#IWishPeopleKnewThatDiabetes

Today is #IWishPeopleKnewThatDiabetes day – where people with diabetes use this hashtag to create and spread awareness about this disease, and give those of you with a healthy pancreas a little bit of an idea of what out day to day looks like.
#IWishPeopleKnewThatDiabetes is something that weighs upon me. Not in the front of my mind, more so like a pimple on my chin. You know it’s there, you’ve tried to deny it, hide it, and joke about it – but at the end of the day you just have to get on with life, knowing that the pimple is there for the foreseeable future.

However, unlike pimples, #IWishPeopleKnewThatDiabetes is here to stay, and requires constant monitoring. After six years, thinking about my diabetes is second nature, and I sometimes forget what was in my head before I got type 1. What did I even think about?!

#IWishPeopleKnewThatDiabetes gives you perspective. There is an answer to what I thought about before diabetes – unimportant shit! Diabetes allows you to take a step back and realise that, in the great scheme of things, forgetting to photocopy a test or saying something embarrassing at a party is a minuscule blip. Having to be your own pancreas, and literally keep yourself functioning day to day, makes it easier to be grateful for the little things.

When I sat down to supervise production rehearsal tonight, my pump alarmed loudly, screaming “NO BATTERY!” Curling up in the theatre, I quickly shoved my hand down my top (the students are used to that by now!), shut it down, and continued to coach year 7s on the finer points of a pirouette.

#IWishPeopleKnewThatDiabetes is something that, sometimes, you just don’t have time for. Let me teach my kids, let me live my life, and then I’ll deal with my lazy pancreas.

Numbers Shmumbers

For me, numbers are overwhelming. They started off great (I killed at times tables and geometry), but as I got older numbers started to take on a more sinister role. In the classroom numbers became confusing, and full of anxiety and terror. What is sin, cos and tan?  Why do I have to know how to do BIDMAS? WHY ARE ALL THE NUMBERS AND LETTERS MIXING TOGETHER IN MY HEAD?! WHAT DO THESE MEAN?! WHO AM I?

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When I was diagnosed, numbers became my nemesis.  Diabetes is full of numbers – it’s a 24/7 disease that has you constantly doing equations in your head. For a teenager who had trouble with figuring out ratios in jelly shots, this was not the best disease to have. Since diagnosis, numbers have been my downfall.  When a dietician tells me about a “a super easy equation to figure out your insulin units!”, I nod and panic inwardly. Will I need to use a calculator? How long will this take? Will this be triggering? Before I went on the pump, I used to do S. W.A.G boluses –   a scientific, wild-ass guess, where you use more instinct than data to bolus an unexpected or uncalculated meal. Why would I do that? THIS was my mind during every injection.

“Ok, so this meal is 50 grams…but I’m playing netball in an hour…but I’m also sick…so will 2 units be enough? Will that send me low? But I don’t want to play high…but then what if that exercise shoots me up then down?  What if…oh FUCK IT 3 units and jellybeans it is”

Would you like to do that every time you eat?

The pump has been my saviour, as it does some of the calculation for me, but it has also been my downfall. Pumping requires more BGL testing – and that’s where I crumple. Every time I see a number on my tester, I have an emotional reaction to it. When I see a number like 5.5, I feel so proud of myself, like it’s an A+ beaming up at me from the screen. When I test and I’m high, I feel terrible. I feel like I’ve failed an assignment – naughty pancreas! How dare you! I fed you a salad and this is how you treat me?!

Numbers judge me. Numbers yell at me and tell me that I’m a ‘bad diabetic’, that my efforts are worth nothing, that I’m a terrible person. An 18.7 feels like a punch in the face – like it’s screaming “This is your best effort?! This is all you’re capable of?” This is totally my issue, and many people with diabetes don’t see their BGLs like this. They see them as simply a number, nothing more. Objectively, I know blood sugar levels are not ‘good’ or ‘bad’. Blood sugar levels are just that – LEVELS. They’re not a grade, or a personal judgement, they’re simply a platform from which to take action. I will preach this to anyone who will listen, but somehow it won’t get through to my own brain.

