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.

fog.jpg

 

 

Libre – yes or no?

A few months ago I was in a big diabetes burnout funk, with Masters work plus being in my second year of teaching and trying to not turn into a studying, exam-marking hermit putting diabetes at the very bottom of my ‘can I be bothered’ list.

However, about a month ago, I was able to try the FreeStyle Libre at DX2 Sydney*. I spent two days at this event, meeting people from Abbott Diabetes as well as finally putting names to faces of other Australian diabetes bloggers. Essentially we were there to learn about the FreeStyle Libre – and we were lucky enough to get to try it for free. There’s been a lot written about this in the Aussie diabetes blogosphere lately, but I blame writing reports and Masters assignments for my tardiness. Once you’ve written “Student X demonstrates sound grammatical knowledge” seventy-five times, any non-compulsory writing makes you want to cry.

Screen Shot 2016-06-07 at 12.28.37 pm.png

What is it?

This little glucose sensor is about the size of a 20 cent coin, and is inserted into the back of your arm. To check your levels, all you have to do is scan the sensor with the accompanying meter (you literally just hold it near the sensor) and the number will appear almost instantly. We had very knowledgable scientists talk to us about the science behind it (which went right over my head), but rest assured that the research and testing of this tiny little device is amazing. Essentially, the Libre measures the glucose in your interstitial fluid. Do you know what that is? Me neither. Do I know now? No, I can’t even pronounce it, but I do know that after giving it around 12 hours to settle in, my readings were nearly the same as my blood sugar meter. If my blood sugar meter was 6.5, my Libre was 6.7 or vice-versa. It lasts for a fortnight (and no, you can’t trick it into continuing – more on that later).

Screen Shot 2016-06-07 at 7.36.49 pm.png

One hour into using the sensor – PSA, taking a selfie with the Libre is REALLY HARD.

 

What I loved about it

  • The accuracy – after the settling in period (I would recommend inserting it before you go to bed) it was bang on.
  • The trends – when it reads your blood sugar, it will give you a glucose trend arrow, saying whether you’re trending up, down, or steady. You also get an eight-hour trend history with the meter, so for the visual learners amongst us you can get a fantastic image of what your blood sugar has been doing. The only thing I really liked about the CGM was that ability to see what your sugars are doing, and a trend graph, and the Libre does that without sticking out like a weird growth or alarming at me constantly.
  • The convenience – I can test anywhere. At a red light in my car, during a sport game, at work…it was AMAZING for work – being able to check in 3 seconds and continue teaching was invaluable. I felt safer at work, as I’m developing hypo unawareness and I could check every 5 minutes without interrupting the flow of the lesson. Additionally, I had a wild night a few days after inserting the Libre, and people around me were able to check my BGLs and force feed me sugar while I hypo-yelled at them to stop. Convenience for everyone!
  • The low-maintenance – insert it, and forget about it. I’ve been in burnout and being able to give my fingers a break for two weeks was exactly what I needed to get back on the diabetes wagon. I’ve noticed since coming off the Libre that I’m testing more often, which can only be a good thing. I was testing up to 30 times a day on the Libre, and now I’m up to around 6 times a day back on my old finger pricker. Progress!!
Screen Shot 2016-06-07 at 8.02.14 pm.png

I tested six times during a netball game and prevented a hypo. Success! (We still lost though)

Considerations

  • the cost – I know it can’t be avoided, and it is amazing technology which comes at a price, but at this point in my life on a para-professional wage I can’t afford to have it full time. In a few years when my pay rise comes, I’ll be a regular customer, but for now I’ll be using it as a “get Georgie out of burnout” tool
  • not a CGM – this is really important to remember. The Libre is not a CGM. It is a different system, with different positives and negatives, and what may work for one person with the Libre may not work for another. It’s Flash Glucose Monitoring, so it’s intended to replace finger pricks. It doesn’t have the inbuilt alarms or communication to your pump that a CGM does, because it’s not a CGM. If you’re someone that loves the CGM alarms and integration (I don’t), the Libre may not be worth your time.
  • reliability – there were a few times that I’d go to test and it wouldn’t work. After talking to a few others, it seems as though this happens when you’re super hot or you’ve had a big change in body temperature. It would only be grumpy for a minute or so though, so not a big factor for me.
  • stickiness – Are you like me and sweat like a middle-aged marathon runner every time you engage in any physical activity? If so, and you like the sound of the Libre, invest in some Rockadex, or at least physio tape. I sweat A LOT, and after ten days my Libre started to peel off and I had to ask my housemate to stick it down with tape for me. I went around for the next four days looking like I’d sustained a perfectly circular upper arm injury.
  • non-hackiness – You can’t trick the Libre into continuing past the 14 days expiry like you can with the CGM (my DNE always covers her ears when any PWD talks about this!). Trust me, I’ve tried. Once the fortnight is up, that’s it.

