Scumbag Pump

My pump has been a pain in my ass lately – both figuratively and literally (shout out to one of my Purple campers from Teenage Camp for inspiring me to do a booty site).

I am unbelievably lucky to have a pump, which basically is thanks to the fact that I am still young enough to be on my parents’ health insurance and pay relatively cheap fees – am not looking forward to that 25th birthday! HOWEVER, pumps are not all sunshine and rainbows, and lately it’s started to grate on me.

I’ve decided to call it Scumbag Pump – inspired by the Scumbag Steve and Scumbag Brain meme. Examples are here if you’re not down and hip with the youths!

So why not create my own?

My pump has done numerous scumbag things the past few weeks, including:

  • Alarming loudly to alert me that my battery was low. Was this at a nice sensible time, like midday? No, it was 3 AM. 3 AM the night before school went back. Who needs sleep?
  • The site peeling off my skin one hour after my site change, because I decided to go for a walk. A WALK. Apparently that’s too hard to handle, all that strenuous dawdling to the milk bar must have been too much.
  • Beeping loudly to remind me to test in the middle of yoga class – during relaxation time, where everything is silent and dark…except for the dulcet tones of my Animas squarking through my singlet. I felt a bit werid retorting to “Turn your phone off!” with “It’s actually my pancreas!”
  • Catching on the doorknob at work, pulling me back, making me drop everything in my hands, and making me turn a swear word into a “FIRETRUCK!” so I didn’t drop the F bomb in front of 12 year olds.
  • Falling out of my bra onto my face while Purple Team tried to take the best upside down photo for Teenage Camp scavenger hunt. Don’t do a backbend with a pump, it ends badly.
  • Alarming and glowing through my shirt on a date. Nothing says “date me!” like a beeping slightly cyborg-like contraption on my chest.
  • Three sites failing on me – I may have to change, I don’t know what’s going on, but waking up with ketones of 2 is not the way to start my weekend. If I feel that crappy, I want to have had a good night beforehand!!

LOVE having a pump, I LOVE the diabetes options it gives me, and I am so grateful that I live in a country where I have access to not only insulin, but management choices. I also love Animas – I will probably never change companies, their customer service is incredible and their pumps are awesome. However, sometimes being attached to a machine 24 hours a day, 7 days a week, really takes its toll!

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It’s not your diabetes

Parents of young people with diabetes are incredible – I’m constantly in awe of how knowledgeable and dedicated they are towards their children. Whenever I meet a parent of a type 1 in person, we always get along like a house on fire as they love to chat about what their kids are achieving, and the challenges they face.

However, there’s been something that’s been grating at me lately in the online diabetes community, and it’s parents that see their child’s diabetes as something that they are entitled to dictate. Complaining about their child’s reluctance to wear a CGM, or their child’s ‘negativity’ towards diabetes.

“He doesn’t want to go on a pump!”

“She’ll only test before meals!”

“He refuses to even try a CGM”

“Her levels are always so high, she doesn’t care!”

As much as you have done an amazing job raising your child with type 1 diabetes, there comes a time when they are old enough to dictate their own healthcare. This is different to your ‘normal’ kids – you tell your daughter to get a vaccination and that’s a non-negotiable! With a type 1 kid, they grow up so much faster. They are asked to make more healthcare decisions in a day than most of their peers make in a year. When they are little, we have to make decisions on their behalf (a four year old doesn’t like injections but they have to be done to keep them alive…), but as they get older, these decisions must be gradually handed over.

Diabetes is an invasive and personal disease. To have your parents overriding your decisions takes away your bodily autonomy, and will either create resentment or a young person who takes no responsibility for their disease. Do you really want to drive your child away, or have a child who sees their diabetes as your problem?

“He doesn’t want to go on a pump!”
It’s a personal preference – it took me 2 years to go on a pump as I hate being attached, and I regularly take pump ‘holidays’. Work with your child, and respect their decision. It’s not your body that will be connected and sore!

“She’ll only test before meals, and she won’t show me!”
At least she’s testing!! She’s still taking responsibility. Talk about it – is she in burnout? Testing everyday is HARD – sometimes there are days where I can only bring myself to test once or twice. BGLs are private – I get snappy if anyone looks at mine without asking. She may be scared of judgement, or sick of being told how much insulin to give herself. Cut her some slack sometimes, and talk to her as an equal if you are worried.

