Your day in the life....

[fairylights]

Pre pump HbA1c was 68 8.4% - really hoping that my next one will be below 7% after going on pump despite yesterday's blip!

 

[Natalie1974]

Last HbA1c 55...yesterday really was an exceptionally bad day for me...not normally that much hard work...I put it down to the roast I had the day before...usually low carb but away for the weekend and indulged in a full on roast...roast potatoes...yorkshire puds and ALL the trimmings...worth it at the time...but didn't enjoy the after effects so much.

 

[Juicyj]

Last HbA1c 55...yesterday really was an exceptionally bad day for me...not normally that much hard work...I put it down to the roast I had the day before...usually low carb but away for the weekend and indulged in a full on roast...roast potatoes...yorkshire puds and ALL the trimmings...worth it at the time...but didn't enjoy the after effects so much.

I know exactly how you feel Natalie, I do that from time to time and then takes me a day to come right again, each time I think is it worth it, and the answer is always yes !!

 

[tim2000s]

This stuff is revealing though. For me, yesterday, a typical day, I checked my glucose levels 38 times. I thought about or acted on Diabetes some 53 times. I bolused on nine occasions. I am predicting an Hba1C of 6% on my next run. I am well under the NICE guideline barrier. I have not had a serious hypo requiring assistance for 8 years. But the point of the exercise is to show that to achieve this, and even an Hba1C under 7.5% takes a substantial amount of hard work. It's no wonder that only 7% of all T1s in the UK achieve the <6.5% target and that for the higher number, 7.5% it is around 27%.

What this reveals across everyone is that it is far harder to manage T1D than the majority of people (including HCPs) realise, and it helps to highlight the "Loneliness of the Long Term Diabetic". This is why communities like this one are so important. How could someone you know and love appreciate just what you do every day of your life without having lived though it?

 

[ewelina]

My latest hba1c was 61. It was summer time, two months after starting on a pump. I predict my next one will be lower as much better on a pump now ( not dreaming about 44 though!). On mdi I was never able to get reasonable good control

 

[slip]

6:45 Alarm goes off, do a blood test to check my basal reading before I get out of bed, 9.9
6:52 I've weighed my breakfast so I can work out my carbs (50g) and calculate my bolus(7u) and correction dosage(3u) and inject 10u of quick acting insulin approx. 20mins before I’ll eat – take the dog out for a quick walk.
7:12 I do another test, 10.3 and eat my breakfast. Make lunch so I already know I’m going to have ~60g carbs for lunch.
7:30 I inject my slow acting insulin (22u)
7:35 heading out the door but before I jump in the car I have to do another blood test (9.2).
09:10 Log on to diabetes.co.uk to see how everyone else is going writing their own version of events. 2hrs after breakfast I do another test to check my correction is helping lower my Blood sugar – it’s not, 10.2 but having had a stressed traffic jam fuelled journey I’m not surprised, I normally drop low come late morning so maybe this morning it won’t! Set a reminder for 11am to check.
9:45 Check in to the forum.
10:55 feeling peckish, either I’m just peckish or my BS is dropping…..oh……..13.1, so I’m just feeling peckish and I don’t understand why my BS is that high. I’ll be having lunch in just over an hour so will have some crisps and correct then. Puzzled though.
12:10 – Lunchtime, 65g Carbs, bolus calculator suggests 21u, as my bs is now 13.9 that’s 13u to cover the carbs and 8u for the correction, I inject and eat – set reminder to test in 2hrs time. Logon and browse the forum whilst eating lunch.
14:00 facebook update, someone posted about the Libre – others post about getting an email to say they can now buy it, after waiting for months - hopefully my turn won’t be too far off.
14:10 reminder to test – 14.7, today is not a good day. Wish I had a Libre following on from the post above about someone who was all over the place pre-libre, now because of it they’ve made changes and in total control.
14:45 check in on the forum, read a few posts and decided to post about my bad day so far today. Also comment on someone else also having a difficult day.
15:45 catchup with the forum. Thought I’d also do a test – 8.1 a bit more like it.
16:45 back on the forum and a few posts commented on, read an interesting post about someone diagnosed T1, then MODY and then T2 and then again maybe a non-type!
17:37 Back in the Car to head home, test before driving, 6.1
18:35 Teatime, no time to jab before meal unless I want cold mash and stew, weighed the mash so I have an idea of how many carbs I having, works out at 45g, my BS is 6.6 and so I jab 10u
20:36 I’m off out so do another test before driving, 5.7
22:15 Tested before driving home 10.4, either the stew&mash had more carbs in than I thought or the 1 beer I had did it!
22:40 home and ready for bed, now 11.2 so do a correction of 5u and also 24u of slow acting insulin.

