Tag Archives: chronic illness

Have faith in others.  

I slid down against the wall, checked the train timetable, and sat back. I felt a little funny, but today had been a weird day. A small fire at uni, that had us joking in the corridor but then mildly freaking out as we realised we were stuck on the first level due to the single stairwell being blocked. Then news from Bourke St, that a person had mowed down pedestrians and left a trail of carnage behind him…today had not been a good day, I was ready to get home and build myself a doona and pillow fort.

Suddenly, I couldn’t control my limbs. I looked down at my thighs twitching, and inwardly screamed at them to STOP! Before I knew it, this twitching made its way up my entire body and I wasn’t able to see through my blurred vision. I started fitting -I couldn’t control my limbs or my head, it was like the screaming in my brain to stop was blocked by each jerk against the tiles. I could hear voices around me, feel hands touching my head and the sweat in every pore, but I couldn’t pause it. Being awake in your own body while you fit and watch people around you freak out is not something I’m keen to repeat.

 

I spat out “diabetes” as the convulsions became less strong and a nurse (found that out later, at this point she is an angel) pulled a coke out of her handbag and grabbed my shoulders as she forced it down my throat. Looking back, it must have looked very Steel Magnolias – DRINK THE JUICE SHELBY!

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Some beautiful women called Donna and Kate helped me onto my train, and let me cry at them until my stop, where a woman called Sal sat with me until my blood sugar reached the sixes. She fed me all the hypo food I had left while telling me about her niece with type 1, and how hypos are “such a pain!” You’re not wrong Sal, you’re not wrong.

Times like these act as a reminder that I’m not invincible. That however much I tell my body not to drop, to hold on, to keep it together, that sometimes I lose all semblance of control.

I forget that the majority of humans are inherently good. 99% of us want to help each other, and have empathy in spades. I felt so looked after by these three strangers, and they were so caring and genuinely worried that I nearly started crying again. Throw that together with my friend listening to me freak out on the end of the phone for a solid 10 minutes, and my diabetes crew assuring me that it’s happened to some of them…

Scary things can happen to those of us with diabetes, and I really think the only way to tackle it is by trusting that we will be ok. That people around us genuinely care, and that being vulnerable and letting yourself be helped (both physically and mentally) is really the only way to acknowledge those scary feelings and keep on living your life. We can’t let diabetes stop us altogether, but sometimes we have to let it stop us for a little while – stop us and force us to acknowledge that we are not invincible.

That timing though…

Diabetes is quite particular when it decides to f*ck things up.

I guarantee you I will never go low or high when I am sitting at home napping on a Sunday afternoon. My BGLs will start to go insane right at the point where I really need my mind working – parent/teacher interviews, an oral presentation, networking events, in front of rowdy year 8s, on stage…

ON STAGE.

I had State Champs on Sunday night for calisthenics (it’s a weird Australian sport, I go from looking like this… –>

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to this –> ignore my terrible feet and focus on the fabulous feather)

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ANYWAY

I tested before I went on stage – 6.2 – great! As soon as the music started and I hit my pose behind the curtain, I felt myself start to shake and sweat, and instantly knew that I was low. I mumbled “Shit” as the curtain rose, and willed myself to get through the next three minutes.

Being low on stage is not like being low during ‘normal’ sport – on the court, I can just call time, treat my hypo, and watch someone else fill in for me. It doesn’t work like that with dance – I can’t yell “TIME!” at the judge and stumble off while my friends are halfway through a walkover. Technically, I could walk off, but to get disqualified after all that training…combined with hypo brain, all logical thought goes out the window and all you can think is “Get through this”

Thanks to diabetes, my balance was off as I couldn’t see straight, and thus couldn’t hold myself up in any sort of balance. I fell out of my headstand, right onto my back (it’s still aching, good job diabetes) and crouched into what my sister and I call the “ball of shame” until I could pick up the next movement. Those 4 seconds were so long – I could feel my lip wobble as I looked at the floor and willed myself not to cry. Do you know how hard it is to keep dancing on stage when your brain is starved of sugar? REALLY FUCKING HARD. It’s scary. There is a different move every second, and you have to rely on muscle memory to get you through as you use every last bit of brain power to focus on keeping in time. You can see your hands shake as you go upside down, and your heart beats so hard in your chest it reverberates up into your head and drowns out the music. Everything on stage is an overwhelming, bright, and terrifying blur.

