Very anxious Newbie struggling with mental health, just a vent post and telling my story

[Sara Grice]

Hi, I can't belive I forgot about this forum, I have been making posts in reddit but I feel they don't like vent posts..but I have alot of feeling to get off my chest..

How i was diagnosed: I was diagnosed on October last year, it came as a bit of a shock because at frist they thought I was type 2 (family history of type 2 and the test took ages to get back due to some supply issue..but it showed i was type 1) and got a bit upset so the doctor could see i was getting overwelmbed so gave me the basics and I feel that did more harm then good cos I wasn't educated as well as I could have been. I was given a libre 2+ but before the hour appointment even ended it had started to fall off so she gave me another one.i even had it in the wrong position on my arm for awhile but that's another story

I suffer from health based anxiety so naturally when they put the sensor on me I struggled with fixation on it. But after a week or so and a bit of a sern word from my diabetes team I managed to cut down my tike spent looking at the sensor...until I got sick around Christmas time and made me spiral back into bad habits cos I felt like I had to keep a closer eye on it..to this day I still haven't got back to where I was. My other bad habit is hypo anxiety...I know it's wrong but I have a bad habit of not wanting to let myself get into a hypo and end up eating something before I actily need to..so the consequence is I have never had a full hypo

But back in February I had 3 sensors fail in a row....and had to go blind just of finger testing for a weekend and it really effected my mental state..I was scared and given the fact I don't know what I hypo feels like (and it sounded alot like my anxiety symptoms..which means If I didn't find ways to calm myself down I wouldn't beble to tell) I was a complete mess..things sorted itself out when I got a new phone. And things sort of got a bit better from there but I should have realised how much my mental health was tied to having a working sensor cos this weekend has been rough

I put a new sensor on on Saturday and it was just all over the place...very inaccurate..no idea what I did wrong. Anyway waiting the 48 hours to see if it would improve but it didn't..so I put a new one on this morning (the best time for my levels) but I could tell I was already getting anxious and stressed that I might not work...when I put it on it started bleeding..which to me often means it will fail but still waited to see and it seamed OK a frist (a but low but still normal range) but it just got lower and lower and wouldnr respond to any thing I did or ate..
Which catches you up to date on things

I spoke to abott and they said a few things:

-The blood probably dried on the filament which gives the low readings
-that you shouldn't use a patch (kinda not a choice as without it they fall off within a few hours..)
-I should be swappimg arms (I try to explain thay every time I try to use my right arm the sensor doesn't work)

So right now I'm a stressed anxious mess thinking about what I should do because i am running out of space on my left arm because i know if i put it close to another site it will just end up inaccurate and my right is the problem one and I don't know if my mental health can take another day of blind finger prick tests. There's also the wrinkle of trying to stop myself from getting stressed about the sensor working when applying the sensor cos that's just as bad as eating something in terms of riaisng levels

So feeling very disheartened and honestly a bit depressed when I'm not anxious and panic-y
I know alot of people say "it gets easier" "You can learn to live with it" but...I can't help but think that means that my life will always be bad I will notice it less...

I am seeking mental health support but it's been a long time on the waiting list. Sinse my local diabeties clinic only offers mental health support for kids so I had to go through my GP and probably get a therapist who doesn't know anything about type 1 diabetes

 

[Sara Grice]

Anyone else struggle with only being able to use 1 arm? What do you do to prevent inaccurate readings?
I was given a libre reader from libre as my phone is kinda new and wasn't one of their supported models..for people who use both a reader and a phone..I know there's usually a difference and I feel that would just add more stress cos I wouldn't know which to belive..which one do you normally go off from?

 

[Leadinglights]

Anyone else struggle with only being able to use 1 arm? What do you do to prevent inaccurate readings?
I was given a libre reader from libre as my phone is kinda new and wasn't one of their supported models..for people who use both a reader and a phone..I know there's usually a difference and I feel that would just add more stress cos I wouldn't know which to belive..which one do you normally go off from?

You do sound to be having too many problems with the Libre, some people just do not get on with it, it doesn't suit their body but they find the Dexcom better. Perhaps you could ask to swap to that and see. I believe you a get a free trial of one.

