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New type one

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
I think one of the most important lessons with diabetes is that perfect control is not possible. You have to accept that despite your very best efforts and whatever your Health Care Professionals say about ranges or aiming for particular numbers, there is only so much you can do and sometimes your levels will swing quite wildly regardless of what you eat or calculate carbs etc.

I am delighted that you have Libre because I think that gives you huge benefits not only with seeing what is happening between readings and being able to take readings so much more frequently than finger pricks, but also giving you more realistic goals. Do you use the "Time in Target" feature where you set your target range.... usually to 3.9 to 10 and you are aiming to keep within that range 70% of more of the time. For me this really helped change my outlook on success and gave me more reasonable targets to achieve rather than worrying about individual readings being too high or too low.

Do you have the Libre 2 version which has alarms which warn you when you are going high or low? If you haven't been advised on doing corrections when you are going high there is not a lot else you can do about those except worry about avoiding it with the next meal, which I think can lead to eating disorders and it sounds like you might be developing that, so I think learning to do corrections after meals is an important next step for you. There is no reason why you shouldn't be able to eat normal meals and occasional chocolate and puddings etc but you need to devise techniques to cope with those meals and doing corrections after meals is an important tool in developing those techniques, especially if bolusing insulin with those meals is causing a problem. Also if the Libre is telling you that you are going high but there is nothing you can do about it, I can imagine that must be a bit scary but occasional highs of mid teens or more in the early weeks and months are perfectly normal and will not do you any real harm. It is more permanent long term highs which cause damage or long term swings from high to low and back but hopefully you will get this ironed out in a few weeks or months and be feeling much better about your control once you have the right insulins and the knowledge and confidence to use them well.

I found that not being frightened to experiment was something that really helped me. I would have liked my HCPs to have encouraged this more. Obviously you need to keep a close eye on your levels when you experiment in order to keep safe but rather than following the advice I was given rigidly, it was really helpful to try things for myself. Reading this forum regularly and hearing what others were doing really helped me to understand what was going on and gave me ideas about how I might change what I was doing to try to improve my management. I have surprised my consultant with some of the things I have found out about my diabetes but he cannot argue when he can see that those things work for me.

You will get the hang of this soon. Try not to be frightened of food because it is not the food which is the problem, it is just that you currently don't have the right information, experience or tools to balance things. Keep pushing your nurse or consultant for help and be prepared to keep experimenting, even if you have failures, because you often learn more from those than successes. Maybe experiment on days off from work when you perhaps have more time to monitor things and keep yourself safe. Many people have a period of several weeks or even months off work when they are first diagnosed in order to get their head around it all in a safe environment, so maybe some time off work might be a possible option too.
 
I think one of the most important lessons with diabetes is that perfect control is not possible. You have to accept that despite your very best efforts and whatever your Health Care Professionals say about ranges or aiming for particular numbers, there is only so much you can do and sometimes your levels will swing quite wildly regardless of what you eat or calculate carbs etc.

I am delighted that you have Libre because I think that gives you huge benefits not only with seeing what is happening between readings and being able to take readings so much more frequently than finger pricks, but also giving you more realistic goals. Do you use the "Time in Target" feature where you set your target range.... usually to 3.9 to 10 and you are aiming to keep within that range 70% of more of the time. For me this really helped change my outlook on success and gave me more reasonable targets to achieve rather than worrying about individual readings being too high or too low.

Do you have the Libre 2 version which has alarms which warn you when you are going high or low? If you haven't been advised on doing corrections when you are going high there is not a lot else you can do about those except worry about avoiding it with the next meal, which I think can lead to eating disorders and it sounds like you might be developing that, so I think learning to do corrections after meals is an important next step for you. There is no reason why you shouldn't be able to eat normal meals and occasional chocolate and puddings etc but you need to devise techniques to cope with those meals and doing corrections after meals is an important tool in developing those techniques, especially if bolusing insulin with those meals is causing a problem. Also if the Libre is telling you that you are going high but there is nothing you can do about it, I can imagine that must be a bit scary but occasional highs of mid teens or more in the early weeks and months are perfectly normal and will not do you any real harm. It is more permanent long term highs which cause damage or long term swings from high to low and back but hopefully you will get this ironed out in a few weeks or months and be feeling much better about your control once you have the right insulins and the knowledge and confidence to use them well.

