Frustrated

[MichelleF78]

Morning guys

I really feel I’m at the end of my tether.
I am still rising about 5-6 mmols during the night. When my feet hit the floor I go up another 2. I don’t eat after my dinner and I just feel I can’t get on top of this. It’s taking over my life.
So I went to bed sitting about 6 and when I woke I was 12.3. When my feet touched the floor I was then 14.2. I love my breakfast and I won’t eat until novo sluggish has kicked in to bring me back to my target. I just feel like giving up.
No matter what I do I just can’t win.
Is it my basal that’s not right? Help!

 

[Lucyr]

If you’re rising overnight and not having eg pizza for tea every day then yes it’s your basal. Have you read up about basal testing? That would be how you would check and adjust your basal

 

[Inka]

Do you have a Libre? I’m wondering whether you’re high all night or whether that’s Dawn Phenomenon making you wake in the 12s.

 

[MichelleF78]

If you’re rising overnight and not having eg pizza for tea every day then yes it’s your basal. Have you read up about basal testing? That would be how you would check and adjust your basal

I didn’t eat anything since 6:45 I take two doses Levemir every 12 hours. More at night than morning. I am going to try more tonight. Not 100% sure on basal testing.

 

[MichelleF78]

Do you have a Libre? I’m wondering whether you’re high all night or whether that’s Dawn Phenomenon making you wake in the 12s.

Yeah I have libre and yeah I go high all night and then as soon as my feet touches floor I rise another 2

 

[Inka]

Yeah I have libre and yeah I go high all night and then aw soon as my feet touches floor I rise another 2

Ok, so, yes, it sounds like it’s your basal. Your evening meal bolus has probably worn off by the time you’re in bed, and without enough basal your blood sugar will rise overnight. I wouldn’t worry so much about the rise when you get up (Foot on the Floor rise) as if you get your blood sugar better overnight, that rise might not be as significant eg you might rise from 6 to 8, if you get what I mean. You might also find that injecting your morning basal straight away helps that rise, as well as eating breakfast as soon as you can.

 

[MichelleF78]

Ok, so, yes, it sounds like it’s your basal. Your evening meal bolus has probably worn off by the time you’re in bed, and without enough basal your blood sugar will rise overnight. I wouldn’t worry so much about the rise when you get up (Foot on the Floor rise) as if you get your blood sugar better overnight, that rise might not be as significant eg you might rise from 6 to 8, if you get what I mean. You might also find that injecting your morning basal straight away helps that rise, as well as eating breakfast as soon as you can.

I really hope it gets better Inka. I feel like jacking it all in ☹️ I feel I have changed so much with this curse. I take my Levemir and novo in bed when I wake but sometimes it’s so early I lie in bed but as soon as I get up BANG

 

[Inka]

Try not to let it get to you @MichelleF78 It is cr*p but we can’t let it mess with our heads too much. When I have high sugars, I try to think of positive things - thinking it could be worse, thinking that it’s not so bad as last Wednesday, etc etc. I find it also helps to remind yourself of times when your sugars were good, eg when you did a long walk and stayed in range, when you went to a buffet and stayed below 10, etc.

With the Foot on the Floor, you could cautiously and carefully experiment with a tiny bolus when or just before you get up, eg half a unit of NR. That might cap the rise a bit. When I take a pump break and go back to injections, I often do that. It works for me, so it’s worth a try.

 

[MichelleF78]

Thanks Inka. I appreciate you reaching out. NR just takes too long to work to lower my glucose. Doesn’t shift for about 90 mins at least. I am moving to Fiasp. I believe I am making things worse for myself by waiting too long to eat my breakfast as I’m so high in morning when I get up. It’s all such a disaster, really not coping well.

 

[Inka]

You could try Humalog maybe as an intermediate step? I find it faster than NR but it varies for the individual. Yes, you’re right about delaying breakfast making things worse. I used to do that when I had high sugars in the morning, but after a lot of frustration (and hunger!) I found that getting my breakfast insulin and breakfast carbs in to me even if my blood sugar was 12, say, actually brought it down faster - significantly faster.

I totally sympathise. Diabetes is bad enough anyway, but when your sugars aren’t behaving it’s very stressful. Try to focus on a plan. Just keep on going. I know how much of a pain it is. I’m sure you’ll find an answer. It’s just a question of pushing on and trying various things.

 

[Proud to be erratic]

Hello @MichelleF78,

I find I needed to wait a ridiculously long time if I am already high and included a correction in with my food bolus - before I can eat breakfast and end up 4 hrs later in a normal range.

I mentioned this during my DAFNE (Dose Adjustment For Normal Eating) course late last year. In effect DAFNE is another way of juggling food and/or ratios for bolus calculations. DAFNE is all about trying to simplify how we manage our insulin and provides a simpler framework for looking at the 'counting' process. The DSN didn't recognise the problem, asked the other 8 attendees who also didn't recognise this problem and I was politely, but robustly, challenged about this. I felt I'd been left a bit "high and dry" without a solution.

