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I would like some support through this difficult journey

evilclive said:
It's a device which sits on top of the libre and transmits libre signals via bluetooth to a phone. One-off cost, 160 quid-ish, and I think some people here have a code which gets a slight discount. I'm hoping one of them will pop up here. You then need an app which sits on the phone - XDrip on android, spike on iPhone (both open source, both free). The slightly tricksy bit is none of this stuff is approved - you need to tick boxes saying "I promise not to use this for medical decisions". But I thought it was worth a try, and it's worked well so far.
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Thank you so much! Do you know if diabetics are continuously buying it after the 2 weeks is up? if they do, it's £320/month :nailbiting:
 
The Miaomiao looks like a great, cheap way of making the Libre into a CGM with alerts.
(The Miaomiao is a one off cost.)
I have been considering it for a while but decided to postpone my decision for a month or so.
The reason for this is Libre version 2 is due out very soon (I am sure I read something about an "April release" for the UK).
To my understanding, Libre v2 includes blutooth alerts to the Libre reader (but you still need to swipe to get the numbers) and data encryption. The data encryption will be a bit of a challenge to the developers of the apps (Spike and xDrip) which are needed for the Miaomiao. I have faith in the app developers that they will overcome this challenge but I am waiting until they do ... and to see if they can pick up the blutooth alerts ... before I make the Miaomiao investment.
 
helensaramay said:
The Miaomiao looks like a great, cheap way of making the Libre into a CGM with alerts.
(The Miaomiao is a one off cost.)
I have been considering it for a while but decided to postpone my decision for a month or so.
The reason for this is Libre version 2 is due out very soon (I am sure I read something about an "April release" for the UK).
To my understanding, Libre v2 includes blutooth alerts to the Libre reader (but you still need to swipe to get the numbers) and data encryption. The data encryption will be a bit of a challenge to the developers of the apps (Spike and xDrip) which are needed for the Miaomiao. I have faith in the app developers that they will overcome this challenge but I am waiting until they do ... and to see if they can pick up the blutooth alerts ... before I make the Miaomiao investment.
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Thank you for the heads up, This is the first time I've heard about it. I'm very excited about all the new tech coming out to help us make our lives much easier. :)
 
MeiChanski said:
Thank you so much! Do you know if diabetics are continuously buying it after the 2 weeks is up? if they do, it's £320/month :nailbiting:
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One-off - it's just a little box, which goes on top of the libre sensor. It's got a rechargeable battery in it. Mine is now a bit over 6 months old. Though as Helen says, maybe worth seeing if libre2 will happen.

https://miaomiao.cool/
 
evilclive said:
One-off - it's just a little box, which goes on top of the libre sensor. It's got a rechargeable battery in it. Mine is now a bit over 6 months old. Though as Helen says, maybe worth seeing if libre2 will happen.

https://miaomiao.cool/
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Thank you again, it sounds pretty cool and it's tempting. Maybe I should write a diabetes kit wish list today :p
 
JAT1 said:
In order to avoid hypos you must make sure you never inject more insulin than you need.
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Can you tell us how to do this? (apart from having high bg levels all the time, that is. I quite like my kidneys, feet and eyesight, so being high all the time is not an option)
If there is a secret to knowing exactly how much insulin I need at any given time I'd love to know it.

edit: I only read through all the reactions after replying and saw that @helensaramay already said the same thing in a much friendlier way. I chose to not remove my reaction despite the unfriendly tone, mainly because it's the second time today I hear that you simply should take the right amount of insulin, and it just isn't simple like that.
@JAT1 , my apologies that you got the results of my mood, I'm sure you meant well and I hope I didn't mess up your mood in return. It really isn't about you.

On topic: I don't have a lot of useful advice for you @MeiChanski , but I hope things will get easier for you in the near future. I hope you'll have a wonderful time finishing your studies or doing something else!
 
