Appropriate targets and burnout

[SB2015]

I was involved in a recent event about the different tech available to us to manage our Diabetes.

I had a dawning realisation. I was aware that my driver for seeing better and better results stemmed from a DSN at the start saying
'Just keep between 4 and 7 and you will be fine'. Looking back now I realise that this was in the time before any sensors and she was referring to the finger pricks tests which we did just before meals. Not an unreasonable target and one that I achieved a lot of the time. When I moved to a pump things got better and I achieved even better premeal results.

However then came sensors ...

When I started using the Libre I was then able to see what was happening with the after meal levels and those spikes, but carried the target of 4-7 in my head too. I was persuaded to broaden the target to 4 - 10, but then expected myself to be in that range 100% of the time. I was determined, good at maths, tackled the different variables ... I did improve my TIR but drove myself to distraction trying to get to perfection which led to burnout. It took me a long while to accept that perfection was not possible, and to learn to live with my diabetes rather than try to control it (That's one from @helli that is brilliant)

I have often looked back and wondered why they didn't tell me that my targets were impossible.
What I had been set for pre meal targets was possible, but was not going to work all day and certainly not after meals.
I suspect that they did tell me this, but I didn't hear, and more importantly I had carried a target forward from before the tech.
I now stick to TIR: 70% is good, 80% is brilliant, 90% is amazing

The discussions that we had at the recent event very much focused on finding ways of making the various tech work for us to suit our needs.

• Sensors can help us to identify patterns, appropriate portion sizes, some foods that are very spikey for us, how to manage high fat, timings through the day of a pre-bolus, head off highs and lows ...
• Pumps help us to fine tune our basal patterns, make quicker changes through the day to basal patterns more easily, manage exercise more effectively ...
• Looping takes away a lot of the background thinking that we have to do day to day, but we still need to be ready to step in (driverless cars come to mind), and this often needs intervention in the extreme situations.

Each of these has its pros and cons but perfection is not part of the plan. We just do the best that we can.

 

[Inka]

Absolutely @SB2015 ! I think sometimes the smallest comment can stick in our heads and replay itself, affecting our attitude to diabetes. When I was diagnosed, there were two comments: one from a nurse telling me I could have a couple of squares of chocolate every couple of weeks ‘if I’d been good” (!) and another from a different nurse who, upon seeing a blood sugar of 12 two or three days after I’d been diagnosed, said “Who’s been a naughty girl, then?” like the 12 was awful and my fault even though they were still adjusting my insulin and the hospital meals weren’t carb-counted.

Thanks to her, I still get surges of guilt when I see a high blood sugar. I think the Libre TIR figures are perfect to ward off perfection. The bottom line is that we could spend our lives obsessed with staying between 3.9 and 6 (I know someone who corrects in the 6s) but that’s not living, is if? A life where your every waking thought is about the silly D. Like everything, it’s a balance: try our best to keep good control (70% TIR) but not at the cost of enjoying life or the cost of our mental well-being. We’re not machines and all the rules, Maths and targets in the world won’t magically give us perfection. It’s impossible and striving after it is the path to madness.

 

[nonethewiser]

Can honestly say never had a consultant or dsn set any unrealistic targets or suggest you cant eat this or that, if anything they've always been supportive & understanding how difficult it can be to control type 1.

Agree with you both that perfection just isn't achievable, to many factors involved & at end of the day we're here to enjoy life not obsess about things we cant change, for me tech we have now has made condition more manageable & takes a lot of stresses away.

TIR, happy with anything above 70% which usually achieve, not experienced burnout but probably come close in early years due lack of equipment to manage things.

 

[SimonP]

I've always found consultants to be very supportive, I think the GP staff sometimes read from the recommendations and therefore know less about how difficult (and variable) things can be from time to time (especially when telling you off for a reading that morning), but in general with some explanation and questions they also seem to be fine.

I have had issues with a dietician though (which has put me off them for life), when I was a younger (say 12 or thereabouts) away at boarding school, I had to go and see a dietician (which iirc was mandated by the hospital outpatient dept.) who told me that despite having an Hba1c of 4.8% (29 mmol/mol) I was categorically not allowed to have any sugar whatsoever on my breakfast cereal or in hot drinks and that I should cut down on all sweet things.

TBH I was really quite upset as I didn't think I'd be able to make it work if I had to do that, and even if I could somehow life would be so boring/difficult. I thought I was doing a pretty good job (probably running too low tbh) and was young enough to think that those in the medical profession know what they are talking about. The mistake I made was going on my own (I was away at school) rather than waiting for one of my parents to go with me.

I've occasionally seen dieticians since, as required as the rules change from time to time, but I've never honestly heard anything useful from one that had any bearing on the combination of my life/activities/blood glucose levels. YMMV, I hope it does!

