How do I relax my level of control to something sustainable long-term?

littlevoice359

littlevoice359

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My diabetes control (see attached) is in a pretty good place at the moment (HbA1c 48 +/- 1, TIR 98% - see attached). The first year after diagnosis was rough (hypos with nasty rebounds, post-prandial spikes, weight loss, constipation, basal issues), but I tackled each of those issues as well as can reasonably be expected.

That’s the good part. The not so good part is that the amount of effort I’m having to put in each day to keep up my current level of control is becoming exhausting.

My question then, is how do I relax my level of control to something more sustainable over the long term? I’m pretty sure others have been faced with the same dilemma, so any helpful advice is appreciated.
 

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You do know that you are not aiming for anywhere near 100% in range don't you? If you can get 70% long term you are doing great, so it really is down to you to lower your expectation of yourself to make it sustainable.
I will confess that it is difficult to lower your standards and I certainly would not be happy with 70% myself, but I seem to be able to maintain mid 80s to low 90% consistently with my mostly low carb way of eating and that seems to be sustainable for me, but I am retired so perhaps have more time to devote to it.

Just to be clear, I am not recommending anyone goes low carb or needs to go low carb to do this, it is just what seems to be healthier for me, but just mention it because it may be partly responsible for my more stable results. I started with mostly low-mid 90s% TIR so I haven't relaxed it much, and the lowest I have been is 78% but even when things are going wrong and I am battling and I see my TIR drop to this level, I remind myself that I am still doing really well and that is important to keep in mind.

My mindset has changed with regard to my diabetes management and I now see it more as a long running computer game using Libre, rather than managing a serious health condition. Each day throws up new challenges and I try to get the best score I can whilst still living life and dealing with those challenges. Sometimes I don't get it right and that is part of the game but other times I hit a real winning streak and on those occasions I sometimes like to really focus and see if I can get a new "personal best TIR score", but if I don't, that is OK too, I am still managing my diabetes really well because I am above that 70%.

Not sure if any of that is any help to you, but hope you can find some balance which of course is key in the long term with diabetes management.
 
Thanks for that @rebrascora. In large part due to your espousal, I switched to a low carb diet a while back (around 120g per day) and that helped a lot, with cutting back post-prandial spikes in particular.

My main reason for trying to stay in the middle range (7.5 +/- 1) is because that’s where I feel best. Also, I find that if I let myself drift above 10.5, it takes hours to come back down and, during those hours, I feel pretty crappy. This leaves me in something of a quandary. Such is life, I guess…
 
I think finding the right balance is one of the hardest things. One of the best things my daughter’s DSN ever said to me was “there’s no point having perfect numbers if that’s all you think about, you’ve got to enjoy life too”. That helped me loads. You’ve obviously realised that yourself. So I found that if we got a day when she was running a bit higher than we’d like, I tried not to let it bother me and have the attitude that it’s only one day, that will make no difference in the long run. Or if we were in the middle of doing something enjoyable, resist the temptation to keep checking blood sugars unless she’s showing signs of a problem, finish the enjoyable activity first and just allow yourself not to be thinking about diabetes for a while. Try to make it not the first thing you think about all the time.Then I gradually came to realise that she can still have good results without being quite so obsessive.
Obviously you don’t want to get too relaxed about it, but maybe try to set yourself some boundaries that are just a little bit outside what you are doing now and see how that goes
 
Yes, I too have the problem of getting stuck once I get above 10 and I actively correct at 8 at the moment. I was correcting at 9.2 but I readjusted my basal doses recently and changed my high setting as a result and finding that and an upper alarm of 8 is working better.

Are you finding the low carb way of eating challenging? Is that part of the problem in it being unsustainable?
Many people manage Type 1 very successfully on a normal healthy diet, so if the only reason you are doing it is to manage your diabetes, you may be making it unnecessarily harder for yourself. I have a number of health reasons for sticking with low carb and I have to be very proactive in correcting for protein release after meals, so there are more injections involved. I don't personally calculate the protein release but just respond to my Libre results and just jab more insulin when my high alarm goes off.
I am also not desperately strict about sticking to low carb and certainly, on special occasions I sometimes eat the same as everyone else, although I will be more careful of my portion sizes than I would pre-diagnosis. I had a Sunday roast dinner last weekend with half a small Yorkie and a roast tattie and a bit of mash and I had a small portion of Eve's pudding and custard afterwards followed by a small slice of raspberry roulade 😱.... and then cheese.... and then a brisk walk. I see such meals as a new challenge in my Libre game.
 