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Antje77 said:
Can you tell us how to do this? (apart from having high bg levels all the time, that is. I quite like my kidneys, feet and eyesight, so being high all the time is not an option)
If there is a secret to knowing exactly how much insulin I need at any given time I'd love to know it.

edit: I only read through all the reactions after replying and saw that @helensaramay already said the same thing in a much friendlier way. I chose to not remove my reaction despite the unfriendly tone, mainly because it's the second time today I hear that you simply should take the right amount of insulin, and it just isn't simple like that.
@JAT1 , my apologies that you got the results of my mood, I'm sure you meant well and I hope I didn't mess up your mood in return. It really isn't about you.

On topic: I don't have a lot of useful advice for you @MeiChanski , but I hope things will get easier for you in the near future. I hope you'll have a wonderful time finishing your studies or doing something else!
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Hello, Thank you & it's fine we're all learning and I always felt alone, but I'm glad to know that i'm not alone. I too, would like to know the secret magic as well. I've had 4 years worth of DKA and high blood sugars have completely ruined me, so just the thought of running high scares me as much as hypos do. :)
 
Bless you

It’s not easy is it

All I can say is an echo of Fairygodmothers first post on your thread

Please look around the forum and join in with us everywhere you want

Good luck with your studies
 
Cumberland said:
Bless you

It’s not easy is it

All I can say is an echo of Fairygodmothers first post on your thread

Please look around the forum and join in with us everywhere you want

Good luck with your studies
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Thank you! I will most certainly keep my eyes opened. :)
 
Hi, @MeiChanski , it sounds like going on the DAFNE course has given you the motivation to get things turned round!

Keep up the momentum you've got going, read some stuff like Gary Scheiner's, Think Like a Pancreas - a good reference book for T1s young and old.

As you're on libre, another couple of books (both on kindle) worth a read for getting the most out of cgm are:

Sugar Surfing, Stephen Ponder

Beyond Fingersticks..., William Lee Dubois

The message those guys are putting across is that, yes, T1 is a totally unpredictable, chaotic situation most of the time, but when you can see with libre/cgm how bg is moving in real time, there's a lot of angles you can pull to smooth the whole thing out.

It's really small, subtle things like watching the graph and deciding on a single dextrotab when trending too low or 1 or 2u when trending too high, it takes a bit of time to get used to that, instead of the old school, "only test between meals when feeling hypo and save corrections till meals", but spend a bit of time doing it that way, and it pays back big time.

I'm about 3 years into using cgm now (I've got a libre on script, with a miaomiao on top running to xDrip+) and, compared to how I felt about my T1 5 yrs ago, when I felt like I was fighting it, I now feel like I'm co-operating with it, and that makes a huge difference.

Use your libre well, blinged up with an MM and xDrip+, you'll see T1 in a totally different light.

Good luck!
 
Scott-C said:
Hi, @MeiChanski , it sounds like going on the DAFNE course has given you the motivation to get things turned round!

Keep up the momentum you've got going, read some stuff like Gary Scheiner's, Think Like a Pancreas - a good reference book for T1s young and old.

As you're on libre, another couple of books (both on kindle) worth a read for getting the most out of cgm are:

Sugar Surfing, Stephen Ponder

Beyond Fingersticks..., William Lee Dubois

The message those guys are putting across is that, yes, T1 is a totally unpredictable, chaotic situation most of the time, but when you can see with libre/cgm how bg is moving in real time, there's a lot of angles you can pull to smooth the whole thing out.

It's really small, subtle things like watching the graph and deciding on a single dextrotab when trending too low or 1 or 2u when trending too high, it takes a bit of time to get used to that, instead of the old school, "only test between meals when feeling hypo and save corrections till meals", but spend a bit of time doing it that way, and it pays back big time.

I'm about 3 years into using cgm now (I've got a libre on script, with a miaomiao on top running to xDrip+) and, compared to how I felt about my T1 5 yrs ago, when I felt like I was fighting it, I now feel like I'm co-operating with it, and that makes a huge difference.

