Popping Balloons.

Firstly, I feel a bit bad that only managed to publish 1 post for Diabetes Blog Week – next year I will try to improve on that! 

Secondly, when I was studying in the US I took a few acting classes. And in one of them we had to create Original Solo Productions for our final assessment. There was one girl whose performance was about how at night, when she can’t sleep, she has to write her thoughts down because otherwise they prevent her from drifting off. She illustrated this process by tying a bunch of balloons to her wrist which would literally ‘lift’ her off her pillow. It was really creative and great. And that’s how I feel right now.

To use that metaphor, today has been full of small situations where balloons have been tied to my wrist. One by one. And now, when it’s time to drift off, there’s a whole bunch of balloons preventing me from doing just that. And they’ve mostly all been diabetes coloured balloons (blue, obviously).   

So now, in an attempt to pop them and get some sleep tonight, I want to write them down.

Diabetes Balloon Bunch Part 1:

I stumbled across a blog by one of my favourite bloggers, Renza. She talked about a scary hypo and dealing with the emotional aftermath. The battle between taking precautions for your health, and making concessions to your independence and values. And it resonated with me deeply. And made me feel all kinds of things; empathetic, scared and confronted by the realities of living with type 1 diabetes and what can happen, moved by the honesty and power of sharing your experiences, inspired, and probably a few others.

But I didn’t have space to process them all at the time, so the feelings and worries and thoughts formed little balloons and accumulated on my wrist. And now as I wind down and attempt to go to sleep, I can’t help but notice them all, floating around my head. And the only thing I can think of to do with them, the only way I can envisage popping them, is to share them with the DOC.

Because at the end of the day, I can only do so much preparation in regards to my diabetes. I can’t pre-empt my antiseptic tea tree oil spilling all over my infusion set and ruining the adhesive. I can’t prevent blood blisters forming under some of my sites. I can’t determine whether that contributed to my slightly higher than normal blood sugars the past few days, or if it was the succession of Chinese food for dinner the past few nights, or something completely different. I can’t predict what new my new exercise regime is going to do to my levels: if it will cause a dramatic drop, if it will simply counter-act the aforementioned slightly higher than normal blood sugars, if it will do nothing, or if it will do a little bit of everything (just to keep me on my toes)! 

But I know I have control over how I deal with all of that. My attitude, and the anxiety I feel when I think of all of those things, and the stress it causes – especially when I try to think about them all at once!

And that control is really powerful. And that’s where the feeling inspired comes in. I’m very passionate about dealing with the mental burden and psycho-social aspects of living with diabetes. And I feel very strongly about the lack of resources that meet those needs here in WA. Which brings me to Diabetes Balloon Bunch Part 2.

But that’s a blog for another day… For now, it’s time to drift off to sleep!

 

Don’t judge me. Me, me, me, me, me.

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This week is Diabetes Blog Week, and I’m using it as the perfect opportunity to wade into the dblog world. I’m still very new to this (blogging thing). And it’s far from perfect. Which doesn’t sit well with me…And that’s why I’m excited about this. I really want to write. But more so, I just want to write. Without too much over-thinking or judging. Which kind of ties in nicely with today’s topic:

Share and Don’t Share.

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

While I LOVE the idea of my HCP’s listening to me, I don’t like the idea of them reading my blog. I want my blog to be a place where I can vent, and whinge, and be honest. Honest to a bunch of people I know GET it. Not a bunch of people whose feelings I have to feel responsible for, or tip-toe around. And when it comes to my HCP’s, even though their job is to help me, I very rarely feel like I get what I need from the sessions or time I have with them.

I feel embarrassed to ask something, or the right time never comes up, or we simply don’t click. I feel overwhelmed with all the information I’m getting, however wonderful and useful it is, that I don’t process it and take the time to ask questions. I’m scared I’ll offend them if I ask them to say it again, or say it in a way that actually works for me, or say it with a bit more understanding. I feel like they don’t get it, don’t care, or won’t be able to help – so why bother?

Don’t get me wrong, I have some great HCP’s who really listen to me. But I also have a lot who don’t. And that irks me. Because none of my HCP’s live with diabetes (to my knowledge). So unless they ask, how can they understand that “have you had any lows in the past week?” isn’t just a clinical question about a bunch of numbers my body is throwing at me, it’s about so much more. To me (me, me, me, me). It’s personal; It’s about the way I manage my condition, it’s about the way I live with it, it’s about control, and it’s about their understanding of all of that. And straight off the bat I feel like they don’t understand. Which makes me feel frustrated, angry and upset – all at the same time.

Because they could. If they just recognised the power of their language, the outcomes of our sessions would be so much better, I’d be so much happier, and they’d go through a lot less Kleenex in their consult rooms! If they just phrased their questions a tiny bit differently, it would make a huge difference. To me. Me, me, me, me, me. i.e. instead of “have you had any lows in the past week?” how about “tell me about how this past week has been for you.” or even “what do you really want to solve today? what do you need help with? what are you struggling with at the moment?” Any of those is an invitation for me to give them a bit of insight into my condition, tell them about what I’m struggling with, tell them about my goals and tell them how I want their help. And it’s usually got nothing to do with the number of lows I’m having in a week…

But it’s not all about me. If my health is their job, and that approach works for me, then surely it would make a huge difference to them as well – win, win.

So if I had to say something to my HCP’s, it would be:

Please remember ME. This is about me. Me, me, me, me, me. Don’t judge. Try and empathise. If you don’t know something about my condition, ask me. I don’t mind, in fact I’d love it. When you assume, that’s when I get angry, and frustrated, and the walls come up while the tissues come out.

Please remember the power you have to educate me about, empower me to look after, and engage me in my health. Recognise it, embrace it, honour it, and use it – wisely and gently, please.

I have everything I need to manage my condition in me, I may just forget it from time to time. Often, the ways you can help me the most are by reminding me of that, or just listening to me. Because often, what you don’t understand is how emotional diabetes is. When you listen to me, truly and simply just listen, I can guarantee you that I instantly feel better. And that helps more than being told what my fasting lipids are. 

And finally, please remember the power of your language.

Thanks,

Rachel. 🙂