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A couple of weeks ago, I met a young child with diabetes. This was one cute kid who was clearly going to be boss of the world when she grew up. And a zoo keeper. I know this because she told me as much.
She has lived with type 1 diabetes for over half her life – she told me that too. And she also told me that now, as a big grade one kid, there were things that she was doing to take care of her diabetes on her own.
‘Want me to show you?’ She asked me.
‘You bet!’ I said
She checked her BGL for me, talking me through it. ‘I use this to get the blood out of my finger. And then the blood goes here. Did you hear that beep? And here is the number. It says 8. That means I don’t need to do anything right now.’
Then she went off on a tangent and counted to 125 for me, which I told her was very impressive.
She showed me her pump and was very excited when I showed her mine, although disappointed that mine was boring and charcoal while hers was covered in a bright pink skin. ‘You should buy one for your pump. Your pump is not very interesting. It would be much nicer if you looked at something bright instead of boring. And more fashionable.’ I think she tut-tutted me as she shook her head at my lack of inventiveness when it came to pump decoration.
I won back some points when I showed her the bright purse I keep my meter in. ‘I guess that’s nice,’ she told me, and then found something else to show me.
‘I eat these lollies sometimes when I am low. My teacher has a big jar of them in the cupboard in the classroom. She has to keep them on the top shelf because I caught Matty eating them one day. He got in trouble, but it’s not his fault that he doesn’t know that I need them when I go low. Where do you keep your lollies?’
I told her that I have them in my bag, usually. And on my bedside table. ‘In a jar with a blue lid’, I explained, suddenly desperate to win some cred with this kid!
She nodded and seemed to approve of this answer. ‘Blue is okay,’ she announced.
‘Do you know that I am going to be a zoo keeper when I grow up?’ She asked me.
‘That sounds like a great idea and a very cool job,’ I said, and I told her that I have always wanted a pet tiger.
‘You can’t have a pet tiger,’ she said, sternly. ‘They are not good pets. You should know that.’
I told her she was right.
‘If I’m not a zoo keeper, I might be a doctor. I’ll help kids with diabetes. That would be good too.’
‘Sure,’ I said. ‘Maybe you might find a cure for diabetes.’
She looked at me with what I can only describe as the sassiest look I have ever seen.
She shook her head. And spoke to me very slowly, like I was a bit simple, staring at me straight in the eye.
‘Why does everyone think that a cure is the best thing? As long as I can be a zoo keeper, I don’t care about having diabetes. Tigers don’t care if I have diabetes.’
This kid? She is 6 years old. And she has it together more than most adults I know.
I read this piece by Mike Hoskins (mate, fellow coffee addict, all ‘round good guy) over at Diabetes Mine yesterday where he looked at the use of the word ‘diabetic’. The piece is actually from December last year, but I missed it in the excitement that was New York in December.
I don’t use it. I don’t refer to myself as ‘diabetic’ or ‘a diabetic’. I am a person with diabetes. As far as economy of language goes, it’s a pain, especially when you only have 140 characters to play with. But PWD seems to be pretty widely recognised in my circles.
Perhaps it’s been drummed into me at work, perhaps it’s political correctness gone mad. Regardless, you will not read or hear me use the word diabetic as a label for myself or others with diabetes.
Mike’s article was quite timely as last week I had a little incident that got me more than a little heated.
I was on the phone with VicRoads. This was not an enjoyable experience by any means. I was cut off four times; the four people who answered my call(s) gave me incorrect information and then, when I asked to speak with a medical review case worker, I had someone return my call who was incredibly rude, aggressive and disrespectful. She constantly interrupted me and refused to answer my questions. And gave me the wrong information.
(For context – I was trying to get some clarification as to why I was required to submit an eye exam report along with my medical review.)
‘I was wondering why I am required to submit an eye exam report,’ I explained as the reason for my call.
‘Insulin-dependent diabetics have to must submit a biennial eye exam,’ was the response.
I asked where this is stated in the Guidelines. She would not (could not?) answer this question. She just kept saying (very aggressively) ‘It is a requirement for all insulin-dependent diabetics.’
Now, I am willing to concede that I was pissed off and that if I didn’t have my back up I probably would have let things slide and been happy to continue the discussion about our differing interpretations of the Guidelines.
