Grumble grumble…

[everydayupsanddowns]

Yesterday I had to go for a swift 5-10 minute stump around the block 3 times over the course of a couple of hours to kickstart a correction that was doing nothing. Despite having (what I thought was) dosed about 1u too much for my evening meal.

In the end I swapped out my infusion site because it was feeling a bit sore, and I wondered if it was failing.

And now this morning, having prebolused and waited longer that usual, I’ve had my standard breakfast, and my levels are just not doing what they normally would.

So now the spectre of ‘gone off’ insulin looms. It’s 20 days out of the fridge, and it’s the vial I took as a spare to a festival so it was a few days in a Frio inside a warm tent.

It may not be that, and there’s about 20% of the vial remaining which I hate to waste, but non-functioning corrections (unless I am walking around the block) are getting a bit tiresome.

Bah!

 

[rebrascora]

I hate to say it but maybe your body believes summer is over and you need to revert to your winter basal profile. Can't say I blame it if it is confused. I have worn my winter clothes and got cold and wet numerous times in the last few weeks. This weather really has a lot to answer for.

 

[everydayupsanddowns]

I hate to say it but maybe your body believes summer is over and you need to revert to your winter basal profile. Can't say I blame it if it is confused. I have worn my winter clothes and got cold and wet numerous times in the last few weeks. This weather really has a lot to answer for.

Yes this is also a possibility of course.

There are always so many things it could be aren’t there!

 

[Docb]

I have a grumble scale for my facial neuropathy .. maybe you need one for T1 blood glucose control.

Mine goes something like.... niggling, interesting, irritating, interfering, concerning, complete pain in the whatsit, debilitating, something 'orrible is going to happen if I don't get help.

Maybe you can come up with other words to refine the nuances in such a scale.

 

[sololite]

Festival, I'm envious! So many variables to consider aren't there. I'm sitting here recovering from a low because I took too much novorapid this morning and then walked down and up the hill twice to go to the shop. I took too much to correct an overnight high and that was because .... I wonder if some clever people could point their AI at the DUK forum data set and pull out all the factors (40+?) and scenarios that affect our BS tuned to our own personal attributes/lifestyle and produce a predictive tool that tells us to how much insulin to take . Even a retrospective view on what led to our lows would be super helpful. Hope you are back on track, regards Chris

 

[rebrascora]

Festival, I'm envious! So many variables to consider aren't there. I'm sitting here recovering from a low because I took too much novorapid this morning and then walked down and up the hill twice to go to the shop. I took too much to correct an overnight high and that was because .... I wonder if some clever people could point their AI at the DUK forum data set and pull out all the factors (40+?) and scenarios that affect our BS tuned to our own personal attributes/lifestyle and produce a predictive tool that tells us to how much insulin to take . Even a retrospective view on what led to our lows would be super helpful. Hope you are back on track, regards Chris

I much prefer to rely on my intuition than technology for dose adjustment and the more I practice the better it gets. Currently basking in the glory of a successful 1.5u increase in Levemir last night to give me a morning reading of 6.7 and that despite a midnight feast! Have I mentioned just how much I love the flexibility of Levemir and my trusty Libre reader!
Apologies to those who get sick of me raving about them both! 🙄

 

[Sally71]

Walking used to drop my daughter’s blood sugars like a stone, she can’t do that any more I think her overall insulin usage must have gone up quite a lot since she’s been stuck in a wheelchair and can’t do any useful exercise. She’s also now been diagnosed with chronic fatigue syndrome (used to be called ME) which makes it hard to even get out of bed some days, I think she’d quite easily sleep for 15 hours a day sometimes if I didn’t go in and wake her up!

But regarding insulin usage, she HATES waste and always tries to run her pump down to 0 so that she doesn’t waste any more than necessary, which unfortunately means it can require refilling at some very awkward times sometimes. But she can’t bear the idea of doing it a few hours early at a more convenient moment when it’s got a few units still in it 🙄

 

[Sally71]

I have a grumble scale for my facial neuropathy .. maybe you need one for T1 blood glucose control.

Mine goes something like.... niggling, interesting, irritating, interfering, concerning, complete pain in the whatsit, debilitating, something 'orrible is going to happen if I don't get help.

Maybe you can come up with other words to refine the nuances in such a scale.

Grumble scale… Love it! We’ll have to think of something similar for all my daughter’s problems!

 

[SB2015]

I like the idea of a grumble scale @Docb

@everydayupsanddowns when things are awry I think wasting some insulin has to go to the bottom of the list, and your health has to come first. It sounds like a likely cause, as well as the possibility of skanky cannula site, the weather, fat content, …

Your grumble is on the low end of the scale and glad you have a place to have a grumble. I hope that your pump sorts itself out and recognises what its job is. You do a brilliant job as your pancreases, and remind us of the all of the things that we juggle every day. Look after yourself.