 

[Sara Grice]

You do sound to be having too many problems with the Libre, some people just do not get on with it, it doesn't suit their body but they find the Dexcom better. Perhaps you could ask to swap to that and see. I believe you a get a free trial of

You do sound to be having too many problems with the Libre, some people just do not get on with it, it doesn't suit their body but they find the Dexcom better. Perhaps you could ask to swap to that and see. I believe you a get a free trial of one.

My doc did mention that ad an option bsck in feb but when things got better i kinda forgot h..that's the one you have to calibrate yourself right? How does that work?

 

[Leadinglights]

My doc did mention that ad an option bsck in feb but when things got better i kinda forgot h..that's the one you have to calibrate yourself right? How does that work?

I don't think you have to calibrate but I think it is more you can adjust to match your finger prick reading if you suspect it is not giving you good correlation.
I don't use either so can't give you the full low down but there are people who have tried both so hopefully they will be along to comment.

 

[Tdm]

You can calibrate it, but normally you don't need to.
It's certified for tummy as well as back of the arm.

 

[Inka]

Anyone else struggle with only being able to use 1 arm? What do you do to prevent inaccurate readings?
I was given a libre reader from libre as my phone is kinda new and wasn't one of their supported models..for people who use both a reader and a phone..I know there's usually a difference and I feel that would just add more stress cos I wouldn't know which to belive..which one do you normally go off from?

No, but one of my arms is far fussier about the CGM placement than the other, so I’d guess that’s similar to your problem. My advice is to try your dodgy arm again, noting positioning. When I use my dodgy arm, I now know to place the sensor at one of the points on an invisible line.

 

[Sara Grice]

No, but one of my arms is far fussier about the CGM placement than the other, so I’d guess that’s similar to your problem. My advice is to try your dodgy arm again, noting positioning. When I use my dodgy arm, I now know to place the sensor at one of the points on an invisible line.

That is the plan I've settled on. Trying to get my nerves about it under control

 

[mashedupmatt]

I always used my left arm for my Libre sensor, but when one fell off inexplicably a month or so ago, I decided to try the other arm, as I was just about to go out and didn't have time to clean off the adhesive that is left over - found that the right arm worked better which is strange (there must be some science to it!) - I'm now alternating arms - it is very stressful when they don't work properly, but if you don't want to answer 20 questions from Abbott and listen to all of their recommendations when reporting a faulty one, you can just use the online form (that's what I do) - most of my replacements have been due to signal loss, which when selected, you aren't advised to call them, and can fill in the rest of the form without any further grief - This is the link:

Sensor Support Form | United Kingdom | FreeStyle Libre | Abbott

Need help? Fill in our online sensor support form for Patients from United Kingdom for your FreeStyle Libre 2 or 3 sensor today.

www.freestyle.abbott

A Diabetes diagnosis is very scary, particularly at first, and the failures of tech don't help, but they are usually resolved with no issues - and keep reaching out on here if you need some help with it all - we all "get it" and genuinely want to help and support each other

 

[Woodywoodpecker]

Hi, I can't belive I forgot about this forum, I have been making posts in reddit but I feel they don't like vent posts..but I have alot of feeling to get off my chest..

How i was diagnosed: I was diagnosed on October last year, it came as a bit of a shock because at frist they thought I was type 2 (family history of type 2 and the test took ages to get back due to some supply issue..but it showed i was type 1) and got a bit upset so the doctor could see i was getting overwelmbed so gave me the basics and I feel that did more harm then good cos I wasn't educated as well as I could have been. I was given a libre 2+ but before the hour appointment even ended it had started to fall off so she gave me another one.i even had it in the wrong position on my arm for awhile but that's another story

I suffer from health based anxiety so naturally when they put the sensor on me I struggled with fixation on it. But after a week or so and a bit of a sern word from my diabetes team I managed to cut down my tike spent looking at the sensor...until I got sick around Christmas time and made me spiral back into bad habits cos I felt like I had to keep a closer eye on it..to this day I still haven't got back to where I was. My other bad habit is hypo anxiety...I know it's wrong but I have a bad habit of not wanting to let myself get into a hypo and end up eating something before I actily need to..so the consequence is I have never had a full hypo

But back in February I had 3 sensors fail in a row....and had to go blind just of finger testing for a weekend and it really effected my mental state..I was scared and given the fact I don't know what I hypo feels like (and it sounded alot like my anxiety symptoms..which means If I didn't find ways to calm myself down I wouldn't beble to tell) I was a complete mess..things sorted itself out when I got a new phone. And things sort of got a bit better from there but I should have realised how much my mental health was tied to having a working sensor cos this weekend has been rough

