnosed at slightly different stages of life. Although this is our own unique series of T1 Talks, we would like to give credit to Laddie and Kate for the inspiration from their Type 1/Type 2 Conversations series.

Our first T1 Talk is titled Back to the Beginning. This isn’t your typical diagnosis story.  We aren’t specifically revisiting diagnosis, DKA, or the signs and symptoms of type 1. I guess we’re focussing more on the people who were dealing with a type 1 diagnosis thrown into their lives, and some of the issues they faced.

There are two parts to this T1 Talk. The first half is right here in this blog post. The second half follows over on Bec’s blog, so make sure you head on over once you’re finished here.

Tell us a little about yourself

Frank: I’m Frank from Perth, the most boring city in Western Australia the world. My first foray into the diabetes community was when I began writing my blog Type 1 Writes in 2015, and diabetes has become my passion ever since. Some relatively uninteresting things about me: I’ve been a university graduate for four years. I have a degree in Marketing and Public Relations, but the job market in Australia is a tough one to crack. I hate exercise, but somehow I ended up working in a Warehouse. I love drinking coffee, and I would happily eat Toast at any time of the day. I prefer TV shows over movies. I like music from Good Charlotte and The Fray. My most frequently used word would be “honestly.”

 

Bec: I’m Bec from Sydney, Australia. For the past few years I’ve been part of the diabetes online community through my blog Sweet and Sour, and now as a reasonably regular contributor to OzDOC on twitter. Outside of my online diabetes life I am a student speech pathologist commencing my final year of study. I’m a pianist, 80’s music and film connoisseur, Harry Potter enthusiast, and TV series binge watcher. I also enjoy reminding Frank of Sydney’s superiority based solely on our fancy coat hanger. I do approve of your music choice Frank, so you’ve got that going for you.

Frank: You’re so lucky. You can just climb the bridge or walk over and have a Cannoli at Rossini’s on the Harbour whenever you feel like it!

Bec: I still haven’t climbed that thing! One day. When I’m no longer a poor uni student.

Frank: You haven’t climbed it? I’ve done it twice and I don’t even live there…

How did you first connect with each other?

Frank: I remember leaving a comment on Bec’s blog on the final day of Diabetes Blog Week in 2015. Most of the blogs I had read at the time were from the US and abroad, so obviously the first thing I noticed was that she was an Aussie! Over the year she left a few comments on my blog, and eventually sent me an e-mail. I’m still not sure whether my reply actually went through, because I later discovered that my outgoing messages weren’t reaching their recipients. I think we connected a lot more once we became Facebook friends, and Bec began joining in weekly OzDOC chats on Twitter (you’re welcome).

Bec: Thankfully I wasn’t shunned by Frank’s dodgy email account; your reply did work. I have no idea when I found Frank’s blog but I’m going to say it was probably around the same time. I had the same response “Look! Another Aussie in the DOC!”. Plus he had a cool graphic/logo for his blog so looked ultra-professional. I became a regular reader/blog stalker and we had a comment exchange happening across our posts. I like to think we’ve become friends over the years. You can be smug about getting me into OzDOC, but I think the real privilege is having access to my bad jokes/film references/cat gifs on a regular basis. You’re welcome.

Tell us a little about what was happening in your life when you were diagnosed?

Frank: I’m one of the privileged few who got to join the diagnosed-a-few-weeks-before-turning-18 club. I was in the midst of a big transitional change in my life. I had newfound independence. I was midway into my first semester at uni, enthusiastically working my first real job, and had only recently gotten my license. It was very “different” to going to school, having the same routine and seeing the same people every day. I also remember spending a lot of time in front of the computer working on uni assignments, which are very different to high school ones! I’m not one of those people who can simply belt out an essay the night before it’s due.

Bec: I can’t imagine being diagnosed at that time. That’s a major transition stage to have T1 thrown in the mix. I was 14 when I was diagnosed in Year 9 at school. The most exciting thing going for me was being a week from getting my braces off. I remember it being a stressful time. I still have my school diary from 2010 and it listed a lot of half-yearly exams and assignments due shortly after my diagnosis. I was busy at school, taking piano lessons, choir, and going to weekly Scout meetings. Quite a bit for a 14-year-old.

Frank: Well, you had to deal with that while you were in High School. And you were doing a lot more than I was at 14. When I think about the amount of time I spent on Homework and exam study, I couldn’t imagine having to deal with type 1 on top of it. Although, it would have been a good excuse to get out of Phys Ed class…

Frank: Your stalking obviously worked, because we’re now diabuddies. But I think the real privilege is being in the circle of cool kids with a Twitter account. You’re welcome.

How much did you know about diabetes prior to being diagnosed?

Frank: I always thought diabetes was caused by being unhealthy. Poor diet, lack of exercise, blah blah blah. I couldn’t distinguish between types, either. I recall the type 1 in my Primary School writing about having to give herself needles in the annual school newspaper. I simply cringed at this thought, and suddenly felt very conscious about the junk food I was eating after school. Meanwhile the type 1 in my High School came as a total shock. He played heaps of sport. I remember he had an insulin pump, and often told our Maths teacher that he had to leave to get some sugar. I think he was just wanted to get out of class…

Bec: Haha dodgy type 1 excuses. I don’t know how he did it, I felt guilty for using it to get out of sport once!