I think what really angered me about this is that I was so frustrated at diabetes. I had practiced so hard for this competition – I had been having trouble with things in that routine, and had been finally nailing them at training. I was ready to smash it on Sunday, and diabetes HAD to interfere at THAT PARTICULAR MOMENT. Not five minutes before, not five minutes after, the THREE MINUTES I was on stage.

I came off stage and instantly cried into my coach’s shoulder (the poor thing still probably has my tears, snot and makeup permanently caked into her top). The combination of a bad hypo (they make me emotional…) plus the frustration of having screwed any chance of a place for our team in that performance, just because of something that was completely out of my control, resulted in me stuffing my face with lollies and crying for a good 15 minutes outside the dressing room.

Sometimes there’s nothing to say about diabetes, other than it SUCKS and has the worst timing in the world. The only reliable thing about it is that it will always choose the most inconvenient time to make things difficult. I can handle being bad at something, and I can handle making a mistake (OK, that’s a lie, but I can accept it…). But when my goals are ruined by diabetes, despite me doing all the right things, that is when I really resent my lazy pancreas. I have been doing everything I’m meant to do, DIABETES GOD, WHAT DO YOU WANT FROM ME?! A prayer? A sacrifice?!

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Insulin

I’ve been focusing on including poetry in my classroom this term, as a different way of approaching texts and understanding concepts, themes, and issues. It’s been working well for my students, so I thought why not give it a try? They’ll write poems about the issues stemming from Hamlet, I’ll write one about the issues stemming from the syringe in my handbag.
If you’re up for an angst-laden poem, read on my friend.

 

Insulin

Insulin

Clinical, Cold

Stinging, Dripping, Living

Safe, secure; unpredictable, dangerous

Diving, Rising,  Guessing

Well, whole,

Life

 

Insulin

Intrusive, Foreign

This liquid gold turns to golden fat

A lifesaver turned to a life not worth living

A life lived in the mould of ‘perfection’

There’s only so much perfection that fits before

You start to slice off the parts that you can’t hide.

 

Guilt permeates me to the core.

I am lucky. I am blessed. I am insulin.

 

“Think of those less fortunate”

A faceless peer kilometres away does not take away the fear of

Living in a body too big to accept.

 

There is no one type of Type 1

I am my type.

My type is vulnerable.

Vulnerable to the whims of my blood

Vulnerable to the judgements of others

 

My type is fragile

My type slowly builds a wall

Of fat to keep out the looks and flood

Of concern – “It’s not about fat, you’ll feel better”

 

Better? What is better?

Does my mind not rate a mention

While my thighs rub red and raw?

Does my smile go unnoticed

If my belly dares to escape?

Does laughter seem irrelevant

When my arms wobble as I grab my sides in joy?

 

Insulin

 

Three syllables

Two pens

Too much.

 

 

Brain fog

I’ve been absent for a little while, in more ways than one.

My head feels foggy – I can just see where I’m heading, but it takes all my effort to push past it. Diabetes has taken a back seat in the past month or two as I try to use my brain for university assignments, professional development plans, and getting to places on time and with pants on. I’ve started to forget to bolus, because my brain is going one million miles an hour. Is this what getting older is like? I need quiet, I need rest, and I need space to be able to make decisions without diabetes butting in with an incessant hypo.

This  brain fog means my management has been as up and down as my moods. As my educator pored over my upload this morning, she furrowed her brow in confusion. Sunday? Perfect numbers, great ratios, model student. Monday? Manual boluses, no tests.

“What’s going on honey?”
I shrugged, and mumbled “When I have bad days, so does my diabetes”.

