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Lily123

Lily123

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Type 1
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Hi

I’m really struggling mentally with my diabetes. I don’t feel like rebelling against it as that’s pointless.I just get a really high number and worry about Time in Range and HbA1C and the risk of complications in the future.

I know it’s the holidays but it makes it feel even worse when something that worked one day just doesn’t work the next. My TIme in Target today is 69% - my lowest in quite a few weeks. It’s brought my 7-Day Time in Range down drastically.I just can’t cope with it

I just worry a lot about HbA1C and risk of complications ( I know my HbA1C is good but I can’t help it)

Is it worth getting in touch with my diabetes teams psychologist after the holidays?

Thanks for reading
 
Sorry to hear that you're finding things difficult at the moment @Lily123 .

It sounds to me as though you're managing incredibly well.- your HBA1C is great and a TIR of 69% at this time of year is brilliant (not sure that I want to mention what my TIR was for yesterday!).
I think many of us know exactly what you mean about worrying a lot about high readings and complications. I know that I've been there.

Have you talked to your diabetes team about how you're feeling? I've never managed to get my HBA1C down to your level but even when I've been a bit higher than your current level my team have been very pleased with that and felt that the risk of complications was pretty low. I've read (I think it was from JDRF) that an HBA1C of up to about 53 helped to minimise complications but also reduced the chance of hypos (and so makes things a bit easier to manage). My team also seemed to think that an HBA1C of about 53 was really impressive and told me that many people with Type 1 didn't achieve anything close to that level.

I know what you mean about the difference between work and holiday time. It's frustrating that a time when you should be able to have a well-earned rest that you're having to deal with temperamental blood sugar levels because of changes to your routine.

I heard the following on a webinar on mental wellbeing and diabetes (it's paraphrased a bit) - Control is not the goal. You are not a pancreas. Your goal is to do the best that you can so that you can go off and live your best life.

I wasn't quite ready.to hear it at that point but it stuck in my mind and it's now up on the wall in my kitchen as a reminder to me to be a bit kinder to myself about doing the incredibly difficult job of trying to carry out the role of a pancreas every day.

You are doing an amazing job. You've been doing this much longer than I have and I'm sure I wouldn't have been able to deal with it as well as you have at your age.

Do talk to your team. Asking to speak to the psychologist sounds like a very good idea to me. Also, are you managing to talk to your family and friends?

Hoping that things seem a bit brighter tomorrow and sending hugs your way.
 
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Thanks

I know my HbA1C is good but it’s where I’m out of routine because of the holidays my BG is just like a yoyo bouncing between hyper and hypo.

I really struggle when something that has worked one day just doesn’t work the next. I’m to the point of stressed that I’m near tears every time I see a high BG (ridiculous I know)

My family aren’t the best with the mental health side of things. I’ll speak to the psychologist after the holidays
 
Hi @Lily123
i was diagnosed at age 12, in 1967 ( yes I know, a while ago!). For the first 30 years or so I did not look after myself “properly”, although I did keep taking my daily(!!!) insulin. I had never heard of HBA1C or time in range, and so obviously did not know at the time just how bad I was, although I do have to admit to a few spells in hospital when I was between 16 and 20 (was that DKA? I’d never heard of that either, tbqh).
But I think it is easy nowadays with our improved knowledge and significantly improved treatments and technological assistance, to become a bit over concerned about achieving that perfect score. Which, as @soupdragon has said, is never going to happen.

I must admit to finding many peoples’ posts on this forum quite depressing because they all seem to have such perfect scores or are trying so hard to achieve them, which I personally find a tad obsessive! I know I may get complications at some point, but I have lived a full and enjoyable life without worrying too much about that (and will continue to do so). And, as I think it is @helli says, she does not let diabetes dictate to her, she gets on with life and fits her diabetes around it.

if you are finding it hard to cope at the moment, I would suggest relaxing a little and be kind to yourself. There IS more to life than diabetes, so do not let it take over; put it firmly back in its place, just a little itch that may need to be scratched from time to time. And if you think it would help, then certainly ask to be referred to the psychologist in the new year, I’m sure they will be happy to talk it all through.
 
Thanks @Barbie1

It’s great to hear from someone who has been diagnosed so long and has no complications.

I can never just relax and let managing it slip from the forefront of my mind as that makes it feel worse.

I know it’s impossible to get a perfect score it’s just frustrating when I try my best to not go high and it still happens
 
Good morning @Lily123 . I am sorry that you are finding things difficult at present, but do understand.

First in answer to your question should you contact your team, I would say a definite yes. I took a long time to do this when I hit burnout, and once I sought help, it really helped. This is a normal part of all that we have to do and they will know how to help you.