 

[Docb]

@Sally71, @SB2015. There was a slightly serious part to my post. One of the things I find so difficult when talking to the medics is to find words to describe the neuropathic sensations, particularly when they are getting worse. They have no way of objectively measuring it, there is no common scale for describing it, and different people will have different tolerances to what could be the same sensation. @everydayupsanddowns idea of grumbling immediately struck a cord with my experience and his reference to grumbling sent my silly mind straight to the idea of grumble scale.

PS... one day a medic will ask me what it feels like and I will hit them in the middle of the face with a sock filled with wet sand and say..."A bit like that, you tell me".

 

[SB2015]

At the other end of the glucose scale I walked to Pilates this morning after my normal breakfast, remembered to bolus , spotted my levels were in the middle so did a bit of a sprint to lift them before Pilates (not worried about the weird looks from passers by). So all normal…. And then had a hypo at Pilates, in spite of the HcL. Some days just don’t work out like they are supposed to. I will put it down to change in weather, and enjoy the lemon cake I am treating myself to.

 

[nonethewiser]

If you've changed the colour of your underpants/boxers that could be to blame.

 

[everydayupsanddowns]

Well the grumble plot is thickening.

The insulin has been behaving like insulin from lunchtime onwards.

Which I was handily able to spot, because I had precautionarily dosed for a phantom 10g of extra carbs at lunch… and was then treated to multiple “hypo imminent” nags all afternoon.

Joy!

The perfect end to the day will be if my evening dose misbehaves again and I have to fight rising BGs until midnight.

If you hear some primal-scream-raging coming from a westerly direction you’ll know what it is

 

[Inka]

My guess is the cannula. Mine likes to do that sometimes 🙄 I think it enjoys winding me up! My blood sugar will stay unnaturally high for hours; I begin to suspect the cannula/site; and then as I’m about to change it, my blood sugar plunges down, and I swear I hear my set sniggering and saying, “Only joking!😛 “

 

[everydayupsanddowns]

My guess is the cannula. Mine likes to do that sometimes 🙄 I think it enjoys winding me up! My blood sugar will stay unnaturally high for hours; I begin to suspect the cannula/site; and then as I’m about to change it, my blood sugar plunges down, and I swear I hear my set sniggering and saying, “Only joking!😛 “

I swapped my site last night (it was feeling increasingly sore as the rage bolusing continued!) - so this would be two of them ganging up on me

 

[SB2015]

Sometimes they do gang up on us!!!

 

[trophywench]

Couple of weeks back, having had a couple of months of silly high BGs (unpredictably sporadic so really annoying) I just decided to scrap every ml of insulin I currently possessed and start again with all new, but of course- it's never new when we get hold of it, is it? and we never have any idea how well or the opposite it's been kept along the way, do we?

 

[Leadinglights]

@Sally71, @SB2015. There was a slightly serious part to my post. One of the things I find so difficult when talking to the medics is to find words to describe the neuropathic sensations, particularly when they are getting worse. They have no way of objectively measuring it, there is no common scale for describing it, and different people will have different tolerances to what could be the same sensation. @everydayupsanddowns idea of grumbling immediately struck a cord with my experience and his reference to grumbling sent my silly mind straight to the idea of grumble scale.

PS... one day a medic will ask me what it feels like and I will hit them in the middle of the face with a sock filled with wet sand and say..."A bit like that, you tell me".

You got me thinking that we really do need more words to describe PAIN. It is always difficult to explain to somebody else exactly what the precise feeling is. The pain in my knee can have many guises depending on, am I just sitting, am I walking, is there pressure on it, most of the time it is like a creaky rusty hinge so very stiff but then the pain in my shoulders can be aching, stabbing, sore with pressure from a bra strap, itchy. Yet all we have is being able to say it is painful.

 

[helli]

Definitely need more ways of describing pain and I wish HCPs could define what they mean.
On multiple occasions, I have been asked if something "aches" which may seem an obvious thing but when I ask what they mean, I usually get "you know, aches".
I must admit, I use terms like "ongoing background pain" and "short sharp instant pain when I do something ".
But then I get "on a scale of a to 10 how would you rate the pain?" But do they mean the background pain or the short sharp pain because they have very different values.
And then there is the impact on my lifestyle. I would consider a pain that stops me walking as more severe than one that only happens when I drive. But yet, HCPs seem to think driving is more important. I guess that is about getting to know the patient rather than making assumptions.
Don't get me started on the physio who listed how I should do housework chores when I had my hysterectomy but had no idea about gardening or cleaning the car. I decided against asking her about climbing!

Sorry, rant over.

 

[Tdm]

Ah, yes, pain. I recently had kidney stones, which is supposed to be very painful....but i rated it 6 /10 cos i could imagine all sorts of hellish pains worse. May be just have high pain threshold, or a dark imagination