Top tips!

Placement – only the upper arm has been approved, and when I insert my second Libre I will go much more towards the underside of my arm. There’s less risk of you bumping it when it’s tucked securely under your arm. It hasn’t been approved for anywhere else, but if you were hypothetically going to try another place, I have hypothetically heard that it works well there too. Hypothetically. 

Insertion – it doesn’t hurt at all!! I’m a sook with pump site insertions and I was nervous, but I felt nothing. I would advise inserting it before bed, so it has time to warm up and you can start your day with accurate BGLs!

Verdict?

I love it. For someone like me whose main barrier to management is testing, the Libre makes it so easy. Again, for my lifestyle, which involves a lot of exercise and activity, the trends are invaluable. I love that it’s small, I love that it’s easy – I just don’t love that the price is a barrier for me and many others. Hopefully future Georgie will be able to afford it, and for now I’ll dig into my savings every few months when I need some bionic blood test help.

 

*Disclosure (taken straight from Renza’s blog as I’m too lazy to write my own and it sums it up perfectly).

DX2Sydney was being coordinated and run by Abbott Diabetes Care. The costs for me to attend the two day event (travel, accommodation, meals and transfers) were covered by Abbott. All attendees received Freestyle Libre products (one scanner and two sensors) so we could trial the new device. 

There was no expectation that I would write about the event or my thoughts of the device. Abbott may have paid for me to attend, but they did not pay for my words on this blog, social media activity or anywhere else. I like to share, so that’s why I decided to write about my experience. 

Tips and Tricks

Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organise supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

The tricks and tips you learn from people with diabetes are always going to be different to the ones you learn from HCPs. Ours are usually a little bit more…unorthodox.

If you want to learn things like how to keep on track with your prescriptions or remember if you’ve already taken insulin, I am the wrong person to ask. RUN. RUN AWAY NOW. MY FORGETFULNESS IS CONTAGIOUS. Seriously, my life regarding that aspect of my diabetes looks a little like this.

clumsy.gif

STOP IT. TOO MANY THINGS TO REMEMBER. Thank god for the history function on my pump and Post-It notes. I’ll be reading every post on this topic to pick up some tips from everybody else!

However, there are a few things that I’ve picked up over the years, and they’re things that you’re not told at diagnosis, and wouldn’t expect to be. Best bras for pump wearing? The educators rightly have more important things on their mind! They’re little things, but there’s room for shallow advice in this space too. Sometimes it’s the little things that can really make a big difference. Disclaimer – everything I say here is advice from a 20 something type 1, and is intended as something to consider, not medical advice. Don’t take it as gospel and don’t be stupid about it, always be safe!

Tip #1: If you’re pumping, choose your bras carefully.
If you wear a bra and use an insulin pump, chances are your pump will end up in there 98% of the time, especially if you’re blessed (or cursed…) with a large chest like me. It’s so convenient, it just sits there so neatly…EXCEPT IT RUINS YOUR BRAS. I didn’t know this for years – I was told by diabetes friends only last year that the reason my underwire would always break through at the bridge/centre panel so quickly was because I clipped my pump there every single day. I just thought I was putting them on too enthusiastically…if you’re pumping, the best bra to buy is a well made one with a high bridge, so there is room to clip your pump and less chance of it a) breaking through and b) dangling down and giving you a weird shaped beeping growth in the middle of your chest. Buy the sexy low-bridge bras too, we all need some gorgeous lingerie,  just don’t expect to clip your pump there (but if you’re buying a sexy bra, the pump won’t be there for long anyway, am I right ladies?)