I had the good fortune to have a face to face with my Endo shortly after and specifically asked about this delay process, including what to do. He quite clearly said he agreed with the DSN and I shouldn't wait; and that I should apply a % increase to my total bolus (ie food + correction) to mitigate against starting high. He suggested at least 5%, probably 10 % and that would also need to increase further if my existing starting high was particularly high. Then use trial and learning to find what works for me. So this is currently work in progress.

My wife was delighted with this answer - I frequently end up delaying my breakfast and more importantly delaying our evening meal together (breakfast has always been a meal that we don't necessarily eat together, unless its a full cooked English b'fast) - while waiting for my BG to drop before eating. I have not been able to practice this very much so far, since that recent Endo consult: I've been away, in a family environment that couldn't and didn't give me much notice to either prebolus or do much more than guess at carb content, so I just got on with eating what I was given, guessing boluses and accepting that corrections were needed a potential couple of extra times a day. I was also, abnormally for me, extremely active for all waking hours with 3 noisy, excited and adorable granddaughters, as well as regular dog walking. This extra activity provided some of my corrections and has been challenging; my TIR has plummeted this last fortnight. But my lows have remained infrequent and true hypos, when I've had to stop completely, just once.Thanks to Libre alerts and vigilance.

Finally and I realise this isn't what you would wish to hear, but it is still early days and there is so much to take account of as you adjust to this new lifestyle with D constantly in the background. Frustrating as it is, I advise relax and go with things. Stress is one of the main factors that triggers your liver to release extra glucose and the stress factor is singularly tricky to put into numbers! So each time you let this 'upset' you, you are unwittingly putting in place a potentially worsening scenario that you can't measure or prevent - except by consciously trying to stop yourself from getting stressed in the first place. Easy said, I know; and my wife will confirm that I have moments when my toys get thrown into multiple corners! I'm just over 3 years into this D malarkey and management of it is getting better. I really strive to avoid lows and hypos - quite successfully these days. I accept the highs more readily: the hypos are hugely debilitating as well as inconvenient; the highs less so and apparently, if kept to a few hours duration (rather than days on end), the long term damage is less significant than being hypo or very close.

 

[rebrascora]

Sorry to hear you are finding it mentally and emotionally challenging at the moment Michelle. It is still very early days and it really does take time so you need to cut yourself more slack. I think you are still probably trying to achieve better results than are possible at this stage, but getting your basal right or as near as possible, will make it a lot less frustrating and if you need to increase your evening Levemir again, which sounds like the case, then that may also help with the foot on the floor, as there will be the tail end of your evening dose overlapping a bit more with your morning dose. It is surprising what a big difference 1 extra unit of Levemir can make for me. Hopefully you will find the same, but it is a slow steady process getting basal right without over egging it. I always know that if my diabetes is frustrating me, I need to look at adjusting my basal doses. Hopefully the Fiasp will also give you a bit of extra edge on keeping those morning levels in check but keep working on getting the basal right.

 

[trophywench]

No Way would I ever wait for my BG to reduce to X, Y or Z, before eating the next meal. So, you need (even) more insulin to get back down to 5 or 6 post meal, than you did before you ate when your BG was lower than it is now.

So, actually, what?

There is almost inevitably a reason for such things I'm afraid, so the mental challenge is working out what that is - not merely what you have to do to correct it at the time.

 

[MichelleF78]

Wide words everyone thank you so so much. Bad today and I was that upset I had fish and chips by the seaside and it was amazing. I’m stopping my life because of D and I have to live it. Just getting over covid so my BG may still not be behaving and I feel I’m insulin resistant many times. You are just left to get on with it from the hospital. I am trying to be in the green all the time before I eat but it’s impossible. Thanks for taking the time today to help.

 

[MichelleF78]

Sorry to hear you are finding it mentally and emotionally challenging at the moment Michelle. It is still very early days and it really does take time so you need to cut yourself more slack. I think you are still probably trying to achieve better results than are possible at this stage, but getting your basal right or as near as possible, will make it a lot less frustrating and if you need to increase your evening Levemir again, which sounds like the case, then that may also help with the foot on the floor, as there will be the tail end of your evening dose overlapping a bit more with your morning dose. It is surprising what a big difference 1 extra unit of Levemir can make for me. Hopefully you will find the same, but it is a slow steady process getting basal right without over egging it. I always know that if my diabetes is frustrating me, I need to look at adjusting my basal doses. Hopefully the Fiasp will also give you a bit of extra edge on keeping those morning levels in check but keep working on getting the basal right.