But I was pissed off. I was annoyed that the medical officer was being rude and patronising and not being helpful. And I was annoyed that she was giving out false information – information that if people didn’t know better could cost a lot of time and (potentially) money for no reason.
So I stopped her.
‘Excuse me,’ I said (and I promise I was being polite and not patronising). ‘Please don’t use the term diabetic. I don’t like it. I would prefer if you used person with diabetes.’
Yes, okay. I know how prissy this sounds. I know how pedantic and, quite frankly, nit-picky I was being. I really do.
But she was being rude and she was spitting out the word as though it was something dirty – that there was something wrong with me.
Without missing a beat, she replied with ‘But you are. You are a diabetic.’ She almost yelled it at me.
The conversation didn’t get any better.
I have diabetes. I own it. I am out, loud and proud about it. But it’s my diabetes and my rules. And my rules include how people speak about me and about my diabetes. They do it with respect, they do it politely and they show courtesy. None of these things were demonstrated. The word ‘diabetic’ was being used here spitefully, and as a label that I felt diminished me.
I don’t care if people with diabetes refer to themselves as (a) diabetic. And I don’t even really mind when other people with diabetes refer to me as (a) diabetic. But it is never done with any judgement. It never pigeon holes someone. And it is never done disrespectfully.
Words matter. I say it all the time and I realise it more and more each day. While it’s a highly personal choice as to the words we each use to describe our ‘diabetes-selves’, using language that is accepted by everyone – and doesn’t have the potential to insult – is clearly a better way.
And here it is. Again. The Diabetes Australia Language Position Statement. And yes, I sent a copy of this to VicRoads as soon as I got off the phone.
This morning, just before stepping into the shower, I pulled out my cannula planning to resite once I was dried off.
I got in the shower, a million things going through my mind: (How is it Monday? I feel like I’ve hardly had a weekend. Oh, that’s right; I’ve hardly had a weekend- I worked Friday night and all-day Saturday. What does the kidlet have on at school today? Is it art? We need to buy dog food. Did I organise for the kidlet to sleep over at my parents tomorrow when Aaron and I see Sting? STING!!!!! I love Sting. How AWESOME was it to see Sting last Thursday night at Bennett’s? I want coffee. What’s the weather going to be today? I should download ‘Mozart in the Jungle.’ Sting tomorrow – yay! Oh – I need to keep promoting Spare a Rose, Save a Child this week because it’s Valentine’s Day on Saturday. Sting tomorrow night….)
And then I looked down and saw that the water pooling at my feet was bright, bright red. It took me a moment to realise what was going on – my head was still thinking Spare A Rose and Sting – and in that time, I watched the swirling pattern the red water was making as it moved around me and made its way down the drain.
Involuntarily, my right hand flew to my right side. I looked down and saw the blood gushing from where, just a few moments ago, I’d removed the cannula.
I pressed hard to stem the flow of blood, my hand getting covered with red.
The blood stopped pretty quickly. The water at the bottom of the shower turned from the Russian Red colour of the MAC lippie I wear most days, to pink, to clear again.
Of course, I didn’t lose all that much blood. But it looked pretty impressive. And I thought about how nonchalant and calm I am when things like this happen.
I continued with my shower, my mind drifting again, thinking about how the word ‘sting’ is frequently used in diabetes marketing materials. And then thinking about the Sting gig tomorrow night. And then thinking about blood. And the slight sting I could feel where I’d been bleeding. And roses. My thoughts were all muddled. But I knew that there was something tying them all together. I just couldn’t work out what it was.
It wasn’t until I was standing at the café near work waiting for my morning coffee that it hit me. I remembered an obscure Sting song from a compilation album of pirate songs and sea shanties. Sting sang one song on there. And it was called Blood Red Roses. I’ve not heard that song for years and as soon as I got to work I found it on YouTube and played it.
Sting and roses. That pretty much sums up this week.
Only a few days until Valentine’s Day, but plenty of time for you to Spare a Rose and Save a Child. Remember, for the price of one little rose, you can provide a month’s worth of insulin and save the life of a child.
Sting with Jo Lawry at Bennett’s Lane last Thursday night.