I put a new sensor on on Saturday and it was just all over the place...very inaccurate..no idea what I did wrong. Anyway waiting the 48 hours to see if it would improve but it didn't..so I put a new one on this morning (the best time for my levels) but I could tell I was already getting anxious and stressed that I might not work...when I put it on it started bleeding..which to me often means it will fail but still waited to see and it seamed OK a frist (a but low but still normal range) but it just got lower and lower and wouldnr respond to any thing I did or ate..
Which catches you up to date on things

I spoke to abott and they said a few things:

-The blood probably dried on the filament which gives the low readings
-that you shouldn't use a patch (kinda not a choice as without it they fall off within a few hours..)
-I should be swappimg arms (I try to explain thay every time I try to use my right arm the sensor doesn't work)

So right now I'm a stressed anxious mess thinking about what I should do because i am running out of space on my left arm because i know if i put it close to another site it will just end up inaccurate and my right is the problem one and I don't know if my mental health can take another day of blind finger prick tests. There's also the wrinkle of trying to stop myself from getting stressed about the sensor working when applying the sensor cos that's just as bad as eating something in terms of riaisng levels

So feeling very disheartened and honestly a bit depressed when I'm not anxious and panic-y
I know alot of people say "it gets easier" "You can learn to live with it" but...I can't help but think that means that my life will always be bad I will notice it less...

I am seeking mental health support but it's been a long time on the waiting list. Sinse my local diabeties clinic only offers mental health support for kids so I had to go through my GP and probably get a therapist who doesn't know anything about type 1 diabetes

Hi I was diagnosed a year tomorrow and suffer with anxiety, not health based. I’m in Libre 2 just now and not had many problems with it, ive had couple bleeds and it worked ok, I use a patch to secure mine, haven’t had any fall off but caught one on towel when getting dry from shower, it was reading 2.5 which I didn’t think was right so done finger prick, which was a lot higher so changed Libre. I was like you in the beginning thought I can’t do this, but it does get easier. I was terrified off having a hypo, but since putting my alarm up a bit I’m more relaxed

 

[Sara Grice]

Hi I was diagnosed a year tomorrow and suffer with anxiety, not health based. I’m in Libre 2 just now and not had many problems with it, ive had couple bleeds and it worked ok, I use a patch to secure mine, haven’t had any fall off but caught one on towel when getting dry from shower, it was reading 2.5 which I didn’t think was right so done finger prick, which was a lot higher so changed Libre. I was like you in the beginning thought I can’t do this, but it does get easier. I was terrified off having hypo thought I was going to die, I’m not 100% with it all but getting there one day at a time

Thanks for your lovely reply, is it just libre 2 you use not the libre 2+?
I tend to fair pretty ok when I have a working sensor but it's just so hard for me to deal with the moments where I don't have one (from the sounds of it you've managed to avoid that situation..I'm a tad jealous)
Or even the thought of a sensor not working while waiting for the countdown to finish is hard for me to control. It all gets exhausting so my therapy sessions can't start soon enough tbh. I'm glad to hear your doing better, I'll try to follow your lead

 

[Thebearcametoo]

Just to give you some context, when my kid was diagnosed we just didn’t finger pricks and about 3 years later went onto a sensor. Both of us parents and my kid were assessed with checking the data and getting anxious. So we took a break for a few months and went back to it with a better and calmer approach. You’re not alone in finding tech can cause as much anxiety as it relieves.

As has been said if you don’t get on with the libre then Dexcom is an option. You can legally (I mean it’s not illegal with the libre but not recommended by abbot and you can’t use readings for driving) put a Dexcom on your abdomen so that increases the site availability. It is worth trying to move your sites around and if you can get to a point where you feel more in control with the sensor then trying your other arm again is a good idea.

I’m so sorry you’re having problems. Diabetes can be very tiring and I’m glad you’ve come here to get some support.

 

[Inka]

That is the plan I've settled on. Trying to get my nerves about it under control

I think it’s just that many (most?) people have two slightly different arms with regard to fat and muscle layout. Now I’m experienced with both arms, I can feel they’re different if I squeeze them. Knowing the cause, helped me persist and approach things methodically rather than more randomly.