Use your libre well, blinged up with an MM and xDrip+, you'll see T1 in a totally different light.

Good luck!
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Hello! I wish I had known sooner because I had an amazon promo code :shifty: T1 being unpredictable, it's what makes it difficult sometimes and it's like trying to guess it's next move. :rolleyes:
DAFNE did help to refresh my memory and I have been trying to tweak and adjust everyday because each day isn't the same/
I agree with you, with the current tech, it does give that extra information to work with. whereas with before, we only knew our BG at that time of testing. I see you got the full works :happy: If I had the wallet, i'd definitely be like you and trying to work with my diabetes and not against it. But on a serious note, I will definitely consider it. Thank you so much.
 
Hi,
hope things are looking more positive, welcome! In reference to food and injection timings, I kept having hypos during or just after meals and similarly sometimes found this was because I wasn't finishing meals (I once wasn't able to because I had soup and the fire alarm went off at school for example!).

I now eat roughly half my meal before injecting. This means I have time to ascertain if I'm going to finish the meal and also allows the food to be digested before the insulin takes effect.

Best of luck!
 
Hi again @MeiChanski, how’s it going?
All our posts so far seem to be about ways to deal with the T1 things, and like I said, there’s a wealth of knowledge on this forum. I’ve learned more here in just 2 years than I did in the previous 47 of having the beast/thingy/condition/excuse to stuff jelly babies
How’s your happiness quotient? After all, it’s not just getting as close as possible to being in charge of T1 that counts but using the life tech and meds have given us to create some decent times.
I enjoy making stuff - ceramics, painting, and I’ve recently had the chance to start learning silversmithing. It’s great, and happy-making, and the ceramics class is a wonderful social day too. There are lots of other things I enjoy doing too but I won’t bore you by making a list!
What do you enjoy? Are there opportunities to join any groups in your area that also enjoy it?
I ask because if I have things that make cheerful then dealing with T1 seems to be less stress-making.
 
Fairygodmother said:
Hi again @MeiChanski, how’s it going?
All our posts so far seem to be about ways to deal with the T1 things, and like I said, there’s a wealth of knowledge on this forum. I’ve learned more here in just 2 years than I did in the previous 47 of having the beast/thingy/condition/excuse to stuff jelly babies
How’s your happiness quotient? After all, it’s not just getting as close as possible to being in charge of T1 that counts but using the life tech and meds have given us to create some decent times.
I enjoy making stuff - ceramics, painting, and I’ve recently had the chance to start learning silversmithing. It’s great, and happy-making, and the ceramics class is a wonderful social day too. There are lots of other things I enjoy doing too but I won’t bore you by making a list!
What do you enjoy? Are there opportunities to join any groups in your area that also enjoy it?
I ask because if I have things that make cheerful then dealing with T1 seems to be less stress-making.
Click to expand...
Hello Fairygodmother, thank you for asking an update. Indeed everyone here has been kind and helpful, not like some others who salt your wounds. I am doing okay at the moment, I am still unmotivated to do any university work and panic mode has been activated because it's less than a month until essay deadlines and an exam resit. I am unsure if tresiba is making it worse or not, it is a flat profile insulin. However I have decided that I am going back to university this September and unfortunately, my university offered me an en suite so I will be by myself. So I don't really know how that will play out considering my fear of sleeping and hypoglycemias. The past few days I have experienced hypos where I just continued sleeping, thankfully my boyfriend came rushing in with coke. I know some people have mentioned miaomiao and I liked the idea of it, it's just a little expensive for me to buy at the moment. I mean we could go on about NHS and not funding for gadgets which could potentially save some of us from dangers.
I enjoy art and I would really love to get back into it because my boyfriend did buy me watercolour brush pens and paper for my birthday. I don't know anyone in warwickshire for any social events, if i'm honest i've been stuck indoors since we moved here and trying to sort out documents to see a GP.
 
