hopeless control

[Patricia]

Today we are off to clinic -- the pump one -- for the first time in four months. I don't anticipate the hba1c being AWFUL, but I don't think it will be better, and maybe a little worse...

Numbers have been ALL OVER THE PLACE for several weeks now, as some will know...and sympathise!...

So I'm lying in bed last night feeling Victor Meldrew-ish: E's 20 (what?!) before dinner, then still only 17.6 two hours later. He's on a short DW for pizza (first pizza in several weeks too, but we are SHATTERED from night testings and work etc), but we override pump and give one unit. 1.5 hours later and he's on 7. Okay, we think, nights have been weird, so we better not count on him not dropping again...We'll put him on a short low basal to try to get through end of the correction bolus (DW pretty much over by this time). One and half hours later he is 2! 2 on 10% temp basal! It's 1.30am.

So he obediently has juice and we re-instate the low basal for a while. This is when I'm lying in bed thinking I DON'T BELIEVE IT! An hour later he's 9. Woke up on 10. DAMN!!!

My point is this: we are going to go to clinic looking like absolute fools, I fear. I just don't know if this swinging and unpredictability is normal. We just don't seem to be able to a) see the wood for the trees or b) perhaps even find the wood or the trees. Nothing seems dependable about his levels from 7pm onward... It's has been SUCH a rollercoaster. Two weeks ago he was dragging around 2's and 3's all through the evening, not at 20!! Argh.

My OH is going today with him. He's feeling cross too, and says if they treat us like folks who don't know what we're doing he's going to explode. Eek.

It's just mortifying. The number sheets show readings which are almost ALL out of range, too high or too low.

We are going to be strong about asking for sensors from this clinic. Our home clinic is supposed to be providing them, but so far no luck. Useless bunch. We also fear that he is spiking too high from virtually EVERY MEAL. ARGH!!!

E seems to be surviving all this okay. We though are choking back fury and frustration in an effort just to keep going along with some brightness. This is taking its toll. But last night in bed it hit me: it looks like we have NO idea what we're doing, and that we are wasting the pump's flexibility, etc...

Will it get better? I can't believe we have to go along like this for years. Tom? What's your experience?

Thanks for listening.

 

[Adrienne]

Hey Patricia, stop fretting. You are doing fine.

Pizza is horrendous, I can't get it right and we are three years down the line.

Jessica has been high all week and no illness - possibly after effects of swine flu vaccination last Thursday but who knows. We are overriding the pump all the time and I've done extra set changes thinking its that, I've thrown a half bottle of insulin away thinking its that and started a new one.

She was 21 odd yesterday morning so her carer drove her home from school as she was feeling really rotten.

So onto yesterday. Had major problems with car so it was in the garage. Picked it up at 5.30 pm yesterday had no food in the house at all, not even any bread so I said ok take away delivery. Jessica chose Indian, ok then!

So we shared a pilau rice and I weighed it and used the Collins Gem carb counter so I knew that was right (allegedly). She had butter chicken but only about 4 pieces with a bit of sauce. She had a whole plain nan bread and a spoonful of peas and cheese (don't ask 🙂

I rounded carbs up to 100, decided that would cover everything. I forgot to say the word dual wave, she doesn't even bother thinking about it and gave herself the full amount straight away.

She started with a 7.0 reading before tea, which is ok all things considered.

I said she would probably go hypo quite quickly and then rebound with a high spike later from the fats etc.

So no hypo, levels stayed at 7.0 and 8.0s for hours. Yippee I thought, cracked it. Crept up to 10.4 at 11 pm, corrected. Hour later its 16.9, corrected. Hour later its 21. I am knackered as well from lack of sleep and so I made her get in with me so I could just deal with the pump without actually getting out of bed. I put her on 200 % temp basal for a few hours but an hour at a time. Finally I saw 17 again on her pump (this is all using the sensor) so knew it was coming back down. This was mid thunder and lightening at about 3 am. She woke on 10.2 which is too high but a damn sight better than I thought it would be.

You are doing great Patricia. Really you are. E is relatively newly diagnosed, your life is a whole new life and now E is pumping which again is new. Give yourselves a break, you and hubby. Everyone has bad days or bad few days. Its ok, sometimes there is nothing you can do about it.

It is normal for the HbA1c to go up on the first test after pumping. If you are the same or slightly lower brilliant but most go up so don't be disappointed if this happens ok, I won't hear of it 😛

 

[tracey w]

Poor Patricia and Adrienne, I feel for you both, so so difficult. Patricia you are not a fool far from it, you are absolutely doing your best and everthing right from what i can see, even Adrienne has bad times and look how long she has been doing all this.

Its the diabetes which keeps us all on our toes 24/7, persevere, its hard but im sure it will get better. Hope all goes well at clinic and you get good advice from your team. dont worry about the hba1c its just a number at this stage so early in pumping.