It’s highly likely you’ll have places on that arm you’ll be able to use. It’s just a question of finding them 🙂

 

[Woodywoodpecker]

Thanks for your lovely reply, is it just libre 2 you use not the libre 2+?
I tend to fair pretty ok when I have a working sensor but it's just so hard for me to deal with the moments where I don't have one (from the sounds of it you've managed to avoid that situation..I'm a tad jealous)
Or even the thought of a sensor not working while waiting for the countdown to finish is hard for me to control. It all gets exhausting so my therapy sessions can't start soon enough tbh. I'm glad to hear your doing better, I'll try to follow your lead

Just the 2 just now, but will be moving on to 2+ as 2 being discontinued. I’ve had a few moments myself with having signal loss, getting myself into a panic found that reinstalling the app has helped with that. Im a bit obsessed with looking at my glucose levels, trying to limit myself with that. I was the same with hypos terrified when I saw the downward arrow, Not as bad now don’t panic as much. You will get there only takes time, I have found this forum brilliant, far more information than I have received from any doctor or nurse. Don’t be afraid to ask questions, there is always someone to help

 

[Sara Grice]

Omg I had just got my upset tears under controll and your message started me off on happy tears that last part was so nice to hear someone say.

I always used my left arm for my Libre sensor, but when one fell off inexplicably a month or so ago, I decided to try the other arm, as I was just about to go out and didn't have time to clean off the adhesive that is left over - found that the right arm worked better which is strange (there must be some science to it!) - I'm now alternating arms - it is very stressful when they don't work properly, but if you don't want to answer 20 questions from Abbott and listen to all of their recommendations when reporting a faulty one, you can just use the online form (that's what I do) - most of my replacements have been due to signal loss, which when selected, you aren't advised to call them, and can fill in the rest of the form without any further grief - This is the link:

Sensor Support Form | United Kingdom | FreeStyle Libre | Abbott

Need help? Fill in our online sensor support form for Patients from United Kingdom for your FreeStyle Libre 2 or 3 sensor today.

www.freestyle.abbott

A Diabetes diagnosis is very scary, particularly at first, and the failures of tech don't help, but they are usually resolved with no issues - and keep reaching out on here if you need some help with it all - we all "get it" and genuinely want to help and support each other

Thanks for your lovely reply omg I had just got my upset tears under control and now you start me off on happy tears . The lady part was so nice to hear you say. I think I will try swapping it again see how it goes

 

[rebrascora]

I wondered if you are right handed and applying the sensor with your left hand which perhaps has less dexterity is what is causing the issue with sensors on your right arm. I find the applicator tends to snag on the sensor as I am trying to lift it off and I have to be very careful not to dislodge the sensor when I wriggle it free. If you do dislodge it during application and then press it down, the sensor (edit.... should read "filament) kinks and that causes it to fail.
Most of my sensors cause a little bit of bleeding and it is much rarer for me when they don't. I am not talking about blood running down my arm but I need to blot the sensor with toilet paper or cotton wool otherwise it will mark my clothing. This never affects the way it works and Libre have been really reliable for me. I mostly use the reader, but if I have to leave the reader on charge at home and have to go out I will use my phone as a second device and it almost always exactly agrees with the reader when I have compared the two give or take a 0.1mmol variation on a couple of occasions so I would say that you should not worry at all about discrepancy between reader and phone because it just isn't a problem.

I think skin prep and application are the two key features if you are finding that they are coming loose and they will usually start to read low if they are coming loose. Ensuring that your skin is clean, degreased either by washing or using an alcohol swab and then thoroughly dry (i towel dry my arm and then blast it with the hair dryer to make doubly sure it is dry after I have washed it. I also regularly exfoliate before application to remove any dry or flaky skin. As I said above, I am very careful when lifting the applicator away after applying the sensor to my arm. In fact I count to 100 holding the applicator in place before I lift it away and if it is snagged, which it almost always is, I tend to gently twist it back and forth to free it up rather than just pull it, as the latter is much more likely to disturb the filament when the adhesive has not had time to really bond with the skin and if the filament is disturbed (pulled out slightly) it will just bend when you pat it back down.

