Sick of Counting! Grrrrr

[AloeSvea]

Hi y'all. In the last few weeks I have found myself looking up 'diabetes burnout' and, the official phrase in my country (Aotearoa/New Zealand) - 'diabetes distress'.

Why? You might ask. Well, here I am on the soapbox -

I'm sick of counting! (Self inflicted, due to N=1, and being asked to by medical practitioners.) I'm sick of counting blood glucose test strips to fit some bizarre criteria of appropriate for a type two (I gave up! Which I think was the intention, and self-fund now, which - yeah - I think was the intention). I'm sick of counting up trips and months and years to hospitals for retinopathy tests (somehow my retesting call up what-not has gotten lost in the - what? I have no idea), I'm sick of counting the numbers of test results, I'm sick of averaging my FBGs for my latest experiment (counting!), I'm sick of counting carbs, counting walkies and lifting for my 'exercise' quotient, counting the years passing, counting my life expectancy when it changes, counting my waist circumference, my weight, my ratios, my ratios when my blood lipid results get back....

And why am I sick of it now? Because a new GP told me that if I go and get a new HBA1c test a day too early from the stipulated three months, the lab will send the specimen back. (new strict rules apparently). I asked her what then, was the date I could have my next HBA1c, to the day, if to the day is so important now - no reply. I asked the practice nurse to get back to me on that - no reply. Oh! I think - the onus is on me to work out the three months is exact, between HBA1cs. I have to count! And gee - I hope I am counting correctly! Because - yeah - this is my responsibility now. Otherwise, my specimen will not be tested.

I rang the labs contact number for enquiries. How do they count three months - is it business days, or? No reply.

Grrrrrr! I'm so so so tired of counting....

Eight years , so far, with type two, just felt like a really long time. And, hopefully if I can keep my kidneys and my heart as healthy as possible with way too high blood glucose levels - I get to live a couple of decades more. and yeah - I just counted that up in my head! (Did I tell you I'm sick of counting?)

Type 1s/SIDDS and SAIDs are probably rolling their eyes at me - and understandably.

But is anyone else getting sick of counting? And being asked, yet again, to count some more?

Any yaes or naes - all - much appreciated.

 

[Antje77]

Type 1s/SIDDS and SAIDs are probably rolling their eyes at me - and understandably.

I completely agree, as a T1! (Not sure what SIDDS and SAIDS are though.)

You're not talking of counting stuff to manage your condition (which can be an annoying chore all by itself, but at least counting that stuff has a direct correlation to improving diabetes, I'm not too bothered with that part), you're talking about paperwork, having to prove yourself, advocate for yourself, dealing with people who have no clue but have the power to decide to grant you your wishes or not, dealing with people who tell you what to do when it may not the best course for you, dealing with people who blame you for whatever they feel you're doing wrong, even if they have no clue, and you still have to play nice.

Just last week I told a researcher how diabetes care should be more individualised.
I mean, I can have blood work 4 times a year and have hospital appointments with endo/dsn afterwards without issue, which is not something helpful to me. For me, ideally is once a year, while I like my endo I don't like going to the hospital, and I'm doing well so no need for bloodwork all the time. I can call if something arises instead.
But can I get extra testrips instead (which are a fraction of the costs of those hospital appointment)? No, of course not! Not protocol.
So I'm left begging for teststrips on Facebook and fighting my team to not have to visit them for appointments of the "How is it going?" "Very well, here, see my graphs and blood work." "Great, see you in three months" variety.

I have things pretty much going as I want to have them by now but this took me years of writing letters, making phonecalls, telling my endo I'd come once a year or not at all, her choice, begging for a Libre, begging for extra strips (got them but not quite enough), phonecalls and emails with pharmacies who misunderstood scripts for specific insulins or didn't realise that teststrips for someone newly on insulin (no sensor at the time) over the Chrismas holidays is rather essential.

Like I told the researcher, diabetes would be much easier without all the paperwork and advocating for yourself, and if I could choose to get rid of either the paperwork or the diabetes itself, I wasn't too sure which one I'd choose.

