I saw this tweet the other day:

Click for original tweet

Diabetes work is often invisible, too. Even though people may sometimes see us completing some of the daily bits and pieces we have to do, so much of us staying upright is done behind the scenes, unseen by anyone.

Not too long ago, a (non-diabetes) HCP said to me that they thought it was incredible how people with diabetes just get on with things and do them without any effort. He had just heard me speak about day-to-day living with a chronic health condition such as diabetes. ‘I had no idea what was involved. I see lots of people with diabetes and just had no clue of all of the little things that just seem to happen,’ he said to me. ‘We really have no choice,’ I said to him. ‘We just have to do it all.’

And most of it is largely invisible.

Every day we fill up that dispenser so we can do what has to be done.

I know as well as anyone that there are times that things almost run dry. But of course, we can never truly run all the way down. Regardless of how exhausted, burnt out, frustrated, emotional we feel about diabetes, we still do what we need to do: Pump lines get changed, cartridges get filled with insulin, CGM sensors (eventually) get replaced, calibrations (sometimes) happen, hypos get treated, batteries get changed.

We still need to make sure there is always just enough for us to push that last bit out and lather up – so that we can treat when low or give insulin when high. Those are the days that there is barely enough in the dispenser to create much lather at all.

We can ask someone else to remind us to fill up the dispenser and help us along our way, and that help is always appreciated. How incredible it is when we have someone picking up our supplies, or throwing out the waste from a sensor change, or reaching for a full bottle of insulin for the fridge! But there is so much more to it that just the physical jobs.

When washing our hands, that lather is more than just the soap and water. Mostly, it’s the effort of us rubbing our hands together. No one else can do that bit for us and diabetes is so much the effort we put in on top of those physical tasks. It’s a lot of work to maintain the right headspace in order to actually feel capable. No one else can do that part for us really. We just do it and do it quietly.

Imagine if every time we did some diabetes task we announced it. In the last half hour that would be:

  1. I silenced my CGM alarm
  2. I silenced it again
  3. For fuck’s sake shut up. And alright, I’ll calibrate!
  4. I checked my blood glucose
  5. I entered the number in my Dex app
  6. I checked my Loop app while my phone was open
  7. I had two fruit pastilles because I realised I’d over bolused for the jam drop I’d only half-eaten a little earlier
  8. I replenished the fruit pastille stash in my bag
  9. I checked my Loop app again
  10. Bloody hell – Loop now telling me that my pump battery is low
  11. I changed the battery on my pump

I know I bang on about diabetes a lot, but can you imagine if I actually broadcast every single time I did something to attend to my diabetes. (I truly think there are some people who believe I do that. How disillusioned they are!)

Almost twenty-one years of living with diabetes and as that number gets bigger, I find myself wondering if I will ever work this thing out and get good at it. I may look like I have it together most of the time, but honestly, most weeks I am merely one push of the dispenser plunger away from being completely, utterly empty.