My Experience With The Freestyle Libre System: Blood Sugar Anxiety
November 14th is World Diabetes Day! This is my initial experience with the Freestyle Libre flash glucose system for World Diabetes Day, enjoy!
I've been using the Freestyle Libre sensors for over a month now and it has seriously made me realise how ancient just 'checking' your blood sugar as that only shows you a snap shot of what your blood sugar is on at that one time. After only having the first sensor in my arm for a couple of days, I realised my blood sugar was NOT under control at all when I was under the impression that it was being a bit off but not too bad. My daily graph just looks like a wiggly snake, and above target most of the time (except for being constantly low all night).
Now it was upsetting to see that my diabetes wasn't under control when I was trying hard to keep it at bay, however now having this data, my diabetic nurse and myself could start fresh and hatch a plan. We put me on a new long acting insulin as we could clearly see (for whatever reason) my current long acting insulin was just not working. And even better, while wearing the sensor I could actively see if the new insulin was doing it's job and if I needed to adjust it. After a couple of bad days and deciding to give myself one more unit than my nurse told me to take, it was making a difference!
However I could not for the life of me figure out how to stop my meal time spikes, so after my amazing partner did some googling, we decided to give split bolusing a go. After a lot of experimenting, tears and shouting, we figured out what ~usually~ works for my body and certain meals. Again with the aid of the Libre sensor, I could actively see what my blood sugar was doing. I check my blood sugar 15 minutes before eating using the carb counting settings/calculator on the meter, you still need to test your blood sugar with a test strip (and you should as your sensor isn't always correct!) Then I give myself either 70% of my insulin, eat my meal 15 minutes later and then set a timer on the meter (a setting I find myself using all day, every day!) and give myself the 30% of my insulin half hour/hour later.
So it sounds like I've finally found myself something that's really helping me right? Unfortunately it's not that easy. While at the Libre free trail, we can across some road blocks. The main one: the sensor can't go into tattoos. That leaves me with a little strip on my right arm that the sensor can go into, and thats it. Freestyle only advise you wear the sensors on the back of your arm; just slightly round the back in an area where there is a little 'wiggle' so it's not going to go into muscle (that will hurt, a lot) but it can't go into real fatty areas. However, through the wonders of the diabetic community online I've seen that many people actually wear them in their legs. Fantastic! Problem sorted! ..not quite.
I'm going to put a disclaimer here: I am not advising you wear the sensors anywhere except your arms, I don't want people to waste sensors because they are expensive (£50 without vat for one).
After speaking to a really nice girl on Instagram (thank you Soph!), she told me where to insert it into my leg and I thought I need to try because in all honestly I've started to develop anxiety around not wearing one constantly. After half hour of having the application cup hovering over my leg because I was too scared to insert it into my leg (lol) I put it in and it didn't hurt. Long story short; that sensor didn't last a full two weeks as it was super inaccurate and also became quite painful after I knocked it a few times so I took it out.
I was sent a new sensor as that one failed (I didn't say it was in my legs, oops) and the only option I've got is to try a sensor in my leg again to see if that failed sensor was actually faulty. I've got a sensor in my arm right now, and when I applied this sensor it actually hurt a lot. I hadn't had a sensor in my arm for nearly a month but it was still sore, so I need to move it more but I have tattoos in the way, first world problems.
I will admit it's been a very bumpy ride with trailing the Freestyle Libre system, but it always with when you're trying new medical devices. However I will admit that I've become a bit obsessed with what my blood sugar is on, as I am desperate to have my diabetes under control. I have cataract surgeries looming in the next year as they are affecting my vision, I'm scared of retinopathy and just shortening my life. It's so hard to get your head around having such bad control of your blood sugar even though you're trying ridiculously hard. It's such a defeating feeling and it's hard to keep investing so much into a body that's not playing fair, but I was reminded by an awesome woman on Instagram (Libby Russell ihavethesugars) that I have a disease, if you've got diabetes, WE have a disease, literally an organ that does nothing so we have to work hard. Diseases don't always work on a linear path, there will be flare ups, bad times, unexplainable events and that's not your fault. I need to work hard to remember that a small group of awful blood sugars isn't actually going to shorten my life or add to any complications because they're not forever.
This blog post was supposed to be about trailing the Freestyle Libre and dealing with blood sugar anxiety but the most important thing I've actually learnt from this experience is that I am trying so hard and I can only do my best! How was I meant to know that I would need non-tattooed skin on my arms in the future for medical devices! The very thought makes me laugh. So I'll stick stuff in my legs and do my own experiments because that's all I can do.
