I simply wasn’t feeling in the spirit of World Diabetes Day yesterday. I didn’t wear blue. I’m not doing the daily photo challenges like many of my Facebook friends are during November. I settled for a walk over OzDOC last night. I don’t think I’ll be jumping into the World Diabetes Day chat today, either.
I’m at a point where I’m struggling to identify with all of the smiles and positivity and we-can-be-superheroes posts that are flooding my social media feeds at the moment.
I’m not channeling my inner superhero at the moment. If anything, I feel like my cape weighs a tonne and it’s dragging me back down to earth.
I don’t feel like a superhero when I crawl into bed at night, feeling exhausted from the long day that’s gone by.
I don’t feel like a superhero when I haven’t had a spare moment to put my feet up all day, feel the fresh air on my face or sun on my skin.
I don’t feel like a superhero when I’m doing the same boring (but necessary) diabetes management tasks over and over again.
It’s not like I’m drowning. Or that I don’t feel like I’m able to manage. But when you throw everything else into the mix, I really feel just how hard this is. The physical and mental effort that diabetes management takes away from the rest of my life is huge.
I’m not sure burnout is the right word here. But I’ve been struggling a bit lately, trying to find somewhat of a balance between managing my diabetes, keeping up with all of the other commitments I have going on in my life, and having some time out for myself every day. I’m at a point now where I’m really thinking about what I want to commit to over the upcoming year, and where I would like to take a step back or even let go.
Self care is a pretty big priority for me while I’m managing my diabetes.
Without self care, I’m not able to channel my inner superhero as often as I’d like.
Nothing beats self care when it is needed. I suggest you do a small assessment of all the great things in your life. You have many.
Do not worry too much. After you have type1 for 40 years with no health problems, like me, you will learn to deal with it.
My 11 year old son has T1D, diagnosed 1 1/2 years ago. I watch him, support him, argue and cajole him to keep on track with carb counting and guestimating; checking his BGL; letting someone know (esp at school) if he has insulin pump blockages; etc etc. He’s only 11. I tell myself (I don’t say this to him!) that this is forever, that he has to live with T1D for the next 90 years or so. I want him to be able to be healthy, physically and emotionally.
And yet I am already worn out from T1D, and it’s not even me that has it. I want to strangle people who tell me how hard it must be for me to be a parent to a child with “unstable diabetes.” I try to educate: no, this is not unstable diabetes, this is just diabetes. This is what diabetes looks like. No, it will not get easier. No, he will not necessarily become hypo-aware when he gets older. No, it is not reasonable to say, “well, he should be able to take the metro bus home– he has to learn to ask the bus driver for help if he has a hypo.” No, it will not necessarily magically become less painful to do a set change. No, it is not reasonable to assume that he should be doing his own set changes now, at 11 years old (with his pump site on his upper buttock, how many people can even reach that area??).
This is what well-managed diabetes looks like. His BGLs are usually within range. When they are not, we act quickly to find treat or correct. We act quickly to change a dodgy set location. We almost always use dual wave dosing, and adjust it for different meals and snacks. If we were not doing these things, that would be unmanaged or unstable diabetes. If we didn’t take the time to question our healthcare “professionals”, to read research ourselves, to talk to other people in the T1D community– well, that would lead to unstable or unmanaged T1D.
To people who say they have a friend with T1D who “has no problems ever”, who just grabs a candy bar before leaving the house. I’m guessing you aren’t such a great friend if you don’t know how this friend lives with T1D, checking BGLs, dosing, adjusting, getting it wrong, trying to get it right, having family worrying….
So. Well done for doing the best you can. For getting frustrated and angry and tired and over it. For seeing hope for the future, for recognising that that super-hero cape needs to come off sometimes. For letting yourself be human. For sharing.