 

[Patricia]

Feel really heartened by this Adrienne, thanks. In funny way sometimes helps just to see someone else's numbers doing a jig just like ours...

E's first hba1c after pumping was down from his previous, to 6.8%. We were delighted. He hasn't had one since. He's been on a pump for nearly six months...

I think it's the *feeling* of being so out of control which is hard. Just all of a sudden: what's this?! On top of life, it's hard. I'm thinking again that maybe I can't continue with my job as it is, that something has to go...but that has all the attendant financial knock ons...sigh. I work basically full time during term time, and often in odd hours over the weekend marking and such...We're so busy, the children have such full lives...And these numbers, like flipping jack in the boxes all over the chart...

Actually, I think the pizza was the least of the problem yesterday! His crash was 3.5 hours after the end of the dual wave, so I don't think it was a significant factor. Miraculously. We had tried 2 hour 40/60. Think that 50/50 might work...

We can't handle rice though. Well, sort of. We've avoided most dual waving now for over two weeks in the hopes of dealing with numbers...ergh.

Do you ever do basal tests? We wonder about this, but it seems like what are we going to find out from it that will tell us anything for any length of time? Everything just changes so quickly. I honestly don't think his pump settings have remained the same for more than a few days at a time...so what's a basal test do?

Saying that, this morning has been instructive: went to 6 with correction, stayed that way all through morning (sleeping in, no breakfast) until at 10.45am, suddenly at 3.9. Aha! We have been pulling back and pulling back on that basal at that time, because he is still so prone to hypo that time of day...So clearly, still needs pulling back! Very clear.

Sigh.

 

[Patricia]

Thanks Tracey, really REALLY appreciate it. Will let you know about clinic, gulp. You're right about hba1c though, I'm sure. Unfortunately it's E's big measure of how he is doing. He makes it from decent hba1c to decent hba1c... he will have to deal with a disappointing one some day though...

xxoo

Poor Patricia and Adrienne, I feel for you both, so so difficult. Patricia you are not a fool far from it, you are absolutely doing your best and everthing right from what i can see, even Adrienne has bad times and look how long she has been doing all this.

Its the diabetes which keeps us all on our toes 24/7, persevere, its hard but im sure it will get better. Hope all goes well at clinic and you get good advice from your team. dont worry about the hba1c its just a number at this stage so early in pumping.

 

[bev]

I have just spent 20 minutes replying - only for it to disappear! So here is the short version!

Patricia,
You are doing nothing wrong. I sent A's sensor overlays to the other list yesterday and was highly embarrased about any comments - but needed help.

JD and Adrienne and a few others told me that the levels are not an indication that you have FAILED - they are an indication that the goalposts have moved. E's and A's requirements are changing ad -hoc because they are growing etc.

Adrienne pointed out that we had the high level set at 7mmols and it should be 10mmols - i changed it and on one particular day we are within range 88% of the time - and this is from someone who also thought we were doing badly!

Who are we to think that we will have all this knowledge that has taken Adrienne and friends years and years to find out? I am not being critical of you - just trying to get you to understand that we are very new to all this and it will take years to gain the level of expertise that the others have. In saying that i think we do know a lot - but that its ours sons bodies that are constantly changing.

Also - you have to get sensors - i love them! We can now see at a glance what a particular food is doing to him over hours. We can also react very quickly to stop hypos and hypers with the alarms. We have had a horrible time for the past 5 weeks - but i do know that without sensors - things would have been much worse!

Please dont feel like a failure - i did - but the others have put me right on that! You are only a failure if your doing something wrong - but your not - so what if the DW for the pizza worked 3 weeks ago - it doesnt now - because E's needs have changed - nothing to do with you doing anything wrong. It just means more detective work and more testing.

I wanted to do some basal testing - but in 5 weeks we havent had a window to do this - because of illness or because the levels had had to be corrected beforehand - which would have scuppered the real readings.

Go and take a look at my sensor reading on the list - i am sure you will identify with it all - and hopefully it will help you to realise that sometimes with diabetes - things are beyond our control - that is the nature of the beast i am afraid!😱

Having said all that - i felt the same as you yesterday - so i can completely identify with you.Bev

 

[Adrienne]

Saying that, this morning has been instructive: went to 6 with correction, stayed that way all through morning (sleeping in, no breakfast) until at 10.45am, suddenly at 3.9. Aha! We have been pulling back and pulling back on that basal at that time, because he is still so prone to hypo that time of day...So clearly, still needs pulling back! Very clear.

Sigh.

Just very quickly as I'm off out but if he is always going hypo at 10.45 ish then the basal needs changing about 2 hours odd give or take before that time. It is or can be very complicated in the morning what with insulin resitence and all that. If you want some help give me a shout.

