I have now done two full days on the Minimed Paradigm Real Time CGM system, and boy has it been a roller coaster! In my previous post, I talked about how it was an eye opener to have constant access to information about your blood sugars at the touch of a button. It truly has been a 'journey' so far, but one that took me to new realms of obsession, even I thought impossible.
For me, the reason for my interest in CGM is two-fold. Firstly, I want to be able to see what is going on at times when I wouldn't normally test, such as during the night, in a film, or after a meal. They often tell you not to take a BG reading straight after a meal, because your sugars will always spike giving you an incorrect picture of the overall effect of your last decision - but, to have information about how quickly your sugars go up and how long after you inject it rises, can offer extremely useful tools which can aid in making informed decisions about ways to manage this disease in the future. Secondly, I would like the opportunity to do less blood tests. On some days, if an ill-informed onlooker saw how many times a day I test (15 is nothing out of the ordinary), they may conclude that this was a hobby of mine. It isn't.
At the end of the last post, I commented on how there seemed to be a degree of variation in the blood sugar readings and the sensor readings, but that this was likely to be because the sensor needed time to 'bed in' and formulate the correct algorithm. Well, today got a whole lot worse.
I woke up this morning and keenly pulled the pump up to my sleepy, drowsy eyes to see what was happening in this body of mine overnight. To my delight, there was a practically straight line staring back from the graph on the pump screen. very often in life, we like to see graphs which either climb, or descend. The crime line goes down, good work folks! Performance line goes up, perhaps I'll make bonus this year. On the pump, you really want to see the flattest line possible, like an ocean horizon or perfect spirit level. So to my delight, I woke up this morning to find a spirit level even the most respected architect would be proud of!
I calibrated the sensor with my blood sugar readings (which was still about 3mmol out) and went on my way to work, feeling very good indeed. That's when things got a little weird. About an hour after I arrived I checked the graph, which was starting to climb at a pretty speedy rate. The figure on the pump was telling me I was 12.2, and the little upward pointing arrow next to that, told me I was doing it quickly. I tested my sugar because I hadn't eaten and was a bit surprised at the jump and threatening arrow. My blood sugar reading, again surprisingly, told me I was 6mmol, after having been 7 when I woke up! Now I'm am no mathematician, but that tells me it was heading down, and I would imagine it had a little downward facing arrow next to it.
The weirdness and inaccurary continued from here. The distance between sensor and glucose readings got gradually further and further apart, as the blood glucose reading seemed to stay steady, while the sensor reading got as far as 8mmol away from the blood readings, and the arrow cloned itself so I had two threatening upward facing arrows, meaning my sugars are 'catapulting' themselves toward ketone-ville!
Eventually, I got so sick of staring at confusing figures, and having done 31 glucose tests in the 16 hours I was awake yesterday, I switched it off. I literally just turned it off and decided not to care for a bit.
Being the obsessive I am, it lasted abut 2 hours before I decided that some sort of graph was better than none at all. I also contacted my rep in the meantime to ask what I could have done wrong. Although I was confident that I hadn't done anything wrong, due to the nature of my job meaning I have very busy Wednesday's, I had to do my initial calibrations at funny times. For example, after a meal or when the pump wanted me to do one, but actually it looked as though my sugars were changing a little too quickly.
So I turned the sensor on again at around 2.30pm today. I calibrated it even though my sugars were a little high, because they had been a little high most of the day, so I figured that must count as a 'stable' trend.
Well, since then, I could not have asked for more precise, up to date and informative information! My sugar compared to sensor glucose readings for the past 6 hours have looked like this:
The figure on the left is the blood glucose reading, the one on the right is the sensor reading and the readings are around an hour apart
11.8 13.1
9.8 9.5
7.0 7.5
5.7 6.4
7.3 7.8
Bearing in mind that the sensor reading is always around 10-15 minutes behind the glucose reading, because the information is not taken directly from the blood, which is the most up to date information, I call that pretty precise! It is certainly precise enough to base decisions on, and to feel confident that it is at least giving you information based on what is really going on, rather than the lottery system from this morning!
It is still early days and because I don't yet 'trust' the sensor enough to 'go it alone', I am still doing as many (if not more) tests than before, but this afternoon has been the closest I have gotten to seeing why this tool could be so beneficial. I am hoping that by the time I come to the end of my trial, I will have gained enough confidence to go from testing every hour, or every time my 'sixth sense' kicks in to allow me just to do the two calibration tests I need to do every day, rather than the obsessive and in all honestly, tiresome testing I am doing right now.
Maybe the answer was in the age old cliche of 'turn it off and on again', maybe Bill Gates should copy write that phrase, seeing as it seems no matter how small then computer, it still obeys the rules. Maybe I was so keen to get the sensor going that I didn't calibrate at the best times, or didn't realise that my sugars were changing too rapidly for science to understand. I guess we'll see.
For now, I am just glad to see it's working. But nervous that this might mean I have to find the money to fund buying a CGM of my own.
Whatever happens, straight lines are a new hobby of mine. Here's hoping it stays that way.
Friday, 30 April 2010
Wednesday, 28 April 2010
The CGM begins!
After blogging on numerous occasions about the benefits and convenience of Continuous Glucose Monitoring (CGM) and after managing to secure a free 12 day trial with Medtronic's Minimed Paradigm Real Time system, the time has arrived for me to sample the world of CGM! The folks at Medtronic were kind enough to offer me a free trial, which I gladly accepted. I did try to get a free trial with Dexcom (the other CGM system which I feel is at the forefront of the market), but unfortunately they made me no such offer, so although my future blogging will hopefully give you an idea of what CGM can offer, it won't be a comprehensive comparison of the differences between the systems currently available. But here goes as far as the Medtronic system works....