I was hoping the new pump I got this morning would help to melt away some of the fog, and give me a bit of a jump start into focusing on my diabetes. But it didn’t, and I shouldn’t expect it to. At the end of the day, a pump is a fancy and expensive syringe. A pump cannot clear the fog from my head, or the confusion from my brain. A pump cannot count carbs, or take away responsibility for me.

I have to focus on my head first, and leave room for diabetes in there. There’s no point burying myself in uni readings and trying to create interventions when my blood sugar is 25 and I’m studying on the toilet. Why bother focusing on a literacy-centred lesson when the likelihood is that I’ll struggle to teach it anyway, having forgotten to  bolus again?

To get rid of the fog, I need to slacken the reins, and bring diabetes back into the running. The fanciest meter or pump won’t do it for me – I’m the only one that can.

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The Healthcare Experience

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

I’m not going to focus on healthcare professionals in this post – you guys do an incredible job, which I could never do. What I think really needs to be talked about is the accessibility of healthcare. Who can access it, and who cannot?

The word ‘accessibility’ covers a lot of ground – how do I travel to my healthcare provider? How do I get my meds? What treatment options are open to me? How do I get the best care? However, the most pertinent aspect for me (and the only one that I really know anything about, due to earning fuck all) is the financial question of accessibility.

Good healthcare should not revolve around your ability to pay. We are so lucky in Australia to have a public healthcare system, however this system is overstretched and under resourced, and I have a terrible feeling that it’s going to remain like that unless people start seeing the gift that is universal healthcare. People wait months to be seen, while those who can afford it skip the queue. This applies to diabetes as well, many people don’t see an educator or endo due to the fact that we can’t spare a couple of hundred dollars! We’re already stretched with paying a couple of hundred per month for diabetes supplies, add on healthcare costs and you’re stuck eating rice and frozen vegies for the next fortnight. I’m lucky enough to still be young enough to count as a ‘dependent’ on my parents private health insurance, even though I haven’t lived at home for years and pay them every month for that insurance. The pump works for me, and I shudder to think of the situation I’d be in if I had no PHI and couldn’t afford to treat my diabetes the way I need to.

I am SO blessed in my healthcare professionals – I see them though a clinic at The Alfred, and it is all bulk billed. My educator is an absolute treasure and I’m hoping to follow her until she retires, but when I want to have kids, I’ll need to see her privately. With the extra BGL supplies needed during a type 1 pregnancy, as well as all the extra scans and checks, will I have the money there and waiting for her?

It blows my mind that governments around the world are trying to rip up universal healthcare systems (I’m looking at you, conservative British and Australian governments!), when we already have a lovely dystopian preview of what a society that dictates care through ability to pay may look like (hi USA!). Healthcare needs to be accessible to EVERYONE, not just those who have the funds.

If I could choose one way to improve healthcare, it would be to mimic the best version of universal healthcare, worldwide. There shouldn’t be a need for organisations that send insulin to people that can’t afford it,and it’s an absolute tragedy that this even exists. However the sad fact is that there are still people living with a lower quality of life, or even dying, simply due to the fact that they can’t afford to manage their diabetes. We need to find a solution, and fast – because every time someone can’t access healthcare, humanity itself becomes a little less human.

 

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.

 

 

 

 

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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I feel everything

I feel everything.

I feel the insulin seeping into my body as I press a button on an external organ, pumping in life and stinging as it enters.

I feel the guilt as I calculate a dosage that is over “normal”, over what my pump tells me is “correct”.

I feel the shame and confusion as my weight creeps upwards, despite every effort, and I am told by doctors and specialists to “eat less”, “exercise more”, and “don’t you want to get this under control?”

I feel the shaking of my hands and the wobble in my voice as I breathe in and out, willing myself to just insert the stupid cannula, “get it over and done with and you won’t have to do this again for three more days”.

I feel the sting as another piece of metal pierces my skin, and the dull pain that seems to pulsate through my stomach and hips, as though it’s berating me for doing this to my body yet again.

I feel the bumps and scars on my skin from five years of injections, insets, and infections, red and raised, as though my pancreas has decided to claim its territory on the outskirts of my body, having lost its autonomy on the inside.

