Not sure where else to turn… anxious/ upset/fed up- am I the only one ‘failing’?

[Rose trustman]

Hi everyone,

I’ll be honest, sometimes this forum makes me more anxious because I see everyone posting and commenting with their amazing hba1c results and I’m really feeling like I’m the worst diabetic in the world right now. I JUST can’t get it right.

I’ve been diabetic type 1 for 15 years. The last year has been a huge wake up call. I’ve started getting tingling in my feet, worsening retinopathy and maculopathy. I decided last January to really really crack down on my control. But despite my efforts I just can’t seem to crack this? I attended a Dafne course, I’m on a pump, a libre, I test all the time and correct all the time. I’d like to get pregnant in the next few years but I cannot get my hba1c below 8% I’ve just had a really scary experience where I struggled to see in the dark out of my left eye and my vision was much clearer in my right eye. My anxiety went through the roof. My healthcare team are so busy but I feel like I really need extra support or a regular group I can attend to chat about this and try and get on track. Does anyone have any suggestions? Should I see if I can get get a closed loop dexcom on on the nhs? I just don’t know what else to do and I feel so alone in how much I’m failing at this. I don’t know how people do it. Any advice would be welcome, most days I’m in my target range 40-50%

 

[Inka]

@Rose trustman Ignore the amazing HbA1C results - people are keener to post about good ones than bad ones so the posts don’t give an adequate representation. Also, diabetes is hard. We’re trying to do the job of a pancreas and it’s far from easy.

Can you tell us a little more about your control? Are you higher than you’d like most of the day/night or is it that you’re shooting up after meals? The first thing to do is to do a basal test to check your basal is right. That builds a strong foundation for control. After that, you can look at your meal time ratios.

 

[Pumper_Sue]

I’ll be honest, sometimes this forum makes me more anxious because I see everyone posting and commenting with their amazing hba1c results and I’m really feeling like I’m the worst diabetic in the world right now. I JUST can’t get it right.

The reason for everyone posting their fantastic! results only, is because no one likes to own up they are struggling.
So, worry not.

I just don’t know what else to do and I feel so alone in how much I’m failing at this. I don’t know how people do it. Any advice would be welcome, most days I’m in my target range 40-50%

No1 on your list is to do some basal testing 🙂 Basals being out are as a rule 99.9% of all problems 🙂
If you don't know how to do a basal check have a look in the pump forum as there is a fixed post at the top of the page.

Diabetes is probably one of the most frustrating conditions anyone can have, unfortunately some people have to work twice as hard than others to achieve the results they want/need.

 

[nonethewiser]

What you read on forums you have to take at face value, example if you read people waking with perfect bg levels in 4s & 5s then don't think your a failure if yours are different, same when you read that people are so healthy due to diet or supplement or whatever, in real world its somewhat different.

Been living with type 1 for 40 years, despite pump libre & great support still have bad days bg wise, that is nature of Type 1 as its so unpredictable, all we can do is try our best.

Agree with above about basal testing, that is so so important when being on pump, only yesterday had to adjust own night basal rates.

 

[everydayupsanddowns]

You aren’t failing @Rose trustman

Diabetes is just hard! And some people’s diabetes seems to be a bit more feisty and unpredictable than others.

Plus wobbly levels in my experience tend to give rise to more wobbly levels. And our frustration at lack of movement in BGs, along with the frustration that just builds up from diabetes anyway, can make things doubly tough.

But you are working at it - you have the skills you need to unlock this puzzle (at least for now) - and you have Libre to help give you a picture of whats going on ‘between the dots’

Be careful of that though… A rapidly rising BG trace and high alarm can be pretty hard to resist - even if you actually have plenty of insulin-on-board. And a correction given then can stack with the iob causing a crash hours later and double the frustration!!