I arrived excited and ready to go this morning, keen to get going on something I'd been avidly researching for months! I was met by the Medtronic rep who was kind enough to fit me in around my work pattern and had arrived nice and early to meet me. Thankfully my DSN was also there, which turned out to be a blessing as she often asked questions about the system which probably wouldn't have occurred to me. I'm sure she was asking for my benefit, so I didn't make any silly mistakes, but she hid it well under the guise of not knowing too much about it herself.
My initial impression of the equipment was that the whole sensor and tramsitter was smaller than I was expecting. It was around the size of a fifty pence piece, and although it is 'bulkier' than the infusion set for the pump, I didn't expect it to be quite as small as it was. The equipment to get the thing in though, was HUGE! It looked like some sort of industrial piston - and looked like it would be pretty painful to insert! In fact it didn't hurt at all. It felt a little like someone had flicked my stomach with their fingers, but I couldn't feel the needle at all, which is always a bonus as far as I'm concerned.
As for setting it up and inserting it, it's definitely more fiddly than putting the pump in. There are a number of tags and flaps you have to pull off, and in the right order, all the while being careful not to jolt the sensor too much, because apparently this can 'upset' the enzymes in the sensor, causing it fail. But I imagine that's just something you have to get used to. I remember when I put my first infusion in I was all fingers and thumbs, convinced that if I did anything wrong something drastic would happen! I'm pretty sure that after a few times doing it, you become a dab hand and the whole process is over in seconds!
Once the sensor is in, you need to wait around 15 minutes before attaching the transmitter (the bit which sends the results wirelessly to the pump),because the enzymes in the sensor need to become wet. I tried several times to attach the transmitter but every time I tried the sensor wouldn't 'flash', meaning it wasn't quite ready! The rep advised me this could mean I was dehydrated, so I had a drink of water and carried on trying until it worked. It actually took 2 and a half hours before the sensor was wet enough to start 'sensing' under the skin. I was surprised it took this long seeing as I was advised that 15 minutes normally does it, but still, I was doing my normal blood tests anyway so it wasn't really a big deal.
The first time I saw the light flash, I then pressed 'link to sensor' on the pump menu and got the ball rolling. After this point you have to wait two hours in order for the sensor to 'bed in'. When it first asks you for a reading, you have to do a blood test and enter it on the pump in order to calibrate the sensor with your blood glucose. This is so that the sensor can 'learn' about your sugar levels, and when there is a change, the calibrations should mean it is as exact as possible.
After the initial calibration, within no time at all I was receiving real time information about what my blood sugars were doing. At first it was excellent. My sensor glucose was 11.2 at one point while my blood glucose was 10.5. As the sensor reading is approximately 15 minutes behind the glucose reading, I was pretty happy with this result. It would certainly be precise enough to react accordingly, which is the whole point, right?
I have run into problems slightly later in the day, after I narrowly avoided a hypo earlier, thanks to the hypo alarm on the pump. The pump alarmed to let me know that I was 4.4mmol. I tested my sugars via blood and got a 4.7 reading. Close enough! However, I later re calibrated the sensor when my blood glucose was back up to 6. It was around 5 hours since my last calibration and I hadn't eaten, meaning it was a good time to calibrate again. I was warned that in the first 24 hours you get a few odd readings, because until the sensor has been calibrated a number of times, it won't be as precise.
The problem is, the sensor has been alarming for about 3 hours now and currently thinks I'm 2.2mmol! I have checked and double checked, and haven't gone below 5.6mmol so far. But, it could be because after avoiding the low and eating some fruit, my sugars were rising a little too quickly. It's not ideal to calibrate when your sugars are changing rapidly, so the sensor probably thinks I haven't recovered from the low yet. Really, it's just doing its job and seeing as it has only been calibrated twice, it is just going to take a little longer to get set up!
That being said, while it was good, it was fantastic to look at the pump and with the touch of a button, be able to see a reading, as well as trend information and a graph showing what my sugars had been up to for the last 3, 6, 12 or 24 hour period.
So far, apart from the current issue, I can definitely see the benefits of wearing a sensor. I will recalibrate in another couple of hours and hopefully the sensor and my body will begin to agree! I will post again in a couple of days to chart my progress and how I think it's going.
Over and out.
I arrived excited and ready to go this morning, keen to get going on something I'd been avidly researching for months! I was met by the Medtronic rep who was kind enough to fit me in around my work pattern and had arrived nice and early to meet me. Thankfully my DSN was also there, which turned out to be a blessing as she often asked questions about the system which probably wouldn't have occurred to me. I'm sure she was asking for my benefit, so I didn't make any silly mistakes, but she hid it well under the guise of not knowing too much about it herself.
My initial impression of the equipment was that the whole sensor and tramsitter was smaller than I was expecting. It was around the size of a fifty pence piece, and although it is 'bulkier' than the infusion set for the pump, I didn't expect it to be quite as small as it was. The equipment to get the thing in though, was HUGE! It looked like some sort of industrial piston - and looked like it would be pretty painful to insert! In fact it didn't hurt at all. It felt a little like someone had flicked my stomach with their fingers, but I couldn't feel the needle at all, which is always a bonus as far as I'm concerned.
As for setting it up and inserting it, it's definitely more fiddly than putting the pump in. There are a number of tags and flaps you have to pull off, and in the right order, all the while being careful not to jolt the sensor too much, because apparently this can 'upset' the enzymes in the sensor, causing it fail. But I imagine that's just something you have to get used to. I remember when I put my first infusion in I was all fingers and thumbs, convinced that if I did anything wrong something drastic would happen! I'm pretty sure that after a few times doing it, you become a dab hand and the whole process is over in seconds!
