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Two years ago today, I wrote my favourite ever post about one of my favourite ever diabetes encounters with one of my favourite ever people with diabetes. I met this kid just once and spoke with her for only a short time, but I often think about her and wonder if she is running a country, or at least her school, by now. I don’t doubt she is.
Anyway, when the link came up on my TimeHop app today, I reread it and it made me smile. Again. I hope that you enjoy it, too. (The original post and reader comments can be found here.)
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.
Routines help me function and help with smoke and mirrors appearances that make me seem an effective adult. Yesterday, my routine was accidentally thrown out the window. And then everything went to pot.
We can blame jet lag. We can blame the frantic running around after getting out of bed late. Or we can just blame me.
My every-morning routine looks something like this:
Step 1. Check my BGL, calibrate my CGM and do an adjustment bolus if necessary.
Step 2. Get out of bed.
Step 3. Rifle through my underwear draw (taking my underwear into the bathroom with me).
Step 4. Shower, dry off, slather on moisturiser, put on underwear.
Step 5. Reconnect my pump, shoving it into my bra.
Step 6. Brush my teeth and don’t return to the bathroom.
And then, for the rest of the day, I am confident in the knowledge that I have my insulin delivery device attached to my body, delivering insulin.
This routine works.
Yesterday, the routine got messed up. I forgot step 3 – I walked straight into the bathroom without my underwear, which subsequently meant that step 5 didn’t happen. And it didn’t happen later as I did the rest of the getting-ready-for-work-and-out-the-door
I drove into the city to the hotel that was hosting the meeting I’d be sitting in for the remainder of the day. First things first, I grabbed a coffee and at that point, I reached down the front of my dress. My bra was empty (well, okay, not completely empty, but there was no pump in there). Startled, I started patting down my body trying to locate my external pancreas – no idea where I thought I’d put it, especially considering I was wearing a very fitted dress.
I felt the nib of the cannula part of the infusion set on the side of my stomach. It was sharp because it didn’t have the disc from the tubing connected.
And then I cursed. A lot.
I weighed up my options.
Option 1: Retrieve my car from the valet parking and drive back through peak hour traffic to collect my pump from home and miss the important first session of the day.
Option 2: Curl up in a corner and cry.
Option 3: Work with whatever was in my diabetes spares bag.
Option 4: social media the crap out of how I am #NotGoodAtDiabetes.
While option 2 was preferred and option 4 was a given, I activated option 3 and set to work.
I’d already been disconnected for about an hour at that stage so my glucose levels were creeping up, almost, but not quite, in double figures. I did some calculations in my head and gave myself a bolus using the syringe and insulin from my spares bag.
And then, every hour or so, I checked my glucose levels and bolused manually as necessary. Obviously, eating low carb was the order of the day (I threw out my morning coffee, not really wanting to have to bolus for the milk and sugar).
By the time I eventually got home in the late afternoon, I was sitting around 11mmol/l – the highest I’d clocked all day. I reconnected my pump, so happy to be reunited.
But geez did I feel foolish.
Last week at ATTD, one of the speakers had a similar experience that he tweeted out, and I spoke with him about it later that day. ‘But the pat down! Didn’t you notice when you did the pat down?’ I said, demonstrating my usual routine (more routines!) of standing at the front door, putting my hands over my body making sure that my pump was where it was, my CGM is secure and doesn’t require more tape and the cursory glance into my handbag to locate my BG meter, phone and diabetes bag.
And then others at the table – mostly made up of people with diabetes – spoke about their version of the ‘pat down’. We all had one.
So what did I learn yesterday?
I learnt that throwing the morning routine out the window (even if not deliberate) is a very silly idea! I learnt that despite sixteen years under my belt of wearing a pump – a device from which I have NEVER taken a break – I can still leave home without it. I learnt that I really, really don’t enjoy injecting insulin throughout the day. I learnt that my diabetes spares bag is the best thing ever. I learnt that I should never take the convenience of my pump for granted.
And most importantly, I learnt that this is something that so many of us do as I was flooded with messages from friends asking if I was okay, needed help and sharing their stories of doing exactly the same thing!
Last Friday night, I was at a work dinner. The event followed a very full day of meetings and as we sat down for our meal, I was concerned that my brain was so drained I wouldn’t be able to focus on the guest speaker.
However, when he started, the speaker (one of Australia’s leading diabetes health professional experts) gave an eloquent and articulate talk about the state of diabetes in Australia and the world.
