feeling like a failure

[MarkyMark1]

Hello all,
I have been living with type 1 for 32 years and I still struggle every day to keep my blood glucose levels within range.
I have done the DAFNE course, tried numerous different insulin regimes and pump. I'm back using pen injections and Dexcom G7 because the pump didn't work for me. Indeed rather than helping me control my diabetes, I found that the constant alerts that sounded were like continual reminders of how out of control I was, making me feel a failure. My nurse consultant is lovely, supportive and encouraging but whenever I reach out to her for advice and adjustments are made, she ends the session by saying how my carb-counting is good and that I'm doing ok and gives encouraging words like "you're doing the best you can". Nothing changes however and I am desperate.
I have a few other health conditions and these are being impacted upon by my poor control.
HELP!
If there is anyone out there who has similar experience I would be so grateful to hear from you as I'm feeling so alone.
Many thanks

 

[rebrascora]

Really sorry to hear you are feeling so down on yourself about your diabetes management and that a pump didn't work for you. How long did you try it for and was it a hybrid closed loop (HCL) system that linked to your sensor and adjusted your basal rates to keep you from going too high or too low or was it just a pump working on it's own with set basal rates? The new HCL systems can be very good but they need time to learn how your body works in order to make appropriate adjustments and it can be tempting to take over at times which means it takes longer to settle in and manage your levels.

I can understand all the alarms and stuff making you feel like your diabetes is more demanding.... I feel like that with my Libre sometimes and I will shout at it when it alarms and I am busy doing something especially if I have taken action already and it hasn't yet detected those changes. Sometimes if it really gets to me, I have a break from it altogether and have a week or two off and then come back to it realising how convenient and beneficial it can be, so the break really does me good both in terms of having time away from it but also making me really appreciate it's benefits.

Which insulins are you currently using and what problems do you encounter in trying to keep your levels in range? ie. Do you spike after meals everyday or do you go high overnight regularly. Do you understand how exercise/activity affects your levels and take that into consideration? Same with alcohol if you drink? If you have other conditions, do you take medication for those and could that medication be putting a spanner in the works?

I have a split dose basal (Levemir) which means that I inject some in the morning and some in the evening. I need lots more insulin in the morning (22units) than at night (0-5units) and if I have done exercise, it is my night time dose which I need to reduce for a couple of nights following exercise otherwise I hypo. Finding a basal insulin which works well for you and getting the dose(s) right is probably the most important aspect of managing diabetes well with insulin. If that isn't right, it is really frustrating as you are constantly fire fighting with fast acting insulin and nothing makes sense. Some people have very stable basal insulin needs, but others like myself have a lot of variation and need to adjust things regularly. Different basal insulins suit these different groups of people, so the starting point would probably be to tell us which basal you use and if you have a fairly steady routine day by day and week by week with activity or if your daily life is a bit haphazard?

Can you post a photo of a typical day's Libre/Dexcom graph and what does the weekly and monthly patterns graph show you? ie do you go high after breakfast most mornings and then take ages to come down or do you drop low through the night quite often etc? Looking for patterns is really important with diabetes so those weekly/monthly patterns graphs can be quite helpful.

Most importantly, diabetes is really challenging to manage and some people's diabetes is more awkward than others, plus our everyday lives can mean that we often don't have as much time to spend on our diabetes as it sometimes needs, so cut yourself some slack. You have been doing your best, but if you can learn a bit more by looking at one specific issue at a time and trying different things to fix it, then you may well be able to improve things a lot overall. Sometimes a few small changes can make a big difference.

Edited to remove reference to DAFNE which OP clearly states he has already done.... I am clearly not paying enough attention today!

 

[MarkyMark1]

Hello Barbara,
thanks for responding. I tried the Tandem T:Slim pump for around 16 months and aswell as the constant alerts, I also experienced itching and discomfort around the insertion sites due to a nickel allergy. There is talk of me trying the Omnipod 5 system along with Dexcom G6 sensors which I am considering. Apparently this system uses less nickel.
I currently take NovoRapid and basal Tresiba at 12units 10pm.
I have cervical spondylosis (compression of spinal disks on nerves) and experience a lot of pain from this, for which I take Tapentadol 250mg daily. Unfortunately I can do little exercise because of this but I am not immobile and I do get around. I've had one surgery for this just before the Covid lockdown but it had no effect, so I am due further surgery but this can't be done until my blood sugars are regulated.
Thanks
Kind regards

 

[rebrascora]

Not being able to exercise at least takes one variable out of the equation although I am very sorry that you suffer so much with pain from your neck. The pain can certainly impact on your levels though, usually in an upward direction, but if the pain is pretty constant then your body may have adjusted to it. I doubt the pain killers would have much impact.

That graph seems to show your levels dropping very dramatically and quite evenly overnight from 14 to hypo which, if that is a regular pattern, would suggest your Tresiba dose is too high..... You should never adjust anything from one particular event, so if that is not a regular pattern, then disregard.
Your levels spike up to above 14 but seem to come back down reasonably promptly and nicely into range. I am guessing that may be a mixture of hypo treatment and breakfast?
What do you use as a hypo treatment or did you just have breakfast straight away?

Your levels also look to have sky rocketed in the early evening, going up to about 18 from what looks to be a hypo mid afternoon. Again it would be helpful to know what you use as a hypo treatment.

The general advice is that if you can stop the hypos, you can get off the rollercoaster and even if your levels end up being a bit higher in general, higher and stable is better than swinging from low to high, so figuring out if those hypos are due to basal insulin or bolus would be helpful. That one graph suggests it might be basal due to the very significant drop overnight, but perhaps you injected a correction at bedtime??

The thing with Tresiba is that you need to try to adjust the dose to keep you as level as possible overnight. If you almost always drop overnight then the Tresiba is too much. If that then leaves you battling with high levels during the day and needing lots of corrections, then you may need a different basal insulin like Levemir which you can adjust to give you more through the day and less at night like I do. Are you able to show the Daily Patterns graph for the last 7, 14 and 30 days as that should indicate if this is a trend with your overnight levels rather than just a one off. .