Once the sensor is in, you need to wait around 15 minutes before attaching the transmitter (the bit which sends the results wirelessly to the pump),because the enzymes in the sensor need to become wet. I tried several times to attach the transmitter but every time I tried the sensor wouldn't 'flash', meaning it wasn't quite ready! The rep advised me this could mean I was dehydrated, so I had a drink of water and carried on trying until it worked. It actually took 2 and a half hours before the sensor was wet enough to start 'sensing' under the skin. I was surprised it took this long seeing as I was advised that 15 minutes normally does it, but still, I was doing my normal blood tests anyway so it wasn't really a big deal.
The first time I saw the light flash, I then pressed 'link to sensor' on the pump menu and got the ball rolling. After this point you have to wait two hours in order for the sensor to 'bed in'. When it first asks you for a reading, you have to do a blood test and enter it on the pump in order to calibrate the sensor with your blood glucose. This is so that the sensor can 'learn' about your sugar levels, and when there is a change, the calibrations should mean it is as exact as possible.
After the initial calibration, within no time at all I was receiving real time information about what my blood sugars were doing. At first it was excellent. My sensor glucose was 11.2 at one point while my blood glucose was 10.5. As the sensor reading is approximately 15 minutes behind the glucose reading, I was pretty happy with this result. It would certainly be precise enough to react accordingly, which is the whole point, right?
I have run into problems slightly later in the day, after I narrowly avoided a hypo earlier, thanks to the hypo alarm on the pump. The pump alarmed to let me know that I was 4.4mmol. I tested my sugars via blood and got a 4.7 reading. Close enough! However, I later re calibrated the sensor when my blood glucose was back up to 6. It was around 5 hours since my last calibration and I hadn't eaten, meaning it was a good time to calibrate again. I was warned that in the first 24 hours you get a few odd readings, because until the sensor has been calibrated a number of times, it won't be as precise.
The problem is, the sensor has been alarming for about 3 hours now and currently thinks I'm 2.2mmol! I have checked and double checked, and haven't gone below 5.6mmol so far. But, it could be because after avoiding the low and eating some fruit, my sugars were rising a little too quickly. It's not ideal to calibrate when your sugars are changing rapidly, so the sensor probably thinks I haven't recovered from the low yet. Really, it's just doing its job and seeing as it has only been calibrated twice, it is just going to take a little longer to get set up!
That being said, while it was good, it was fantastic to look at the pump and with the touch of a button, be able to see a reading, as well as trend information and a graph showing what my sugars had been up to for the last 3, 6, 12 or 24 hour period.
So far, apart from the current issue, I can definitely see the benefits of wearing a sensor. I will recalibrate in another couple of hours and hopefully the sensor and my body will begin to agree! I will post again in a couple of days to chart my progress and how I think it's going.
Over and out.
Tuesday, 27 April 2010
Too much, too quickly
Ok, so about a month ago I decided to go on a detox to give myself a boost and kick start my system a little. As a sideline I was hoping that my newfound respect for all things green and natural would have a positive impact on the diabetes. So, I threw myself into a non-wheat, non-dairy, non-meat, non-fish, non-gluten, non-processed food, non-alcohol.... OK, the list goes on and on so I may as well stop there before you (and I) fall asleep! It was fundamentally non-everything except fruit and veg. Yum!
The instant effect was that for the ten days I was on it, my sugars acted like I wasn't even diabetic! I had fantastic skin, lost half a stone in weight, slept like a log and felt great. Never have I seen such good control with such little ease or felt so incredibly 'on top' of things. The problem was, there was no room for anything - no enjoyment, no eating out, no treats and no choice. It was so restrictive I started craving whole chunks of chicken. The bizarre thing is, I'm not even that keen on chicken! I was craving protein in the way I imagine a crack addict craves a hit! It wasn't pretty that's for sure! So, slowly but surely I crashed and burned on the detox and before I knew it I'd put on the half a stone I so proudly bragged about losing, my skin was back to normal, I was tired again and the biggest problem, my sugars were haywire. Haywire is an understatement.
I've gone from being in target 89% of the time (thanks to the pump and some hard work on my part), to my current which is 59% out of control. It's not the pumps fault, in fact, the way my sugars were so perfect during the detox shows that my basal levels are practically perfect. The problem was, messing around with my metabolism and changing all my rates so quickly, meant that my insulin needs were changing so quickly and drastically, that I had to pretty much start from the beginning when it came to adjusting the pump to react to my needs. I need to figure out all over again what level I need when and for some reason I need more insulin now than I did before the detox. I'm not sure why and maybe I'll never know, but the one thing I have realised is that you have to do things a little slower when you are diabetic. A non-diabetic would probably have needed to adjust things one step at a time, but a diabetic has to do things slowly enough to allow time for you to see where and when your new routine might be affecting your sugars. You need time to adjust your doses one at a time so that you can really 'know' what's going on.
So with the CGM trial starting tomorrow, and with a new understanding of how much I can demand from my body at once, the next couple of weeks will be all about making it up to my body and re-discovering that diabetes means doing things at a different pace!
I will keep posting about the CGM trial specifically as I have promised several of you that I will, but it will also be interesting to see what effect the CGM will have on figuring out what I need and when!
Thats it for now
The instant effect was that for the ten days I was on it, my sugars acted like I wasn't even diabetic! I had fantastic skin, lost half a stone in weight, slept like a log and felt great. Never have I seen such good control with such little ease or felt so incredibly 'on top' of things. The problem was, there was no room for anything - no enjoyment, no eating out, no treats and no choice. It was so restrictive I started craving whole chunks of chicken. The bizarre thing is, I'm not even that keen on chicken! I was craving protein in the way I imagine a crack addict craves a hit! It wasn't pretty that's for sure! So, slowly but surely I crashed and burned on the detox and before I knew it I'd put on the half a stone I so proudly bragged about losing, my skin was back to normal, I was tired again and the biggest problem, my sugars were haywire. Haywire is an understatement.