I found that not being frightened to experiment was something that really helped me. I would have liked my HCPs to have encouraged this more. Obviously you need to keep a close eye on your levels when you experiment in order to keep safe but rather than following the advice I was given rigidly, it was really helpful to try things for myself. Reading this forum regularly and hearing what others were doing really helped me to understand what was going on and gave me ideas about how I might change what I was doing to try to improve my management. I have surprised my consultant with some of the things I have found out about my diabetes but he cannot argue when he can see that those things work for me.

You will get the hang of this soon. Try not to be frightened of food because it is not the food which is the problem, it is just that you currently don't have the right information, experience or tools to balance things. Keep pushing your nurse or consultant for help and be prepared to keep experimenting, even if you have failures, because you often learn more from those than successes. Maybe experiment on days off from work when you perhaps have more time to monitor things and keep yourself safe. Many people have a period of several weeks or even months off work when they are first diagnosed in order to get their head around it all in a safe environment, so maybe some time off work might be a possible option too.
Thank you so much for your knowledge and advice I will just plod on and maybe don’t try too hard . And maybe someday I might be able to eat them bag of midget gems I’ve been craving for for months
 
If it is any consolation, I am only 2 years down the line and I have learned most of what I know from this forum. I follow a mostly very strict low carb diet but that is because I was a sugar addict and chocoholic pre-diagnosis and I don't trust myself to fall back into that lifestyle and obviously I cannot afford to risk that now and I like how much stronger and healthier I feel on a low carb diet. I am trying to learn to be more flexible now though and I have a takeaway once a week with my partner although I make sensible choices re carbs even then and limit the portion of chips to just 10 with my fish and no mushy peas but it is all a work in progress and in the mean time I eat well, I just avoid the carb rich foods and I still have chocolate but it is just one square of 85% cocoa dark choc with a spoonful of crunchy peanut butter as that makes it more satisfying and takes some of the bitterness off the chocolate whereas before it would have been a whole 200g bar of Dairy Milk.
Why not keep your bag of midget gems in your pocket and have one or two when you are working hard and your levels are not too high. It is not ideal to be guzzling a whole packet all at once anyway, although I was aware of that before diagnosis and it didn't stop me, but having to inject insulin for it certainly makes you stop and think. A couple here and there will not need insulin or cause a problem and may help to stop you dropping low during the day since you are having that problem. I tend to use dried fruit in that way now. For me a dried apricot or a prune or a dried fig is a real treat to be enjoyed when my levels drop into the 4s.
 
If it is any consolation, I am only 2 years down the line and I have learned most of what I know from this forum. I follow a mostly very strict low carb diet but that is because I was a sugar addict and chocoholic pre-diagnosis and I don't trust myself to fall back into that lifestyle and obviously I cannot afford to risk that now and I like how much stronger and healthier I feel on a low carb diet. I am trying to learn to be more flexible now though and I have a takeaway once a week with my partner although I make sensible choices re carbs even then and limit the portion of chips to just 10 with my fish and no mushy peas but it is all a work in progress and in the mean time I eat well, I just avoid the carb rich foods and I still have chocolate but it is just one square of 85% cocoa dark choc with a spoonful of crunchy peanut butter as that makes it more satisfying and takes some of the bitterness off the chocolate whereas before it would have been a whole 200g bar of Dairy Milk.
Why not keep your bag of midget gems in your pocket and have one or two when you are working hard and your levels are not too high. It is not ideal to be guzzling a whole packet all at once anyway, although I was aware of that before diagnosis and it didn't stop me, but having to inject insulin for it certainly makes you stop and think. A couple here and there will not need insulin or cause a problem and may help to stop you dropping low during the day since you are having that problem. I tend to use dried fruit in that way now. For me a dried apricot or a prune or a dried fig is a real treat to be enjoyed when my levels drop into the 4s.
Advice took on board thank you . I have learned more off this site in a couple of hours then I have off my doctors and nurses since i was diagnosed.
 