Last year, I wrote a piece for Mamamia’s health and beauty site The Glow about diabetes-related eating disorders, specifically insulin omission, manipulation or restriction for the purpose of weight loss. This is sometimes known as ‘diabulimia’.
This morning, when I checked my Facebook feed, I was really pleased to see that Mamamia had reposted an edited version of the piece on their website. Raising awareness of this issue is, in my opinion, really important, so to see it in mainstream media is a very positive step.
I am dismayed, although not really surprised, at some of the comments following the reposting of this piece. Today’s comments echo those that followed the original post in November last year.
Some commenters have called both me as the author and Mamamia irresponsible for writing about, and then publishing, the post.
I refute that and have done so ever since I started doing work in the area of diabetes and eating disorders more than seven years ago. This wasn’t some self-serving project that I started. I started this work – which including seeking funding to conduct research and developing a consumer resource – because it was clear that it was an issue of concern for many people living with type 1 diabetes. More so, many people who were in fact manipulating insulin to lose weight
The first time I presented our research and the resource we developed (in close consultation with people living with diabetes) at a healthcare professional conference, I was met with some resistance. One HCP stood up and told me that we had just written a ‘how to’ guide – that is, we were showing people with type 1 diabetes just how they could use insulin manipulation to lose weight. She said that she would not be promoting the resource.
And this is the gist of some of the comments on the Mamamia Facebook page today.
I maintain that this thinking is seriously flawed in many ways. It is assuming that only a small number of people are engaging in this practice and that not many people know about it. It suggests that the resource – which focuses on how to begin to discuss the issues and where to find help – is the first time that people reading it will have heard about insulin manipulation for weight loss.
However, this is just not true. The research conducted by Diabetes Australia – Vic in 2008 showed that 60 per cent of respondents (women with type 1 diabetes aged between 18 and 35 years) had omitted or restricted insulin at some point to control weight. And of those, one third did so on a daily basis. This finding was consistent with international research.
That’s not a tiny number.
So why do I think we should be openly talking about this issue? There are so many reasons.
When we don’t talk about things in an open and safe way they go underground. People start to feel that they are the only ones doing it and subsequently don’t talk about it. They feel isolated, shamed, stigmatised and unsure where to go for help.
We need to be talking about it so that HCPs understand that this is a serious and common issue – and to develop strategies to regularly screen for these behaviours and assist people who are engaged in this practice.
The research showed that health professionals working with people with diabetes are ill-equipped to deal with diabetes-related eating disorders. In fact, the same research showed that 85 per cent of those surveyed had never even been approached by a healthcare professional about insulin manipulation, and of those almost 60 per cent reported manipulating insulin for weight loss
We are wasting precious time and energy debating whether or not we should be talking about ‘diabulimia’. Instead, our focus should be on how we talk about it and what we do to treat it. We should be removing shame and stigma so that people with diabetes don’t feel embarrassed or fear judgement if they tell their HCP that they are manipulating insulin to lose weight. We should be removing barriers that prevent people seeking help.
I would argue that in this case being irresponsible has nothing to do with trying to shed light on diabetes-related eating disorders. I believe it is irresponsible to think that not speaking about it – not highlighting it as a serious issue – is that same as actually doing something about it.
So today, I urge you to share the article with your networks and start and contribute to discussions. Don’t sweep this under the carpet. Talk about it. Get it out there.
Sting is in Melbourne at the moment, getting ready to do a couple of concerts. Last night, he just happened to pop into Bennett’s Lane in Melbourne and sang a song with Adelaide musician Jo Lawry who is in his band. Here they are together singing one of my favourite Sting songs ‘Whenever I Say Your Name’.
I discovered my love of Kate Spade New York on one of our trips to the Big Apple. Wandering around Soho, we came across the whimsical corner store and in I went. I was hooked by the quirky, fun, stylish clothes and the beautiful accessories.
Since then, I’ve bought a couple of bags and some other accessories. My favourites of all the Kate Spade things I own are the gorgeous jingly-jangly bangles. I have at least one on most days, coordinating – or violently clashing – with whatever else I am wearing, frequently livening up my ‘Melbourne-Girl-Black’.
But the thing I love most about them is the secret message imprinted on the inside of each bangle. I actually didn’t know about these inscriptions until quite recently when it was pointed out to me by one of their sales staff.