 

[Patricia]

Sorry about the message loss Bev -- drag!

Thanks for your sympathy and advice. I know in my heart that goalposts are always shifting -- and this of course is the most infuriating thing in my book -- what the article I posted calls the situation in which it is impossible to 'win'. Oh yes.

My frustration comes simply from not being able to 'keep up'. Something has changed: we were able to spot things more easily a little while ago. We felt we could react and roll with the changes more easily. In fact, I felt like I was getting used to the constant change, sort of accepting it...I felt I was beginning to understand a group of things to consider when making adjustments and decisions about adjustments etc, like I was learning how to eliminate one thing after another, or judge adjustments on the likelihood of a change in levels being due to x,y or z.

Now, though...well. It's hard to explain. It's like something has exploded. I'm thinking right, back to basics: look at targets, active insulin, basal rates, ratios... MOST of the day is okay, and the weekend pattern seems *okay*, though a little high...But the evenings through the nights are like some kind of horror film. Okay, an exaggeration...but the feeling of finding a number below 3 AGAIN is just...awful. When every part of you, *every part*, expected it to be something in a completely different range! Seriously. These things are just seeming to come out of the blue.

I'm hoping that the team today will look at the whole range of things. Another frustration though is that whatever we try will take such a long time to test and understand. It's like doing algebra: you solve for one variable at a time. Meanwhile your working out trails down one page and onto the next, and it's a month later...

Oh well. I'm sounding pathetic. I know you're right. I'm really hoping for sensors. We need a foothold in this.

I think he's growing. Certainly hormones are all over the shop. Girls. What I can hardly bear though is the idea that it will stay like this, that we are in for some kind of sustained time when we can't keep up or see clearly enough to make decisions we think will have an effect. Meanwhile, his blood is frying OR he has to keep recovering from hypos...His room is littered with empty juice boxes.

Deep breath. And I'm up to my proverbial in marking. Now I really am being pathetic. I don't even have time to write this and I'm writing it! AAAHHH!

Don't give up on me ladies and gents. I may sound like I've lost the plot, but I depend utterly on your good sense and support.

xxoo

 

[Patricia]

Just very quickly as I'm off out but if he is always going hypo at 10.45 ish then the basal needs changing about 2 hours odd give or take before that time. It is or can be very complicated in the morning what with insulin resitence and all that. If you want some help give me a shout.

Thanks Adrienne -- yes, this particular basal is set to come in at 9am. We just keep lowering it and lowering it...

 

[Adrienne]

Thanks Adrienne -- yes, this particular basal is set to come in at 9am. We just keep lowering it and lowering it...

Well don't be surprised if you get to zero. Jessica is on zero between 9.30 am and 11.30 am just to stop the midday hypo.

 

[Patricia]

Erk, okay. It's does seem to be a bottomless pit of hypo-land at that time of day! Interesting.

 

[Adrienne]

Erk, okay. It's does seem to be a bottomless pit of hypo-land at that time of day! Interesting.

It has a lot to do with the insulin resistence which also explains the breakfast spike loads tend to get. Then at the end of the day it is all reversed and you have to pull on back to stop the hypos due to sensitivity. Bloody diabetes.

 

[Patricia]

All makes sense, and is *exactly* what happens here, breakfast spike and all...Bloody diabetes indeed.

Just heard from folks coming back from clinic. Don't know hba1c yet, but E is on a sensor -- which apparently stopped working the minute they got in the car! Ugh. I can feel myself holding on for yet another ride...OH sounds a little stressed, unsurprisingly. More to take on. But I know this will be the right way to go.

Will let you know further when I do!

xxoo

 

[Adrienne]

All makes sense, and is *exactly* what happens here, breakfast spike and all...Bloody diabetes indeed.

Just heard from folks coming back from clinic. Don't know hba1c yet, but E is on a sensor -- which apparently stopped working the minute they got in the car! Ugh. I can feel myself holding on for yet another ride...OH sounds a little stressed, unsurprisingly. More to take on. But I know this will be the right way to go.

Will let you know further when I do!

xxoo

Now don't go panicking and worrying about the sensor. They are hard to get your head around to begin with. Just remember that whatever happens it is not you, it is the sensor - think Bev can relate to that one.

I'm here for help and questions, as is Bev, she knows her stuff now but just won't admit it freely 😉

 

[bev]

Now don't go panicking and worrying about the sensor. They are hard to get your head around to begin with. Just remember that whatever happens it is not you, it is the sensor - think Bev can relate to that one.

I'm here for help and questions, as is Bev, she knows her stuff now but just won't admit it freely 😉

Adrienne is right - dont panic. You will wonder what you are using sensors for at the beginning - well at least i did. Then when you get used to them, you will see just how much 'hidden' information there is.