Advice took on board thank you . I have learned more off this site in a couple of hours then I have off my doctors and nurses since i was diagnosed.
We all feel the same. The forum is an amazing resource of knowledge and experience from people who understand because they live with the same challenges every day and can personally relate to problems in a way that specialists cannot.... And it is accessible 24/7 of course and we actively encourage you to ASK ASK ASK whereas you sometimes feel like you don't want to bother the nurses who we all know are pretty well run ragged, particularly at the moment. That is not to say that you shouldn't contact them, particularly in these early weeks and months but it is useful to be able to know the right questions to ask by visiting the forum first, so that you get the most out of that precious phone call or appointment when you get it.
 
Sweets like Midget Gems can be good when walking or as a top up when low. I usually keep some sweets in the cupboard and eat them at the appropriate occasion. Yes, it’s different than not being diabetic because we have to think about food and plan. But no food is forbidden - we just need to think when to eat it, how much, etc.

I’ve had Type 1 almost 30 years. I wouldn’t say I was used to it really because it is a pain having to think about every meal, but I can say truthfully that my diet now is no different than it would have been if I hadn’t have got diabetes. I still eat desserts sometimes eg ice cream, fruit salad, fruit crumble, cheesecake, etc, but I choose wisely, eat a moderate portion, and calculate the carbs.

Be kind to yourself @Ian67 It takes time to get the hang of the practical side of it, and longer to get your head round it emotionally. But you will in time 🙂
 
Midget Gems - teeny little round biscuits with a swirl of coloured Royal icing atop 🙂 !! - haven't tasted one for a good many decades .....

But - and this is the beauty of insulin treatment - if I wanted some I could carb count them and inject accordingly for them. Whether that's a good idea very often is debatable of course because it wouldn't be a brilliant idea to give my 'sweet tooth' frequent encouragement - I once shot up to over 11 stone by doing just that and when you're only 5ft 2 wringing wet I can tell you for an absolute fact - it is NOT !

(...... but you can't anyway cos you haven't been taught to carb count and adjust your insulin doses ....... )

It honestly is NOT difficult to learn how to do it - none of us old uns knew how to adjust doses anyway because that was simply not possible with the insulins we were started on originally. We knew how to count carbs though because we had to do that anyway as dose and type of insulin were calculated so we always ate the same amount of carbs split out through the day in a very regimented way - we couldn't have a different day, EVER. (unless we wanted to suffer - and none of us did - hence we toed the line ........) (then when we went abroad on holiday and exactly what we ate at home wasn't available of course the guano hit the fan at times; nothing was without risk ........ how intrepid were we !!!) Such a relief to find modern things that make allowances for folk leading perfectly normal lives.

We can easily point you at all sorts of tried, trusted and tested, endorsed by the NHS and rubber stamped by Royalty (not but you get my meaning) ways and means of doing all sorts of things for yourself fairly easily - but let's all hang on until your 'honeymoon' period has started to wane else you'll get sick of keep adjusting the same things multiple times, let's stick with simple stuff for starters, shall we - you have the rest of your life to make finer adjustments as and when - and you will still have to do that when you've had it nearly 50 years and in your 70s ! ....
 
Opps sorry, yes. Iced Gems. Never met a midget gem, and therefore can't say I miss them LOL
 
Midget gems are great. Like small wine gums but chewier. You're right, you don't know what you're missing! :D
 
I want some Midget Gems now :D I’ll wait till I’ve finished my Easter chocolate, I think!
 
Sounds like you are having a confusing old time of things @Ian67

But it sounds like you are getting to grips with things, and learning lots of both theory and also how your own individual diabetes seems to respond.

I also wonder if the Honeymoon Period might be muddying the waters for you so much and making it seem like your diabetes is behaving ‘randomly’. When insulin therapy starts, sometimes the flagging beta cells in the pancreas get a bit of a second wind, and splurge out extra insulin in fits and starts - which can make it very tricky to see the wood for the trees.

Different people have very different experiences of the honeymoon period. For some it has very little effect, and for others ot is really noticeable. Sometimes is lasts for just a few weeks or months, for other people it can last for years.

Hope things settle for you soon, and you get some advice around matching your insulin doses to the carbs you are eating. Long term this will be a really helpful strategy.

This page gives a bit of an overview

And there are full online courses available free of charge too if local structured education is being paused by the pandemic
 
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