It might seem a faff to go through such a routine each time a new sensor is applied but I almost never have issues with them so for me this is well worth it. I did also invest in an arm strap to provide support and protection for the sensor although my second one recently broke so I am not using any at the moment, but again this gives the adhesive additional support if you are prone to them coming loose without applying patches. The strap consists of a 3D printed "watch face" type shape which fits perfectly around the circumference of the sensor but doesn't cover it and it is held in place with an adjustable elastic strap. They come in a whole range of colours from skin tone through pastel colours to loud and proud neon. I felt that it was well worth the investment and my first one lasted 2 years of almost continuous use. My clothing often caught on the strap and pinged it but it protected the sensor I think particularly during the first 24 hours when the adhesive is still bonding to the skin.
Many of us apply our new sensor a day before the old one runs out but don't activate it until the next day when the old one dies. This allows and tissue or cellular reaction to a foreign object being "fired" into our arm, to settle down before we actually set the sensor away sampling our levels and this usually gives more consistent results over the first day or two when it can sometimes be less reliable.

I can totally understand you feeling anxious once you were left without CGM. I occasionally have a voluntary break from them and the first night without it makes me feel surprisingly vulnerable even though I am very confident of dealing with hypos and know my signs and know that my body will wake me up if I have one during my sleep, so I can really empathise with your increased anxiety when you are without it. I am a bit stubborn and resent the idea of being so reliant on the technology and this is part of the reason why I have a voluntary break from it every now and then, to remind myself that I can manage without it, but also remind me how much more convenient and reassuring it is than finger pricking.

Anyway, I hope that some of my comments may have been helpful or give you some tips to apply your Libre sensors more successfully but also wanted to empathise with your anxiety about being left without sensors occasionally. It helps me to remind myself that my uncle survived many decades without even a finger prick meter and the only way he could find out what his levels were in the early days was to collect some using add a reagent and boil it up in a test tube and compare the colour it went with a chart which effectively told him what his BG was about 3 hours previously..... so really not much use at all. If he could survive to the age of 84 with so little technology and still be cycling on his own at the age of 80, then I should be able to manage with the superior insulins and technology I have access to. Indeed there are members of this forum who still remember boiling up their urine in a test tube to get readings. Sometimes I think the extra technology can feed our anxiety and as I say that is why I sometimes take a break from it. If you didn't have Libre you would almost certainly have had a hypo by now and have gained confidence in dealing with them and know what to look out for. In some respects it is great that you have never had a hypo, but in other respects the fear of them is perhaps affecting you more than having a few and gaining confidence that you can deal with them and that your body will warn you.

I know that I was frightened of nocturnal hypos for a long time when first diagnosed and I would wake up several times every night to see how I felt and sometimes finger prick to check. I wasn't waking up because I was hypo, but because the fear of having one was making me sleep very poorly and wake up. Then after I started doing more exercise, I had a week of nocturnal hypos (this was before I got LIbre and they didn't have alarms then anyway) and oddly it gave me the confidence to know that I will wake up when it happens and be able to treat it and in fact I now sleep really soundly even though I do still have nocturnal hypos, because I now have that confidence to manage it well.
What I am saying is the fear was far more debilitating and unsettling and losing me far more sleep than the reality does. Now I wake up when my low alarm goes off or my body wakes me up, assess if I am hypo or not and how many jelly babies I need (usually just 1 or 2), put them in my mouth and chew and I am back to deep sleep in a couple of minutes at the most. No sweating, no panic, just treat it with the minimal amount of carbs it needs and straight back off to sleep. I hope that someday you will reach this level of confidence, but I do wonder if a percentage of those people who have never known a time when they had to manage without Libre, will ever get over the fear because they avoid facing it and learning to manage it. Not your fault, just perhaps a victim of our reliance on technology.

 

[Loobyloo]

I didn't get on with Libre 2 or 2+ which gave wildly innaccurate readings for me. I find Dexcom much more accurate and i am able to calibrate with my finger prick readings to begin with until it settles down to pretty accurate. I always use the same arm because of the way i lie in bed and no problems. Calibrating is just simply entering a finger prick reading if you feel readings may need adjusting or lower/higher than you think they should be.
I use the patch dexcom supplies and then tegaderm plaster over just to confident it stays the distance.