 

[AloeSvea]

I hear you @Antje77. Yeah.

I particularly hate having to justify being state-funded for stuff, so I really hear you on that. I keep looking the GP/practice nurse/pharmacist in the eye and saying, "You know once a week kidney dialysis isn't cheap, right? And amputations! And bariatric surgery. They are REALLY expensive to the tax payer. And I'm working hard on trying to avoid those things..." (Please know - I don't think folks who get those things are costing the state too much! Not at all. It's just about presenting, feeling like I am having to present, a cost effectiveness argument, as in - bean counting!) (Counting!!)

 

[AloeSvea]

SIDD = Severe Insulin Deficient Diabetes, SAID=Severe Auto-Immune Diabetes, according to the Swedes. Love those definitions. Hasn't caught on though, the way I would have liked ...

 

[Antje77]

SIDD = Severe Insulin Deficient Diabetes, SAID=Severe Auto-Immune Diabetes, according to the Swedes. Love those definitions. Hasn't caught on though, the way I would have liked ...

Well, I almost certainly have autoimmune diabetes and I certainly have insulin deficient diabetes, and I also have insulin resistance, but none of this means I have severe diabetes thankfully!
Not so sure I like the ambiguity of those terms.

 

[AloeSvea]

@Antje77 - maybe your insulin resistance is mild?

The Swedes' other terms are mild age related diabetes (MARD), and mild obesity-related diabetes (MOD), and 'my' one is another severe, as in severe insulin resistance. (I have started calling 'my' diabetes 'weight-loss resistant diabetes' - just to remind folks that there are some that can't kick it with lots and lots and lots of weight loss!)

I don't mind the word 'severe', but I think I understand how you feel about it.

LADA is included under SAID. SIDD is the chemically/pharmaceutically/disease-induced and pancreas-wear-out diabetes. Sorry if I sound a bit glib explaining these terms - I don't mean to be. I like the straight-talking Swedish thing, but understand it can be too too for lots of cultures. (Although folks from the Netherlands can be really direct too, no?)

Just to keep the theme of counting going - lots of numbers on tape measures, sadly, lots of numbers on scales - those lines between the numbers at any rate. What a bore counting re weight loss and gain! And preferring to minus re the HBA1c, as in my blood glucose going down on the next one, rather than counting on my hands, over the last few years, the numbers going up...

And counting carbs! Wish my eyesight was better, and supermarkets can be so gloomily dark. I have to say, since @Oldvatr's trick of anything under 10g of carbs per 100g being OK for consumption, reading the carb number on nutrition labels has gotten a lot easier! Many thanks for that one Oldvatr!

 

[AloeSvea]

ps - many thanks for the hugs, folks! Love those virtual hugs...

 

[chrisjohnh]

Hi y'all. In the last few weeks I have found myself looking up 'diabetes burnout' and, the official phrase in my country (Aotearoa/New Zealand) - 'diabetes distress'.

Why? You might ask. Well, here I am on the soapbox -

I'm sick of counting! (Self inflicted, due to N=1, and being asked to by medical practitioners.) I'm sick of counting blood glucose test strips to fit some bizarre criteria of appropriate for a type two (I gave up! Which I think was the intention, and self-fund now, which - yeah - I think was the intention). I'm sick of counting up trips and months and years to hospitals for retinopathy tests (somehow my retesting call up what-not has gotten lost in the - what? I have no idea), I'm sick of counting the numbers of test results, I'm sick of averaging my FBGs for my latest experiment (counting!), I'm sick of counting carbs, counting walkies and lifting for my 'exercise' quotient, counting the years passing, counting my life expectancy when it changes, counting my waist circumference, my weight, my ratios, my ratios when my blood lipid results get back....

And why am I sick of it now? Because a new GP told me that if I go and get a new HBA1c test a day too early from the stipulated three months, the lab will send the specimen back. (new strict rules apparently). I asked her what then, was the date I could have my next HBA1c, to the day, if to the day is so important now - no reply. I asked the practice nurse to get back to me on that - no reply. Oh! I think - the onus is on me to work out the three months is exact, between HBA1cs. I have to count! And gee - I hope I am counting correctly! Because - yeah - this is my responsibility now. Otherwise, my specimen will not be tested.