 

[slip]

just posted my day now have to go back and read everyone else - I don't think I'll get much work done today!

My hba1c as of last thursday was 7.3, down from 8.1 in May.

 

[lizdeluz]

This stuff is revealing though. For me, yesterday, a typical day, I checked my glucose levels 38 times. I thought about or acted on Diabetes some 53 times. I bolused on nine occasions. I am predicting an Hba1C of 6% on my next run. I am well under the NICE guideline barrier. I have not had a serious hypo requiring assistance for 8 years. But the point of the exercise is to show that to achieve this, and even an Hba1C under 7.5% takes a substantial amount of hard work. It's no wonder that only 7% of all T1s in the UK achieve the <6.5% target and that for the higher number, 7.5% it is around 27%.

What this reveals across everyone is that it is far harder to manage T1D than the majority of people (including HCPs) realise, and it helps to highlight the "Loneliness of the Long Term Diabetic". This is why communities like this one are so important. How could someone you know and love appreciate just what you do every day of your life without having lived though it?

I feel it was high time we had a record like this on the forum. I know it's a bit of a drag to write it all down:

• Our decision-making
• with reasons and explanations
• Our data-input with its very short shelf-life

Every single day is a one-off, not a hope in hell that a HCP or consultant can advise all T1s on day-to-day management. This forum is a first. Thanks to you, @tim2000s, for this thread. We're all trying to get smarter and catch that runaway train!

 

[tim2000s]

Thanks for the kind words @lizdeluz. The link to this topic is in my blog post summarizing my findings. I know it has been read by at least three diabetes consultants and Diabetes UK.

It's also the reason why I use sugar surfing as a management technique. T1D management is transitory and even when you have only twice daily long acting insulins, you still have "everyday ups and downs" to deal with. Please feel free to share it with whomever you want to. I'm glad that you see the purpose in my madness!

 

[JaneC]

8.10am, BS =10.7. Annoying and unusual as planning to do a 5 mile run at 9.30am and normally don't eat until lunch when I exercise/run so that I have no insulin on board, am v sensitive to it. Suggested bolus was 1.10, decided to halve it to .55 u.

9.28am, test before run, BS = 9.4. Bolus .25u.

10.53am, end of run, BS= 3.5. Am driving home so stay for coffee & biscuits to raise BS before driving. Bolus 1.5u to cover this.

11.51am, BS 5.1. Drive home.

Post exercise which I do most days, my sugar rises so have recently instigated 90mins of 100% basal increase at 11.00am so bring BS in line with lunch, this maybe as a result of not eating until lunchtime, it seems to be working.

12.56 BG =5.3, give 4.4u bolus for lunch.

Lunch was soup, 1 thick slice toast, Cappucino , large orange and banana.

16.06pm BG= 4.4.
17.17pm BG = 2.6 , was feeling low but about to have tea and cake so bolused 2.5u and ate immediately.

Activate Libre sensor after 3 days off, hooray! Fingers get a rest.

Go to weekly pub quiz and have regular Thai meal of rice and prawns, this is a bit of a failure this week, each week it varies! Rice is evil but sometimes I win but not tonight. Oh yes, forgot the chips at half time, about 10.
Nothing ever the same.

BS at 8.10pm is 4.9, bolus 5.25u, 3.25u immediately, 2u extended for 2 hours.

