For Type 1s - How much space does T1D take in your life?

[Northerner]

From JDRF:

http://www.jdrf.org/t1dlookslikeme/

Here's mine



Blimey! 😱 Although not quite accurate - I do more fingerpricks than injections (6-8 a day), so not sure where they work out 7 injections a day (usually 3 a day for me) 🙂 I suppose 5 injections a day is common, with maybe a couple of corrections or extras for snacks, which I tend not to do.

 

[Stitch147]

I saw a couple of these on facebook this morning from type 1 friends of mine.

 

[Owen]

7 injections are before and after meals plus one bedtime

 

[Diabeticliberty]

A rough calculation for me using projections. I have been type 1 for 11648 days. I have injected insulin roughly 58240 times give or take a couple of thousand. I have undertaken 174720 finger prick blood tests. I have lost approximately 4 hours sleep since nothing ever keeps me out of my favourite place which is of course the Land Of Nod 🙂.

 

[DeusXM]

7 injections are before and after meals plus one bedtime

Shouldn't that then be swapped around with finger stick testing? If you're routinely injecting both before and after a meal, something's very wrong with your diabetes management.

 

[everydayupsanddowns]

Oddly... their way of calculating numbers seems to change depending on the inputs. Mine averages only 3 injections a day, and 6 BG tests a day (which is way above the UK average, though not far off my current practice)

 

[AlisonM]

Mine's way off, it assumes 7 injections per day when I average 4, average finger pricks is right though at 6. I tend not to correct unless I'm headed into double figures.

 

[Northerner]

Oddly... their way of calculating numbers seems to change depending on the inputs. Mine averages only 3 injections a day, and 6 BG tests a day (which is way above the UK average, though not far off my current practice)

I wonder if it's making adjustments for the longer-term T1s who would have been injecting fewer times before MDI became the established norm?

 

[mikeyB]

I don't accept the premise. T1D takes up very little space I my life, it's just part of the way I live, made easier with the Libre checking BGs on the hoof. This is distinctly obsessional. Who cares?

 

[Northerner]

I don't accept the premise. T1D takes up very little space I my life, it's just part of the way I live, made easier with the Libre checking BGs on the hoof. This is distinctly obsessional. Who cares?

I get the impression with JDRF that it is much more centred on childhood T1, which certainly has many more factors to consider than my own, so the idea is to bring it home to the Muggles how it can be quite demanding to manage. Of course, it can be very demanding for many adults too - I'm fortunate that it's farily straightforward for me, and has probably pushed me towards making better health decisions since diagnosis 🙂

 

[mikeyB]

Fair point, but that was just my opinion, not a lifestyle guide.

Like the new avatar, Northerner. Bit of a five o'clock shadow, though. You really should smarten up a bit😉

 

[Northerner]

Fair point, but that was just my opinion, not a lifestyle guide.

Like the new avatar, Northerner. Bit of a five o'clock shadow, though. You really should smarten up a bit😉

What? This is me in my Sunday best! 😱 🙂

 

[DeusXM]

I get the impression with JDRF that it is much more centred on childhood T1, which certainly has many more factors to consider than my own, so the idea is to bring it home to the Muggles how it can be quite demanding to manage. Of course, it can be very demanding for many adults too - I'm fortunate that it's farily straightforward for me, and has probably pushed me towards making better health decisions since diagnosis 🙂

One of the most striking things you can do as someone who's had diabetes for a while is to describe your normal day to someone who doesn't have the condition. You'd be amazed at how much of what we consider completely normal is frankly terrifying and alien to anyone else. In three days most of us will have already had more injections than a regular person would expect to have in a lifetime, and let's face it, the injecting part of diabetes is probably the most 'so what' part of the experience.

We voluntarily stab our hands to make ourselves bleed multiple times a day (blood testing)
Most of us find ourselves in a position where our brains literally stop working properly on a weekly basis (hypos)
At any one point we are potentially less than 48 hours from death (if we decided to stop injecting our insulin)
At some points we could be as little as 15 minutes away from a coma and death (hypos again)
We have to do a maths exam every time we eat and failing it could mean any of the above
When choosing to have another piece of toast or a few extra chips, we're effectively making a choice about whether we want to lose a leg or not (if you take all this to the logical ultimate extreme)

And that's just the day to day stuff. Now, none of the above gets me down at all. But when you take a step back, it is frankly amazing what we think is normal or perfectly doable. Much like the old joke you never realise how weird your family is until you start explaining it to other people, I think none of us quite realise the astonishing things we all do as routine.