For years, I’d been wearing them without knowing that there was a cute or inspirational or just plain silly little message concealed away. The inscriptions says thing like ‘It’s written in the stars’ or ‘Life’s a breeze’ or ‘Here comes the sun’. But they are hidden away. No one would ever know.
People are often surprised to learn that I have diabetes. (There was one time that a certain former Health Minister who may or may not now be PM – for a few more days anyway – looked surprised when told that I have diabetes and responded with ‘Really? You don’t look diabetic’.)
I’m not sure what people with diabetes are meant to look like. I have dozens and dozens of friends with diabetes and I’m yet to find the common characteristic or style that we all have in common. You can’t ‘tell a person with diabetes’ just by looking at them. Despite what Sarah Wilson says.
I was reminded of this the other day when I caught up with a friend I’d not seen for some time. Facebook updates have kept me across what she has been up to, but I was surprised when she told me that she had been having a really tough time, ‘diabetically-speaking’.
She didn’t tell me what had been going on until we’d been speaking for some time, talking about the great things she has been doing at work, a recent trip to Queensland and plans for a further family holiday to the U.S. We spoke about my family holiday and we chatted about our kids heading back to school.
And then she told me the rest of what she had been managing and it was huge. I looked at her and then said four stupid words ‘But you look fine.‘
I immediately apologised. Of course she looks fine. Diabetes is invisible, even at its nastiest. I think of the most horrid diabetes things I’ve had to deal with and they are relatively minor. Yet even at the most difficult of times, most people don’t know. Unless I tell them.
If I had a secret message inside of me which explained my ‘diabetes state of mind’, it would change every day. Most of the time it would be probably say something like ‘Yep, it’s still there!’ And nothing more. But other times it would say ‘today is tough’ or ‘I want off this BGL roller coaster’ or ‘I don’t want to do this anymore’. Because that is how I feel inside some days.
Today, the secret message in my bracelet says ‘Like Hotcakes’. I’m pretty sure it is referring to the saying ‘Selling like hotcakes’, however I’m going to interpret it as a command. Lunch is sorted!
Today’s arm candy.
Things I know to be true:
- It’s February already.
- Melbourne seems to have misplaced its Summer.
- As much as I loved being in New York and had the best holiday ever, it’s always swell to come home.
- And having Melbourne coffee running through my veins is making me a happy chicken.
- Being at work is not the worst thing, especially when there is a year of really exciting things on the horizon.
- I am confused that my computer does not recognise the word Nutella and wants to correct it to Nigella. Which is equally awesome and sexy.
Also – the internet never disappoints.
Frocking brilliant
Sometimes it’s tough for a dame to find a place for her insulin pump. Bra? Good in theory, but what if you’re not wearing a bra? Or your bra is being uncooperative? Thigh strap? Again, great idea, but not great if the thigh strap comes loose and starts rolling down your leg and you end up in the Ministry of Silly Walks. Also, it can look like you are packing heat. Or you end up using ugly (although effective) Tubigrip. Pocket? Usually produces an unsightly bulge that may have people searching for a matching Adam’s apple.
What’s the solution?
Read here about some clever folk who have come up with a rather dashing frock with a secret little place to hide a pump.
And who doesn’t love a LBD? Can’t wait to get my hands on – and body into – one of them! Available soon – keep an eye out here.
Two spreads in one
There are many tough decisions in life. Lennon or McCartney? Coffee or tea? Jaffas or Malteasers? (Both, obviously.)
And the most difficult: peanut butter or Nutella? Can’t decide? Then have both! In domestic goddess mode on Sunday (full skirt, frilly apron, high heels and tiara) I made these.
And they are were good. And totally bolus worthy!
Here’s the recipe. (And here’s a tip. When freezing the Nutella before making the biscuits, do half on one baking sheet and half on another. Take out one baking sheet, make half the biscuits. THEN take our the second baking sheet and make the second half. Otherwise the Nutella starts to melt and ends up all messy and all over your fingers and you have to lick it off your fingers and then freeze more.)
Oh, and while we’re talking Nutella, let me introduce you to my happy place:
Support DA-Vic and enjoy the Melbourne Food and Wine Festival (WIN WIN!!)