I knew precious little too. I saw 1 person with type 1 in primary school and all I knew was that she could eat jellybeans in class sometimes and had injections. Back then I split type 1 and type 2 into “the needle type” and “the food type”. The morning I was taken to hospital I kept asking my Mum whether I had “the needle type”. She (not knowing anything about it either) believed I didn’t. Woops…

She raided our cupboards that morning throwing out junk food because she didn’t know what else to do. I remember mourning the Milo (thankfully I got it back once we realised excess Milo consumption did not cause my diabetes or anyone else’s for that matter).

Frank: Your Mum throwing away the Milo…hahaha! Seems like you had a greater insight into diabetes than I did. I never genuinely considered what having diabetes meant, or what those people in school had to do to manage.

Bec: She was on a mission! I didn’t consider what they had to manage in any way. I look back and wonder if I said something stupid at some point as a kid. Probably not, was a bit of a wallflower.

How did you react to learning that you had diabetes?

Frank: When I learned I had diabetes in the midst of DKA, I was devastated. I thought I had done something wrong. I asked my Dad if I would have it forever.

I’m usually more of a glass half empty kind of person. But post DKA, I was so relieved to have saliva back in my mouth and my energy back, that I wasn’t really pissed off about having diabetes at all! The extra attention in the beginning was kind of nice, too…

I remember telling people that once my diabetes was controlled, I wouldn’t have to check my blood sugar so often. Ha ha ha!

Bec: The feeling of having done something wrong is a hard one, I’m glad you got through that. I remember that feeling of not being thirsty anymore. It was the greatest thing ever.

I love the blood checking hypothesis. If only!

By all appearances I handled it remarkably well. I was very attentive and wanted to understand everything about it. I felt a little relieved that I could name what was happening to me.

A few days post diagnosis I remember going into my parent’s room one evening and asking them “why me?” Other than that, I was firmly denying any emotion about it because I was too busy learning how to live with it. In hindsight, that’s not the best way to go about it, and it was followed by a pretty deep denial. Oddly, despite the denial, I was an “over-manager”. I just held on to the idea that it was temporary/an inaccurate diagnosis for a good year or so. Almost 7 years on and I’m only recently starting to properly react to it, and that’s okay.

Frank: I’m so touched hearing your “why me” story. I’m instantly reminded of our age difference, and I can’t imagine how you must have felt dealing with it 3 years earlier than I did. Also, you’re not alone. Seven years in and I’ve only just started to actively manage it in the past year.

Bec: Now now, you’re not that much older thank you. But yes, at the time of diagnosis we were definitely in different stages. I was still more naïve kid than adult. I guess that changed pretty fast once I was diagnosed. You took more ownership of it by asking what you had done wrong. Nothing, of course.

What were you told by your healthcare professionals when you were diagnosed?

Frank: That I would be able to live a normal life. Which my parents constantly reinforced to me whenever I made a comment about having a leg chopped off. There’ll definitely be a cure in your lifetime, my Dad constantly remarked.

My first diabetes educator was amazing. She pulled out her famous diagram of the mouth, and the path that food takes when it enters the body and is eventually transformed into glucose to supply the body with energy (I hope I got that right, G). She remarked that I was quite a spontaneous eater, and suggested that most people have a cycle of 10-15 meals that they eat to help better take note of insulin needs. Mum and I still laugh about that idea to this very day…

Unfortunately, I also had an encounter with an endo who told me I had very poor control just months after being diagnosed. Said educator went in and stuck up for me, and made sure that I was never scheduled to see him again on a clinic day. Thanks, G.

Bec: Oh I get in so much trouble for the dark humour/sarcasm, but I’m glad you’ve been supported by your family and G. G is an absolute legend and that endo needed to read their file notes a little more carefully.

My diagnosis confused me at first because it took a while for someone to tell me what it was. An endocrinologist (not mine) came into Emergency and introduced herself. I had no idea what an endocrinologist was. She told us a diabetes educator would be coming down to take me to the hospital’s “Diabetes Day Care”. Ah… so I’m diabetic?

Once I found out I had type 1, I was told there is no cure, but there are remarkable advancements being made in treatment and technology. I’m also pretty sure the cure in ten years was mentioned as a possibility. Most importantly I was told I could live a normal life. I agree with this, but it’s a new normal.

A few weeks afterwards I was told that I “definitely have type 1” after the antibodies test. This was the trigger for my denial. What did they mean? There was a question about it? They can get that wrong? The educators had no idea that one phrase set off a conviction that my diagnosis would change to something “better” in time.

Frank: Wow, such different experiences. I wasn’t “all there” the first 24 hours of having diabetes. I’m not sure how I would have reacted if I had to start learning about diabetes that day.

Bec: I think whilst my sugar was insanely high my ketones were actually not horrific (3.6). I was lucky in that sense. So I was pretty good to go once they injected me with insulin. I can’t imagine NOT learning about it on the first day. I was an information addict!

The second half of this T1 Talk follows on Bec’s blog. We’ll delve into how we each handled type 1 in the initial time after our diagnosis, and some of the initial challenges that we each faced. Head on over to Bec’s blog to read the second half of our conversation here.

P.S. Thanks for floating this idea, Bec, and for being an awesome co-host and friend.