No I don’t find low carb eating particularly difficult. Instead of pasta I use courgette and/or carrot noodles; instead of mashed potato I have baby potatoes cut into wedges and roasted in the Airfryer. I never cared that much for rice, so no great loss there. Also I wrote my own software to take care of the tedium of carb counting. Like you I need to allow for protein 3hrs or so after dinner.

Mostly what I find tedious is occasionally having to exercise immediately after eating to keep from spiking, especially in winter when the weather isn’t so nice. Or, like this morning, it takes ages to eat breakfast because I am often insulin resistant in the mornings, especially if, as this morning, I wake up with a cold due to damp weather.
 
Ah! OK.

So, why do spikes above 10 worry you? Is it because they don't come down again or you don't know when to correct for protein? It may be that correcting for protein earlier with NR would work better, but I have never done that with NR.

Changing to Fiasp helped with the pre-bolus timing but it brought with it new challenges. I like it now and wouldn't swap back to Novo(not so)Rapid but I needed to learn to be much more heavy handed with the Fiasp at times to get the results I wanted. If my levels go high after a meal, I simply inject more insulin if I can't or don't want to exercise, assuming I have got my timing correct. With Fiasp what I find is that if don't have time to pre-bolus I can sometimes just increase my bolus to account for the lack of prebolus time. I don't think this would work with NR. It has been trial an error to learn this but yesterday, for example, I was on 8.something and I didn't have time to wait for that to come down into range (I try to eat when my levels are in the 5s), I jabbed 3 units for something that would generally just take 1.5u and that kept me under 10 and I didn't go low afterwards. If I was on 4 or 5 I can get away with eating straight away with Fiasp and not need any extra bolus. I am not sure this would work with NR and injecting more may well risk hypoing later but with Fiasp it can be both very responsive and very sluggish/watery depending upon the circumstances and for me I need to be heavy handed with it if my levels are above 7/8.
The great thing about it for me is that it is pretty well finished working in 3 hours and most of a small dose which is usually what I use, is spent in 2 hours. I often have to stack corrections even at 8 or 9mmols to get levels down, even within three quarters of an hour of each other if levels continue to rise. I really just check what my levels are doing on Libre and jab and sometimes keep jabbing until they come down. I used to be very anxious about this but I gradually became more confident with experience. This is why it took me so long to get to grips with Fiasp but once I stopped being frightened of it and learned when to be sparing and when to be heavy handed, it works well.

I am not sure I would recommend Fiasp to anyone who was anxious or not prepared to experiment because it isn't an easy insulin, at least for me it hasn't been, but once you learn it's quirks and how to get around them, it works well.

If you already chewed off with your diabetes management then a change of insulin might be the final straw or it could bring a whole new lease of enthusiasm. I just did an experiment recently where I stopped my basal insulin and just used my Fiasp for a week to cover my basal needs as well as my food and I was surprised by how much that perked me up as well as the results it threw up. Not suggesting anyone else do that and I had good reasons to do it, but all I am saying is that a change can be as good as a rest. I will also admit that it took me 2 very frustrating 3 month trials of Fiasp before I got sufficiently chewed off with it to get heavy handed and make it work, so I can't say the change to Fiasp was easy or inspiring short term but definitely has longer term benefits for me.
 
@littlevoice359 have you tried taking a Libre-break?
I find a couple of days here and there invaluable for making me ease off the obsession and realise some of the "feeling terrible when high" is psychological - if I don't know, I don't feel as bad. I don't mean going as high as 15 but a peek into the double figures at 10.2 is not awful unless I am doing intensive exercise. It also reminds me I still have hypo awareness.

Some of us have to take care with our obsessive nature - diabetes burnout is very real.
And there is no point having perfect BG if we have no time left in the day to enjoy ourselves.
 
littlevoice359 said:
Thanks for that @rebrascora. In large part due to your espousal, I switched to a low carb diet a while back (around 120g per day) and that helped a lot, with cutting back post-prandial spikes in particular.