Learning to live with any chronic illness is finding ways to fit it into your circumstances.
Fingers crossed the next sensor in my leg is a gooden!
I've been using the Freestyle Libre sensors for over a month now and it has seriously made me realise how ancient just 'checking' your blood sugar as that only shows you a snap shot of what your blood sugar is on at that one time. After only having the first sensor in my arm for a couple of days, I realised my blood sugar was NOT under control at all when I was under the impression that it was being a bit off but not too bad. My daily graph just looks like a wiggly snake, and above target most of the time (except for being constantly low all night).
Now it was upsetting to see that my diabetes wasn't under control when I was trying hard to keep it at bay, however now having this data, my diabetic nurse and myself could start fresh and hatch a plan. We put me on a new long acting insulin as we could clearly see (for whatever reason) my current long acting insulin was just not working. And even better, while wearing the sensor I could actively see if the new insulin was doing it's job and if I needed to adjust it. After a couple of bad days and deciding to give myself one more unit than my nurse told me to take, it was making a difference!
However I could not for the life of me figure out how to stop my meal time spikes, so after my amazing partner did some googling, we decided to give split bolusing a go. After a lot of experimenting, tears and shouting, we figured out what ~usually~ works for my body and certain meals. Again with the aid of the Libre sensor, I could actively see what my blood sugar was doing. I check my blood sugar 15 minutes before eating using the carb counting settings/calculator on the meter, you still need to test your blood sugar with a test strip (and you should as your sensor isn't always correct!) Then I give myself either 70% of my insulin, eat my meal 15 minutes later and then set a timer on the meter (a setting I find myself using all day, every day!) and give myself the 30% of my insulin half hour/hour later.
So it sounds like I've finally found myself something that's really helping me right? Unfortunately it's not that easy. While at the Libre free trail, we can across some road blocks. The main one: the sensor can't go into tattoos. That leaves me with a little strip on my right arm that the sensor can go into, and thats it. Freestyle only advise you wear the sensors on the back of your arm; just slightly round the back in an area where there is a little 'wiggle' so it's not going to go into muscle (that will hurt, a lot) but it can't go into real fatty areas. However, through the wonders of the diabetic community online I've seen that many people actually wear them in their legs. Fantastic! Problem sorted! ..not quite.
I'm going to put a disclaimer here: I am not advising you wear the sensors anywhere except your arms, I don't want people to waste sensors because they are expensive (£50 without vat for one).
After speaking to a really nice girl on Instagram (thank you Soph!), she told me where to insert it into my leg and I thought I need to try because in all honestly I've started to develop anxiety around not wearing one constantly. After half hour of having the application cup hovering over my leg because I was too scared to insert it into my leg (lol) I put it in and it didn't hurt. Long story short; that sensor didn't last a full two weeks as it was super inaccurate and also became quite painful after I knocked it a few times so I took it out.
I was sent a new sensor as that one failed (I didn't say it was in my legs, oops) and the only option I've got is to try a sensor in my leg again to see if that failed sensor was actually faulty. I've got a sensor in my arm right now, and when I applied this sensor it actually hurt a lot. I hadn't had a sensor in my arm for nearly a month but it was still sore, so I need to move it more but I have tattoos in the way, first world problems.
I will admit it's been a very bumpy ride with trailing the Freestyle Libre system, but it always with when you're trying new medical devices. However I will admit that I've become a bit obsessed with what my blood sugar is on, as I am desperate to have my diabetes under control. I have cataract surgeries looming in the next year as they are affecting my vision, I'm scared of retinopathy and just shortening my life. It's so hard to get your head around having such bad control of your blood sugar even though you're trying ridiculously hard. It's such a defeating feeling and it's hard to keep investing so much into a body that's not playing fair, but I was reminded by an awesome woman on Instagram (Libby Russell ihavethesugars) that I have a disease, if you've got diabetes, WE have a disease, literally an organ that does nothing so we have to work hard. Diseases don't always work on a linear path, there will be flare ups, bad times, unexplainable events and that's not your fault. I need to work hard to remember that a small group of awful blood sugars isn't actually going to shorten my life or add to any complications because they're not forever.
This blog post was supposed to be about trailing the Freestyle Libre and dealing with blood sugar anxiety but the most important thing I've actually learnt from this experience is that I am trying so hard and I can only do my best! How was I meant to know that I would need non-tattooed skin on my arms in the future for medical devices! The very thought makes me laugh. So I'll stick stuff in my legs and do my own experiments because that's all I can do.
Learning to live with any chronic illness is finding ways to fit it into your circumstances.
Fingers crossed the next sensor in my leg is a gooden!
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