He spoke for a relatively short time – about 15 minutes – and then sat back, continuing to chat with other people seated around him.
He noticed my CGM on my arm, but didn’t say anything. However, later on as he was speaking about realities of living with diabetes, he stopped and said directly to me: ‘You know this better than anyone else. Why am I talking?’
I was grateful for the acknowledgement, but I did want to hear more from him. One of the things he focussed on in his talk was about how HCPs often don’t truly understand diabetes or how to speak to people with diabetes. He identified stigma as a real issue for people living with diabetes – and how the way diabetes is presented and spoken about in the media is damaging. But several times, he came back to his concerns about healthcare professionals and their approach to dealing with people with diabetes.
‘You are so right,’ I said, agreeing with him. ‘I’ve found – and have heard from many others – that often HCPs don’t get diabetes at all. There is this weird concept that diabetes is a matter of insulin (or other meds) – food – check BGL – adjust accordingly. And go! It’s not that easy. It’s really not.’
He nodded at me. ‘You know; I think we made a really big mistake about 30 years ago when we started saying that people with diabetes can live a normal life…It’s not true.’
I’ve not been able to stop thinking about that comment all weekend. It was startling to hear the words, but I think that was because I realised straight away that it was true.
When I was diagnosed, I was told that diabetes would not prohibit me from living a normal life. Sixteen years ago when I started using a pump, I was told that it would make me feel normal again. When I started on CGM, I was told that I would feel normal when I could easily see and adjust my glucose levels. When I’ve started any sort of new eating plan, I’ve done it because I’ve heard that it makes people feel more normal.
I spend so much time convincing people – convincing MYSELF – that diabetes hasn’t prevented me from living a normal life. I check off on my fingers the things I’ve done, one at a time proving that I can do anything, I have done everything. I am normal! Look!! I work; I travel; I have a kid; I eat what I want; I stand up in front of people and talk; I write and get published. Look how normal my life is!
But the truth is – it’s not normal. My life is not normal. And it’s disingenuous to suggest otherwise.
It’s not normal to for my body to not produce insulin. It’s not normal to have to think about every piece of food I put in my mouth, (how many carbs are in there? Are there too many? Are there not enough? What is my BGL right now and do I need more/fewer carbs?) It’s not normal to be terrified that I am going to develop complications that will be debilitating, limiting, scary. It’s not normal to be so worried about my health all the time – to be so focused on my health all the time. It’s not normal to have sensors and pumps and devices stuck to my body as I try to mimic a human organ. And it’s not normal to think this is normal
Humans are incredibly adaptable. We modify and make changes to suit to new environments, circumstances, challenges.
And when we are diagnosed with a chronic health condition that impacts on pretty much every part of our life, we adapt. It may become our new normal. But it’s not normal.
I agree with the esteemed professor from the other night. It was a huge error to start saying that we can live a normal life with diabetes. It undermines, and negates, the constant effort we need to put in to appear normal and to be healthy; it makes us feel guilty – and incompetent – when diabetes does stand in the way. It makes us fell less than we should when we need to seek special consideration or dispensation to help manage situations.
I have diabetes. My life is not normal. And it doesn’t diminish me in any way to admit that.
‘Why do you even care what’s happening in America? It doesn’t affect you, does it?’
I’ve been astounded to hear a few people ask me this question after finding out that the kidlet and I participated in the Women’s March a few weeks ago, or after hearing me speak about the current situation in the US with the Trump Administration threatening to repeal the Affordable Care Act, and allowing insurers to discriminate against those with pre-existing health conditions.
I care a lot about what is happening in America at the moment. Without a doubt, my main focus is what is going on with healthcare and insurance, (however today, I am stunned, dismayed at Betsy DeVos’ confirmation as Education Secretary, but that is mostly because I cannot believe that someone who thinks guns have a place in schools ‘because of, you know, grizzlies’ is in charge of education).
Does it affect me directly? Well, probably not. But it is incredibly naïve of us to think that what happens in the US is completely irrelevant here in Australia. We know our politicians look to the US for policy direction. Our new Health Minister, in his maiden speech to Parliament, put forward the case for the adoption of a healthcare system more in-line with the US-system.
Of course what is going on in America affects us, but, actually, that’s not the point.
The real point is that I care because it’s about people. Not only that, it’s about the most vulnerable people. And like it or not, people with chronic health conditions are vulnerable. We are high-level users of healthcare, we face more discrimination and we cost more to the system. We can be hit where it hurts: easily and unfairly.
Of course, within this group there are some more vulnerable than others.