 

[Woodywoodpecker]

I wondered if you are right handed and applying the sensor with your left hand which perhaps has less dexterity is what is causing the issue with sensors on your right arm. I find the applicator tends to snag on the sensor as I am trying to lift it off and I have to be very careful not to dislodge the sensor when I wriggle it free. If you do dislodge it during application and then press it down, the sensor (edit.... should read "filament) kinks and that causes it to fail.
Most of my sensors cause a little bit of bleeding and it is much rarer for me when they don't. I am not talking about blood running down my arm but I need to blot the sensor with toilet paper or cotton wool otherwise it will mark my clothing. This never affects the way it works and Libre have been really reliable for me. I mostly use the reader, but if I have to leave the reader on charge at home and have to go out I will use my phone as a second device and it almost always exactly agrees with the reader when I have compared the two give or take a 0.1mmol variation on a couple of occasions so I would say that you should not worry at all about discrepancy between reader and phone because it just isn't a problem.

I think skin prep and application are the two key features if you are finding that they are coming loose and they will usually start to read low if they are coming loose. Ensuring that your skin is clean, degreased either by washing or using an alcohol swab and then thoroughly dry (i towel dry my arm and then blast it with the hair dryer to make doubly sure it is dry after I have washed it. I also regularly exfoliate before application to remove any dry or flaky skin. As I said above, I am very careful when lifting the applicator away after applying the sensor to my arm. In fact I count to 100 holding the applicator in place before I lift it away and if it is snagged, which it almost always is, I tend to gently twist it back and forth to free it up rather than just pull it, as the latter is much more likely to disturb the filament when the adhesive has not had time to really bond with the skin and if the filament is disturbed (pulled out slightly) it will just bend when you pat it back down.

It might seem a faff to go through such a routine each time a new sensor is applied but I almost never have issues with them so for me this is well worth it. I did also invest in an arm strap to provide support and protection for the sensor although my second one recently broke so I am not using any at the moment, but again this gives the adhesive additional support if you are prone to them coming loose without applying patches. The strap consists of a 3D printed "watch face" type shape which fits perfectly around the circumference of the sensor but doesn't cover it and it is held in place with an adjustable elastic strap. They come in a whole range of colours from skin tone through pastel colours to loud and proud neon. I felt that it was well worth the investment and my first one lasted 2 years of almost continuous use. My clothing often caught on the strap and pinged it but it protected the sensor I think particularly during the first 24 hours when the adhesive is still bonding to the skin.
Many of us apply our new sensor a day before the old one runs out but don't activate it until the next day when the old one dies. This allows and tissue or cellular reaction to a foreign object being "fired" into our arm, to settle down before we actually set the sensor away sampling our levels and this usually gives more consistent results over the first day or two when it can sometimes be less reliable.

I can totally understand you feeling anxious once you were left without CGM. I occasionally have a voluntary break from them and the first night without it makes me feel surprisingly vulnerable even though I am very confident of dealing with hypos and know my signs and know that my body will wake me up if I have one during my sleep, so I can really empathise with your increased anxiety when you are without it. I am a bit stubborn and resent the idea of being so reliant on the technology and this is part of the reason why I have a voluntary break from it every now and then, to remind myself that I can manage without it, but also remind me how much more convenient and reassuring it is than finger pricking.

Anyway, I hope that some of my comments may have been helpful or give you some tips to apply your Libre sensors more successfully but also wanted to empathise with your anxiety about being left without sensors occasionally. It helps me to remind myself that my uncle survived many decades without even a finger prick meter and the only way he could find out what his levels were in the early days was to collect some using add a reagent and boil it up in a test tube and compare the colour it went with a chart which effectively told him what his BG was about 3 hours previously..... so really not much use at all. If he could survive to the age of 84 with so little technology and still be cycling on his own at the age of 80, then I should be able to manage with the superior insulins and technology I have access to. Indeed there are members of this forum who still remember boiling up their urine in a test tube to get readings. Sometimes I think the extra technology can feed our anxiety and as I say that is why I sometimes take a break from it. If you didn't have Libre you would almost certainly have had a hypo by now and have gained confidence in dealing with them and know what to look out for. In some respects it is great that you have never had a hypo, but in other respects the fear of them is perhaps affecting you more than having a few and gaining confidence that you can deal with them and that your body will warn you.