I've gone from being in target 89% of the time (thanks to the pump and some hard work on my part), to my current which is 59% out of control. It's not the pumps fault, in fact, the way my sugars were so perfect during the detox shows that my basal levels are practically perfect. The problem was, messing around with my metabolism and changing all my rates so quickly, meant that my insulin needs were changing so quickly and drastically, that I had to pretty much start from the beginning when it came to adjusting the pump to react to my needs. I need to figure out all over again what level I need when and for some reason I need more insulin now than I did before the detox. I'm not sure why and maybe I'll never know, but the one thing I have realised is that you have to do things a little slower when you are diabetic. A non-diabetic would probably have needed to adjust things one step at a time, but a diabetic has to do things slowly enough to allow time for you to see where and when your new routine might be affecting your sugars. You need time to adjust your doses one at a time so that you can really 'know' what's going on.
So with the CGM trial starting tomorrow, and with a new understanding of how much I can demand from my body at once, the next couple of weeks will be all about making it up to my body and re-discovering that diabetes means doing things at a different pace!
I will keep posting about the CGM trial specifically as I have promised several of you that I will, but it will also be interesting to see what effect the CGM will have on figuring out what I need and when!
Thats it for now
Sunday, 18 April 2010
CGM
About two months ago I wrote a post all about Continuous Glucose Monitoring (CGM), which is a way of monitoring your glucose levels 24/7 by wearing a small sensor in the skin which feeds information wirelessly to my pump. It then provides me with trend information about whether my sugars are stable, heading up or plummeting down. In theory, this should mean I can make better informed decisions about what action I need to take in order to avoid the highs and lows which can take you by surprise. Since embarking on life as a pump user, I have been increasingly interested in this, as for the first time in my life 'prefect' control is within reach. The reason I put the apostrophes around the word perfect, is that every diabetic knows there is no such thing, but there is something close enough which is achievable.
While the pump has become my new best friend, I have (and I have no idea why), had a very unstable couple of weeks. First, around two weeks ago, I rocketed into the twenties every day for about 3 days. I had to almost double my basal rates to see even the smallest improvement. I went from having predictable 4-7mmol sugars when I woke up, to mid teens one day, 3 the next and even a 17mmol - which was exactly the kind of number I thought I had put behind me when I joined the pump club! Then I started experiencing lows at strange times of day (no doubt because of the double basal rates - which I can see now were perhaps a little heavy handed!). In the last couple of days it has settled down somewhat, although I still hit 24.9mmol today after a carb counted lunch! I even had cheese and biscuits instead of sticky toffee pudding because the diabetes 'angel' who sits on one shoulder, managed to shout down the diabetes 'devil' who sits on the other!
The one thing which has come out of this episode, is that it would have been extremely helpful to see what was going on all the time, rather than the snapshots in time which the blood glucose monitor I currently use can offer. It is really hard to make decisions during the day when you have no idea what was going on overnight, or you have no idea whether the perfect 6mmol you just had, was sitting on an upward or downward trend. For example, if I had a low during the night, but didn't wake up, I will have a rebound during the day, so being wary of what I eat and how much I inject would be wise. But if I didn't wake up - how can I know this and therefore act on it? A frustrating situation I'm sure you will agree.
So, in the midst of my frustrations about my erratic and angry blood sugars, I contacted my rep from Medtronic who has agreed to offer me a trial on the Paradigm VEO Real Time CGM system. I have discussed this one in the past, as in my opinion, this one and the Dexcom 7+ are on a parr with one another in terms of the benefits they offer. As well as the benefits I previously raved about, Medtronic have managed to secure FDA approval for wearing the sensor for 6 days, making it even more tempting, seeing as the biggest benefit of the Dexcom 7+ was that the sensor could be worn for 7 days, while the Medtronic CGM only had FDA approval for 3 days.
One distinct benefit of the Medtronic CGM system is that it will feed information directly to my pump, rather than other systems, which require you to have a hand held receiver, to which the information from the sensor is fed. This means you can only be a matter of feet away from the receiver, otherwise the information feed will stop.
The only drawback I could see at the moment is that this is the CGM which reportedly 'flops' about on the surface as it is not fixed very well to the skin. This still freaks me out a bit as I'm not keen on the idea of catching it on things. That being said, I used to be freaked out by the idea of a pump - and now I would never look back. I plan on spending my forthcoming trial looking at ways and means of sticking the sensor to the skin a bit better, if I even need to. I may find that it seems perfectly fixed - we'll have to wait and see.
After looking at how much it benefits me, the one remaining decision will be about cost, while the Medtronic seems distinctly more affordable than others, it can still cost in the region of £180 per month for continuous use. By no means can I afford this, so unless I can get away with using the sensors for longer (which has been purported as extremely common by most users of the Medtronic system), it will have to be a now and then thing. For sure, having CGM as an option would have been a God-send during the last two weeks!
For the meantime, I will be very interested to see how well this benefits me and the benefits and drawbacks of the system, and will be keenly blogging about my experiences of using a CGM.
I will keep you posted and will include pictures, so that you can see what you make of it yourselves.
Over and out
Anna
While the pump has become my new best friend, I have (and I have no idea why), had a very unstable couple of weeks. First, around two weeks ago, I rocketed into the twenties every day for about 3 days. I had to almost double my basal rates to see even the smallest improvement. I went from having predictable 4-7mmol sugars when I woke up, to mid teens one day, 3 the next and even a 17mmol - which was exactly the kind of number I thought I had put behind me when I joined the pump club! Then I started experiencing lows at strange times of day (no doubt because of the double basal rates - which I can see now were perhaps a little heavy handed!). In the last couple of days it has settled down somewhat, although I still hit 24.9mmol today after a carb counted lunch! I even had cheese and biscuits instead of sticky toffee pudding because the diabetes 'angel' who sits on one shoulder, managed to shout down the diabetes 'devil' who sits on the other!