In the same way, I’ve had people ask me why I care so much about insulin access around the world, which seems like such a callous thing to even think, much less say out loud, when you remember that the life expectancy for a child diagnosed with type 1 diabetes in sub-Sahara Africa is 12 months. I actually still struggle to get my head around that really.
I care because I am a global citizen and I care because my social responsibility is to those less fortunate. I care because when my brothers and sisters around the world are struggling because they can’t access diabetes care, it hurts us all. I care because when I hear that instead of protecting the most vulnerable – as they should – governments are building walls (no pun intended) to make it more difficult, more frustrating and more tiring, the response should never be ‘oh well’, it should be ‘What.Can.I.Do?’ I care because diabetes is hard enough without having to fear being turned away from A&E or from other treatment. I care because no one should die because they can’t easily and affordably access a drug that has been around for 95 fucking years.
Of course I marched last month and you can bet that I will be doing it again. And you bet that I will be standing alongside my friends in the US as they fight one of the hardest battles they’ve ever faced just to be able to access healthcare, and my friends from around the world too as they fight access issues. And I will continue to make donations to charities helping those who cannot access insulin and be an Ambassador for Insulin For Life Global as they continue their excellent and necessary work.
But if you really think that it’s all too far away, so it won’t touch us, then perhaps you might like to do something to help people closer to home. As someone delicately reminded me last week, it is not only people in developing countries who struggle to access diabetes healthcare and drugs, and whose outcomes are far, far poorer than those of us living firmly inside a privilege bubble.
In Australia, diabetes is more than three times more common among Aboriginal people than among non-Aboriginal people. Hospital rates for diabetes-kidney complications for Aboriginal and Torres Strait Islander people is ten times higher than among non-Indigenous people. The rate of gestational diabetes in Indigenous women is more than twice the rate among non-Indigenous people.
Get involved with or make a donation to an Australian-based charity if you would prefer to do something to help those closer to home.
We should all care because when others are disempowered, it means they are not able to get the best care or expect the best outcomes. And we do something because we can; and if we can, we should. That is what being socially responsible is all about.
Recently, I was slightly shocked at a comment made while I was enjoying a pleasant lunch.
‘A is pregnant,’ came the announcement.
‘Oh, that’s lovely,’ I said. Although I don’t really know A, I was still very pleased for her.
‘Really? I’m not sure if that’s such a good idea considering her health condition. What if she passes it on?’
Now, if I had any sense of decorum or tact, I would have stopped right there and changed the subject. Or left the table, suddenly desperate to visit the bathroom. Or become focussed on the pattern on the table cloth. Or thought about the dessert that was about to be served. I would have done anything other than say something.
I am not that person.
‘You’re kidding right?’ I said, prickly with anger. ‘Do you know how many times I’ve been told that? Do you know how many times people have inferred that I am selfish for having a child – and trying to have more – because of my diabetes and the possibility that I could have passed on my crappy genes?’
I was annoyed at myself for saying anything. My kid was sitting opposite me, listening to every word I said. She may not have joined the dots between how A’s health condition could impact her a baby, and me with my health condition impacting my baby (i.e. my kid). I’d just made it abundantly and painfully clear, however.
‘I’m sure that she’s getting really good advice and that she is on top of it. But I’m thrilled that she is having a baby if that’s what she wants and it sounds like it is. Not that long ago, she wouldn’t have been able to. Just like women with diabetes couldn’t. I really hope she is feeling well and has lots of support around her.’
This conversation happened a number of weeks ago and it is only now that I am ready to speak about it; to write about it. I was terribly upset at the time – the topic is very sensitive and clearly, more than 12 years after our girl was born, I still struggle with the perception that others may have: I was selfish for having a child because I could pass on diabetes to her.
But the more I thought about it, the more I realised my feelings are very mixed up. Along with the anger flashing in my voice, there is guilt. I have so much guilt about the chances of passing on diabetes to our daughter. It terrifies me, and the fear can be overwhelming.
Living with diabetes meant having a baby was not a particularly straight forward matter. The decision to actually go ahead took a lot of soul searching and discussion. The actual getting pregnant took time, effort – and great pain as I lost babies. Yet, I never had a baby because I was being selfish. I did it for a lot of other reasons, but being selfish was not one of them.
And rarely a day goes by when I don’t consider the impact my decision could have on our girl. Perhaps I don’t like to be reminded of it which is why I reacted so stormily. Or perhaps I am still just really, really scared.