My issue with numbers has led to me struggling. I’m avoiding testing as much as I should, because I’m terrified not knowing what the result going to be, and that I can’t prepare myself if it’s ‘bad’. I hate that I attach my value as a person to my BGL, but I’m finding it really hard to separate the two.

My diabetes is a part of me, and when it’s not under control, I feel out of control.

 

 

Let’s dia-beat-this

The theme of World Health Day is “Beat Diabetes”

I’m usually not a fan of people saying someone is ‘beating’ a disease. A very close friend of mine had cancer last year,  and it would drive me crazy when people said “Keep fighting! Beat cancer!” Like anyone with a disease wakes up in the morning and thinks “I’m going to let my body win today lol”.

What does “beat” mean? I’m assuming we’re not referring to physically beating diabetes, however satisfying that may be. Can you imagine kneeing diabetes in the groin?! Amazing!

Beating a disease can mean so many things. It can mean eradicating it all together, or putting up a good fight. It can simply mean living your life, with your disease right alongside you. I personally think anyone with a disease is ‘beating’ it, simply by having it. On a micro level, we’re all bloody amazing. With the help of meds, injections,  machines living in our bras etc., we beat it by living it.

On a macro level, do we need to beat diabetes? Abso-bloody-lutely. In 2012, diabetes was the direct cause of 1.5 million deaths. WHAT. More than 80% of diabetes deaths occur in low- and middle-income countries, which makes it even more important that we beat diabetes. Having a disease shouldn’t beat you down, or prevent you from living the life you want to, but the depressing fact of the matter is that with so many varying levels of access to and affordability of diabetes supplies around the world, this disease CAN stop you. People are spending their entire earnings on keeping themselves alive! Check out T1International to save me ranting on this issue.

By beating diabetes i.e. eradicating diabetes, we can improve the lives of everyone living with diabetes around the world, especially those who are the most vulnerable. However, there’s something important about this goal that we all have to remember.

People with diabetes are not a burden.

Diabetes is a burden. People with diabetes are not.

When talking about beating this disease, let’s keep our focus on what’s important. No-one asks to get diabetes, of any type, and it’s imperative that we focus on kicking diabetes’ butt, and not the butts of those who have it.

 

 

 

 

My body is not a synonym for discipline

I’m a big fan of exercise. I love to feel my body move and sweat, the power in my legs as I jump, squat, and run,  and my muscles working to support my body. There is no better feeling than collapsing onto the floor after a super intense but super fun workout. I exercise every day – some days it may be yoga or Pilates, but I love to move my body.

Unfortunately, in a society such as ours, exercise seems to be synonymous with being skinny. I am fit, but I am also fat. I am a size 12-14, and I have a belly and a very large butt. My thighs rub together and my arms will always squish against my side, despite all my efforts to make them look smaller. As I wait outside the studio for a group fitness class, you would walk past me and most probably assume I am “beginning my fitness journey”, to quote every gym instructor ever.

This morning I took a combat class with an instructor I’d never seen before. He’s a “Master Trainer”, i.e. he trains other instructors, and he pushed us hard. I was loving it, punching and kicking my way through, until I heard him yell:

“Your body is a direct reflection of your self-discipline!”

Excuse me?!

“Punch harder, get smaller! Fat is unhappy!”

What?!

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My movements became smaller and less intense as I mulled over his words in my head, then became more powerful as I started to get angry and imagine his face with every roundhouse kick.

That is not ok. A small body does not mean that your self-discipline is perfect, and my muffin top does not mean that I lack discipline. Also, what is discipline? If it involves disordered eating and turning down experiences in favour of an extra workout or two, I’m happy not to have it. Furthermore, is there any sort of consideration for some of the issues that people in the class could have? For people that have an unhealthy relationship with their body, food, or exercise, a statement like this is reinforcing that self hatred, and crazy triggering if you have an eating disorder!!