This year, Diabetes Australia – Vic (disclaimer: my place of employment, but I am writing about this because I want to, not because I was asked. Also it is about food. And wine. So there’s that too.) is the charity partner for the Melbourne Food and Wine Festival. Some people may think that this is an odd partnership, but actually, the messages of both DA-Vic and MFWF are strongly aligned. It’s all about people taking an active role in managing their health – regardless of if they are living with diabetes or not. And having a good understanding of the food we choose to eat is part of this.
It’s also a great opportunity to raise awareness of diabetes, reaching people we may otherwise not reach.
Now, everyone knows that I am not really an exercise fan. However, I can definitely get on board this. It’s literally a moveable – well moving – feast where participants take a walk around the Tan, stopping at stations for a delicious five course brekkie. And better yet, 5 per cent of ticket/registration fees will be donated to DA-Vic.
Noteworthy connections
Many of you may not know that in a former life I was a classically-trained musician. That ship sailed a long time ago and I no longer play music. However, my husband is a musician and music is a huge part of my family’s life.
I have always been interested in the link between music and health. The Greek God, Apollo, was God of both healing and music, so the connection has been around for a long time!
Music has been used as therapy in a variety of medical conditions from Parkinson’s Disease to recovery from stroke. I am not going to say the healing powers of music can cure diabetes (although I’m pretty sure some fool will tell you that). But, music can be a stress reliever. And for me, reduced stress means less erratic BGLs.
There are also strong links between music having positive effects on mental health as discussed in this information sheet from ReachOut.
I love this so much
I’ve shared this blog before here, but this post from Annabel over at The Understudy Pancreas is one of the most beautiful pieces of writing. Full stop.
I can’t begin to imagine what parenting a child with diabetes would be like, but Annie does such a wonderful job of explaining how her family do it.
The thing that I probably admire most is how Annie never, ever makes her daughter’s (Pumplette) diabetes about herself. She supports her daughter in the best ways possible, encouraging her independence, and being there for her – with what Pumplette needs. Great parenting advice all ‘round, really.
I wish I could reach into my computer and give you a huge hug, Annie. Your darling girl is so great.
Radio Deluxe
When we were in New York, we spent a very pleasant evening at Birdland listening to John Pizzarelli and Jessica Molaskey perform. It was a gorgeous gig, made even more wonderful when they dedicated a song to the ‘family from Australia’.
Each week, John and Jessica have a syndicated radio show (they claim it is ‘live from high above Lexington Avenue in the Deluxe Living Room’, and while I suspect it is actually recorded in a studio, I like to think of them in their living room at home, gazing out over the New York skyline, casually chatting into a couple of vintage microphones) and it is an absolute treat to listen to.
Check it out here. It makes a great soundtrack to the workday!
What do ‘patients’ really think? (Maybe stop using the word ‘patient’ to begin with…..)
British medical journal The BMJ has started a fascinating new series called Do you know what your patient is thinking? This is part of their patient partnership strategy and will hopefully help HCPs better understand all aspects of life with a chronic health condition – not just what …..
The first in the series, Why there’s no point telling me to lose weight, can be read here. New submissions will be published monthly.
Living Vertical
Steve Richert has lived with diabetes for 17 years. A couple of years ago, Steve wanted to show that diabetes hasn’t stopped him from doing what he wants, so he and his wife, Stefanie, travelled across North America and climbed for 365 consecutive days. Just like with diabetes, there were no days off.
I absolutely love the catalyst for this project. This is what Steve writes on the Glu website:
‘In 2011, I had lived for almost 13 years with type 1 diabetes, and despite the normal ups and downs, seasoned with occasional close calls, it had never stopped me from being me. In fact, it made me who I was. When I was on a trip to visit friends, Stefanie and I drove past a billboard aimed at fundraising for diabetes research. It made my blood boil.
It was a smattering of grim statistics and stock imagery geared to promote the idea that life with diabetes was no life at all—that we are weak and helpless victims of this condition. Before this point it hadn’t ever occurred to me that the message of being empowered had any place in diabetes. I didn’t know anyone else with type 1 diabetes and I assumed everyone just came to terms with it as I did. Seeing this billboard made me aware for the first time of how we are portrayed—and how that can impact someone.’
A film has been made of Steve and Stefanie’s adventure. You can read about and watch Living Vertical: Project 365 here.
Save a child…..