Just over three years ago, we sold our house and prepared to move into our new one. The real estate agent we had charged with getting us the best possible price for our much-loved first home walked through each room, nodding his head and taking notes. Once he’d finished the tour, we sat around the kitchen table and he started:
‘Your house is beautiful. You have it decorated very tastefully and it’s incredibly warm. The artwork is just lovely. The rooms are well proportioned and there is a sense of space. It’s really easy to fall in love with this home.’
We smiled at him. Clearly we had nailed the single-fronted Victorian style, not overdoing the period features, instead adding modern touches throughout while still giving a nod to the heritage of the area. Obviously, I should have been a stylist and was wondering how we could get on The Block.
Evidently, we’d be getting a call from the editor of Belle magazine for a feature. I imagined the photo spread: there was I standing in the kitchen whipping up a batch of cookies; Aaron sitting on the front veranda playing the guitar; close ups of the rosebushes in full bloom across the front of the house; the kidlet sprawled on the floor of her room, drawing; me lazily lounging on the couch reading with one of the dogs curled up at my feet….
And then the real estate agent brought me out of my reverie and back to reality.
‘Now, get rid of half of your stuff! There’s a storage place around the corner. Use it! Also, why is there Nutella everywhere?’
We stripped the house right back, brutally removing any details that made the house ours.
The music room was turned back into a bedroom, so by the time we had finished there was not a single musical instrument in the house, except for an oud we’d picked up in Morocco a couple of months earlier. The floor to ceiling CD shelves were dismantled and we held onto a handful of CDs, the rest going into boxes.
Books and bookshelves also were packed away leaving fewer than half our collection on show. Photos were packed away, reminders of our travels stored safely. Nutella jars were hidden away. By the time we finished no one would know that a musical and bookish family who had spent a lot of time traveling the globe and eating Nutella had been living there for 15 years.
The house felt a little like an empty shell, however it did provide potential buyers a sense of the space and feel of the house. In essence, we had taken the house back to basics allowing anyone walking through to imagine themselves making cookies in the kitchen or playing guitar on the veranda…
My diabetes management feels like it needs someone to walk through it and get rid of the excess. It seems there is so much going on – diabetes technology everywhere; bells, whistles and alarms; apps to record, remind and recommend; comparisons between different devices. I’ve been thinking about building some sort of automated system after being inspired following some meetings in New York. I look at numbers, turn them on their head as I analyse them and use the data to make minuscule changes, but don’t feel any clearer about what I am doing. There is a lot happening and it feels a little cluttered.
The thing is, I don’t really know what back to basics is when it comes to diabetes. Is it a complete and utter disconnection from technology? Returning to a basic and planned diet that is similar each and every day? Is it keeping records of everything in a simple notebook, looking for patterns?
Reminding myself of my word for the year – and overarching direction – perhaps I just need to pause and consider why it is that my diabetes management has found itself where it is – slightly chaotic with a lot going on!
It’s time to pause. It’s time to remember why 16 years ago I wanted to start using a pump and why 8 years ago I started using CGM. What were the motives behind those decisions and are they being achieved? Are they still relevant?
Lots of questions. Lots of thinking to do. With an overall aim of simplifying things, and that can’t be bad.
Yesterday, on her first day of school, the kidlet’s English class was about autobiographies. So, we had a long chat about some biographies and autobiographies we’d read – and ones we wanted to read – and why they are a really important way for people to share the stories of their life.
Story telling is one of the most powerful ways to record events, emotions and life experiences. Others who may be going through similar experiences can feel great comfort knowing that others have not only lived through certain situations, but stuck around to tell the story! And it is also a fabulous way to share stories with those not familiar with different places, circumstances or surroundings.
Our stories have the ability to inspire, offer an opportunity to learn, and help make sense of things around us.
So, it took me no time at all to respond with a resounding ‘YES!!’ when I was contacted by Anna Sjöberg from Anna PS and Sofia Larsson-Stern from Diabetesia, asking me to be in their book about people living with type 1 diabetes.
The end result of their hard work is a fabulous book – ‘We can, want and dare …and we have type 1 diabetes!’ – and it features people from all over the world telling their stories of life with type 1 diabetes.
When putting together the book, Anna and Sofia wanted to provide real-life stories from people with type 1 diabetes from all walks of life: from kids and teens
(such as this one who is, quite simply, AMAZING!) to adults doing all sorts of amazing extraordinary, and every-day things. There is a Brooklyn-based chef, an incredible young advocate from Sweden and another Swede whose Instagram profile describes him as a Multisport Team Ninja Warrior! Oh, and a Melbourne blogger and activist.