I know that I was frightened of nocturnal hypos for a long time when first diagnosed and I would wake up several times every night to see how I felt and sometimes finger prick to check. I wasn't waking up because I was hypo, but because the fear of having one was making me sleep very poorly and wake up. Then after I started doing more exercise, I had a week of nocturnal hypos (this was before I got LIbre and they didn't have alarms then anyway) and oddly it gave me the confidence to know that I will wake up when it happens and be able to treat it and in fact I now sleep really soundly even though I do still have nocturnal hypos, because I now have that confidence to manage it well.
What I am saying is the fear was far more debilitating and unsettling and losing me far more sleep than the reality does. Now I wake up when my low alarm goes off or my body wakes me up, assess if I am hypo or not and how many jelly babies I need (usually just 1 or 2), put them in my mouth and chew and I am back to deep sleep in a couple of minutes at the most. No sweating, no panic, just treat it with the minimal amount of carbs it needs and straight back off to sleep. I hope that someday you will reach this level of confidence, but I do wonder if a percentage of those people who have never known a time when they had to manage without Libre, will ever get over the fear because they avoid facing it and learning to manage it. Not your fault, just perhaps a victim of our reliance on technology.

I hope one day I can be as confident as you as well

 

[Sara Grice]

I wondered if you are right handed and applying the sensor with your left hand which perhaps has less dexterity is what is causing the issue with sensors on your right arm. I find the applicator tends to snag on the sensor as I am trying to lift it off and I have to be very careful not to dislodge the sensor when I wriggle it free. If you do dislodge it during application and then press it down, the sensor kinks and that causes it to fail. Most of my sensors cause a little bit of bleeding and it is much rarer for me when they don't. I am not talking about blood running down my arm but I need to blot the sensor with toilet paper or cotton wool otherwise it will mark my clothing. This never affects the way it works and Libre have been really reliable for me. I mostly use the reader, but if I have to leave the reader on charge at home and have to go out I will use my phone as a second device and it almost always exactly agrees with the reader when I have compared the two give or take a 0.1mmol variation on a couple of occasions so I would say that you should not worry at all about discrepancy between reader and phone because it just isn't a problem.

I think skin prep and application are the two key features if you are finding that they are coming loose and they will usually start to read low if they are coming loose. Ensuring that your skin is clean, degreased either by washing or using an alcohol swab and then thoroughly dry (i towel dry my arm and then blast it with the hair dryer to make doubly sure it is dry after I have washed it. I also regularly exfoliate before application to remove any dry or flaky skin. As I said above, I am very careful when lifting the applicator away after applying the sensor to my arm. In fact I count to 100 holding the applicator in place before I lift it away and if it is snagged, which it almost always is, I tend to gently twist it back and forth to free it up rather than just pull it, as the latter is much more likely to disturb the filament when the adhesive has not had time to really bond with the skin and if the filament is disturbed (pulled out slightly) it will just bend when you pat it back down.

It might seem a faff to go through such a routine each time a new sensor is applied but I almost never have issues with them so for me this is well worth it. I did also invest in an arm strap to provide support and protection for the sensor although my second one recently broke so I am not using any at the moment, but again this gives the adhesive additional support if you are prone to them coming loose without applying patches. The strap consists of a 3D printed "watch face" type shape which fits perfectly around the circumference of the sensor but doesn't cover it and it is held in place with an adjustable elastic strap. They come in a whole range of colours from skin tone through pastel colours to loud and proud neon. I felt that it was well worth the investment and my first one lasted 2 years of almost continuous use. My clothing often caught on the strap and pinged it but it protected the sensor I think particularly during the first 24 hours when the adhesive is still bonding to the skin.
Many of us apply our new sensor a day before the old one runs out but don't activate it until the next day when the old one dies. This allows and tissue or cellular reaction to a foreign object being "fired" into our arm, to settle down before we actually set the sensor away sampling our levels and this usually gives more consistent results over the first day or two when it can sometimes be less reliable.

I can totally understand you feeling anxious once you were left without CGM. I occasionally have a voluntary break from them and the first night without it makes me feel surprisingly vulnerable even though I am very confident of dealing with hypos and know my signs and know that my body will wake me up if I have one during my sleep, so I can really empathise with your increased anxiety when you are without it. I am a bit stubborn and resent the idea of being so reliant on the technology and this is part of the reason why I have a voluntary break from it every now and then, to remind myself that I can manage without it, but also remind me how much more convenient and reassuring it is than finger pricking.

