MEGA pressure to get levels within target range

[Mumlé]

I'd like to see what parents of young children on pumps think of this one, and also adults who are managing it on their own:

Lola went on pump in the last couple of months. Since diagnosis her BGs had been all over the place: 3-18 a few times in a day, no bother..., overnights running at mid - high teens. Now we have the pump. I did know it was meant to be harder work, but you never know do you until it happens. Zillions more BG tests (well it feels like a hell of a lot more), and what I hate is this huge pressure to get BGs perfect, eg between 5 and 8 all day and night, every day. Yes now I just wrote that, I realise this is the problem! How are they going to be perfect? But that's what I feel because we've got the best bit of kit available for managing it, and it seems that it's now up to us (mostly me) to get it to do it's best. But that extra pressure on top of the high maintenance thing of it is doing my head in. Any tips? Like what would you aim for? We haven't even had a A1C or whatever that thing is yet, because basically there was no point because Ls sugars were so rubbish.

 

[Pumper_Sue]

Charlotte..............and breath 🙂
I doubt very much people manage to do this 24/7 365 days of the year. With kids near impossible I would have thought.
We are humans not machines so relax. 🙂
You are doing a fantastic job, be proud of what you have achieved.

 

[shiv]

I couldn't agree more with Sue. You're doing a fantastic job!

I do understand where you are coming from in regards to having 'perfect' numbers. I feel like that a lot. I get moments of 'but I have a pump, things are supposed to be in range all the time!' which is just madness! The pump doesn't take away diabetes - it's just another tool to use to get insulin into the body. It isn't a magic wand!

HbA1cs are the thing health care professionals look at in terms of how 'good' your control is. I think the ultimate aim is to have one at 6.5% or lower (is it still 6.5% someone? they always seem to change that) - but you'd need to speak to your healthcare team in terms of what they want to aim for for L. Some consultants want children to run slightly higher to avoid hypos, but don't let a consultant tell you that a hba1c of 9% or anything like that is fine - the lower the better, as long as L is safe and not having lots of hypos.

Mine is currently 7.2% but I want to get it below 7%. I'm nowhere near ready to have children, but think in a few years time I might be, so I want to get my hba1c down and low for that.

And again - breath. You are doing a fab job 🙂

 

[bev]

Hi Charlotteking,

I think you are putting yourself under far too much pressure. Dealing with diabetes is difficult - dealing with a diabetic toddler is even more difficult - add to that a pump start and that is a lot of hard work - so stop trying to be perfect.🙂

The pump is a good piece of technology - but it isnt a 'magic wand' - it is just a tool - the diabetes is still diabetes and there will be 'highs and lows' whether L was on injections or the pump - it is the nature of the beast.

I think (?) the recommended HBA1C for a toddler is about 8% because it is recognised that it is difficult to get it lower. You are doing great so stop worrying.🙂Bev

 

[margie]

, and what I hate is this huge pressure to get BGs perfect, eg between 5 and 8 all day and night, every day. Yes now I just wrote that, I realise this is the problem! How are they going to be perfect? But that's what I feel because we've got the best bit of kit available for managing it, and it seems that it's now up to us (mostly me) to get it to do it's best.

In writing that you realise that things aren't going to be perfect you have taken the first step.

You sound like you feel you have been abandoned and left to fend for you and L. If you are not getting support from L's team call them - tell them what you need.

You asked for tips - maybe if you give a few examples of where things are tricky for you some of the other parents may be able to pinpoint things you can try.

Remember that none of us are perfect, we can all only do out best.

I hope you are able to relax a little and that someone is able to give you some handy tips.

 

[everydayupsanddowns]

Hi Charlotte

Sorry to hear you feel under so much pressure

Truth is A1c is just a useful guide for the healthcare bods that they can kind of rely on - people presenting spreadsheets of their own BG readings have been known to be a bit economical with the truth sometimes 🙄

But A1c is just an average, and you can get the same average swinging wildly from hypo to high or with a beautiful steady undulation. So A1c is not the be-all and end-all.

My feeling on the tough targets issue is that it's important that you feel that the range you are aiming for is
a) going to be effective in keeping L well long term
b) something to aim for (but realise that diabetes just has it's own ideas about things and you not managing perfection all the time does not mean you are 'failing')
c) keeping L's BGs as near 'normal' range as is practicable, but without meaning she's going hypo 'too much' (there's a whole new conversation right there)
d) is something that YOU agree with, support and decide on - rather than something that 'they' say you must do.
e) is not completely fixed. Start where you are and aim to bet a little better, then see if you can improve on that. Then learn some more, then come across a new problem with growth spurts/hormones/phases of the moon, then solve *that* then try to get back to where you were, then try to get a bit tighter... repeat to fade...

In the past I've found it saved my sanity to have a sort of 'grey area' around the range. Surrounding my 'ideal' range with a slightly looser 'acceptable' range and trying not to beat myself up too much when things missed either of those. Nibbling away at issues. Trying to spot patterns. Trying to solve one tiny problem at a time.

It doesn't have to be perfect straight away. That really would drive you nuts.