As an aside, would he have any idea how difficult it is to juggle a condition like type 1 diabetes with exercise?! The fine balance of maintaining a blood sugar level that is not too high (so your workout is hard and/or harmful) or low (so you don’t pass out) is a never ending challenge, one that all of us are constantly refining. The lows that you sometimes cannot avoid mean that although the calories I’ve burnt in a workout may be redundant, my fitness is still improving every time. I look fat, but I’m fit as hell. My fat means that hypos follow me around, but it also means that I go out for dinner with friends, I sit around a table with my family and laugh, and I eat intuitively and naturally. I could show you my perfect blood work, but why should I need to?

You cannot tell my level of fitness, my diet, or my relationship with my body simply by looking at me and evaluating the amount of fat peeking over my leggings. 

I finished the class, taking inspiration from the multitude of different body shapes around me. Thin women, fat women, muscly women, gangly women, curvy women – all there  to get fit, have fun, and get endorphins pumping.

Go screw yourself, fat shaming instructor. Our bodies do not reflect discipline, the only thing they show is our humanity. 

Why is Miss shaking?

The thing about teaching is that you’re so active for the entire day, you sort of forget to stop and take care of yourself. Last Wednesday I had a “six-on” (face-to-face classroom time for the entire day, with no planning/admin periods), and I careened into the Year 10 English classroom after lunch with all the grace of a baby hippo. We were working on essay writing, and as soon as the students finished their introductory activity and I started to speak, I knew something wasn’t quite right. I started my sentence.

“Ok guys, I just need you to…”

I froze. What is that word I need? That thing you do when you need to write in your book? You grab the cover…

“Open our books?” a student volunteered.

“Yep, thanks man, we’re going to look at structuring introductions. Now just bring up Google Classroom and you’ll see a…”

My mind stopped, and my tongue went numb. I had uploaded the file that morning. What is that thing called when you put words on something and present it?

“PowerPoint Miss? The essay writing one?” piped up another kind student. The boys down the back were snickering – “Big night last night Miss?”

I looked down at my hands and saw them shaking. My breathing quickened, and I could already feel that hypo sweat trickling down my back. What do you do when your blood sugar is dropping fast, and you’re responsible for twenty five teenagers?

The feeling you get when you’re hypoing as a teacher is probably comparable to being thrust on stage wearing only your underpants, with an unforgiving audience and no idea of what you’re meant to do next. You’re so vulnerable, and trying to keep the class under control while you’re slurring words or shaking is nearly indomitable. I had a sickening realisation that there were no hypo treatments in my pencil case – I had subtly treated a low BGL the week before during Year 7 French, and forgotten to replenish my supplies. Disorganisation 101. The only thing standing between me and the floor was the mercy of my students.

“Ok…someone needs to go on an adventure down to Staffroom 3, grab the pink bag on my desk, and come back here as quickly as possible. My blood sugar is really low.”

The class was silent – which is a feat unto itself. I never speak softly (I can be heard down the hallway…) and my hands were visibly shaking. If hypos are good for one thing, they’re great at silencing 16 year old boys. One of the few girls in my class jumped out of her seat and ran out of the classroom, and I looked up to see mostly confused faces.

“Pause for a second guys – bring out your homework from last week, and correct it with the person next to you while I get myself together.”

Saying that sentence was like wading through mud. Everything slows down for me when I’m low – my brain seems to stop working. Student-of-the-day rushed back with my bag, and I threw jellybeans down my throat and sat at my desk, willing my body to work.

Ten minutes later, and I was ready to go, with an intact classroom and mostly unfazed students! This may seem unremarkable to people who don’t work with teenagers, but for twenty five students to sit there in relative quiet for ten minutes, do their work, and not take advantage of the vegetable that I had turned into, is a testament to my students. They were so blasé (in the best possible way), and rolled with the punches. There was no fighting, arguing, or throwing objects across their room. They accepted the situation, which is what many of us with type 1 diabetes want when we’re low. No drama, no judgement, just everyone getting on with their day while making an allowance or two!

Being a teacher with type 1 diabetes can be stressful, but it’s also incredibly rewarding. 

 

 

 

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

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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…

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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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