Lost

[Debee]

Most nights before sleeping I read through the message board. It helps to know I'm not the only one struggling. But I always come away feeling lost
How come so many people can master this horrible thing I have,and yet I try so hard and can't bring my levels to where they should be.
I have good support from my DNurse( but beginning to feel she's at a loss with me) I try so hard
I carb count I regularly check my blood I even set my alarm to check during the night.
I've been on insulin now for 5 years I have a libra fitted (had great hopes when given that) But NO my recent results show 72. Makes me so depressed, I do try
I'm beginning to think my only way forward is to go without carbs altogether
I'm not over weight ( a little belly fat to be honest)
If anyone has any ideas as to why someone who try's hard FAILS picks themselves up try's hard again only to fail yet again
I was told on the course a few years back I could eat quite normal as long as I match my insulin to carbs To make us feel good they even brought us out chocolate biscuits with our coffee
I came away feeling very confident
LOST that's what I am

 

[trophywench]

Well your insulin to carb ratio might be 'out' and how long has it been - if ever, cos it's something we often hear has never even been mentioned to people - since you tested your basal insulin to see if that's keeping your BG level in the absence of anything else that might affect your BG? See https://www.diabetes-support.org.uk/info/?page_id=120 for how to do this.

Do you have any other health conditions and are you on any other medication?

 

[missclb]

Hi Debee,

I find myself struggling a lot more these days than I used to, please don't feel alone. So many people on this forum really do have this thing as nailed, so that gives me great hope. I always aim to join them, but I never seem to fully get there, or stay there. But I find that I pick up lots of little tips and load of determination when I hang out here, so stick around.

I do find that going low carb makes a big difference to me, so maybe it's worth doing a day or two with a reduced carb intake to see if it helps you?

Just remember that for everyone who has it nailed, there's probably an equal amount, or more, than don't. It's just that people don't tend to post advice of how to keep blood glucose higher than it should be – lol!

One thing I would suggest is that you perhaps look at changing the language – don't tell yourself that you've failed, it's a terrible word and can make you feel really disheartened. Think of it more than you just haven't tightened your control YET. This gives the impression that it's all ahead for the taking, and makes it feel a little more likely to happen. Plus, nobody 'nails' it straight away, it comes in baby steps and over a long period of time. Make one small change at a time and build slowly, so look at maybe trying to ensure that you get your breakfast doses correct, and that your levels are back to normal before lunchtime. And only move on to thinking about the next 'goal' once you're confident.

Maybe also read this forum in the morning, when you can put some things in place or form a plan for the day? It sounds like at the moment it weighs you down, so that's the last thing you need to feel when trying to fall asleep.

And i'm writing this, and taking my own advice at the same time! My expected Hb1Ac is not great right now, so i'm starting the process of regaining control myself. Best of luck to us both x

 

[Robin]

So what levels is your meter showing you? Can you see where numbers are higher than they should be, or do they all look fine? When you had the Libre, how did your actual Hbaic compare with the Libre estimate? I just wonder if you get a Haemoglobin test done when you have your HbA1c, as anaemia can skew the result. (upwards, I believe).
One problem I found with being told I could eat anything, is that eating a lot of refined carb in one sitting produces a perfect number in four hours time, but a Himalayan spike in between times. That’s why I moderated my carb intake, not drastically, I aim for around 100 carbs a day, which feels plenty, but is around half what the eatwell guide recommends.
(This is by no means to say that I don’t indulge in the odd slice of cake, or pud, or two or three, it gets easier to factor in variables as you learn more about how your body reacts. And I still massively mess up regularly)

 

[ukjohn]

Hi Debee
What makes you think that most of us have mastered this, I have been a member of this forum longer than any one here and have been diabetic for only 13 years (not as long as many) and I am still learning from others here new members and old. I have good periods and also bad ones, I tend to crow about my good sessions because they make me feel on top. Never ever think that you have failed, treat it as a mistake and learn to correct that mistake. The main and one of best things about this forum is that we are all here to help and learn from each other. one thing I have learned from this group is your never to old to learn, and that comes from an 80 year old .