The one thing which has come out of this episode, is that it would have been extremely helpful to see what was going on all the time, rather than the snapshots in time which the blood glucose monitor I currently use can offer. It is really hard to make decisions during the day when you have no idea what was going on overnight, or you have no idea whether the perfect 6mmol you just had, was sitting on an upward or downward trend. For example, if I had a low during the night, but didn't wake up, I will have a rebound during the day, so being wary of what I eat and how much I inject would be wise. But if I didn't wake up - how can I know this and therefore act on it? A frustrating situation I'm sure you will agree.
So, in the midst of my frustrations about my erratic and angry blood sugars, I contacted my rep from Medtronic who has agreed to offer me a trial on the Paradigm VEO Real Time CGM system. I have discussed this one in the past, as in my opinion, this one and the Dexcom 7+ are on a parr with one another in terms of the benefits they offer. As well as the benefits I previously raved about, Medtronic have managed to secure FDA approval for wearing the sensor for 6 days, making it even more tempting, seeing as the biggest benefit of the Dexcom 7+ was that the sensor could be worn for 7 days, while the Medtronic CGM only had FDA approval for 3 days.
One distinct benefit of the Medtronic CGM system is that it will feed information directly to my pump, rather than other systems, which require you to have a hand held receiver, to which the information from the sensor is fed. This means you can only be a matter of feet away from the receiver, otherwise the information feed will stop.
The only drawback I could see at the moment is that this is the CGM which reportedly 'flops' about on the surface as it is not fixed very well to the skin. This still freaks me out a bit as I'm not keen on the idea of catching it on things. That being said, I used to be freaked out by the idea of a pump - and now I would never look back. I plan on spending my forthcoming trial looking at ways and means of sticking the sensor to the skin a bit better, if I even need to. I may find that it seems perfectly fixed - we'll have to wait and see.
After looking at how much it benefits me, the one remaining decision will be about cost, while the Medtronic seems distinctly more affordable than others, it can still cost in the region of £180 per month for continuous use. By no means can I afford this, so unless I can get away with using the sensors for longer (which has been purported as extremely common by most users of the Medtronic system), it will have to be a now and then thing. For sure, having CGM as an option would have been a God-send during the last two weeks!
For the meantime, I will be very interested to see how well this benefits me and the benefits and drawbacks of the system, and will be keenly blogging about my experiences of using a CGM.
I will keep you posted and will include pictures, so that you can see what you make of it yourselves.
Over and out
Anna
Saturday, 17 April 2010
In memory of Louis Austin - RIP
Diabetes treatment in 2010 has surpassed the treatment available for almost any other disease - FACT. We can monitor our glucose continuously, we can take tablets, we can use pumps, injections, exercise, eye surgery and even amptuations if it means saving our lives. The cold hard truth is that without diagnosis and treatment, diabetics will die. Had I been alive one hundred years ago, when diabetes was known about but only as a killer, because no treatment yet existed, I would have never made it passed the age of four. I would have been long gone for 23 years, just a memory to my parents now, who will forever remember me as the four year old girl they had to say goodbye to in the hospital bed that night. I would exist only in photos and memories. I would be an educational story, used to try and teach others about the devastation that diabetes can cause.
I often talk about the way I rely on insulin because I still find it incredible that even though I feel wonderful now, without insulin, I would have only hours before I would be in serious trouble. Without it, my body would begin to die and within days, if not hours, I could no longer be here. I simply can't survive without insulin. The thing is, in this day and age no-one needs to die from undiagnosed or untreated diabetes, right?
WRONG!
In July 2009, Louis Austin, an 8 year old school boy from Manchester, was complaining of devastating headaches, was vomitting, had lost almost 2 stone in weight over a matter of days, was hot, was restless and was tired beyond comprehension. He was taken to an out of hours Dr Surgery on Saturday, where he was misdiagnosed as having been struck by the Swine Flu. He was prescribed Tamiflu and was sent home.
By Sunday night, Louis Austin was no longer alive. He passed away that night, despite his parents having called an ambulance twice as well as contacting the out of hours Doctor service. According to the paramedic, he was 'not a priority'. In the midst of the swine flu craze, Louis Austin was failed by a number of people. Failed, is the only word for it.
It saddens me that a disease like diabetes still takes the lives of people who never even knew what was coming. It saddens me that those parents had to say goodbye to a son they never should have lost, and it saddens me that so little is still known about diabetes. It saddens me that any child who had lost that amount of weight, and was clearly showing all the signs of Diabetic Ketoacidosis, was misdiagnosed as having swine flu, because there happened to be an 'epidemic' around.
With a general election looming, and the promise of so many changes being spouted by over condfident politicians, I truly hope that more wil be done to educate about diabetes. To explain how incredibly dangerous a condition it is, no matter how good your control is. The fact remains that without treatment, diabetics cannot survive. Although the doctor now admits that she was wrong, and although this (hopefully) is a rare incident, it was one incident too many.
Even though diabetes is a life sentence, it is still better than a death sentence.
RIP Louis Austin.
I often talk about the way I rely on insulin because I still find it incredible that even though I feel wonderful now, without insulin, I would have only hours before I would be in serious trouble. Without it, my body would begin to die and within days, if not hours, I could no longer be here. I simply can't survive without insulin. The thing is, in this day and age no-one needs to die from undiagnosed or untreated diabetes, right?
WRONG!