I rang the labs contact number for enquiries. How do they count three months - is it business days, or? No reply.

Grrrrrr! I'm so so so tired of counting....

Eight years , so far, with type two, just felt like a really long time. And, hopefully if I can keep my kidneys and my heart as healthy as possible with way too high blood glucose levels - I get to live a couple of decades more. and yeah - I just counted that up in my head! (Did I tell you I'm sick of counting?)

Type 1s/SIDDS and SAIDs are probably rolling their eyes at me - and understandably.

But is anyone else getting sick of counting? And being asked, yet again, to count some more?

Any yaes or naes - all - much appreciated.

Can you not now replace some of these counting rituals - especially those measuring components of your dietary and exercise controls - by intuitive rules of thumb? For example, you know what your optimal breakfast looks like or your optimal exercise session, without needing to count? I am a counting fanatic at present but then I am fairly new to the game and not yet confident enough to let go of the numbers - but I’d expect you to be.

 

[Member34835]

Type 1 or BB (Beta Cells ********) here!
The counting thing can do your head in if you are not that way inclined ro finid it has a compulsive element to it. I have mastered the art of not counting carbs because I avoid most of them due to my inability to count them properly. As for test strips perhaps have some hope for a future where the cgms will be ubiquitous as medics realise that allowing type 2s to eat to their meters provides an individual with fantastic opportunities to best manage their condition.
As for the rest of the regime I often wonder what people are getting from their consultations and tests? I have to engage with my consultant to keep getting funded for my pump and cgm so maybe that's the answer but other than that I feel capable of looking at my hba1c, lipids, kidney and liver health and working out if further intervention is needed. I am just going to book a private foot check.
Feeling quite stroppy now just from reading your post as nobody should be made to feel guilty for being a diabetic of whichever kind!

 

[Antje77]

I don't mind the word 'severe', but I think I understand how you feel about it.

SIDD = Severe Insulin Deficient Diabetes, SAID=Severe Auto-Immune Diabetes, according to the Swedes.

The Swedes' other terms are mild age related diabetes (MARD), and mild obesity-related diabetes (MOD

What I meant is that those definitions don't make it clear if the mild/severe refers to the words 'insulin deficient/auto-immune/age related/obesity related' or to the word diabetes.

To me it reads as if some people have severe diabetes and some people have mild diabetes. And I'm very sure it would sound like that to non diabetics, possibly leading to annoying questions like 'do you have the good or the bad kind of diabetes?'
According to my time in range and hba1c I have very mild diabetes (or even no diabetes at all) but that's only because of all the work (and counting ) I put in.

@Antje77 - maybe your insulin resistance is mild?

No idea. I need pretty high doses of insulin compared to others, and even on the quickest acting insulin I can't eat a 'normal' meal without spiking. I have no idea how insulin resistance is graded from mild to severe.

ps - many thanks for the hugs, folks! Love those virtual hugs...

Have another big fat virtual hug from me, I like them too!

 

[lucylocket61]

Hi y'all. In the last few weeks I have found myself looking up 'diabetes burnout' and, the official phrase in my country (Aotearoa/New Zealand) - 'diabetes distress'.

Why? You might ask. Well, here I am on the soapbox -

I'm sick of counting! (Self inflicted, due to N=1, and being asked to by medical practitioners.) I'm sick of counting blood glucose test strips to fit some bizarre criteria of appropriate for a type two (I gave up! Which I think was the intention, and self-fund now, which - yeah - I think was the intention). I'm sick of counting up trips and months and years to hospitals for retinopathy tests (somehow my retesting call up what-not has gotten lost in the - what? I have no idea), I'm sick of counting the numbers of test results, I'm sick of averaging my FBGs for my latest experiment (counting!), I'm sick of counting carbs, counting walkies and lifting for my 'exercise' quotient, counting the years passing, counting my life expectancy when it changes, counting my waist circumference, my weight, my ratios, my ratios when my blood lipid results get back....