The books was launched it its original Swedish-language version last year on World Diabetes Day and the English-language version has just been launched and is now available.
This book is not just for people with type 1 diabetes, although, with its stories of hope it certainly would be a wonderful thing to give someone newly diagnosed! It is also for friends and families of those living with type 1, and people who really have no significant connection to type 1 diabetes, because it provides an understanding of the complexities of the condition that we live with and offers a very personal insight into life with type 1.
GIVEAWAY GIVEAWAY GIVEAWAY
I have three copies of ‘We can, want and dare …and we have type 1 diabetes!’ to give away to Aussie-based readers of Diabetogenic, thanks to the team at Anna PS. Just click here and send me a message telling my why you would like a copy. Keep it short – brevity is key here!
I was invited to provide my profile for the book and received no payment for my contribution. I will receive a signed copy of the book for my bookshelf, though, and can’t wait to see it!
Our daughter starts back at school today. It’s her first day at secondary school – a significant day, and as I waved good bye to her this morning, watching her walk into the school theatre for morning briefing, I realised that this is one of those really big transitions in a person’s life. And a parent’s life too…
I managed to wait until after the Principal’s address to parents, and after leaving school grounds to get a little teary, so I’m calling the morning a win all around!
As I drove into work, I thought about all the things we’d done to get ready for the day. We’d attended information sessions, gone on school tours, enrolled in cello lessons, decided which language to learn, ordered and collected text books and stationery, organised a public transport pass, learnt how to use the school’s intranet, done a few practice school runs on the tram and many other things that we did as we thought of them.
The check list we were working from seemed endless and we kept adding tasks to it. But we made it, and by last night, her schoolbag was packed and she was ready for her first day.
But our story is common and all families with children starting at (or back at) school have done similar things. However, there are some families who have a whole lot more to do than just make sure they have the right coloured pencils and appropriate snacks in the lunchbox.
There are over 11,000 preschool and school-aged children here in Australia with diabetes, and they – along with their parents – face different and extra challenges preparing for their first days of school. In addition to the things I’ve mentioned above, they have another checklist that needed to be dealt with. The diabetes at school checklist.
While they are packing school bags with books and pencils and lunch for the day, they are also building hypo kits to be delivered throughout their child’s school. They will probably have spent some – maybe considerable – time with teachers explaining some diabetes basics and what to do in the case of a diabetes emergency.
It’s likely that their child’s healthcare team will have been involved in preparing some sort of management plan for the school, outlining how to support the child during the school day, with extra attention given to activities such as sports days, PE lessons, camps and excursions.
Possibly, their school will have undertaken some formal training, such as the School Seminars offered by Diabetes Victoria. They should have received a copy of Mastering Diabetes and hopefully shared the school-relevant information with their child’s teachers and other school staff.
It’s a lot to think about. And it’s understandable why many parents feel a lot of concern, especially when you consider that there is no standard requirement by schools when it comes to supporting children and adolescents with diabetes.
And, quite frankly, that’s not good enough.
Since returning from holidays this year, the majority of my work has centred around diabetes and schools, and today Diabetes Australia launched a new report calling for a systematic, nationally consistent approach to supporting children and young people with diabetes in the school setting. Children and adolescents with diabetes have a right to fully participate in all school activities, but to do so does require training and commitment.
It’s time to move away from the mixed-bag, approach that is in place now, where it seems that luck determines if a school is well prepared and teachers are well trained. Kids with diabetes deserve much, much better.
With millions of people across the globe, I marched for women’s rights on Saturday. Alongside my beautiful daughter – who is growing into a fearless and fierce activist herself – I stood in solidarity with my sisters from all continents of the world, as we called for protection of our rights.
It was beautiful in Melbourne – a true mid-Summer day with stunning clear blue skies and a hot sun overhead. We stood on the steps of the State Library – my favourite place in the city – and listened as women from all walks shared their stories and urged us to stand up, rise up and never give up.
After a while, the kidlet and I walked to the back of the crowd, looking for some shade. We found a park bench and she looked for a vantage point to get a look at the rally and wander around to take some photos as I sat down at the other end of the bench to calibrate my CGM.
I quickly pricked my finger and squeezed blood onto the strip. When the number came up, I entered it into the Dex app on my phone.
The woman sitting next to me on the park bench smiled over at me. ‘Me too,’ she said, holding up the bag of jelly beans she was eating.