I feel the embarrassment as I raise my arms to write a lesson aim, and a student sees an infected pump site on my hip. “Miss, did something bite you?”

I feel the fatigue as I drag myself out of bed at 6am, trying to teach 125 kids how to write after having spent the wee hours of my morning peeing and vomiting, and considering whether I would get more rest if I just slept on the toilet.

I feel the red hot flush of anger as I’m told that I’m not in control. I feel this anger slowly seep through my body like a warm tide, my body turns to syrup, and static noise fills my ears as I’m berated for trying my hardest. What’s the point in trying your hardest when neither your body nor the people around you acknowledge it?

I feel the hope when someone takes my hand and softly says “I know you’re trying, I know that this is all your body will let you do right now”, and the cool tips of their fingers as they squeeze my hand in a promise of solidarity.

I feel the tears roll down my face and my throat tighten, trying to remember those words as I look at yet another “HI” screaming at me from a meter I try to ignore.

I feel the fear, settling in amongst my thoughts like a thick fog in the early hours of the morning, growing ever thicker as another high refuses to budge.

I feel the gnawing sense of dread, praying my body will carry me through, that I will find a way to halt my organs destroying themselves, that I’ll die old and happy, not young, sick, and scared.

When it’s been five years, and nothing seems to be improving, I feel everything. 

“Month One”

Tonight I was babysitting two kids, one of whom has type 1.

I tested him post dinner, then before bed, then an hour post bed because he’d been running around like crazy and I had a gut feeling he would shoot down.

I was right. 15 point something down to 6 in an hour,

This boy is still very newly diagnosed and on injections (syringes), so I tried to get food into him to keep him stable overnight…
Anyone who is a parent of a child with type 1 or who has worked on type 1 camps before knows that this is a lot easier said than done. Kids get distressed, they don’t seem to know who you are or why they’re being asked to drink orange juice and crackers in the middle of the night – and who can blame them? I wouldn’t want a nanny forcing juice down my throat at 2am.

This gorgeous little six year old looked at me and completely lost it. At first it was your classic “ahhh who is feeding me what is going on” whimper, but then it morphed into something else altogether. I saw this switch happen in his head. He grabbed onto his pillow and started sobbing, these huge sobs from deep down in his belly that just made my heart ache. I’ve been babysitting/nannying for a very long time, so I like to think that I know the difference between a tantrum cry and a legitimate cry, and this cry made me want to kick this kid’s diabetes right out of the window.

“NOOOOOOOOOO, I CAN’T, NO! I HATE IT! NO!”

He cried like I cry when diabetes has well and truly screwed up something (like the time I went low without warning while driving on the freeway and was nearly hit by a truck as I tried to pull over to the emergency lane). It’s that cry when you’re just bloody OVER it and you can’t be bothered dealing with its shit anymore. It’s the cry that takes over your entire body – the heavy feeling in the middle of your chest that feels like a cold lump of anger and fear (the lump that we expertly put away and deal with most of the time) rises up and seems to take over your whole head, if only for a moment. Basically, it’s the cry that we all have in that month or so after diagnosis, when it finally hits you that all this bullshit, these middle of the night hypos and constant injections, is for life, and that there is nothing you can do about it. It’s what I call the “Month One” cry. 

I shed a little tear as I sat there, rubbing his back with one hand and texting his mother with the other. He is only six years old, but everyone I’ve spoken to with type 1 diabetes has gone through this, as well as the parents of the kids. I have only met this kid three times, but the look on his face when we test together(and high five when we get nearly matching BGL numbers) is one that I want to see on his face more often, not this heartbreaking look of “I hate everything about this, make it stop” that I saw on his face tonight. It’s the same look you see on diabetes camps where a kid has had to miss out most of the final night disco because of constant lows, or when they’re so high  that they can’t do anything but lie there, drink water, and talk to you about how much diabetes sucks. It’s the look you wish you never had, but which makes an appearance a few times a year, when diabetes just SUCKS.