Thinking about Valentine’s Day? Don’t forget to Spare a Rose, Save a Child.
No four words sum up this campaign better than this ‘Flowers die. Children shouldn’t’.
Please donate. Remember the equation: One rose = insulin for one month. Multiply as many times as you can.
That’s all for now, folks. Happy Tuesday.
Click
The sound the applicator of my CGM made as the introducer needle pierced the sensor through my skin made me wince. It’s an involuntary response and not because of pain. The little pinch I feel as the needle shoots in is so insignificant it doesn’t really warrant a response.
My last sensor fell out in bed on one of the first nights of our holiday. The next morning as I removed the spent sensor from the transmitter, I decided that I wouldn’t put in another sensor straight away. And then after a few days of enjoying having one fewer device stuck to my skin, I decided that because I was spending so little time alone, I really didn’t need the safety net of a CGM. Plus I had no plans to try to tighten up basal rates or make any other adjustments.
More than five weeks and no CGM.
But the afternoon after we returned from New York, as Aaron was getting ready to go to a gig, I realised that jet lag would possibly be sending me to sleep before he got home. And I’d been chasing hypos all day – continually going low just as I thought I had managed to get on top of things.
I knew that it was time to get hooked up again to my CGM. I needed my safety net back.
So, I pulled out a fresh sensor, swabbed the back of the transmitter and with a click, the new sensor was attached firmly to me.
The clicking sound hit me with a force that surprised me. I actually felt it in the pit of my stomach – a sinking feeling. I felt my breathing quicken. What’s going on? I thought. I checked the site where the sensor had gone in and where I had fastened the transmitter. It looked fine. There was no pain.
I stood in the mirror, my top tucked under my chin and there, staring back at me, was the reason for this sudden unease. Two medical devices. My cannula on my right side, the pump tubing snaking its way up my chest to the middle of my bra where my pump was neatly tucked away, and my CGM sensor and transmitter just to the left side of my belly button.
I could suddenly feel the numbers, I could feel the data, I could sense the information that would soon be available to me. I could feel the vibrating of the alarms.
And the feeling of burnout – that darkness that lives at the pit of of my stomach – sprang to life after having lived quite dormant for a few weeks.
I felt overwhelmed and my sensor wasn’t even transmitting data yet! In fact, I hadn’t even hit the ‘start sensor’ button on my pump yet.
I sat on the bed and breathed deeply before grabbing a piece of paper and pen. I started to make a list of reasons to not get overwhelmed and distressed about reconnecting to my CGM.
I re-read the list and started to feel calmer. But I was surprised at just how sudden and intense the reaction was. I couldn’t really make sense of it either. I love this technology. I love the information it gives. I use a device that is incredibly accurate and reliable. I do feel safer when I have a sensor attached. And I know that, given the cost of running a CGM, I am very fortunate to be able to use it.
So why was I feeling dread instead of reassurance?
I’m not sure; I’m really not.
Later that night, I crawled into bed. It was still light outside – jet lag had indeed hit me! The kidlet was reading in her room getting ready to sleep. Aaron wasn’t home yet and still wouldn’t be for a while.
I started to read and before long, my eyes felt heavy and just as I was about to put my book down, my pump, lying loose in the bed beside me started to vibrate. I looked and saw the two arrows pointing down. I wasn’t low, but would be in about 30 minutes. I reached over and pulled two jelly snakes from the jar on the side table.
As I started to doze, I felt calm and relaxed, looking forward to a good night’s sleep, and woke on Australia Day feeling refreshed. I located my pump amid tangled sheets, and saw the CMG’s straight line. My hand moved to touch my CGM, sitting comfortably on my stomach. Doing its job. Nothing more. Nothing less.
I’m back at work today (pretty sure you can feel my delight in just those five little words). I know I am back at work because I am wearing a pencil skirt, tights and black high-heeled pumps instead of jeans, boots, a scarf, a hat, gloves and a puffer jacket with some sort of fur lining. Today I look like I am ready for work rather than ready for a day of wandering around New York.
But all is not lost. It’s been six weeks and I have a wonderful holiday of nothing but great memories and a photo album of nothing but gorgeous photos. So, onwards and upwards and all that.