Tip #2: Don’t match your cartridge buying with your inset buying.
This tip also took me wayyyyyy too long to figure out! For those playing at home with a healthy pancreas, a cartridge is what the insulin is in inside your pump, and an inset is that cannula-y thing with the tube I insert into myself every three or four days. When I started pumping, I would fill up my insulin, insert my set, then once I was due for a set change I would throw away both of them. WHY?! Pump supplies cost a lot, I was throwing away money! When you finish your cartridge, keep it! Re-use it, fill it up again, chuck that sucker in, use, take out, and repeat. As a diabetes friend once said to me, “Keep going until it won’t!”. Re-using this cartridge means you can order multiple boxes of insets and only 1 box of cartridges, saving you a massive amount of money. Don’t think you need one box of cartridges to one box of sets! Obviously keep it sanitary though, don’t do a me and have a cartridge needle and cap rolling around at the bottom of your bag for weeks…

Tip #3: Be friends with a Physio – they have the best tape
I once texted a physio friend of mine to “Please bring tape! My site is falling out and cbf doing a site change!” before a night out, and she brought the wonder-tape. The tape to end all tapes. This tape is easy to rip and sticky as hell, and it’s always in my handbag in case my temperamental set thinks I’m getting too sweaty and tries to fall off. I have no idea what it’s called, but they use it on the wards and the best thing I’ve ever encountered. That’s another tip – tip #3.5: have tape with you. There is nothing worse than having to go home because your site peeled off. Stick that sucker down and don’t let it interrupt living your life!

Tip #4: Invest in a proper diabetes ‘clutch’ 

Before I bought my ‘Combi Clutch’,  I would be that person who went everywhere with a massive handbag. Honestly, it looked like I was a mother of five with a bag full of baby wipes and spare clothes. Buy a purse that you can take out with you and pretend that you’re one of those people who just has their keys and phone. Is your mind ready to be blown?

You have a purse like this…

2016-CombiClutch-760x984-Red-Back-GoldenZipper-510x652

Nice right? Super cute! Wait, let me just get my card…

2015-CombiClutch-760x984-Open-510x652

BOOM! This baby carries your diabetes stuff, but also has places to put your cards, cash, and sneak in two hypo serves. This baby will change your life, you can just pop your purse on the table like a normal person and not worry about waiters tripping over your gigantic ‘Mum bag’. Mum bag no more. I’m not being paid by this company, I just really like their clutches (If you’d like to hire me to spruik your products, I’m your gal!)

Tip #5: If you’re getting burnt out, go back to basics
My DNE taught me this one, and it has served me well. If you’re sick of diabetes and want it go away, the next best thing to completely ignoring it (not recommended…) is to go back to basics. Set injections, set meals, and let it fade into the background as you piece yourself together again. This may not be for everyone, but this really helped me last year when I was completely burnt out. For a week, I just injected set doses, ate the same thing, and tested the minimal amount. It gave me time to get myself back in the right headspace – my eating habits were boring, sure, but by the end of that week I was rested enough to attempt to get back on the diabetes horse.

 

 

 

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.

 

Language and Diabetes

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

Language is so important, in all its forms. At risk of delving back into my Language Analysis lessons (if my Year 10s hear me say “…but how is that persuasive?” one more time they’ll probably stage an uprising), one word can change the entire meaning of a sentence, and can create incredibly strong emotions. In terms of diabetes,  I agree that there is a real need to use “non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes”.  Check out the Diabetes Australia Language Position statement if you’re up for five pages of interesting reading – BUT I appreciate that not everyone is as language-nerdy as me (What do you mean, you don’t want to read a 500 page book about the power of language? What do you do for fun then?) SO instead I’m going to summarise my favourites really quickly for those of you who read my blog who don’t have diabetes. Think of this as a ‘go-to guide’ for talking about diabetes. For those of you who do have diabetes, where do you stand? Do you agree with the popular opinion on the type of language that should be used? Sometimes I don’t!