In July 2009, Louis Austin, an 8 year old school boy from Manchester, was complaining of devastating headaches, was vomitting, had lost almost 2 stone in weight over a matter of days, was hot, was restless and was tired beyond comprehension. He was taken to an out of hours Dr Surgery on Saturday, where he was misdiagnosed as having been struck by the Swine Flu. He was prescribed Tamiflu and was sent home.
By Sunday night, Louis Austin was no longer alive. He passed away that night, despite his parents having called an ambulance twice as well as contacting the out of hours Doctor service. According to the paramedic, he was 'not a priority'. In the midst of the swine flu craze, Louis Austin was failed by a number of people. Failed, is the only word for it.
It saddens me that a disease like diabetes still takes the lives of people who never even knew what was coming. It saddens me that those parents had to say goodbye to a son they never should have lost, and it saddens me that so little is still known about diabetes. It saddens me that any child who had lost that amount of weight, and was clearly showing all the signs of Diabetic Ketoacidosis, was misdiagnosed as having swine flu, because there happened to be an 'epidemic' around.
With a general election looming, and the promise of so many changes being spouted by over condfident politicians, I truly hope that more wil be done to educate about diabetes. To explain how incredibly dangerous a condition it is, no matter how good your control is. The fact remains that without treatment, diabetics cannot survive. Although the doctor now admits that she was wrong, and although this (hopefully) is a rare incident, it was one incident too many.
Even though diabetes is a life sentence, it is still better than a death sentence.
RIP Louis Austin.
Wednesday, 14 April 2010
False hopes and paper dreams
Picture the scene...
I am a newly diagnosed type 1 diabetic. I've been told I will have to change the way I do pretty much everything. The experts tell me I will do OK if I keep my sugars under tight control, but I don't really know what that will take yet. I know that I will need to inject myself for the rest of my life on a daily basis. I will have to test my blood sugars every few hours I'm awake, and sometimes during the night. I know that if I don't keep good control, the list of things which could happen is almost endless. Will I meet someone who will understand why some days I won't be at my best? Can I do the job I always wanted to do? Can I eat out with friends? Will I have kids and live to see them grow up? I have so many questions.
Whether you are a newly diagnosed diabetic, or someone whose had it 30 years and just wishes it would cut you some slack. Sometimes, things just get too much. You want a way out, or even just a way to make it easier. A rope to cling on to, or even a straw.
So you do a little searching on the Internet.
"Cure diabetes"
That's what the advert reads.
"Reverse diabetes with this simple natural rememdy just discovered".
The website looks smart - it talks intelligently about all the natural remedies which can cure diabetes, in fact it talks about things I've never even heard of! Maybe it's worth a go? I've tried doing things the medicinal way, maybe herbal remedies are the way forward. Maybe the big wig companies who have the money to invest in this just don't because diabetes is a big money industry. At least if I'm still hooked on insulin, I'm giving them some money! I'll just take a look what it costs.
Oooh, it is a bit more expensive than I would have hoped. Plus I have to buy a whole load of pills. Hmm.
Now, don't get me wrong. I spend a lot of time trawling through the Internet looking for updates on stem cell research, on islet cell transplantation, on ways of using the most up to date technology to make my life a bit easier. I am also a big believer in supplements and alternative therapy. I believe our modern diets don't allow for as many combinations of weird and wonderful food types as it used to, and in some cases, beneficial supplements would never have feature in our diet originally, so we need to think outside the box. I believe the answer to diabetes could be a simple as an ingredient found in nature in a simple plant in Outer Mongolia. I have been thinking about acupuncture, I believe in foot massage, I am willing to entertain many ideas. I do believe that there are a multitude of ways to improve the condition and the prognosis, and not just by the conventional means. I try not to rule anything out.
BUT! And it's a big but - I get so frustrated by adverts which feature all over the Internet, claiming to reverse diabetes once and for all. They often word themselves extremely well giving them an air of credibility and believability. The truth is, there are people in labs all over the world, testing those simple plants from Outer Mongolia. There are those who claim hemp oil can make conditions better. And yes, for those people who are AT RISK of diabetes, perhaps due to weight or other lifestyle issues, there ARE ways of having an influence over your future. There are ways of making things easier on your body and avoiding type 2. But to claim that you can 'cure' diabetes using a product which probably hasn't even been through basic safety testing - is in my opinion, plain and simple fraud.
To make promises of taking away this condition, a condition which comes with no guarantees as to how your body will cope with it. One which will set you apart from others, and which no matter how well controlled you are, may well limit your life in some manner - is simply cruel.
No doubt aimed at those who are desperate or still don't understand the physical processes which took place when they were diagnosed. I for one know that my body doesn't do what it is supposed to and won't, for the indefinite future. I understand that the insulin producing beta cells in my pancreas were destroyed or permanently damaged by my very own body. I understand that any insulin I may produce is not enough to keep me alive and certainly not enough to keep my sugar levels in control.
To someone who is still daunted by the awful task of injecting every day or having to watch what they eat, the promise of 'herbal remedies' which will cure - not improve - but cure their diabetes, this promise must be tempting. I mean it must look so unbelievably good.
When I see those adverts I often wonder how many people have been convinced that this is the product that could change their life. How many have parted with money in the hope that maybe, in time, this remedy will free them of this disease.
I really hope there aren't too many. I hope that people haven't been ripped off. I hope they haven't parted with their own money. I hope they haven't waited in for the post to arrive. I hope they didn't peel back the lid of the bottle and peer over the rim with hope in their heart. I hope they didn't set their hopes and dreams on being cured of their sentence. And most of all, I hope it didn't hurt too much when they realised it was just another money maker. That was a long way to fall and I really hope it didn't hurt too much.