Yesterday, as I sped around the supermarket, the onslaught of the next commercial opportunity hit me fair and square in the face. No, I’m not talking about Easter (I could act all outraged that there are Hot Cross Buns in Woolies, but we bought some and have been eating them, so that would be kind of hypocritical). I am talking about the festival of love – Valentine’s Day.
Valentine’s Day can go one of three ways for people. It can be a day of overt love declarations involving flowers, cards, poems, sky writing, gorilla-grams, stripper-grams (don’t judge), candle light, champagne, walks on the beach; it can be a day of sadness and misery and feeling left out; or it can be a day of complete oblivion where one is confused why there are so many people carrying bunches of balloons with ‘I wuv you, Shnookums’ written on them in glitter.
This year, I say screw that. This year, I say how about you do something that is meaningful that will not only help others, but also make you feel great. This year, it doesn’t matter if you have a Valentine or not. Everyone can play.
I am, of course, speaking of the Spare a Rose Save a Child campaign.
Now, if you have diabetes and/or any links to the diabetes word, you have probably seen and heard about this campaign before. I’ve even written about it here. The general gist is that instead of sending a dozen roses to your Valentine, send eleven instead and with the money that would have bought the extra one (about $6 in Aussie money) make a donation to Life for a Child. Those five bucks will provide insulin to a kid in a developing country for a whole month. Or, give your Valentine ten roses and donate $12.
All good, right?
But I have a little challenge for you.
This is a brilliant campaign because it is so simple. It’s easy to explain and it’s really easy to get involved. So my challenge is this. Let’s get this moving way out of the diabetes world. Let’s get this into the hands and hearts of our friends and family who may not really consider this as an idea for Valentine’s Day. Let’s tell our workplace HR teams and see if they can encourage it as a work-place wide giving program (there’s even a tool kit to get you started!). Pop in to visit your neighbours and ask them to get involved. Next time you are going for a walk in your local shopping centre, drop in to some of the small businesses and ask them to get involved. Ask your kids if they would like to donate some of their pocket money.
Roses and diamonds and jewellery and books and CDs and vouchers for massages and guitars and DVDs of favourite movies are all lovely and fun for Valentine’s Day and I am not suggesting you complete give up on the idea of sharing gifts. But how about sharing the love a little this year? I know that I certainly will be making a donation and have already strongly suggested to my Valentine that he do the same. (And check out this and this cute card to attach to your gift, telling your Valentine how you’ve shared the love this year.)
So, how about making sure a child has life-saving insulin available to them by donating just a few dollars in your loved one’s – or your – name. Because THAT is a gift of love and I honestly can’t think of anything I would like more this Valentine’s Day.
Four weeks into a family holiday, away from the mundanity of every day, away from schedules, away from stresses, and I can see just how much better I feel – emotionally as well as diabetes-wise.
After writing an extremely raw account of the diabetes burnout I have been experiencing for some time, I have spent time wondering just how I was going to get diabetes back to a place that would stop causing me so much concern and guilt and stress and anxiety. Because that’s the thing with the way I do diabetes burnout – I don’t just burnout, I then focus on the burnout. Which makes me more burnt out. And then I focus on how much bigger the burnout is getting. You get the picture.
But here, in New York, surrounded by my family and visits from friends, I am feeling that things are slowly, but surely, balancing out again.
Diabetes management has gently snaked it’s way back into my life – just as a regular part of my routine. I’ve found myself checking my BGLs with more frequency – and less frustration – than had been the norm at the end of recent times.
I don’t get to the end of the day and find a pressing feeling on my chest because I have been suppressing the guilt of not checking my BGLs. I don’t ignore high BGLs that I know to be the result of a pump line that really needs to be changed. Diabetes tasks like these just happen; far more effortlessly.
But I am taking things slowly and easily. Baby steps.
I decided not to reconnect my CGM after the sensor fell out during the first week here. I’m spending most of the time with my family, so not feeling I need it as my safety net as I do when either travelling alone or at home at night while Aaron is out doing gigs.
I know that this isn’t reality – as much as I wish it really were – but I am absolutely savouring this time. This somewhat alternate existence is such a privilege – I feel lucky. I feel happy, actually. For the first time in a very, very long time, I feel truly content.