UK T1 said:
Hi,
hope things are looking more positive, welcome! In reference to food and injection timings, I kept having hypos during or just after meals and similarly sometimes found this was because I wasn't finishing meals (I once wasn't able to because I had soup and the fire alarm went off at school for example!).

I now eat roughly half my meal before injecting. This means I have time to ascertain if I'm going to finish the meal and also allows the food to be digested before the insulin takes effect.

Best of luck!
Click to expand...
Hello! Thank you, I'm just baffled about how it would work because normal food and split dosage is slightly different than eating greasy/fatty foods for split dosage. I am also scared about running high because having a high BG does not feel good whatsoever, it's like I've lived in the desert for a day without water. Does it mean I'll have to break some DAFNE rules if I were to eat half my meals before injecting? I'd have to ask my consultant at some point. XD
 
MeiChanski said:
Hello Fairygodmother, thank you for asking an update. Indeed everyone here has been kind and helpful, not like some others who salt your wounds. I am doing okay at the moment, I am still unmotivated to do any university work and panic mode has been activated because it's less than a month until essay deadlines and an exam resit. I am unsure if tresiba is making it worse or not, it is a flat profile insulin. However I have decided that I am going back to university this September and unfortunately, my university offered me an en suite so I will be by myself. So I don't really know how that will play out considering my fear of sleeping and hypoglycemias. The past few days I have experienced hypos where I just continued sleeping, thankfully my boyfriend came rushing in with coke. I know some people have mentioned miaomiao and I liked the idea of it, it's just a little expensive for me to buy at the moment. I mean we could go on about NHS and not funding for gadgets which could potentially save some of us from dangers.
I enjoy art and I would really love to get back into it because my boyfriend did buy me watercolour brush pens and paper for my birthday. I don't know anyone in warwickshire for any social events, if i'm honest i've been stuck indoors since we moved here and trying to sort out documents to see a GP.
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Yes, I know the fear when on one’s own. When I was on Lantus, which gave me early morning lows, I used to set an alarm to wake me at set times and there was a rota of people who’d text me in the morning to check I was in the land of the conscious. Not quite the 8 hours we’re advised to get! But it meant I could sleep without worry. I also had an understanding of how much carb I’d need before sleep if bloods were below 5.
Hope you get time to use the watercolour brush pens very soon! It sounds as though you have a lovely boyfriend.
 
Fairygodmother said:
Yes, I know the fear when on one’s own. When I was on Lantus, which gave me early morning lows, I used to set an alarm to wake me at set times and there was a rota of people who’d text me in the morning to check I was in the land of the conscious. Not quite the 8 hours we’re advised to get! But it meant I could sleep without worry. I also had an understanding of how much carb I’d need before sleep if bloods were below 5.
Hope you get time to use the watercolour brush pens very soon! It sounds as though you have a lovely boyfriend.
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Thank you! the issue is that hypo mixed in with sleep is like the feeling of sleep dominates the hypo symptom, so I continue sleeping and it's more difficult to get out of bed. Also when it gets very bad, I don't hear alarms and phone calls. So i'm in such a pickle that I don't really know what to do, other than trying my best to control my blood sugars and make sure novorapid isn't in the system before bed or at least is fading slowly from the 4hr window. But a reasonable person would rather sleep because we as adults have things to do.I have yet to understand further on how a pump would help in this situation to advocate my case forward, other than switching off novorapid and beeping our phones and smart watches with CGMs. Thank you, maybe we are indeed very artistic because it's therapeutic in some way. :)
 
MeiChanski said:
Also when it gets very bad, I don't hear alarms and phone calls
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I know that feeling :-) FWIW it's normal to set a blood sugar alarm at a level such that it goes off before things go bad, so you're not in that bad state. Mine is at 4.5 low, 9 high (I'm less worried by high). I know this doesn't help if you don't have one, but should that change in the future, it's worth knowing.
 
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