I am a newly diagnosed type 1 diabetic. I've been told I will have to change the way I do pretty much everything. The experts tell me I will do OK if I keep my sugars under tight control, but I don't really know what that will take yet. I know that I will need to inject myself for the rest of my life on a daily basis. I will have to test my blood sugars every few hours I'm awake, and sometimes during the night. I know that if I don't keep good control, the list of things which could happen is almost endless. Will I meet someone who will understand why some days I won't be at my best? Can I do the job I always wanted to do? Can I eat out with friends? Will I have kids and live to see them grow up? I have so many questions.
Whether you are a newly diagnosed diabetic, or someone whose had it 30 years and just wishes it would cut you some slack. Sometimes, things just get too much. You want a way out, or even just a way to make it easier. A rope to cling on to, or even a straw.
So you do a little searching on the Internet.
"Cure diabetes"
That's what the advert reads.
"Reverse diabetes with this simple natural rememdy just discovered".
The website looks smart - it talks intelligently about all the natural remedies which can cure diabetes, in fact it talks about things I've never even heard of! Maybe it's worth a go? I've tried doing things the medicinal way, maybe herbal remedies are the way forward. Maybe the big wig companies who have the money to invest in this just don't because diabetes is a big money industry. At least if I'm still hooked on insulin, I'm giving them some money! I'll just take a look what it costs.
Oooh, it is a bit more expensive than I would have hoped. Plus I have to buy a whole load of pills. Hmm.
Now, don't get me wrong. I spend a lot of time trawling through the Internet looking for updates on stem cell research, on islet cell transplantation, on ways of using the most up to date technology to make my life a bit easier. I am also a big believer in supplements and alternative therapy. I believe our modern diets don't allow for as many combinations of weird and wonderful food types as it used to, and in some cases, beneficial supplements would never have feature in our diet originally, so we need to think outside the box. I believe the answer to diabetes could be a simple as an ingredient found in nature in a simple plant in Outer Mongolia. I have been thinking about acupuncture, I believe in foot massage, I am willing to entertain many ideas. I do believe that there are a multitude of ways to improve the condition and the prognosis, and not just by the conventional means. I try not to rule anything out.
BUT! And it's a big but - I get so frustrated by adverts which feature all over the Internet, claiming to reverse diabetes once and for all. They often word themselves extremely well giving them an air of credibility and believability. The truth is, there are people in labs all over the world, testing those simple plants from Outer Mongolia. There are those who claim hemp oil can make conditions better. And yes, for those people who are AT RISK of diabetes, perhaps due to weight or other lifestyle issues, there ARE ways of having an influence over your future. There are ways of making things easier on your body and avoiding type 2. But to claim that you can 'cure' diabetes using a product which probably hasn't even been through basic safety testing - is in my opinion, plain and simple fraud.
To make promises of taking away this condition, a condition which comes with no guarantees as to how your body will cope with it. One which will set you apart from others, and which no matter how well controlled you are, may well limit your life in some manner - is simply cruel.
No doubt aimed at those who are desperate or still don't understand the physical processes which took place when they were diagnosed. I for one know that my body doesn't do what it is supposed to and won't, for the indefinite future. I understand that the insulin producing beta cells in my pancreas were destroyed or permanently damaged by my very own body. I understand that any insulin I may produce is not enough to keep me alive and certainly not enough to keep my sugar levels in control.
To someone who is still daunted by the awful task of injecting every day or having to watch what they eat, the promise of 'herbal remedies' which will cure - not improve - but cure their diabetes, this promise must be tempting. I mean it must look so unbelievably good.
When I see those adverts I often wonder how many people have been convinced that this is the product that could change their life. How many have parted with money in the hope that maybe, in time, this remedy will free them of this disease.
I really hope there aren't too many. I hope that people haven't been ripped off. I hope they haven't parted with their own money. I hope they haven't waited in for the post to arrive. I hope they didn't peel back the lid of the bottle and peer over the rim with hope in their heart. I hope they didn't set their hopes and dreams on being cured of their sentence. And most of all, I hope it didn't hurt too much when they realised it was just another money maker. That was a long way to fall and I really hope it didn't hurt too much.
Friday, 9 April 2010
Politically incorrect
The first time I was offered an insulin pump must have been around 4 years ago, in early 2006. I had been off work for 6 weeks, because I was going through a period of what the pros referred to a 're-diagnosis'. You see, the problem was, I was diagnosed at four years old. At such a tiny age, I had very few (indeed, if any!) memories of what life was like before I was 'taken over'. I lived out my child years being closely monitored by my parents, who, despite the challenges they faced, managed to keep my BS well in check.
During my teens, as I got too old to be 'monitored' and became more independent, the control started to twindle. I rarely did blood tests and if I could help it, avoided all appointments where I was constantly reminded about the gravity of the disease. So when I hit my twenties and wanted to think career, children and travel, I decided I needed to pay far more attention to what was going on. I emerged from my cave of ignorance and tried to change everything at once. I excercised every day, tested more often than anyone could ask, changed my diet and made enough appointments keep me busy for months. Only there was one problem; for the first time in my life, I really learned how much diabetes takes to control. Before I knew it, I was obsessively testing, achieving awful results and becoming so stressed, I had to go off work on long-term sick. In total, the six weeks I was off held more desperation and devastation than I had ever known. I would test first thing in the morning and staring back at me from the BS reader, the angry screen would shout "21.7mmol!". How could this be? I haven't even eaten yet and had only just woken up, and still I felt like I could drink non-stop from the kitchen tap for six hours, and would still need more water thereafter.
For the first time in my life I was terrified about my future, and couldn's see a point or reason to try. This was the first time I was offered a pump.
"Are you serious?"