“He refuses to even try a CGM”
Would you like a plastic device attached to you at all times, along with a pump? Would you like to have numbers in your face 24/7? It is a personal preference, and it is his body. Ultimately, as much as you may be involved in his management, it is his body and his decision. There is a reason for it, and you must respect that.

“Her levels are always so high, she doesn’t care!”
Nobody with diabetes just ‘doesn’t care’. There is always something behind it – mental health is a major issue for those of us who have diabetes. Please don’t put their apathy down to ‘non-compliance’. You probably have a beautiful trusting relationship due to you both tackling this disease together, so talk to your daughter. What is bothering her? 

What is the common theme? Respect your child’s decisions, and discuss their diabetes with them as an equal – they live with diabetes and at the end of the day, you are there as a support, not a manager. You guys are a team as they grow up, and as they mature you step back to let them take the stage!

Getting through

I’ve just finished my first grad year.

I am exhausted. My body feels like lead, I can’t concentrate for more than 15 minutes, and my BGLs are everywhere. Again. Lack of routine and having no concentration (“Did I bolus? Where’s my pump? Did I test?”) means that my blood sugars look like a rollercoaster, and I feel like I’m living on one. Wake up at 15, fall down at 2…I’ve pushed my body the entire year, and I’ve finally stopped for more than 24 hours and all of a sudden my body doesn’t know what to do with itself.

“YOU GET A COLD! YOU GET A MIGRAINE! YOUR WHOLE BODY GETS SICK! YAY!”

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However, do you know what’s underrated? What helps with this fatigue and feeling utterly crappy?

Cats. Dogs. Warm fuzzy pets who sit on your lap and just want a good scratch under the chin, who don’t judge you when all you do all day is binge watch “Please Like Me” and eat random concoctions of food (avocado and chilli flakes anyone?)

Insulin. Migraine meds. Cat. That’s what my prescription should be.

 

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Surviving the holidays

This is an article I wrote for DEDA, the organisation I run with three other amazing women who have type 1 diabetes. Have a read if you’re curious about the obstacles that those with an eating disorder and diabetes can face. Happy Holidays! xx

DEDA

The holiday season when you have an eating disorder is hard.

The holiday season when you have diabetes is hard.

What happens when you’re lucky enough to have both?

When you have two illnesses that are so interconnected, it’s hard to know where one stops and the other begins. How do we get ourselves through this time of year, when it’s full of triggering and difficult situations, and many of our healthcare support systems are taking a well-deserved break?The answer to this problem is to tackle it step by step – there are so many aspects to your eating disorder and diabetes that it would be ridiculous to expect yourself to conquer your challenges in one go!

Comments

“Should you be eating that?”
“Aren’t you diabetic? “
“That’s a lot on your plate”
“You’re eating nothing!”

These comments are hard enough when you have diabetes, but add in an eating…

View original post 926 more words

burnout, black clouds, and the beach

Blogging has been sporadic at best this year – just a note, your graduate year of teaching kills you slowly and turns you into a nana who goes to bed at 8.

2015 has definitely been the most difficult year of my life. I thought my diagnosis year was difficult, but this was a whole other kettle of fish. I started a professional graduate job with only two months training, worked full-time while completing a Masters degree, was diagnosed with another chronic condition, co-founded DEDA , volunteered, and tried to have a social life. My physical and mental health has deteriorated, and diabetes burnout has been pretty much consistent. However during this week, Tuesday was basically the first day off from work or study I’ve had since my Masters intensive in November 2014, and dear lord it was absolutely glorious!

I went to the beach, did nothing but read and swim, and the only reminder of diabetes was the pump on my hip. My bruises were hidden, I was sitting at a comfortable 9.3, and I didn’t even have to worry about the water (thanks Animas waterproofing!).

No pump alarms, no ketones, no hypos,  just a book and a pair of bathers. I hate diabetes, I hate my body, but I definitely don’t hate how lucky I am to be able to lie in the sun and be comfortable in the knowledge that I have access to medication and healthcare. So many people around the world struggle to even access insulin, and a day off has helped me reset my mind. Sometimes we can get so caught up in our own problems that we fail to take a step back and realise that we are actually incredibly blessed.

