rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
The planning and prep is a necessary compromise to the diabetes in allowing us to do the things we want to achieve, but the more you experiment and perfect your planning and prep and try new ideas and see what works for you as an individual, the easier it gets. The great thing about the forum is that it is full of different ideas and strategies to try because hundreds of us are conducting experiments on ourselves day in and day out.
One of the things that I found quite restricting was the "rules" and regulations that I had been given by my diabetes clinicians because those "rules" deterred me from trying things out myself. It was only when I became really frustrated that I broke through those restrictions and actually started to learn how to manage my diabetes myself. I know that guidance and those "rules" are there to keep you safe but I think now that we have Libre and can see how our bodies are responding every minute of every day and night, we are able to keep ourselves safe without having to strictly follow protocols.
Libre has been incredibly liberating for me both with my BG management but more importantly with my mental and emotional response to my diabetes. I feel that I can safely experiment and clearly see the results. I average about 30 scans a day and have done from the start, 3 years ago when I started self funding. I don't do much with that data but it gives me a much fuller background picture of how my body responds to all sorts of different situations. It doesn't feel intrusive, just fascinating and I learn something new each day and over time you figure out what causes what and how to counteract it.
I also want to say that if you can't persuade your team to prescribe you a half unit pen, you can self fund although it really should not be necessary, especially as you are well overdue new injector pens and there should be no reason at all why they can't prescribe them for you. You are obviously already getting penfill cartridges for your NovoPen 4s so no change in prescription needed there.
As regards the clinic staff monitoring your Libre data, the only time they look at it is if you have a particular problem that they bring to your attention (edited... should read.... you bring to their attention and need help with) or if the Libre AGP summary report highlights an issue when they check it during your appointment. The clinic staff are far too busy to routinely monitor everyone or even anyone's results on a regular basis. We all had to allow access to our data as part of getting it on prescription although I believe that may have now been scrapped but it is helpful if we do have a problem, that we can ring up the clinic and they can log on and see what is happening. I haven't been to the clinic since Covid . I speak to my consultant on the phone for about 5-10 mins once a year and to be honest, I don't really feel like I need that as I have all the tools and knowledge I need right now, but I like to retain my place within the clinic just in case I do need help in the future, if for instance I wanted to try a different insulin or decided that I wanted a pump. You seem to be in the situation where you don't have any say in things and I found this at first but once I gained enough knowledge and did my DAFNE course and demonstrated that I knew whatI was doing and that I was consciously reviewing my approach to my diabetes, my relationship with my consultant seemed to change and I now feel that we are more equal and I bounce thoughts and ideas off him but ultimately it is down to me to decide what is right for me.... unless there is significant funding involved of course. 🙄
For instance, I too get a lot of hypos, but they are mostly very mild ones. I consistently achieve low 90s%TIR but usually 4-5% below range and often nocturnal hypos which the AGP report always flags up. These nocturnal hypos are almost always mild and follow extensive exercise the previous days. I reduce my evening Levemir to try to prevent them but I don't always get it right as none of us do with diabetes. Added to that I sleep best (deepest and most soundly) when my levels are around 4 so I don't want to push my levels up high at bedtime and be restless. Good sleep is important to me and I don't want to compromise on that. So far I have not seen any obvious erosion of my hypo awareness, so whilst I do what I can to reduce my hypos, I don't feel that my current level of hypos makes me at any more risk than Joe public whose levels may also dip below 4 during the depths of sleep. That said, I have never needed assistance and my low carb way of eating means that I am not using large bolus insulin doses. The thing is that these are the issues that I discuss with my consultant so that he knows I am thinking about these things and weighing up the risks and assessing whether they are changing each year and any thoughts I might have on reducing those risks.
One of the things that I found quite restricting was the "rules" and regulations that I had been given by my diabetes clinicians because those "rules" deterred me from trying things out myself. It was only when I became really frustrated that I broke through those restrictions and actually started to learn how to manage my diabetes myself. I know that guidance and those "rules" are there to keep you safe but I think now that we have Libre and can see how our bodies are responding every minute of every day and night, we are able to keep ourselves safe without having to strictly follow protocols.
Libre has been incredibly liberating for me both with my BG management but more importantly with my mental and emotional response to my diabetes. I feel that I can safely experiment and clearly see the results. I average about 30 scans a day and have done from the start, 3 years ago when I started self funding. I don't do much with that data but it gives me a much fuller background picture of how my body responds to all sorts of different situations. It doesn't feel intrusive, just fascinating and I learn something new each day and over time you figure out what causes what and how to counteract it.
I also want to say that if you can't persuade your team to prescribe you a half unit pen, you can self fund although it really should not be necessary, especially as you are well overdue new injector pens and there should be no reason at all why they can't prescribe them for you. You are obviously already getting penfill cartridges for your NovoPen 4s so no change in prescription needed there.
As regards the clinic staff monitoring your Libre data, the only time they look at it is if you have a particular problem that they bring to your attention (edited... should read.... you bring to their attention and need help with) or if the Libre AGP summary report highlights an issue when they check it during your appointment. The clinic staff are far too busy to routinely monitor everyone or even anyone's results on a regular basis. We all had to allow access to our data as part of getting it on prescription although I believe that may have now been scrapped but it is helpful if we do have a problem, that we can ring up the clinic and they can log on and see what is happening. I haven't been to the clinic since Covid . I speak to my consultant on the phone for about 5-10 mins once a year and to be honest, I don't really feel like I need that as I have all the tools and knowledge I need right now, but I like to retain my place within the clinic just in case I do need help in the future, if for instance I wanted to try a different insulin or decided that I wanted a pump. You seem to be in the situation where you don't have any say in things and I found this at first but once I gained enough knowledge and did my DAFNE course and demonstrated that I knew whatI was doing and that I was consciously reviewing my approach to my diabetes, my relationship with my consultant seemed to change and I now feel that we are more equal and I bounce thoughts and ideas off him but ultimately it is down to me to decide what is right for me.... unless there is significant funding involved of course. 🙄
For instance, I too get a lot of hypos, but they are mostly very mild ones. I consistently achieve low 90s%TIR but usually 4-5% below range and often nocturnal hypos which the AGP report always flags up. These nocturnal hypos are almost always mild and follow extensive exercise the previous days. I reduce my evening Levemir to try to prevent them but I don't always get it right as none of us do with diabetes. Added to that I sleep best (deepest and most soundly) when my levels are around 4 so I don't want to push my levels up high at bedtime and be restless. Good sleep is important to me and I don't want to compromise on that. So far I have not seen any obvious erosion of my hypo awareness, so whilst I do what I can to reduce my hypos, I don't feel that my current level of hypos makes me at any more risk than Joe public whose levels may also dip below 4 during the depths of sleep. That said, I have never needed assistance and my low carb way of eating means that I am not using large bolus insulin doses. The thing is that these are the issues that I discuss with my consultant so that he knows I am thinking about these things and weighing up the risks and assessing whether they are changing each year and any thoughts I might have on reducing those risks.
I can really relate to this thought process. It is hard at times, but I do also relish the challenge and get a real sense of achievement from beating the odds and getting it right in difficult circumstances.
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