Some thoughts:
Basal testing - as Sue says, getting your basal right (this month) often means meal doses and correction factors click back into place and work fine

Doses and corrections - tweaking these based on their full effect over 5-6 hours. Not leaping into action 2hrs after eating when the food is rampaging and the insulin just getting going

Dose timings - cautiously experimenting with pre-bolus timings to give insulin 5, 10, 15, 30 minutes head start (may be different for different mealtimes). Rapid insulins often aren’t all that rapid!

Stairs - If you have insulin/correction on board that is stubbornly refusing to do anything try walking briskly up and down a flight of stairs fir literally 5 minutes. Set a timer on your phone. This can kickstart a correction for hours.

And be kind to yourself. You didn’t ask for this extra full time job. You are doing great - keep plugging away, and a lot of that diabetes randomness will disappear.

 

[Thebearcametoo]

Which pump are you currently on and how long until it’s due to be replaced? This will be a big part of whether you can get a closed loop system.

Any pump is only as good as the algorithm which is only as good as the data you put in it. As has been said basal testing is your starting point. Once you’ve done that work on your breakfast ratio and timing and then the rest of the day. Try not to get bogged down in each individual reading but to look at trends over a couple of weeks. Try not to micro manage.

 

[DaveB]

Hi. I don't know about pumps but don't they have to be Closed-loop? Otherwise how does the pump know what to inject? I would expect the NHS to provide a Dexcom if needed to have that closed-loop (or the new Libre 3). What sort of diet do you have? I've seen it said, wrongly. on these forums that T1s on insulin can have a normal diet. Some may be lucky and can do that but I certainly can't and try to keep my carbs below 150gm/day to avoid my BS sky-rocketing regardless of Bolus amount.

 

[Inka]

Hi. I don't know about pumps but don't they have to be Closed-loop? Otherwise how does the pump know what to inject? I would expect the NHS to provide a Dexcom if needed to have that closed-loop (or the new Libre 3). What sort of diet do you have? I've seen it said, wrongly. on these forums that T1s on insulin can have a normal diet. Some may be lucky and can do that but I certainly can't and try to keep my carbs below 150gm/day to avoid my BS sky-rocketing regardless of Bolus amount.

No, they don’t! Most pumps aren’t used with a loop (whether they have the capability or not). The pump doesn’t do automatic boluses, the pump user does that by working out the carbs and pressing the necessary buttons on the pump.

It’s a not uncommon misconception that a pump does everything and can magically give perfect control, but it only does what it’s told to do. Its very possible to have poor results on a pump if the basal and/or ratios are wrong. Also, pumps need a fair bit of user work - changing the basal rates, adjusting ratios, etc.

 

[Bruce Stephens]

I don't know about pumps but don't they have to be Closed-loop? Otherwise how does the pump know what to inject?

No! They provide preprogrammed patterns of doses. Some time ago (as CGMs became more available) pump manufacturers added simple abilities like stopping insulin as the user went low, and more recently there's been lots of success in more automation. But even with the fancy closed-loops there's some manual input (telling the system you're about to do some exercise or eat).

 

[nonethewiser]

Hi. I don't know about pumps but don't they have to be Closed-loop? Otherwise how does the pump know what to inject? I would expect the NHS to provide a Dexcom if needed to have that closed-loop (or the new Libre 3). What sort of diet do you have? I've seen it said, wrongly. on these forums that T1s on insulin can have a normal diet. Some may be lucky and can do that but I certainly can't and try to keep my carbs below 150gm/day to avoid my BS sky-rocketing regardless of Bolus amount.

You have to programe basal delivery, nearly all users will have various basal rates over 24 hours, bolus dose still has to be inputed but beauty of pump is you can deliver that dose whoever you want to, like half upfront rest spread over few hours.

Hoping to switch to Omnipod 5 next year, it together with Dexcom G6 will pair up & adjust basal rate if your going high or low, but again you still need to manually input bolus dose, although all pumps have bolus calculater built in to suggest bolus dose but you can ignore that.