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

[TheClockworkDodo]

Here's mine - not really accurate at all, as I do a lot more finger pricks than injections, and my total hours sleep lost is probably about 10.

On the other hand ...

Most of us find ourselves in a position where our brains literally stop working properly on a weekly basis (hypos)

... daily basis is closer to being accurate for me, and often two or three times daily basis, so it's a wonder I have any working brain left at all!

 

[Northerner]

I could probably say EXACTLY how many injections and fingerpricks I've had since diagnosis, as I've kept BG diaries since Day 1 😱 🙂 If I could be bothered to count them, that is!

 

[Matt Cycle]

Days living with it is the only accurate one!

 

[Diabeticliberty]

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.

Funny you should say that. I lost my reader on Saturday night and ordered a replacement on Sunday morning. All day Sunday I was limping along using the Smartphone App which isn't brilliant but does work to some degree. Last night my sensor which I only fitted on Friday just gone gave up. I have since been using just finger prick and despite my many documented reservations about the Libre System I will confess right now that I feel like I have set myself back 500 years. I am a bit lost without it. I have a new sensor in the cupboard but the Smartphone App is too wobbly to use it exclusively. I know that cost is an issue and some users don't use the Libre all the time deciding to pick and choose their moments. I really don't know how they do it. I feel for all the world like when my sensor died my arm fell off with it 😱

 

[Rosiecarmel]

I did mine from when I started insulin... I do probably test about six times a day but I don't understand how they've worked out seven injections a day. I inject 4 times a day, maybe 5 if I need to do a correction.

 

[Bloden]

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.

We are an AMAZING bunch of individuals!🙄🙂

 

[Flower]

Whoa, only 13893 days for me, surely some mistake - it feels so many more! 😉

 

[Redkite]

The hours of sleep lost are DEFINITELY more than the days we've lived with T1D in this house!

 

[Redkite]

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.

When my son was on MDI he frequently had 7-8 injections in a 24hr period. Splitting injections for meals such as pasta (and giving half the dose before eating and half about 90mins after eating) was the only way to manage such foods before he went on the pump and could use extended boluses. Also his lantus didn't have a flat 24hr profile, so would run out mid afternoon, and he needed a top up of novorapid to cope with after school sports like football and swimming, or these would send his BG into orbit due to lack of basal. Again, solved by the pump....

 

[trophywench]

I think that's probably it, because JDRF is of course, child oriented and I don't believe I've lost that much in the 40-odd years. And in that case - surely it's the parent that loses the sleep more than the diabetic child?

 

[pottersusan]

 

[pottersusan]

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.

I posted this a while ago...
https://forum.diabetes.org.uk/boards/threads/what-goes-on-in-your-head.58229/

 

[TheClockworkDodo]

I missed that thread in March, Susan - just read it

I think what is missing from the T1D footprints is no. of days lost due to spending them in hospital/at clinic/at other medical appointments. I worked out mine would be 32 days (though that's partly because, having ME as well, a day when I have an appointment is a day when I do nothing else at all, even if the appointment only lasts a few minutes).

 

[trophywench]

Ooh I like that idea!

Hospital appts just normal clinic ones, 2 a year. Could be an hour or 3 - it's 45 minutes travelling time to one (no bus service) or the other one I could go to it's 20 minutes but you have to get to that one an hour before any appointment since it can take you that long to get a space on a carpark. There is a bus service, but it's a 10 minute bus ride to the nearest stop to us, then because it goes everywhere and to see everyone's dog on the way, it takes 40 minutes from there anyway! So not anything that fits in easily with anyone's life, really. Then there's the annual review at the docs. 10 min car ride to see vampire before all of these, they are quite quick all in all (unless they get a fainter before you LOL) but usually I would be home again within half an hour. So there of them and I spose 45 mins including travel for the toe tickling etc. Then the medication review with the doc. Then the podiatry (every 3 months) then the retinopathy. Then the Cardiac nurse at the hospital twice a year then the annual Asthma check and the annual flu jab.

Then of course should I happen to get anything wrong with me other than the norm - There would be more. And of course every 4 weeks I have a half hour round trip to the pharmacy just to pick up supplies to treat something there isn't a cure for!

 

[TheClockworkDodo]

I didn't include collecting stuff from pharmacy because R does that for me, so I didn't think of it. But of course my D is eating into his time too. I don't think he minds the collecting stuff so much, or the taking me to appointments, but the hanging around waiting for me to finish having a hypo so we can get on with having our dinner gets to him a bit!

 

[mikeyB]

My next diabetes appointment is in Paisley regarding a pump. The appointment is 9.00 . That means leaving home midday the day before, getting a ferry and travelling the 2 hours to Paisley, staying in a hotel overnight, getting a taxi to the hospital next morning, then travelling back to Oban to get the ferry home. The ferry takes 45 minutes.

I could say you punters have got it easy, but I wouldn't have it any other way, because with all my various problems, I'm seen in a centre of excellence.

At home, the doctors surgery is prescribing, and a four minute wheelchair ride away.

 

[Northerner]

I remember a short video posted a while back by IDF (International Diabetes Federation), I think, showing how a young Indian girl had to journey each month to collect her insulin - several hours walk from her village to the nearest town with a bus service, then more hours on a bus to the city and all the way back. She buried her insulin in the ground to keep it cool, as no fridges (or electricity! 😱) Annoyingly, I can't find the video now, but I remember it really brought it home to me how my 25 minute wait in the local pharmacy really wasn't some thing to complain about 😱 I'll have another look for it.