And why am I sick of it now? Because a new GP told me that if I go and get a new HBA1c test a day too early from the stipulated three months, the lab will send the specimen back. (new strict rules apparently). I asked her what then, was the date I could have my next HBA1c, to the day, if to the day is so important now - no reply. I asked the practice nurse to get back to me on that - no reply. Oh! I think - the onus is on me to work out the three months is exact, between HBA1cs. I have to count! And gee - I hope I am counting correctly! Because - yeah - this is my responsibility now. Otherwise, my specimen will not be tested.

I rang the labs contact number for enquiries. How do they count three months - is it business days, or? No reply.

Grrrrrr! I'm so so so tired of counting....

Eight years , so far, with type two, just felt like a really long time. And, hopefully if I can keep my kidneys and my heart as healthy as possible with way too high blood glucose levels - I get to live a couple of decades more. and yeah - I just counted that up in my head! (Did I tell you I'm sick of counting?)

Type 1s/SIDDS and SAIDs are probably rolling their eyes at me - and understandably.

But is anyone else getting sick of counting? And being asked, yet again, to count some more?

Any yaes or naes - all - much appreciated.

I hear you

 

[AloeSvea]

Type 1 or BB (Beta Cells ********) here!
The counting thing can do your head in if you are not that way inclined ro finid it has a compulsive element to it. I have mastered the art of not counting carbs because I avoid most of them due to my inability to count them properly. As for test strips perhaps have some hope for a future where the cgms will be ubiquitous as medics realise that allowing type 2s to eat to their meters provides an individual with fantastic opportunities to best manage their condition.
As for the rest of the regime I often wonder what people are getting from their consultations and tests? I have to engage with my consultant to keep getting funded for my pump and cgm so maybe that's the answer but other than that I feel capable of looking at my hba1c, lipids, kidney and liver health and working out if further intervention is needed. I am just going to book a private foot check.
Feeling quite stroppy now just from reading your post as nobody should be made to feel guilty for being a diabetic of whichever kind!

Greetings Nicole (with BB)

Agreed!

There is a compulsive element to counting. For sure. And, additionally, with the huge price hikes in food, power and petrol - there is even more counting going on - in my household absolutely. The food prices is particularly ghastly when good food is so important (heck - it is for everyone isn't it??!!) Trying to have - control. Or some control. Or more control. And over everything, not 'just' the dreaded blood glucose readings. (The last few years I have not had "good control", and I want it back!)

Re GPs: I'm trying to count my insulin production too, regarding my new treatment regime, but new GPs I am checking out at local practice - which I need for the tests - said NO. There was a mighty big YES for counting on more meds though, which I did not ask for, and do not want. Truly sad.

How do I feel about being asked to count three months myself between HBA1cs - to the day ? Stroppy is a good word.

 

[AloeSvea]

Can you not now replace some of these counting rituals - especially those measuring components of your dietary and exercise controls - by intuitive rules of thumb? For example, you know what your optimal breakfast looks like or your optimal exercise session, without needing to count? I am a counting fanatic at present but then I am fairly new to the game and not yet confident enough to let go of the numbers - but I’d expect you to be.

Hi there.

The last few years have seen big increases in my blood glucose levels for me. So many new variables with vaccine reactions (for me - super high increase in blood glucose), and responses to big changes in life circumstances. I have been trying to find out what I can change for the better, and what I can't. So yeah - blasted counting!

Being low carb/LCHF/Keto means watching carbs. I need to be eating the least amount of carbs I can get away with/without. Lots of reading nutrition panels. Lots of asking waiters and chefs about if the mayo has sugar added, or, how much sugar is added. Lots of bunless burgers when out of town. That does not go away, alas.Lots of adding up the carbs in my head! But I accepted that kind of counting a long time ago.

@Antje77 hit the nail on the head when she suggested it was the additional medic-promoted counting that was doing my head in! (If I had a pottle of BG test strips for every time I have been asked to count test strip usage by med-folk in the last few years I wouldn't have to self-fund them!)

And I would add - along with the extra tight budgeting post huge price hikes which means lots of additional counting. (Am I enjoying the word 'add' and 'additional' - oh yes!)