And of course, that makes the overall shitty-ness of diabetes a little easier to manage. But (make no mistake) it doesn’t make it less shitty overall…
I came to this realisation the other day as I was pushing in a new infusion set. I packed away the waste and tucked the freshly-primed pump into my bra, thinking about how much I really dislike diabetes tasks. Because I do. I don’t want to check my BGL or shove a sharp introducer needle into my side to re-site my cannula. But I just do it.
When I am burnt out, one of the reasons I don’t want to do these things is because I hate them. But even when I am just getting on with things and all is ticking along okay, I still don’t enjoy these tasks.
And you know what – that’s perfectly okay!
Perhaps for me what comes after burnout isn’t just getting back on track. Perhaps every episode of burnout – however long or debilitating – ends with a realisation that diabetes is still a shit. There’s just a little more acceptance.
And a tangible sigh of relief to find myself seeing some light for the first time in a very, very long time.
The bathrooms at Madison Square Garden would have to be the cleanest public toilets I’ve ever seen. It was tough to get up and take a break from what was turning into one of the best gigs I’d ever been to, but when nature calls, you answer – even if Billy Joel is on stage!
I found an empty cubicle, quickly peed (TMI) and went to wash my hands. At the basin, out of the corner of my eye, I saw a women rummaging in her bag. I was about to look away, when, in the reflection of the mirror, I saw her pull out some thing familiar. It was an insulin pen. She bent over ever so slightly and jabbed the needle into her thigh, right through her jeans.
Our eyes met. ‘Oh, sorry,’ she said. I could tell it was a reflex – said in the same tone as if she had accidentally knocked elbows with me.
‘Don’t be,‘ I said. ‘I have diabetes too.’
She smiled at me and looked relieved. ‘My blood glucose is high. I needed some insulin…’Suddenly she looked a little sheepish. ‘I shouldn’t inject through my clothes though. Right?’
‘Ah – shoulda coulda woulda!‘ I said to her. ‘Whatever works for you! I was high at the beginning of the night. It’s coming back down though, but now I’m paying for the water I was guzzling earlier! If you don’t mind me asking, why are you injecting in the loo?’
She looked confused.
‘Ah…bathroom.’ I corrected myself. I keep forgetting that even though we allegedly speak the same language, I spend a lot of time rephrasing what I say here in the US to make myself understood.
‘I always do,‘ she said. ‘Some of my friends and family get uncomfortable around needles,‘ she said. ‘So I use the restrooms. I don’t want to upset them. Where do you inject?’
I finished washing my hands. ‘I use a pump,’ I said. ‘But I always would just inject wherever I was – I never used the bathroom. But that was my choice. My attitude has always been that if someone has a problem with seeing me do my diabetes stuff, look away. And grotty…um…dirty bathrooms are not the place to manage my diabetes. Not that these bathrooms are dirty – they’re spotless!’
‘Do you like the pump? I’ve read a lot about them. I’ve only had diabetes for a year.’
I could see in her face that she really wanted to talk. And I really wanted to talk to her.
But I was at Madison Square Garden, and Billy Joel was playing. And I wanted to get back out there and keep dancing and singing and enjoying the gig too.
‘I do,’ I said. ‘I’ve been using a pump for almost 14 years now and a CGM for about 5. For me, it’s the right choice for managing my diabetes as best I can. If you are interested in hearing what people think, maybe have a read of some diabetes blogs. I find that they give the best – and usually most unbiased – views of diabetes technology and treatments.‘
‘Yes, I have started to read some really great blogs that have helped me. It’s so great to find people who are going through the same things. It makes me feel like I am gong to be okay.’
‘You are,‘ I told her. ‘Really; you are.’ I looked at her square in the eye, hoping to help her understand.
‘Right. I’m going to head back out there. But it’s been lovely meeting you. Good luck with everything. And enjoy the rest of the gig. Hope your sugars come back down soon.’
As I walked out of the bathroom, the cleaners continued to wipe up the basins and clean out the cubicles.
I ran down the stairs and took my seat just as the piano intro to ‘And So It Goes‘ was being played, and squeezed my husband’s hand.
‘You good?’
I looked around the stadium, at the thousands of people in the room and wondered what the odds were of me and another PWD bumping into each other. I shook my head a little and smiled.
‘Yes, babe.’ I replied. ‘I’m so good.’
Diabetogenic 