I am educated, have a roof over my head, work in a job that I love, and live in a country that subsidises my life saving medication.  May 2016 bring a newfound appreciation of my blessings, and a lifting of the black cloud that has hung over 2015.

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Just like Stacey

Tonight as I watched The Bachelor and got lost on the #actuallydiabetic tag on tumblr, I stumbled upon this article – “What The Baby-Sitters Club Taught Me About My Disease”

For those of you that aren’t Gen Y and weren’t obsessed with The Baby-Sitters Club as a child (i.e. 99% of you), there is a character in there called Stacey, and Stacey had type 1 diabetes.

In primary school, I was obsessed with these books. My frenemy in Grade 1 had every single one, and I was seething with jealousy. I would go over to her house and instead of playing, I would sit in a corner and devour each one. Looking back, that may be a reason I wasn’t the most popular seven year old – what a bore!

Anyway, Stacey was my favourite. I was entranced by her perm (she had a PERM guys, I didn’t even know what that was but I knew it must be cool), she was POPULAR and FASHIONABLE and from NEW YORK but she had a SECRET. Stacey kept her diabetes secret from her friends in the first few books, and I remember being fascinated by this disease. I distinctly remember taking a safety pin from Mum’s sewing box and poking myself with it, wondering how Stacey must feel having to inject herself all the time. She was always my favourite, even though I knew I was (like the author of the article) much more of a quiet Mary Anne or a bossy Kristy.

How’s that for foreshadowing? Ten years later, at seventeen years old, I sat in a hospital bed in the ER and was told that I had type 1 diabetes. I think it’s a real reflection on the true loser I am that one of my first thoughts as soon as I was left alone was “Oh my god, I’m just like Stacey”

Look at her PERM and the SCRUNCHIE! She was so cool guys!  Good choice with the lunch tray as well, solid 3 exchanges!

Look at her PERM and the SCRUNCHIE! She was so cool guys!
Good choice with the lunch tray as well, solid 3 exchanges!

Stubborn as a Georgie

Something I’ve always struggled with is admitting that I’m sick – my mother and I would have screaming matches when I was a teenager about going to school with something like a chest infection. I would literally be hacking up litres of phlegm and drag myself out the door insisting that I was in the peak of health. I was (and still am) the female version of Barney Stinson when it comes to my health.

This weekend I had a ridiculous reaction to some new medication I started. Long story short, it caused me to vomit (I’m talking projectile, it was coming out my nose…) for most of Sunday morning from around 3am. I then had to compete at a calisthenics competition, where I jumped and went upside down for three hours wanting to hurl, with blurry vision and a sneaky vom after one of the performances. I’ve been nauseous and shaky since Sunday, with elevated blood sugars that refuse to come down. As both my mother and housemate said, I “look like crap”.

The point of this post is to shame myself a little, to actually taking advice from people who want the best for me. I rang Nurse On Call last night, and in between vomiting she “highly, HIGHLY” recommended I call an ambulance.

Guess who didn’t call an ambulance.

My doctor recommended taking tomorrow off as well as today and Monday, as my “body needs time to recover”.

Guess who is going to work tomorrow. 

I find it really hard to let myself be sick – I don’t like my body letting me down, and I have a stubborn “As long as I can still walk and talk I’ll be fine” mentality. This needs to change, but I can’t quite bring myself to do it just yet. Taking off Monday was a step – little by little I may get there!

Camp rocks.

At the ends of camps, parents will thank you profusely, and I always feel happy, but also a little bit guilty. Volunteering on these camps is definitely something I want to do, and LOVE to do, for kids for diabetes, but it’s also something I want to do for me! These camps lift my spirits. They pull me out of burnout, and I get to spend time with kids who are hurtling through different stages of life with a useless pancreas to boot. Being surrounded by diabetes, and not feeling different, isn’t something that only the kids experience. The leaders (those with diabetes) experience it too, and I benefit as much as any camper from the camps. I’m so lucky to have the opportunity to volunteer on these camps. We may be exhausted, but there is no other place where I would rather be sleep deprived than on a diabetes camp!!
Family camp was so interesting – after working and volunteering with teenagers, to be on a camp with parents and tiny kids was eye opening. I got a look into the other side of diabetes – how much parents worry, and how tough these kids are. Hell, I had a hard time at 17 – when a five year old comes over and lisps “I’m hypo”, I just want to give them all a massive hug. They are dealing with obstacles that none of their friends do, and seeing these kids meet others with diabetes, and hearing adorable conversations about their “jell’beans!”, makes me want to high five every single one of them. They’re all champions.
Camps are awesome. Kids walk away feeling less alone, more independent, and owning their diabetes. I walk away exactly the same. Camps have to keep going – the sense of family and peer support I’m sure these campers will gain, and that I already have, is imperative to helping them tackle their diabetes and live an awesome, long, and healthy life. 
   