Anyway, I hope that some of my comments may have been helpful or give you some tips to apply your Libre sensors more successfully but also wanted to empathise with your anxiety about being left without sensors occasionally. It helps me to remind myself that my uncle survived many decades without even a finger prick meter and the only way he could find out what his levels were in the early days was to collect some using add a reagent and boil it up in a test tube and compare the colour it went with a chart which effectively told him what his BG was about 3 hours previously..... so really not much use at all. If he could survive to the age of 84 with so little technology and still be cycling on his own at the age of 80, then I should be able to manage with the superior insulins and technology I have access to. Indeed there are members of this forum who still remember boiling up their urine in a test tube to get readings. Sometimes I think the extra technology can feed our anxiety and as I say that is why I sometimes take a break from it. If you didn't have Libre you would almost certainly have had a hypo by now and have gained confidence in dealing with them and know what to look out for. In some respects it is great that you have never had a hypo, but in other respects the fear of them is perhaps affecting you more than having a few and gaining confidence that you can deal with them and that your body will warn you.

I know that I was frightened of nocturnal hypos for a long time when first diagnosed and I would wake up several times every night to see how I felt and sometimes finger prick to check. I wasn't waking up because I was hypo, but because the fear of having one was making me sleep very poorly and wake up. Then after I started doing more exercise, I had a week of nocturnal hypos (this was before I got LIbre and they didn't have alarms then anyway) and oddly it gave me the confidence to know that I will wake up when it happens and be able to treat it and in fact I now sleep really soundly even though I do still have nocturnal hypos, because I now have that confidence to manage it well.
What I am saying is the fear was far more debilitating and unsettling and losing me far more sleep than the reality does. Now I wake up when my low alarm goes off or my body wakes me up, assess if I am hypo or not and how many jelly babies I need (usually just 1 or 2), put them in my mouth and chew and I am back to deep sleep in a couple of minutes at the most. No sweating, no panic, just treat it with the minimal amount of carbs it needs and straight back off to sleep. I hope that someday you will reach this level of confidence, but I do wonder if a percentage of those people who have never known a time when they had to manage without Libre, will ever get over the fear because they avoid facing it and learning to manage it. Not your fault, just perhaps a victim of our reliance on technology.

Thank you a very helpful reply, you are correct I am right handed which actuly makes what you said make alot of sense. I do all the skin prep back when i didn't you patches and I just don't know why they still had trouble staying on. I am classed as on the overweight side so it seamed like surface of my arm was so round as I moved about it slowly started to come up stuck, then gravity did the rest. Had one last most of the say untill it then fell off at work.

In terms of bleeding I've had it happen 3 times, one the sensor failed, the other was fine and now this one is low, I have actily noticed it is starting to actually creep up to being slightly more accurate, when abbott made it sound more like it was a lost cause...someone on reddit said yes it can cause some clotting around the filament but your body and immune system wil eventually resolve the clots and the readings get back to normal, so now I'm not sure if I should change it or not..or maybe I shouldn't go random info from reddit I dunno. I am glad at least that I didn't take it off already cos as weird as it sounds having a sensor to look at accurate or not makes me feel clamer.

I often worry how I would react to a hypo, I know what I need to do (I have both jellybabies ((ha! Same choice of hypo snack)) and some dextrose drinks nearby) but I worry mu panic may effect my thinking.. I often just take a moment to remind myself of the steps I need to do so I do feel prepared should an unplanned one happen..but I am still bad at stopping what might have been a hypo to soon to know..because why risk it..I dunno it worked ok so far.

 

[Sara Grice]

I didn't get on with Libre 2 or 2+ which gave wildly innaccurate readings for me. I find Dexcom much more accurate and i am able to calibrate with my finger prick readings to begin with until it settles down to pretty accurate. I always use the same arm because of the way i lie in bed and no problems. Calibrating is just simply entering a finger prick reading if you feel readings may need adjusting or lower/higher than you think they should be.
I use the patch dexcom supplies and then tegaderm plaster over just to confident it stays the distance.

Huh so you type in a finger reading and it adjusts itself? How does lag factor into it cos when I have a good sensor it's still about 15-30 mins behind my finger readings?