My main reason for trying to stay in the middle range (7.5 +/- 1) is because that’s where I feel best. Also, I find that if I let myself drift above 10.5, it takes hours to come back down and, during those hours, I feel pretty crappy. This leaves me in something of a quandary. Such is life, I guess…
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Low carb can cause insulin resistance, so that might help explain the taking hours to come down bit. Also, what insulins do you take?

How do you relax your control? You have the power. It’s your choice. Let me offer you 100% TIR every single day - would you like that? Yes? The only catch is you’d have to stay in hospital on a sliding scale and glucose drip. No way, you’d quite rightly say. You’d have no life.

You need to find the balance between controlling your diabetes and living your life. With a TIR of 98%, you can definitely relax a fair bit. The aim is a TIR of 70%+.

For some reason, I’m reminded of that quote from Bladerunner:

“I've seen things you people wouldn't believe. Attack ships on fire off the shoulder of Orion. I watched C-beams glitter in the dark near the Tannhauser gate...”

“Oh, well, I’ve not really seen or done anything at all because I spend my time glued to my CGM readings or creating spreadsheets of my blood sugar, but I’ve got a damn good TIR though!”

Yes, I made that last bit up, but it’s true. Type 1 should be in the background not at the forefront of your life. Otherwise, what’s the point? Clearly, nobody should neglect their diabetes but if you let it take up such a big space, you’re allowing it to steal your life moment by moment.
 
Cheers 🙂 I love Bladerunner!
 
I do make a conscious effort to keep things in perspective. Tonight for example I’ll be meeting up with friends to play tunes, sing a few songs and enjoy a few pints of Guinness. My BG will definitely be out of range for a few hours and I’ll probably be drinking a lot of orange juice in the morning, but the trade off is worth it and I only miss my Tuesday night sessions if I’m very sick.
But, I do find some days tiring. Guess I’ll just need to be a little easier on myself. 🙂
 
littlevoice359 said:
But, I do find some days tiring. Guess I’ll just need to be a little easier on myself. 🙂
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It is really hard to find a good balance. I remember when I first came on here and people were suggesting I should relax my control or I would drive myself mad (they weren’t as rude as that but that was the gist) my thought was well they just don’t care about their diabetes like I do. The truth was that they not only cared about their diabetes, but they also cared about their mental health. It took quite a while for the message to get through to me (thanks @trophywench for persisting) and for me to get help with the burnout.

For me now the Hybrid Closed Loop with a pump and sensor has now allowed me to be hands off (apart from bolusing for meals) most of the time and with a lot less effort. Today I have started new sensors and I have to stay in manual until Friday. I can already feel the temptation to start to micro manage again.

If your TIR is anything over 70% that is great. Enjoy your evening of music and fun.
 
Evening LV.It is not easy to get the right balance and I understand the effort you need to put in to get the kind of figures you are achieving and I certainly put that effort in my first few months.
It was partly due to my wish to see exactly what could be achieved regarding TIR and also my motivation and discipline was at its highest.
As time has gone on I am much more relaxed about how I manage things and although my TIR has dropped it is still pretty good by most standards.
Also I was only diagnosed 15 months ago in my 60s so my time left managing my diabetes will be much much shorter and not comparable with those diagnosed at a young age.
Hence the threat of long term damage is very much reduced.
I am very happy with my balance as Barbara and others have said it is very important to live your best life and that way you control the condition rather than the other way round.
VBW
 
littlevoice359 said:
My question then, is how do I relax my level of control to something more sustainable over the long term? I’m pretty sure others have been faced with the same dilemma, so any helpful advice is appreciated.
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Hello, you have a fantastic TIR going on. I also hear you regarding the window you feel the best? I’ve found over the years (not just with the Diabetes management.) the harder I try, the worst the results? Nights out with old friends for me & cutting loose is where it works with the BG management. Enjoy your evening.
 
Thank you all. Tonight was a blast. A little too much alcohol perhaps but the music and songs were lots of fun. The morning might be challenging but I’ll deal with that tomorrow.
 
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