Before I start though, I want to make something very clear. Language is a personal choice. What works for one person with diabetes may not work for another. When in doubt, ask before speaking! If we call you out on your language – take it and learn from it. It’s not your place to dictate our condition and how people talk about it. 

Diabetic: Try person with diabetes instead . This word irks a lot of people with diabetes, as many people feel that it’s this massive label stuck on us – you’re a diabetic, and nothing else. However, I feel differently – sort of.  I refer to myself as a Type diabetic when I’m talking about ME, and nobody else. The only person allowed to refer to me as a diabetic is me. This is simply classic Australian linguistic laziness – who can be bothered with seven syllables when you can say it with five? I have started saying this less though, as I heard some nurses talking about ‘the diabetic in bed 5’ when I was last in hospital and it really bugged me. Am I a hypocrite? Absolutely, deal with it.

Testing: A test has negative connotations, and sometimes our life feels like a test that we’re constantly failing – “Why are your numbers all over the place? Aren’t you trying? You need to test more!” Trying hard does not correlate to perfect numbers with diabetes. I can try as hard as I want, but sometimes my pancreas just likes to get hectic and fuck things up. Try check, because that’s what it is. We’re just checking, dosing insulin, and getting on with life. You can’t pass or fail diabetes – you just live with it.

 Compliance:  OH MY GOD I HATE THIS ONE SO MUCH. A lot of my nurse friends use this one, so I’m guessing it must still be taught in university. STOP USING IT. WE CALL THIS THE “C” WORD. I’ve called a few of my friends out on this (some I’m still summoning up the courage to say it…), and I will not stop. Your relationship with someone who has diabetes is different, you are a team, not a parent telling a child what to do. A toddler refusing to go to bed is non-compliant, a 24 year old woman who is struggling to get her sugars under control is simply struggling. “Compliance” infers that we have no input into the decisions we make every day, when the complete opposite is true. How many people do you know that would make up to 100 decisions a day about their health? It also implies that we are uncooperative, and doing this on purpose. No one with diabetes wakes up in the morning and thinks “I’m going to screw up my body today!” – there is ALWAYS a reason that something is going on, so investigate! You are a team, so try inclusive and collaborative language – “She’s struggling mentally, so we decided to do minimal testing and go back to set dosing” instead of “She’s non-compliant and SO annoying, so I told her to just try testing 4 times a day with set doses.” This also goes for statements like “I’m treating this patient”…NO. You’re not stitching me up or inserting a port. You are working with me. This implies that I have no active say in my disease, which, as outlined above, is 100% false. I am an expert in my diabetes, and you are the HCP who I collaborate with to try and manage it as best as I can.

Poor control: This is judge-y as hell. “Poor control”, “good control”, “excellent control” – since when were blood sugars a moral judgement?  I still remember hearing the nurses at handover one night saying “She has terrible control”, and crying quietly to myself as they left. I’m not a terrible person, and I didn’t decide to have diabetes that refuses to play by the rules. What was hard about saying “She’s struggling with her management”? Language has so much more power than you think it does! What’s more, “diabetes control” in itself is an oxymoron. Diabetes is not something you can control, it’s something you can attempt to manage. As stated above, sometimes diabetes just likes to play dirty and there’s nothing you can do about it. Theoretically, ‘controlling’ blood sugars is great, but diabetes is never a simple equation of check, dose, go. If you set yourself up to control it, you will ALWAYS be disappointed, as it’s impossible. Just take every day as it comes, and try to manage or influence those pesky BGLs. 

 

Honestly, the most important thing to remember is that language is powerful, and language reveals attitudes. We are not being needlessly nit-picky – diabetes affects every single part of our life, and as human beings we deserve to be talked about with respect. If you don’t respect the person in bed 5, you don’t deserve to be working with them. Is that too strong a statement? Maybe (not really). But just as I would never use stigmatising or judgemental language about a student, I hope you would never use that language about me. The minute I find myself using this sort of language about my kids, is when I need to leave teaching, and I think that should go for anyone who works with people with a chronic illness as well. The way that someone talks about diabetes is important, and acknowledging our expertise in our own disease is the first step to developing the collaborative healthcare system that is so needed in the chronic illness area.