I beamed back at her. ‘Are you okay? The heat isn’t helping, is it?’
‘I’ll be fine. Just need a few minutes before the march starts. I’ll be okay.’
I smiled again and stood up. ‘We always are, right? Enjoy the march.’
‘I will,’ she said. ‘And you too. One foot in front of the other.’
I nodded. ‘It’s the only way.’
I walked over to the kidlet and we made our way back through the crowd.
Sometimes, I’m a lousy person with diabetes (PWD). I am thoughtless and unclear about what I need, have ridiculous expectations of others – and myself, and am lazy. But I’m not always like that. And I think I know what I need to do to be better.
Being a better PWD is about being true to myself. It is also about reflecting on exactly what I need and I hope to get it.
- I need to remember that diabetes is not going away
- I need to remember that the here and now is just as important as the future
- I need to remember that I don’t have to like diabetes, but I have to do diabetes
- I need to remember that the diabetes support teams around me really only have my best interest at heart, and to go easy on them when I am feeling crap
- I need to empty my bag of used glucose strips more frequently to stop the strip glitter effect that follows me wherever I go
- I need to remember that it is not anyone else’s job to understand what living with my brand of diabetes is all about
- I need to remember that the frustrating and tiresome nature of diabetes is part of the deal
- I need to be better at changing my pump line regularly
- I need my diabetes tasks to be more meaningful – quit the diabetes ennui and make smarter decisions
- And I need to own those decisions
- I need to see my endocrinologist
- I need to decide what I want to do with my current diabetes technology. There is nothing new coming onto the market that I want, but what about a DIY project to try something new? #OpenAPS anyone…?
- Or, I need to work out how to convince the people at TSlim to launch their pump here in Australia
- I need to check and adjust my basal rates
- I need to do more reading about LCHF and decide if I want to take a more committed approach or continue with the somewhat half-arsed, but manageable and satisfactory way I’m doing it now
- I need to remind myself that my tribe is always there and ask for help when I need it.
- I need to make these!
And being a better PWD is knowing what I need from my HCPs and working out how to be clear about it, rather than expecting them to just know. (I forget that Legilimency is not actually something taught at medical school. #HarryPotterDigression)
So, if I was to sit down with my HCPs (or if they were to read my blog), this is what I would say:
- I need you to listen
- I need you to tell me what you need from me as well. Even though this is my diabetes and I am setting the agenda, I do understand that you have some outcomes that you would like to see as well. Talk to me about how they may be relevant to what I am needing and how we can work together to achieve what we both need.
- I need you to be open to new ideas and suggestions. My care is driven by me because, quite simply, I know my diabetes best. I was the one who instigated pump therapy, CGM, changes to my diet and all the other things I do to help live with diabetes
- I need you to understand that you are but one piece of the puzzle that makes up my diabetes. It is certainly an important piece and the puzzle cannot be completed without you, but there are other pieces that are also important
- I need you to remember that diabetes is not who I am, even though it is the reason you and I have been brought together
- And to that – I need you to understand that I really wish we hadn’t been brought together because I hate living with diabetes
- I need you to remember that I set the rules to this diabetes game. And also, that there are no rules to this diabetes game
- I need you to understand that I feel very fortunate to have you involved in my care. I chose you because you are outstanding at what you, sparked an interest and are able to provide me what I need
- I need you to know that I really want to please you. I know that is not my job – and I know that you don’t expect it – but I genuinely don’t want to disappoint you and I am sorry when I do
- I want you to know that I respect and value your expertise and professionalism
- I need you to know that I hope you respect and value mine too.
And being a better PWD is being clear to my loved ones (who have the unfortunate and unpleasant experience of seeing me all the time – at my diabetes best and my diabetes worst) and helping them understand that:
- I need you to love me
- I need you to nod your heads when I say that diabetes sucks
- I need you to know I don’t need solutions when things are crap. But a back rub, an episode of Gilmore Girls or a trip to Brunetti will definitely make me feel better, even if they don’t actually fix the crapness
- Kid – I need you to stop borrowing my striped clothes. And make me a cup of tea every morning and keep an endless supply of your awesome chocolate brownies available in the kitchen
- Aaron – I like sparkly things and books. And somewhere, there is evidence proving that both these things have a positive impact on my diabetes. In lieu of such evidence, trust and indulge me!
- I need you to know I am sorry I have brought diabetes into our lives
- I need you to know how grateful I am to have you, even when I am grumpy and pissed because I am low, or grumpy and pissed because I am high, or grumpy and pissed because I am me.