 

[everydayupsanddowns]

Great summary @SB2015 🙂

 

[TheClockworkDodo]

Thanks, @SB2015 - that's really good advice about the tech and not aiming for perfection. Really sad though that some people have had such unhelpful and patronising comments from medical professionals who should have known better.

It's the one area where having ME has been a good thing for me, it's taught me that medical professionals are only human, that there are good ones and bad ones, and that even the good ones get tired, make mistakes, don't have all the answers, and sometimes just get it wrong.

So when I got diabetes I already knew that a lot of what I was being told was a best guess, or something which worked for most people but wouldn't necessarily work for me, or - in some cases - was just plain nonsense. Eg when I had injected Novorapid and then found myself (thanks to the ME) unable to chew or swallow food, two months after diagnosis and before I was carb-counting, we rang 111 and I asked a nurse how many grams of sugar I should have in my drink to deal with the fast-acting insulin I'd had and she told me diabetics couldn't have sugar. Glad I knew enough to know that one was nonsense 🙄

And ME is constantly throwing curveballs at you, so the ones from diabetes, like random nights when my bgl sits at 12 all night even though I did exactly the same as the previous night when it sat at 5 all night, or days when I have 5 hypos for no apparent reason - don't seem like a big deal. Irritating, but never anything I've obsessed about. And the consultant who told me I shouldn't have more than 3 hypos a week didn't make me feel guilty, he just made me feel he didn't know anything about actually living with diabetes - I don't mean that fewer hypos wouldn't be ideal, just that you can't aim for a specific number like that, you do the best you can and don't beat yourself up if the diabetes doesn't play ball.

I think do the best you can and don't beat yourself up is good advice for everyone managing a chronic condition!

 

[rebrascora]

When I was diagnosed and using finger pricks I found the premeal targets of 4-7 really challenging and I felt like I was failing when I didn't achieve them regularly, so for me it was a bit the other way in that Libre took the pressure off me. I was able to achieve high 80s to 90s TIR % from the start, after a lot of work sorting my prebolus timing via finger pricking before I got Libre, so for me Libre was and still is "liberating" and the targets are achievable and whilst I play a game with myself that when things are going really well, and my TIR is exceptional, I will push for a new personal best, but I know that is not sustainable, so it is just part of the mental game that Libre creates for me, rather than the mental burden of managing a lifelong condition which I no longer feel. I am not sure how long this state of mind will last last but it has continued to work well for me for the past 3 years I have been using Libre and I seem to have become more relaxed about the less good days/weeks because even if my TIR drops to 80% which is about the lowest I have been, I am still doing really well, so this is a really positive experience and I think the TIR guidance of 70% has been incredibly motivating and positive for me.
I think some DSNs and doctors really don't have any idea how challenging it is and how their words/comments can be viewed or possibly misinterpreted by newbies who are trying hard but struggling to hit targets or have that perfectionist nature and assume that they should be hitting these targets all the time.

I think sharing our experiences of this is important and particularly for newbies to read, so that they have a better perspective on what is possible and what is potentially dangerous mentality in managing diabetes, so a really good thread topic.
I know when I started this journey, the guidance from medical professionals was like the 10 commandments and I tried to follow them to the letter and it made me feel miserable and a failure. Thanks to the shared experiences of this forum, I now have a much more realistic understanding of what is possible and a much more positive sense of my own ability to manage it well and that I will not allow an HCP to undermine that, however unintentional it may be on their part. I guess what I am saying is that I have gained confidence and balance, but also the self awareness to regularly reassess my approach and check that I am not allowing anything to get out of perspective.

Not sure how much of that makes sense but really appreciate the input I have had over the last few years from you guys to help me achieve this mental balance and awareness.

 

[helli]

When I was first diagnosed, I was not given a target. I was given guidance on my insulin dose but that was it. I think I got my target range online.
Recently (since having a CGM) there has been a check that my target range is ok but nothing forced upon me.

Regarding dieticians, I have met a couple but they have struggled with me because they are focused on losing weight but quickly realised i don't need to and they don't have any other advice.

On the weight thing, if I was sensitive, I could have been knocked by a locum endo.
My weight is always taken and BMI calculated at my annual diabetes review. This one time, my weight was a couple of kg higher than a year previous. As a result my BMI had risen from 21.5 to 22. In my mind, nothing to worry about - a couple of kg could be down to the water I had just drunk and my BMI was still in the healthy range.
Despite that the endo (who, himself was in the obese range) highlighted my raised BMI and told me it was something to keep an eye on because a couple of kg was the start of a slippery slope.
In hindsight, I wish I had given him a piece of my mind about diabetes and eating disorders but instead I went for the "smile sweetly and carry on as I was" approach.