11.00 BS is 11.5 and rising so used temp basal of 40% for 90 mins. This wasn't retrospectively a good idea as BS was 10.7 the next day so another morning with a bit of insulin on board before running, the Libre indicated my BS was around 10/14 all night, normally it's around 4-7. . Next week I'll increase the evening bolus, still extend though and then do small correction if needed before bed.

That's it, sorry if bored, I am a bit!

Jane

On Omnipod pump, use a Libre much of the time when feeling flush, last 2 HBa1C's have been 37, I'm pleased unlike the clinic and have been type one for 30 years and so far no complications.

 

[slip]

I'm amazed no one has made comments about each others day and why they did such and such or why they didn't do something else - but then again we're all aware of how different we all are I suppose! Which in turn just highlights the fact 1 size doesn't fit all.

This has been a really interesting thread, we should do it more often!

 

[Jestred]

thanks for all that have shared the day of a life as a T1, it has been a great insight and a calming effect, As a new T1 recruit I have often wondered if I'm doing things correct and very worried about the amount insulin I'm injecting. I will endeavour to record and share a day of the newbie T1 shortly

 

[tim2000s]

I'm amazed no one has made comments about each others day and why they did such and such or why they didn't do something else - but then again we're all aware of how different we all are I suppose! Which in turn just highlights the fact 1 size doesn't fit all.

This has been a really interesting thread, we should do it more often!

On page one, @himtoo and I discussed the insulin resistance seen when changing cannulas. Doesn't that qualify?

 

[slip]

No!

 

[lizdeluz]

I'm amazed no one has made comments about each others day and why they did such and such or why they didn't do something else - but then again we're all aware of how different we all are I suppose! Which in turn just highlights the fact 1 size doesn't fit all.

This has been a really interesting thread, we should do it more often!

An interesting comment. I think what you say points to the fact that there is an almighty great vacuum at the centre of care for T1s. In a sense it depends on how long a T1 has been T1, and whether they've had up to date advice and access to the latest (and often expensive) technology. There are those who have graduated to a pump or who have never known anything else, and those who are using CGM. There are those who are using MDI, a system which is inadequate at best.
So when it comes to looking at the blogs of T1s, I want to tread very carefully, in the knowledge that we don't all have the same quality of care, the same experience over time, the same expectations, etc etc.
I agree that there is a strange silence around the way T1s are treated, cared for, and look after their own health, and, until recently, T1s had little opportunity to explore this. Although there are many of us, we are a minority in the diabetes field.
I'm happy to start commenting and asking questions about how others deal with their T1, as long as everyone takes it in the spirit intended, i.e, so that we can learn.
Nobody wants to open a can of worms.

 

[tim2000s]

One of the main reasons for doing this little exercise is that it needed to start somewhere. As @lizdeluz says, there is precious little knowledge as to what a T1 does day to day. When I tweeted my blog posts to both Diabetes UK and some of the consultants on Twitter, I had an interesting response. They were very interested in the amount of interaction and the decision making processes. It's not something they get to see, may be ever, in the process of seeing patients at Clinics, once a year.

I'd really like everyone to share their diaries like this with their Diabetic teams, just to help spread the word as to what life really means as a T1, whether you have an Hba1C of 38 or 72. Unless we are proactive in sharing this information, it simply won't get looked at.

 

[slip]

@lizdeluz some interesting comments there. As you can tell I MDI, and there was me thinking MDI is quiet good and effective, because when I moved to MDI it was at the time the way to go, the newest thing on the block so to speak and correct me if I'm wrong the current standard treatment style for newly diagnosed T1s. Maybe my thinking if floored because I know no different - because i'm just ticking along under the radar with HbA1Cs in the acceptable range (just!) different management styles aren't mentioned during clinic visits. Then again if it ain't broke don't fix it!

Having read some pumpers daily blog there's a lot I don't know/understand and therefore I'm thinking my knowledge and understanding does need a catchup with current thinking and treatments?! but where would I get an open and frank discussion?

I'm happy to answer any questions regarding my daily blog posted earlier in this thread and wouldn't take any offence to any comments aimed at it - A) I might learn something new and B) like @Jestred has already posted a new T1 might learn something (from my mistakes!).