Adrienne, the only things i know now are what you have told me in our texts and chats! lol.😉

Patricia, if you have any worries or questions - come on here and I am sure Adrienne can sort it out. She has a way of stopping the panic and making things sounds easy - this method works great for me!

I am sure E will feel comforted using sensors - Alex is.🙂Bev

 

[Patricia]

Update: we only have one sensor at the moment, which we have to take back to get read in a week or so...Argh. I know we are funded to get them from our local team, full time if we wish, but they can't get their act together. Whereas in our pump clinic, it's all clinically based, and there's really no reason to use them, etc...

Seeing as his hba1c is still 6.8. Erk. Feel a fraud. But I knew it would probably balance out okay, it's just the damn swings and out of control ness of it which is so very hard. And not being able to crack it. It's been at some price. Anyway, with this good number, and E well in himself, the clinic laid back so not rushing to get us to sensors. Sheesh. Can't win for losing.

Anyway, this one's a start. Unless we can't get it working again. In which case we never get started! Argh.

Thanks for support, ladies. Feel (kind of) ready for anything. Keen on sensors now. Will be steely with local team when I can take a breath. Which isn't this week!

xxoo

 

[Mand]

Oh Patricia. I feel so much for you! If it is any consoltation, we rarely have a perfect day. Most days we are chasing numbers. I completely understand how you feel. You are doing a wonderful job - never, never doubt yourself.

On a sensor! Wow Please, please tell us all about it! Look forward to reading your up coming posts!

6.8 is excellent! Congrats! My son's last one (pre-pump) was 8.5. We have clinic in three weeks time and hoping for an improvement.

Keep strong and remember, we are all in this together. Sending huge hugs.

Mand xx

 

[tracey w]

well done on the hba1c, thats good.

Dont be afraid of zero basal rates, Adrienne gave me the confidence for this one. I am on very low rates mid afternoon and zero between 4-6pm every day, its the only way I can avoid hypo before tea!

 

[Adrienne]

Update: we only have one sensor at the moment, which we have to take back to get read in a week or so...Argh. I know we are funded to get them from our local team, full time if we wish, but they can't get their act together. Whereas in our pump clinic, it's all clinically based, and there's really no reason to use them, etc...

Bit confused by this. Are you fully funded to get sensors? Have the PCT agreed that you are fully funded for sensors?

If the answer to that is yes then don't wait for the hospital or clinic, just ring Medtronic and order a box of 10. They will then send the invoice to the PCT and bob's your uncle.

If you are uncertain then ring Medtronic and ask them if they think you are fully funded.

We get all out stuff from Medtronic.

What does 'Whereas in our pump clinic, it's all clinically based, and there's really no reason to use them, etc...' mean? Sorry confused with that as well.

Do you go to local hospital for care and another hospital for pumping? Normally the pumping hospital will take over the whole lot and you can sack your local hospital or you can keep your finger in and go every 6 months or so.

I don't understand the bit about clinically based. Do the pump clinic say you don't need sensors ?

Sorry lots of questions.

 

[Patricia]

Confess I'm a bit confused about the 'clinical' stuff too...Yes we are with a different clinic for the pump, but our funding was placed locally of course and is through our local PCT. Had NO IDEA that it was a case of phoning medtronic. Good grief. We were told right at the beginning that when our consultant/GP filed for funding, in our area the funding was automatically including sensors for if and when. So all pumps in our area are also funded with sensors. We have tried to pursue this through our local team, but they went a bit vague about their ability to get their computer to read the graph etc...But of course now that we understand more it turns out that WE can download all that and read it as long as we have a PC (which we don't, but that's another story). I think our local team was picking up on the idea that we wanted to try one out rather than 'go onto' them. Anyway they haven't contacted us in months.

Our pump clinic is just a little wary of sensor using full time or nearly full time -- their experience is that checking them can become a bit obsessive and not useful, and can interfere with quality of life etc. They also think that at the moment they are not overly reliable, alarming inaccurately and generally raising stress levels. I think what's meant by a 'clinical' reason is that because E's hba1c is very good to them, they don't really see a clinical reason for him to go onto sensors.

Saying this, they were very open to him going onto them if he wanted to and if he likes them etc. I think it's just that they don't push them and don't think them necessary for most perhaps? Maybe not, but I suspect we will want them. Already E is taking considerable comfort from getting an idea of his 'direction of travel' -- even though it hasn't calibrated properly yet...

We also discovered something interesting last night from the sensor -- already! We left him high (11) with changed basals and the the last few nights messing up...the sensor, though not reading the right number yet, showed him dipping quickly and right down at 5.45am! What?! We have never tested that time of day. He then absolutely shot back up to what we interpret to be 11 within an hour, which is a strong dawn phenomenon. If he'd been on an 'in range' number, he'd have hypoed at that time.

Very strange.

All an experiment!