 

[Pumper_Sue]

Hello @Debee,
worry not everyone struggles at some point, some more often than others So you are not alone (((((((((((hugs))))))))))

Take yourself right back to basics by checking your basal. If that is up and down and all over the place then ask for a insulin pump as this will help you no end. You will be able to set your pattern to suit your own needs by adjusting by the hour.
Another thing to look at is your carb ratio as already mentioned you might find like many of us that you need more insulin at certain meal times.

You have not failed so don't ever think you have. I suspect all it boils down to is the insulin doesn't match your needs thus you need a different delivery system IE., a pump

 

[Flower]

Hello Debee ,

Please don't give yourself a hard time and feel you are failing when things aren't falling into place, you are obviously trying hard to try and improve your control. Managing your insulin supply with the myriad of things that can affect it is a full time tough job. The State of the Nation Report England 2016 for diabetes shows that 8.9% of T1's achieved an HbA1c of 48 mmol/mol- 6.5% or less, the vast majority fall in the range upwards to 86 mmol/mol-10%. It is a round the clock challenge to get things where you want them and to try and keep them there.

What has the Libre shown you in terms of high glucose, is there a pattern to when things are going out of range? Usually there is a pattern even if it looks like a general muddle of high/lows and patches where your bg travels through the in range area but doesn't stabilise there. Look at your basal rate and test to find out if your background insulin is keeping you stable , that is the basis to getting better control. If that's not right then none of the rest will be working effectively. What advice has your DSN given you to try and improve things?

I've found timing of my bolus really helps in limiting food spikes, I only need to pre bolus by about 5-10 minutes just to give my insulin a head start on getting where it needs to be before my glucose starts to rise. This varies between people and what you are eating but I've found it helps to prevent peaks and troughs.

You can get there 🙂 insulin works as does carb counting with the correct carb to insulin ratio. That doesn't mean it's easy to achieve or that it doesn't need constant tweaking to keep things as stable as possible. For years and years I banged my head against a high HbA1c brick wall despite what I did. I looked at all the bits of the equation, read what others were doing on here, tested and tested and found a routine where I stick with similar carbs, meal times etc and have found a way that helps me to keep better control, I still have days when it all goes haywire - that goes with the territory 🙄

I wish you well 🙂

 

[Debee]

Thank you one and all for your reply much appreciated
I went to the website you gave me ( trophy wench ) I'm going to read it all again tonight bit too much to take in late at night while in bed
I'm thinking a little more knowledge of how my insulin works may help me
I'm on treseba and fiasp. I'm aware that fiasp works in a slightly different way so I'm going to read a little into that too.
I'm going to keep to 100 carbs a day not right now going to do a little more reading up on things first. Don't want to overload my brain. One step at a time. One of you suggested I go back to basics, that I have started today.
Pumper sue you mentioned a pump. I have a feeling that may be suggested at my next appointment with the DN. Not something I would personally want.
Don't fancy having that attached to me as a reminder all day and night.
That may come across as a strange thing to say but that's how I feel about a pump.
One other thing before I sign off, has anyone like me became a little obsessed with the libre censor. Yes it's a brilliant thing no more finger pricking
But Ive only had it a few months but I constantly check what percent of the time I'm in my good zone. I have a feeling as good as this censor is, it can have the same effect as a game ( got addicted to candy crush once )
Yes I do like to win, that's why I hate not getting where I want to with my levels
Anyway for now bye and thanks again all

 

[Pumper_Sue]

Pumper sue you mentioned a pump. I have a feeling that may be suggested at my next appointment with the DN. Not something I would personally want.
Don't fancy having that attached to me as a reminder all day and night.
That may come across as a strange thing to say but that's how I feel about a pump.

Hi @Debee
Most people have this reaction to a pump, this is mainly fear of the unknown. Even though I had been on insulin for about 42 years before I went on a pump I can honestly say that with half a day I did not notice the pump at all, I had to check it was still there 🙂

You can have tubeless pumps these days as well so not attached by tubing.