Thanks Barbara as always

 

[MichelleF78]

You could try Humalog maybe as an intermediate step? I find it faster than NR but it varies for the individual. Yes, you’re right about delaying breakfast making things worse. I used to do that when I had high sugars in the morning, but after a lot of frustration (and hunger!) I found that getting my breakfast insulin and breakfast carbs in to me even if my blood sugar was 12, say, actually brought it down faster - significantly faster.

I totally sympathise. Diabetes is bad enough anyway, but when your sugars aren’t behaving it’s very stressful. Try to focus on a plan. Just keep on going. I know how much of a pain it is. I’m sure you’ll find an answer. It’s just a question of pushing on and trying various things.

@Inka i am waiting to be moved to Fiasp so I’m hoping this helps me better. I find NR very slow to work. It’s stressing me out so much to the point I don’t want to do this anymore. Feel I’d be happier being left as before and eating when and what I like!!

 

[MichelleF78]

No Way would I ever wait for my BG to reduce to X, Y or Z, before eating the next meal. So, you need (even) more insulin to get back down to 5 or 6 post meal, than you did before you ate when your BG was lower than it is now.

So, actually, what?

There is almost inevitably a reason for such things I'm afraid, so the mental challenge is working out what that is - not merely what you have to do to correct it at the time.

Thank you @trophywench

 

[Inka]

Wide words everyone thank you so so much. Bad today and I was that upset I had fish and chips by the seaside and it was amazing. I’m stopping my life because of D and I have to live it. Just getting over covid so my BG may still not be behaving and I feel I’m insulin resistant many times. You are just left to get on with it from the hospital. I am trying to be in the green all the time before I eat but it’s impossible. Thanks for taking the time today to help.

Lower your expectations @MichelleF78 When you’re stressed by the diabetes, just easing off on your targets a tiny bit can bring a surprising amount of relief. I don’t mean let your blood sugars go wild, just ease your foot off the pedal a bit. Perfection is impossible and trying to be perfect just adds to the stress.

 

[MichelleF78]

Try not to let it get to you @MichelleF78 It is cr*p but we can’t let it mess with our heads too much. When I have high sugars, I try to think of positive things - thinking it could be worse, thinking that it’s not so bad as last Wednesday, etc etc. I find it also helps to remind yourself of times when your sugars were good, eg when you did a long walk and stayed in range, when you went to a buffet and stayed below 10, etc.

With the Foot on the Floor, you could cautiously and carefully experiment with a tiny bolus when or just before you get up, eg half a unit of NR. That might cap the rise a bit. When I take a pump break and go back to injections, I often do that. It works for me, so it’s worth a try.

Lower your expectations @MichelleF78 When you’re stressed by the diabetes, just easing off on your targets a tiny bit can bring a surprising amount of relief. I don’t mean let your blood sugars go wild, just ease your foot off the pedal a bit. Perfection is impossible and trying to be perfect just adds to the stress.

Thank Inka I promise I will try!

 

[rebrascora]

I think it is important that you know that we all get days or longer spells when our diabetes management is frustrating and much less successful than we would like and basically doesn't play ball. You gradually learn which things to try to deal with it and if they work great and if they don't you just hang in there until they do..... and gradually it all seems to sort it'self out again. It's a bit of an ebb and flow situation. I might get a week or so of really great results and then it goes haywire for a few days or a week and then I am back on top of it again. Part of learning to live with it is gaining the practical tricks and tips to try when it is going badly and partly learning to shrug, accept that you have done your best, hang in there and wait for it to get better.... and so far it always has for me, so I have faith that it will continue to do so and the naff spells are all just part of the game of life. Just like nothing in life goes smoothly all the time.

As an example, I was up in the mid teens for 6 hours last week and I broke all the rules trying to get it to come down including numerous stacked corrections and going to sleep with those stacked corrections still active when I got totally chewed off. It came down eventually and surprisingly I didn't even crash although I was at the point of desperation that I didn't care if I hypoed because I always come back up so easily from a hypo so I know I can deal with those promptly, but prolonged hypers can be really challenging for me.

I am not advocating that you break the rules and certainly not stack corrections (at least at this early stage of your journey), but I am just saying that it doesn't always run as we would like, for any of us and you have to learn firstly to accept your own limitations of experience.... it has taken me 4 years to get where I am now, it certainly didn't happen in 4 weeks or even 4 months..... but also that part of managing diabetes is that you don't have overall "control" and it goes wonky from time to time and you have to accept that. Yours is currently wonky because NR is sluggish for you (as it was for me) and because you don't yet have the experience to manage it better and I suspect because your Levemir dose isn't quite right yet although curious to know if you have increased the evening dose yet and if that has made any difference?
Getting the Levemir right and trying the Fiasp are in the pipeline and the experience will just come with time, trial and improvement. Hang in there. Sending (((HUGS)))