It is understandable to worry about your levels and your TIR, but over these awkward times things will wobble, different foods that need a bit of guess work for carbs, stuff we don’t get a lot practice with, …. I found that I had to give myself a holiday over these times. I used to keep records and look for patterns in what was happening and it took time for my consultant to persuade me that I should just go with the flow for the fortnight. No recording and no consideration of TIR, just doing boluses and the best that I can.

In the past, before sensors, we had no idea of what our TIR was and just had our BG pre meal to go on, along side HBA1c. At the start of sensors I remember being told that anything over 60% was good. I found that hard to accept but still remember it. Having said that I do understand that with the improvement in tech we will often expect ourselves to get higher values than that, it not when things are so different: Christmas, holidays, …

Do talk to your team, and also to yourself about just how well you are doing.
 
Ps
I can’t remember whether you are in MDI or a pump Lily.
 
SB2015 said:
Good morning @Lily123 . I am sorry that you are finding things difficult at present, but do understand.

First in answer to your question should you contact your team, I would say a definite yes. I took a long time to do this when I hit burnout, and once I sought help, it really helped. This is a normal part of all that we have to do and they will know how to help you.

It is understandable to worry about your levels and your TIR, but over these awkward times things will wobble, different foods that need a bit of guess work for carbs, stuff we don’t get a lot practice with, …. I found that I had to give myself a holiday over these times. I used to keep records and look for patterns in what was happening and it took time for my consultant to persuade me that I should just go with the flow for the fortnight. No recording and no consideration of TIR, just doing boluses and the best that I can.

In the past, before sensors, we had no idea of what our TIR was and just had our BG pre meal to go on, along side HBA1c. At the start of sensors I remember being told that anything over 60% was good. I found that hard to accept but still remember it. Having said that I do understand that with the improvement in tech we will often expect ourselves to get higher values than that, it not when things are so different: Christmas, holidays, …

Do talk to your team, and also to yourself about just how well you are doing.
Click to expand...
Thanks

I’ll get my parents to email the team after the holidays

You all are right that I shouldn’t be worrying so much over the holidays but I just can’t help it

This is why I’m stressed:
A0A83A91-08AF-49D7-BBF3-20852E1E0E5D.png
 
Lily123 said:
Hi

I’m really struggling mentally with my diabetes. I don’t feel like rebelling against it as that’s pointless.I just get a really high number and worry about Time in Range and HbA1C and the risk of complications in the future.

I know it’s the holidays but it makes it feel even worse when something that worked one day just doesn’t work the next. My TIme in Target today is 69% - my lowest in quite a few weeks. It’s brought my 7-Day Time in Range down drastically.I just can’t cope with it

I just worry a lot about HbA1C and risk of complications ( I know my HbA1C is good but I can’t help it)

Is it worth getting in touch with my diabetes teams psychologist after the holidays?

Thanks for reading
Click to expand...
Hello Lilly,
have you tried the idea of it's just a number?
By this I mean ok it's above range so just correct it and move on tomorrows another day.
It's so hard not to get bogged down by it all and it will take over your life if you allow it to do so.
I took the decision along time ago that diabetes was not going to rule my life sooooo
I'm higher than I should be so I just correct and move on same if I am becoming low, it's low oh goody sweetie time 🙂

Yes agree 100% no 2 days are the same and yes very frustrating/annoying.
You are doing the best you can and if anyone else can do better good luck to them is all I can say 🙂
There is no one on this earth who has perfect control, not even those with the closed loop systems.
 
Lily123 said:
Thanks

I’ll get my parents to email the team after the holidays

You all are right that I shouldn’t be worrying so much over the holidays but I just can’t help it

This is why I’m stressed:
View attachment 23468
Click to expand...
Knowing that you ‘shouldn’t stress’ doesn’t make it any easier to stop doing it.
It is great to read @Barbie1 ’s post and read how she has kept her Diabetes in its place. Another good ‘coach’ on this is @trophywench . I know when I first came in here,I was so focused on ‘getting better’ at this, and when I was told I was worrying too much, I thought that they just didn’t care about their diabetes like I did. It took a long while before I ‘heard‘ what @trophywench was saying to me.

I think in some ways the access to more data can increase the stress. I did find that switching to a pump gave me ‘more control’ and reduced some of my anxieties. It may be worth talking to your team about that too. There are some other practical tips that people on here have suggested, BUTNone of that is needed over this fortnight.

Keep in touch.
 
Thanks @Pumper_Sue and @SB2015

I will try thinking of its just a number as that may help.
 
The great thing about all the data is you have lots of data. The bad thing about all the data is you can fixate on the numbers and get stressed.

Honestly around 70% TIR is great. It will give you a good HBA1C and will help stave off long term complications. If you’re usually way higher TIR than that then you have even less to worry about.

I was tying myself up in knots about my kid’s last 4 months (we missed a clinic so it was delayed) because to me he was always too high. When clinic looked at the data he was at about 73% TIR and his HBA1C was 45. They were delighted with everything. They did give us some things we could change but stressed that this was just because we could and not something that was essential.