 

[everydayupsanddowns]

I wonder if it's making adjustments for the longer-term T1s who would have been injecting fewer times before MDI became the established norm?

I'm not sure. I know there's some weirdness going on where you have to account for being some of the time on MDI and several years on pump, but the switch in numbers is a bit odd. Generally the assumption seems to be 6x injections a day on MDI for mine. Which is probably a bit high as an average given the number of days on 4x and a year or two on 2x a day.

Nevertheless, this is not about precision - it's about generating 'not impossible guesses' and making a funky graphic to make people think.

I tend to agree with DeusXm. We take a lot of this for granted after a very short while. I may do that thing again where I document my daily interactions with diabetes on World Diabetes Day for my family/friends. Often raises some good conversations.

 

[Diabeticliberty]

One of the most striking things you can do as someone who's had diabetes for a while is to describe your normal day to someone who doesn't have the condition. You'd be amazed at how much of what we consider completely normal is frankly terrifying and alien to anyone else. In three days most of us will have already had more injections than a regular person would expect to have in a lifetime, and let's face it, the injecting part of diabetes is probably the most 'so what' part of the experience.

We voluntarily stab our hands to make ourselves bleed multiple times a day (blood testing)
Most of us find ourselves in a position where our brains literally stop working properly on a weekly basis (hypos)
At any one point we are potentially less than 48 hours from death (if we decided to stop injecting our insulin)
At some points we could be as little as 15 minutes away from a coma and death (hypos again)
We have to do a maths exam every time we eat and failing it could mean any of the above
When choosing to have another piece of toast or a few extra chips, we're effectively making a choice about whether we want to lose a leg or not (if you take all this to the logical ultimate extreme)

And that's just the day to day stuff. Now, none of the above gets me down at all. But when you take a step back, it is frankly amazing what we think is normal or perfectly doable. Much like the old joke you never realise how weird your family is until you start explaining it to other people, I think none of us quite realise the astonishing things we all do as routine.

I do so love a 'glass is half full attitude' 😛

 

[Owen]

Shouldn't that then be swapped around with finger stick testing? If you're routinely injecting both before and after a meal, something's very wrong with your diabetes management.

Yes, its therapy day, that's what I meant.

 

[Owen]

For me managing diabetes is a breeze, there are moments when it can be a pain but is less of an annoyance than everything else.

 

[DeusXM]

I may do that thing again where I document my daily interactions with diabetes on World Diabetes Day for my family/friends. Often raises some good conversations.

The other thing is there's also quite a bit of diabetes management that you don't even think about. I've realised subconsciously I wonder what my blood sugar is doing something like every 30 seconds, all day, every day, and that then boils over into before I start anything, I actively start thinking about my blood sugar. No-one else out there when they're tired or thirsty or hungry is instantly thinking 'oh, does that mean I've screwed something up'.

 

[mikeyB]

Yes, but its subconscious, as you say. And now it's almost automatic that I pull my Libre reader out of my pocket. That will soon become second nature.

 

[trophywench]

Heehee!

According to them I've done 6 blood test a day throughout, but haven't had a single insulin injection in 44 years! Admittedly for the first 10+ years, it was only one a day, but .....

Considering they hadn't invented home fingerprick testing for the first I dunno how long this means for the rest of the time I did a sight more than 6 a day average. I usually do 5 standard ones and only if I have a glitch or snacks, will I do more. Odd that I managed to stay alive in the intervening period until I got my pump in 2009, doncha think!

I like the psych surveys when they ask you how many times you think about your diabetes (they never ask how often you think about other people's, which in a community such as this we all often do and it's actually easier to quantify that time than it is our own!) so I always say it's constant - during my waking hours I never actually stop cos whatever I do it's always in the back of my mind - yeah sometimes you have a little respite like when you are calculating how many times you think about your diabetes or working for an employer, or driving or following a recipe or mowing the lawn or watching TV etc - but otherwise - I NEVER stop - because I'm the silly sod who'll suffer if I do!

Yet - we're all sposed to go OK ! and just accept it ! - and most of us do. How the HELL do we manage THAT ?