 

[AloeSvea]

I found a figure for 'Diabetes Distress' amongst type 2s in NZ. They divided it between T2's treated with insulin, and T2's not treated with insulin. According to this count (NZ Society for the Study of Diabetes, 2021), one in five people being treated with insulin get Diabetes Distress, and one in six not being treated with insulin.

"Diabetes Distress ranges in severity and can fluctuate over time; following diagnosis, major changes in treatment, diagnosis or worsening of complications, and heightened life stress, are times when the emotional burden of diabetes management can peak." (p.47 of the NZSSD guideline for Docs.)

The docs are being asked to look out for burnout and distress by - "Routinely ask people with type 2 diabetes about how they are coping with self-management and how they feel about living with type 2 diabetes and life in general..."

Cute! And, chuckle. (I think asking about feelings goes along the way of checking for foot health and gum health - by the wayside! ) (Much more fun for a doc to ask me to.... count test strips and count three months to the day.)

Ideals are nice though. Reading best practice suggestions sure beats counting! (I'm reading them not for fun, but for a piece I am writing.)

One of the new docs did recently help me out by telling me that an HBA1c of 52 was better than 57. Wasn't that helpful??!! Otherwise I would not have known that a reduction in the HBA1C number was an improvement. Groan.

 

[Aishia]

Agree this counting can get boring.But better in the end maybe than being like some
diabetic people who can't now count their toes.

 

[Oldvatr]

Hello @AloeSvea I hear you. As you have yourself remarked I follow an unconventional approach to my care plan. And in this instance I win. I use my approach to simplify my care as much as I can, and thereby remove the stress that leads to burnout, I have never counted carbs or calories in my life. I do not use any apps or Fitbits. I have a simple spreadsheet that I log everything in so date of last Hba1c or blood test results are documented and remembered. I update the log as part of my bedtime routine, and I test at times relative to when I eat,

My method does not give me perfection. I can have lapses and naughty days, but I use the speadsheet to tell me what my trends are doing and what my averages are working out at. That is all I need to know. The next HbA1c will do whatever it does, and will get logged and noted. I have done this for 8 years now, and I intend to continue while I still draw breath.

 

[Pipp]

Oh how I agree with you, @AloeSvea .
I am weary of it all, especially the part where I can only have my blood tests if I have the appointment for review first. Yup, crazy. Have to go and be humiliated by nurse counting ,weighing, measuring height, lecturing on carbs at every meal, exercise, etc., before I am allowed to have the blood test request forms.
They ignore the counting of weeks to wait for physio treatment folowwing assessment, (36 weeks) , the wait to get on waiting list for scans for severe sudden hearing loss, (list was closed when it reached 70 weeks, I didn’t even make it on that one), the unknown wait for my annual review for another debilitating condition, as the appointment was inexplicably cancelled because I am “already in the system”. Whatever that means. This is despite markers for that in my blood have risen rapidly. The counting of centimetres height I have lost in last three years, currently 4 cm, is overlooked by them. Apparently, I don’t count.
All I can do is count the rants I have had this last few months. Infinite.

 

[AloeSvea]

Agree this counting can get boring.But better in the end maybe than being like some
diabetic people who can't now count their toes.

Hi Aishia. If only it was just about counting in lots of 10! But I get your point. And a good point too. The sadness, sorrow, and suffering with amputations is huge, for sure.

 

[AloeSvea]

@Oldvatr - that spreadsheet sounds good indeed, and working out averages - good work.

 

[AloeSvea]

@Pipp - you know how much you count to us in the forum! "Heaps" doesn't quite cut it - heaps and beyond! More like it.

What is your nurse thinking?! I was very moved by the word 'humiliating'. A good word to describe that kind of experience in healthcare indeed.
I've been watching lots of action movies lately, so your experience made me want to swoop down in full martial-arts gear and start swinging some kind of stick, or saber shouting, "Give her the tests and treatments she needs! Now!".

I guess us discussing these things with each other is our way of waving sticks and sabers? 'Rants' - all good!