As for the ups and downs on the Libre it’s not ideal but it’s not terrible. When you go hypo a rebound high is common and you’re then likely to over correct later and go low again and it can be a viscous cycle. If you didn’t have the Libre you may well have done finger pricks that day and not seen the massive ups and downs. Having it all there on a graph is a blessing and a curse. Also, did you check the accuracy because sensors get less accurate out of range so it’s quite possible that whilst you were swinging high and low the range was much less.

Diabetes is like weather. We can get stuck in the mindset that what’s happening right now will last forever and it’s only stepping back and looking at trends over time that gives us a clear picture. Give yourself some grace to be ‘good enough’ at this diabetes management without tying yourself in knots about it not being perfect. If you’re finding it too stressful to have the sensor then go back to finger pricks for a bit - we did this as it was causing all of us too much stress at one point and now my kid (12) will mostly wear his sensor but sometimes take a few days to put a new one on or sometimes take a break of a few weeks.

You’re doing great!
 
Thebearcametoo said:
The great thing about all the data is you have lots of data. The bad thing about all the data is you can fixate on the numbers and get stressed.

Honestly around 70% TIR is great. It will give you a good HBA1C and will help stave off long term complications. If you’re usually way higher TIR than that then you have even less to worry about.

I was tying myself up in knots about my kid’s last 4 months (we missed a clinic so it was delayed) because to me he was always too high. When clinic looked at the data he was at about 73% TIR and his HBA1C was 45. They were delighted with everything. They did give us some things we could change but stressed that this was just because we could and not something that was essential.

As for the ups and downs on the Libre it’s not ideal but it’s not terrible. When you go hypo a rebound high is common and you’re then likely to over correct later and go low again and it can be a viscous cycle. If you didn’t have the Libre you may well have done finger pricks that day and not seen the massive ups and downs. Having it all there on a graph is a blessing and a curse. Also, did you check the accuracy because sensors get less accurate out of range so it’s quite possible that whilst you were swinging high and low the range was much less.

Diabetes is like weather. We can get stuck in the mindset that what’s happening right now will last forever and it’s only stepping back and looking at trends over time that gives us a clear picture. Give yourself some grace to be ‘good enough’ at this diabetes management without tying yourself in knots about it not being perfect. If you’re finding it too stressful to have the sensor then go back to finger pricks for a bit - we did this as it was causing all of us too much stress at one point and now my kid (12) will mostly wear his sensor but sometimes take a few days to put a new one on or sometimes take a break of a few weeks.

You’re doing great!
Click to expand...
Thanks!

I always check the Libre lows and highs against finger pricks. Plus because it’s the Accu Check Aviva Expert which means it needs a finger prick to work out corrections.

That’s given me something to think about with if I hadn’t had a sensor on I probably wouldn’t have noticed the highs
 
Same advice as pumper sue, these things happen as we all experience same no matter what anyone tells you, so just correct when your high treat when your low then move on, don't dwell on things as over time it will bring you down.
 
I don't like being out of my routine either @Lily123 but l also want to enjoy Christmas, holidays, random nights out, longer than usual walks, etc. etc. So I've had to learn that a high BG reading is just a number not a reflection on me and my choices. This condition is so tough, but I think you cope really well. I agree with @SB2015 - if there's mental support available, go for it. Just saying how you're feeling out loud can be really helpful - IMHO! :D
 
Hi @Lily123, I know it’s easy to say but hard to do - don’t worry. It is tough playing this game 24/7 and even more so when what you did one day to get perfect results does just the opposite the next day. Then Christmas comes along and you have absolutely no idea how many carbs, plus, if you’re like me, you start grazing and promise to correct later, but somehow things stack up and it seems impossible to get a high BG down.

As others have said, definitely talk to your team as they will be able to advise and give you help. Just talking to someone else I’m sure will help.

Just to show you’re not alone, here is my last 24 hours of playing Guess the Carbs, as you can see, you’re not alone! The blessing of Libre is the wealth of data you get. But this is also its downside. Try not to get too hung up, especially over the short term. Once back into a normal routine you will return to your usual TIR. A week or even two, will not have a bad, detrimental effect on your HbA1c.

Be kind to yourself and take care!

E0EE3A8C-83A1-4535-ADE4-2CE9C2B41DBF.jpeg
 
Thanks @Eternal422 it helps to know that because it’s Christmas everything is more of a guessing game - more than usual.

I also do more snacking this time of year and think that I’ll correct later but then that BG is near on impossible to get down. But then I get a time where I will correct a high and the insulin seems to work instantly
 
@Lily123 like you i struggle during holidays. I work in a school and the changes in routine every few weeks makes it tricky to manage levels with a basal like Tresiba and i have often been down on myself for not always managing levels well. All we can do is our best. Be kind to yourself, ask your team for help if you need it. You are doing great even if you don't think so. Take care.
 
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