Fiasp is trial and error for users but personally I find it great in my pump.

What ever you do don't knock a pump until you have tried one as the quality of life is so much better than MDI.

 

[Amity Island]

Most nights before sleeping I read through the message board. It helps to know I'm not the only one struggling. But I always come away feeling lost
How come so many people can master this horrible thing I have,and yet I try so hard and can't bring my levels to where they should be.
I have good support from my DNurse( but beginning to feel she's at a loss with me) I try so hard
I carb count I regularly check my blood I even set my alarm to check during the night.
I've been on insulin now for 5 years I have a libra fitted (had great hopes when given that) But NO my recent results show 72. Makes me so depressed, I do try
I'm beginning to think my only way forward is to go without carbs altogether
I'm not over weight ( a little belly fat to be honest)
If anyone has any ideas as to why someone who try's hard FAILS picks themselves up try's hard again only to fail yet again
I was told on the course a few years back I could eat quite normal as long as I match my insulin to carbs To make us feel good they even brought us out chocolate biscuits with our coffee
I came away feeling very confident
LOST that's what I am

Hi Debee, could the raised blood sugar be due to protein and fats?

I went on the DAFNE course, like yourself, leaving thinking GREAT! I can eat what I like and all I need to do is count the carbs. How wrong was that advice. Protein and fat can increase your total dose for a meal by up to an extra 50% on top of the carbs, but start to act long after the carbs have been digested. I estimate that of the say 100g of protein, 50g of that can convert to glucose after about 6 hours after the meal. That's a substantial amount of extra insulin required later on. Although some diabetics do seem to not have any rise in blood sugars from eating protein and fat. It depends on how well your body converts it.

"There's a myth that has been perpetuated...that you don't need to cover the protein (or fats ) with insulin". Dr Bernstein who is himself diabetic, has said that this myth peddled about "no need to dose for fat and proteins" by the likes of the DAFNE course, doctors and nurses and specialists is not only wrong, but dangerous. There are many doctors out there who don't follow this dogma, who have taken the time to learn for themselves and are well aware of the effects of proteins and fats on blood sugar.
Do you pre-bolus for your meals? about 15mins works well for me on Humalog. I find some foods are just not suitable at all, like most breads and cereals as they cause huge spikes soon after eating, no matter how early I take the bolus. Equally high fat foods can be tricky also, requiring a split dose, half upfront and half 2 hours later, then plus some extra later on for the fat.

 

[trophywench]

Precisely what Sue says - I have completely forgotten it's there most times, often forget to test and bolus before meals, or (because it roams free in bed) have got out in the middle of the night and don't remember it until it dangles from wherever the cannula happens to be that time and goes clunk against the furniture or eg the side of the loo pan whatever it happens to meet mid swing! Ooops - but have never killed a pump doing that, so far.

On the assumption you don't live entirely in the nude - you bung the pump wherever it's comfy for you personally - clipped onto a waistband, in a pocket, in your bra (I can't, the pump is nearly as big as my boobs so there's no room - larger breasted ladies find they can nestle a pump either at the front in the middle are in a cup, under that boob) but I can use what I call a bra hanger, a sort of pouch thingy that you hang on the side of your bra. Can't do it when wearing a bodycon dress, but never having had the sort of body shape that could wear one, that doesn't exactly bother me.

We're naturists anyway so when naked, El Pumpo is in an alcantara pouch with a lanyard attached round my neck. If it gets in the way when joining in games I lengthen the lanyard, stick my left arm through it and it nestles on my side back between shoulder blade and waist - if left handed I'd bung my right arm through it ditto. All these things can be sorted if we want to sort them and don't cause us a problem.

But if a person wants something to be a problem then I'm perfectly certain they could quite easily make it one.

 

[PhoebeC]

Getting hung up on levels is not healthy. Try to think as them as information not scores.

Jenny, I love that 'El Pumpo'