Of course language changes over time, that is the incredible thing about it! What was appropriate ten or twenty years ago may not be now, and it’s our responsibility as world citizens to ensure that we are respectful to each other as we possibly can be. If you reflect on your language, learn from us and respect us, we can work together to ensure that there is no more of this resentment between both parties. Take language seriously – it’s personal and so is diabetes.

The Other Half Of Diabetes

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

If you’ve been following my blog for a while / know me in person, you’ll already know my opinion on this topic. Let me just get on my soapbox, give me one second…

getting_on_my_soapbox_by_aniketosen-d5and0i.gif

DIABETES FUCKS UP YOUR MENTAL HEALTH.

Just think about it – there has to be a reason that 50% of us are diagnosed with depression at some point. There’s a definite reason that one in three women with Type 1 are diagnosed with an eating disorder. Having any chronic illness is hard on your mental health, there’s no doubt about that. However, having an illness where you are constantly monitoring yourself, where your entire day revolves around numbers, and where you can be berated for things entirely out of your control means that keeping your mental health in check can sometimes feel like running through mud whilst having objects thrown at you from every direction.

Diabetes has a huge impact on my mental health. I try to not let it get in the way, but the fact remains that combined with other aspects that are uniquely me, my diabetes blows everything up and makes it harder for me to keep in a healthy mindset.

I’m not saying that having good mental health is impossible with diabetes – I know many people with diabetes whose emotional wellbeing is so incredibly healthy it would make anyone jealous. I just wish I knew how to get there, as my own mental health mimics my diabetes i.e. it is an unpredictable rollercoaster. Some days,  I’m happy as anyone could possibly be, and drive to work with the windows down and music blaring. Other days, I withdraw, don’t want to talk to anyone, and end up crying at the supermarket for no apparent reason.

What came first, the mood or the BGLs? Is it my high sugars that are making me sad, or am I sad because I can’t seem to control my sugars? There may be aspects I may not have investigated yet – maybe I haven’t fully accepted my diabetes, and I’m still struggling with it (let’s NOT open that door, just imagine the sheer amount of tissues and comfort food I’ll get through).  Maybe it’s that pesky thing called genetics, and the best hope I have is to just continuously try to keep on top of it and blame my family for blessing me with screwed-up neural pathways.

My mental health always seems to improve when I’m around my friends with diabetes. I gave one of my friends with diabetes a call when I got my latest hba1c – I was walking through the Alfred Hospital in tears, and intermittently sobbing “I don’t understand…I try so hard…why am I such a shit person”. After yelling through the phone “YOU’RE NOT SHIT YOU STUPID IDIOT”, this friend and I caught up for dinner where she not only listened to my fears, but gave me perspective and assured me that we all feel like this sometimes. Having someone else tell you that diabetes is fucking difficult at times and that trying your hardest is all you can do is incredibly comforting. There’s something uniquely reassuring about this coming from another person with a lazy pancreas, as opposed to a psychologist who takes a lunch break without a finger prick or insulin injection. Psychologists know their shit, but so do my friends with diabetes.

I guess that brings me to my one tip for getting out of a diabetes funk – even though taking advice from me about diabetes mental health is like taking advice from Donald Trump about international policy (ooooo snap).  Dealing with the mental aspect of this condition is made so much easier through talking about it, and talking about it with people who ‘get it’. This seems to already be a theme running throughout my DBlogWeek posts, but that’s probably because it’s so important to me. At this current stage in my life, I don’t have the mental energy to campaign and advocate to a world that seems hell bent on throwing me into a box. I’m spending my energy on trying to keep myself healthy and happy, and to do that I need my diabetes friends. To keep yourself happy, you surround yourself with people who love you – so why should keeping my diabetes half happy be any different? Don’t stay silent and suffer in silence – because I guarantee you that there is someone else out there who is feeling exactly the same as you. 

 

 

 

Message Monday

It’s Diabetes Blog Week 2016 this week, and even though I’m up to my ears in Masters work and marking assignments,  I wanted to take part again. Writing is therapeutic, as is reading the many blog posts that continue to stream in every day!