 

Sick days are not the same.

The thing I love and hate about my job is that when you’re sick, you can’t take an easy day and knock out some mindless tasks.  

Have you ever tried teaching a year 9 class with a high blood sugar, after a day of brain fog and feeling like you’re wading through mud? Trying to keep 15 year old boys on task in French is really hard when you want to vomit. 

People with working bodies would say “take a day off”. But if I took a day off every time my body rebelled against me, I would be at home more than I would be at work. This high stayed around all day, I couldn’t budge it and it’s still hovering around 20. 

Sick days for chronically ill people aren’t “sick” days, they’re “oh dear god I cannot actually function, I would be a threat to everyone at work” days. My workplace is amazing and so understanding, but as someone with a very strong work ethic, I refuse to let my pancreas dictate what I can achieve, unless I’m literally in DKA and cannot function. 

I’m so lucky to have a condition that’s manageable, but I really wish I could pick the timing. 5pm today would have been better body, not bang on 8.55am. 

Screw your pancreas, all I wanted was a cruisy Thursday. 

 

Type 1 teacher – a massive post for a massive six months!

I recently just finished my first semester of teaching. It’s been a wild ride – my first term especially has blurred into one giant mess of late nights, early mornings, and crying to my KLA leader in the Languages office. I’ve learnt so much, not only about my job, but how my diabetes reacts to being on my feet from 7.30-4.30!
There are three main things that I’ve learnt about my diabetes these past six months, and in true teacher fashion I will list them, because lists are my addiction and the best thing ever. 
1. Lower stress levels = lower blood sugar levels 
I don’t care what some research papers say (that our levels only go up due to stress eating or burnout), the fact remains that in the first month and around report time, my levels were absolutely nuts, regardless of what I ate! I’m doing my Masters at the same time as working (I know, I’m insane) and having three assignments due at the same time as 150 reports was NOT conducive to perfect diabetes control. Handy hint – if you want to increase your hba1c in a few weeks, writing reports, lesson plans, and 3000 word assignments at the same time is the way to do it.
2. Students surprise you.
The hardest part I’ve found so far about being a teacher with type 1 is having to be “on” the entire time, even when your blood sugar is plummeting and you can see your hands shaking as you write the date on the board. However, my fears of having a hypo while the kids destroyed the classroom and each other were quickly put to rest. It surprised me how understanding they were when I explained why we were doing a quiet writing activity. A quick “Guys, I’m diabetic and my blood sugar is really low, I need you to finish off this exercise quietly while I drink this juice” is usually all it took. The one or two students who acted up would quickly be peer pressured into behaving by the others because “Miss doesn’t feel well! Don’t be stupid!” I’m lucky to have a good relationship with my kids, and I’ve learnt to never assume their reaction to anything. They also can guess when I’m low – I teach French, and when I forget the word for “door” or “listen”, they know something is up! They’re not perfect angels by any means, but they’re respectful and great kids!
3. Diabetes prepares you for the classroom.
How does it prepare you? Teachers and diabetics both spend their days juggling about a million things at once – having five years experience of the constant diabetes internal monologue (“Am I low? Did I over bolus? Will I walk home? Should I set a temp basal now or later? What if it rains?”) prepares you for the teacher internal monologue that happens throughout your entire day. My brain during the school day now looks something like this: 

  
And sounds like this: 

“Leave room on the board for the brainstorm later”

“Ugh what is that smell”

“Is that blood on my top?!”

“Check in on that back row”

“Cold call Bob for the next question he’s getting too comfy over there ”

“Oh my god WHAT is that smell”

“Oh gosh this writing is sloping downwards, am I low?”

“No time no time we need to get through this today”

“Ok you just dropped the worksheets, you’re low”

“Peer learning time aka hypo treatment time!”
I’m still making so many mistakes but I’m learning! If there’s a Melbourne high school teacher out there with type 1, let’s grab coffee.