I agree that as T1s, once we're perceived to be on an even keel and managing a potentially crippling diseases with ease, we are left to our own devices - when we all know what a roller coaster ride it really is.

 

[lizdeluz]

@lizdeluz some interesting comments there. As you can tell I MDI, and there was me thinking MDI is quiet good and effective, because when I moved to MDI it was at the time the way to go, the newest thing on the block so to speak and correct me if I'm wrong the current standard treatment style for newly diagnosed T1s. Maybe my thinking if floored because I know no different - because i'm just ticking along under the radar with HbA1Cs in the acceptable range (just!) different management styles aren't mentioned during clinic visits. Then again if it ain't broke don't fix it!

Having read some pumpers daily blog there's a lot I don't know/understand and therefore I'm thinking my knowledge and understanding does need a catchup with current thinking and treatments?! but where would I get an open and frank discussion?

I'm happy to answer any questions regarding my daily blog posted earlier in this thread and wouldn't take any offence to any comments aimed at it - A) I might learn something new and B) like @Jestred has already posted a new T1 might learn something (from my mistakes!).

I agree that as T1s, once we're perceived to be on an even keel and managing a potentially crippling diseases with ease, we are left to our own devices - when we all know what a roller coaster ride it really is.

There you go, I already regret saying that mdi is inadequate! I'm on mdi and have been a very long time. When diagnosed (in 1985) I was put on 2 injections a day, I think, though my memory of Insulatard and Actrapid is a bit hazy now. This is where the concept started of feeding or keeping up with your insulin. Mdi was then seen as new and effective. However, in the early days of mdi, too much testing was frowned upon as being too intrusive in the life of a T1, (!) and we were using all those test-strips!! Chin up, was the prevailing idea, and get on with your life.
The dietary advice I had in 1985 has since pretty much been discredited, and I now do LCHF and am using much less insulin than formerly, when a recommended T1 diet included lots of carbs as standard.
I call mdi 'inadequate' because, unlike a pump or cgm, you only get a snapshot at each test, rather than a constant mapping of the direction of your blood sugar.
I do a LCHF diet because I think that eating carbs caused weight gain which in its turn made controlling blood sugar even more difficult than it already is. LCHF has definitely been helpful to me..
I'm sure that clinics are quiet about costly new treatment regimes and different management styles. T1s are put on waiting lists for these. They have to prove their eligibility. Presumably, T1s are cherry-picked. I'm not complaining about this, I just think it's a budgetary fact of life but one which may change as time goes on.

'I agree that as T1s, once we're perceived to be on an even keel and managing a potentially crippling diseases with ease, we are left to our own devices - when we all know what a roller coaster ride it really is. '

I thought this was another interesting comment, @slip. We could argue that clinics accept lower standards of diabetes care and self-management than you will ever find on this forum. (Not surprising, really, because this forum consists, on the whole, of people with diabetes!) I have drawn the conclusion that this is because the forum is a worldwide network with a lot of scrutiny, (and @tim2000s is increasing the scrutiny via this thread) whereas a clinic gets on with work at the coalface and tends to promote its local standards. So this forum ( and other networks like dietdoctor.com) are providing a very important service of informing people with diabetes at large and their doctors, but, inevitably, the patient has to wait patiently for care/treatment to evolve.
I also think this forum does a great job of empowering people with diabetes to look after themselves better.

 

[fairylights]

One of the things I picked up was - should I bolus the missing basal before I disconnect and have a shower. I think the answer is probably yes, because I have an horrific dawn phenomenon my basal setting are a massive 3.1 for 2 hours before and after I get up. My 20 minute disconnection for a shower in this time means that I am missing a whole unit and probably explains the rise that I usually get between getting up and eating breakfast. Then on the odd day it goes down ..... sigh .....

 

[Mrs Vimes]

I bolus for a shower too @fairylights ! I don't eat breakfast though because it can be massive!
My body goes OH MY GOD you are about to be chased by a bear just after my first coffee of the day. Mine goes on for about 4 hours.
Days off? It happens but sometimes not.
My hbA1c was 40. If I didn't have DP I'd be so much lower.