Let’s kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

A diabetes message?  There are so many messages about diabetes that I would love to announce from the rooftops, but I guess you just have to pick one right?

My blog says a lot of things. I try to write about things that are personal – not too personal, I don’t want my deepest darkest secrets out there for everyone to see – but personal enough so someone out there can empathise and realise “Hey, I’m not alone in this!” There is nothing more liberating when you have a chronic disease than the first time you realise that you’re not the only one who ‘does that’. Until I started to tweet and blog, I honestly thought I was the only person with diabetes who had numbers like mine, or who hated BGL testing with an absolute passion. In my limited experience, people tend to be more honest online, as they’re hiding behind a computer screen and don’t have that need to ‘feel better’ than anyone else. When you’re just a username and avatar, the dialogue that can happen is nothing short of illuminating.

If there is one message that needs to go out into our diabetes blogosphere, it is that you’re not alone. Type 1 diabetes can be such an isolating experience – I know nobody in my day-to-day life with type 1, and if I hadn’t reached out four years ago, I’d probably still be plodding along, dealing with t1d and all its associated crap by myself. That’s why I blog – I share things that have made an impact on me, or thoughts I need someone else to read, or rants that I just can’t repeat in the staffroom on a Wednesday lunchtime. We need a huge assortment of blogs, because there is a huge array of opinions and experiences out there. No one with diabetes is the same, so why should online diabetes media be any different? I want to share my experiences on this blog so that someone, somewhere, might read something while they’re flicking through the #dblog tag one night and think “Hey – I feel just like that! It’s not just me!” By providing a unique voice, I’m also providing a tiny sort of community. I’m sure I’m not the only 20-something Australian woman out there with type 1 diabetes and a reality TV addiction, so why pretend like I am?

It may be your diabetes, but we’re all in this together. 

 

We don’t need no education

Diabetes is an invisible illness, but it’s also very visible. There’s no subtle way to test your blood sugar or inject insulin, and it always results in questions. I love questions, I welcome them – but I’m always conscious of talking about it too much. I couldn’t put my finger on why I become anxious about talking all things diabetes until last night, when I was at a bevs and bonfire night. My pump was hanging off my jeans (easy access so I could bolus for that cheese and dips platter…), so it was more visible than usual. As I bolused for a dessert, a few people started to ask me questions about it.

“What is that?”

“So does that test your blood sugar?”

“Do you always have to wear that?”

I was having the BEST chat, and as we continued to talk and I showed them where my cannula was, I realised why I always steer the conversation away from my diabetes before this point.

People usually start to get rude.

These people were different. They were respectful of my knowledge. They were actively listening to me – they weren’t waiting to jump into the conversation with a story about their diabetic grandma, or how they’d ‘rather die’ than have diabetes. They were genuinely interested, and soaking up everything I was saying.

The difference between this conversation and others I usually have was staggering. By this point, I usually have a male man-splaining the finer points of his cousin’s great-aunt’s ‘diabeetus’ to me, or a woman dressed head to toe in Lulu Lemon lecturing me about the evils of sugar. People always tend to make the conversation revolve around them, and 90% of the time I end up sitting there listening to someone explain my own disease to me. I’m exhausted from trying to correct people – and when they’re that adamant, they don’t want to be educated anyway. I’m now a master at sculling my glass of wine and saying “Oh my drink is empty, please excuse me!” and avoiding them for the rest of the night.

This conversation was refreshing. Type 1 diabetes was the only thing these people wanted to know about, and were genuinely curious about my day-to-day life. The only comments they made were complimentary – things like “Wow! Your brain is crazy!” when I showed them how to carb count, and “You guys must be so resilient” when they realised that we inject ourselves all the time. To be honest, I walked out of the party feeling like a bit of a legend. Diabetes is my everyday, but I often forget that it’s actually a big deal. We ARE legends, we do so much everyday to keep ourselves alive and healthy, and it’s nice to be reminded of that sometimes. This is the kind of ‘educating’ I could do every day – to people that just want to understand. Education and listening has to go both ways.

Note to non-diabetics – if you don’t have diabetes, don’t explain it to me.

#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?

scared.gif

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.