Month One is a bitch, and I wish there was something we could do to fast forward parents and kids through that massive learning curve. Once you come out the other side you learn to deal with the highs and lows (both literal and figurative!), and life is a different sort of normal. If anyone comes up with something like that, please let me know, because I want to run around Melbourne and sprinkle it over all the families that are going through this month of hell.

It gets so much better, and so much brighter.

Friends as Health Care Professionals

Writing a massive post to compensate for three months of nothing. Sorry team, life is crazy.

I’m at that age now where most of my friends have graduated university/are in their final year.

More than half of my friends have gone into healthcare – nursing mostly, but there are some physios, dietitians, doctors, and paramedics sprinkled throughout there as well. I like to bluff my way through conversations with their uni friends and see how long it takes them to figure out that I’m not a nurse or dietitian #diabetesperks.

In the past four years, it’s been really interesting to watch how people that I have been friends with for years have gradually reacted to my diabetes. When I was diagnosed, it was the last year of high school and we were all too focused on getting into uni. It fell into the background, thank god.

But I can always tell now when they’ve had a lecture on something that involves diabetes, or had a patient with diabetes, because the next time they see me their eyes will widen, they’ll grab my hand, and say something like “Please look after yourself, we saw a diabetic foot infection and I nearly spewed”.

There are fantastic parts to this – a friend I’ve known since I was 4 years old is finishing up her nursing degree, and she’ll blurt out things like “I saw someone with kidney failure today, I love you, please keep plugging away at those BGLs” then give me a massive hug. One of my best friends is a physio – she keeps Diet Coke/Coke Zero in her fridge at all times for me, texts me when yet another blood test strip turns up under her sofa cushion, and will expertly steer a conversation with other HCP friends away from the ‘exciting’ topic of t1d and pregnancy if I am in the room (it scares me). My friends know about the basics* – I don’t have to try and explain why I’m acting weird if my blood sugar is low, they’ll just throw me a juice box and continue chatting, which is 100% perfect!

I feel like I’m in a really fortunate position, because I can influence how my friends interact with their patients as healthcare professionals – they KNOW me, I am a person to them, and so when they walk into a room and their patient has type 1 diabetes, I’d like to think they have that little bit of extra empathy. My friends have seen me hypo, they’ve seen the pump and injection bruises on my stomach, and they know that it’s a disease that’s not to be joked about. They call their other HCP friends out for me, they’re amazing. What’s more, they always want to learn – they ask me about my diabetes in general, about my carb counting,  how temp basals work. and I love it. To my knowledge, they’ve always aced the questions on exams about diabetes! 

However, there are crap parts to this as well. It’s not my friends, it’s their friends. Remember what I said about bluffing my way through nursing talks? Yeah, having HCP friends gives you an insight into how other nurses, doctors etc. talk about patients. I totally understand they need to blow off steam – hell, the shit they have to put up with (figuratively AND literally) is insane, they do an incredible job. But hearing nurses make fat diabetes jokes is only fun when I pull my meter out and watch them squirm uncomfortably and say “But we didn’t mean YOU”.

I find med students are the worst though – not so much joking about the patients, but thinking that they know everything. I was sitting with some friends at uni in first year, and there were some of their friends there who I didn’t know. I pulled my meter out to test, and without even asking, one of them leaned over, looked at my BGL and went “That’s pretty high, you should really be taking care of yourself better”… my BGL was in the 9s… WTF BUDDY YOU HAVE BEEN IN MED SCHOOL FOR THE GRAND TOTAL OF 8 WEEKS STFU.

Saying that though, I am so lucky to be in the position where I can influence future healthcare professionals just by being their friend and happening to have type 1 diabetes. I am lucky to have friends like I do, that are fantastic healthcare professionals but also fantastic friends. If you live in Australia and end up in hospital, where a nurse doesn’t tell you off for a 8.5, or stands up to the doctor when they insist you disconnect and go onto a sliding scale of insulin even though you’re only in to get your wisdom teeth out, they’re probably one of my friends.


*not just my HCP friends, I have some other non HCP friends who are fantastic, shout out to Dais, Corks, and all the girls I lived with in the UK. x