I was at my lowest point in life. I felt trapped by a disease I didn't deserve, and had convinced myself that I wouldn't last long. Yes, as a diabetic, I COULDN'T last long. The thought of living out whatever short life I had, attached to a pump with wires trailing from places I didn't want to think about was to me, too much.
The next time I was offered a pump was about a year ago. I attended a course which was designed to provide diabetics with the tools they needed to be able to achieve better control. At the end of the course, although it was informative, it didn't seem to make a difference. My A1c was still 9.5% and I didn't feel any more in control.
All I had to do was say that I was interested. I was given a start date, an idea of how many other people would be on the course with me, and got to see what the pump looked like.
That was it. A year later I've been on it two months, can't believe some of the results I am getting, am happy, in control and shocked at how much more I am getting for the effort I put in.
The pump was offered to me with enthusiasm and an 'of course you can' attitude.
So why is it that while I read the comments on the diabetes UK website, so many people are being told flat out that they can't have a pump. "There is a two year waiting list", "Your control isn't bad enough". How can this be the way the world works in 2010! There are desperate mothers and fathers trying to find a way to extend their lives and make themselves healthier for the sake of their kids.
The insulin pump has been available in the UK since the turn of the century. How is it possible that people still have to 'prove' they are poorly enough controlled to warrant a pump. It seems to me that it comes down to a postcode lottery. Some people, like me, are able get a pump even after turning their nose up at it, while others, who are asking to go on it at every opportunity, are still refused on the basis of funding - surely the cost of dialysis, sight problems and amputations outweighs the cost of pump therapy?
It makes perfect sense to me now, why injections didn't work for me. By body needs changes in insulin between one hour and the next, as little as 0.1u/h. So during the night I need 1.4u between 9pm and midnight, then between midnight and 7 I need 1.3u/h. How I ever survived on one injection every 24 hours, where I injected 24 units and waited for it to slowly 'wear off', I will never understand.
By no means is my control perfect now, but the fact that 87% of my sugars are in single figures, where I only used to have sugars in target 13% of the time (yes I admit it, the control was awful!), shows that injections could never have worked. It baffles me that despite the overwhelming evidence that pump therapy benefits most diabetics (pump therapy is a lifestyle choice - that much is true), the NHS still struggle to find the funding for people who are willing to make that choice. I know it isn't the fault of the professionals, or at least that's what I hope, but as a diabetic and a pump user (and a happy one at that!), I feel a sense of guilt when people ask me how I got a pump. I feel embarrassed that I turned it down. But I guess I know that for me, it wasn't right four years ago. The effort I have put in to testing, monitoring and experimenting, means that in the midst of my 'breakdown', I simply couldn't have taken any more. My time was now.
I truly hope that things begin to change and that others will be able to go on the pump. After all, why should wanting to look after yourself be stopped by funding. To me, that is just politically incorrect!
During my teens, as I got too old to be 'monitored' and became more independent, the control started to twindle. I rarely did blood tests and if I could help it, avoided all appointments where I was constantly reminded about the gravity of the disease. So when I hit my twenties and wanted to think career, children and travel, I decided I needed to pay far more attention to what was going on. I emerged from my cave of ignorance and tried to change everything at once. I excercised every day, tested more often than anyone could ask, changed my diet and made enough appointments keep me busy for months. Only there was one problem; for the first time in my life, I really learned how much diabetes takes to control. Before I knew it, I was obsessively testing, achieving awful results and becoming so stressed, I had to go off work on long-term sick. In total, the six weeks I was off held more desperation and devastation than I had ever known. I would test first thing in the morning and staring back at me from the BS reader, the angry screen would shout "21.7mmol!". How could this be? I haven't even eaten yet and had only just woken up, and still I felt like I could drink non-stop from the kitchen tap for six hours, and would still need more water thereafter.
For the first time in my life I was terrified about my future, and couldn's see a point or reason to try. This was the first time I was offered a pump.
"Are you serious?"
I was at my lowest point in life. I felt trapped by a disease I didn't deserve, and had convinced myself that I wouldn't last long. Yes, as a diabetic, I COULDN'T last long. The thought of living out whatever short life I had, attached to a pump with wires trailing from places I didn't want to think about was to me, too much.
The next time I was offered a pump was about a year ago. I attended a course which was designed to provide diabetics with the tools they needed to be able to achieve better control. At the end of the course, although it was informative, it didn't seem to make a difference. My A1c was still 9.5% and I didn't feel any more in control.
All I had to do was say that I was interested. I was given a start date, an idea of how many other people would be on the course with me, and got to see what the pump looked like.
That was it. A year later I've been on it two months, can't believe some of the results I am getting, am happy, in control and shocked at how much more I am getting for the effort I put in.
The pump was offered to me with enthusiasm and an 'of course you can' attitude.
So why is it that while I read the comments on the diabetes UK website, so many people are being told flat out that they can't have a pump. "There is a two year waiting list", "Your control isn't bad enough". How can this be the way the world works in 2010! There are desperate mothers and fathers trying to find a way to extend their lives and make themselves healthier for the sake of their kids.
The insulin pump has been available in the UK since the turn of the century. How is it possible that people still have to 'prove' they are poorly enough controlled to warrant a pump. It seems to me that it comes down to a postcode lottery. Some people, like me, are able get a pump even after turning their nose up at it, while others, who are asking to go on it at every opportunity, are still refused on the basis of funding - surely the cost of dialysis, sight problems and amputations outweighs the cost of pump therapy?
It makes perfect sense to me now, why injections didn't work for me. By body needs changes in insulin between one hour and the next, as little as 0.1u/h. So during the night I need 1.4u between 9pm and midnight, then between midnight and 7 I need 1.3u/h. How I ever survived on one injection every 24 hours, where I injected 24 units and waited for it to slowly 'wear off', I will never understand.
By no means is my control perfect now, but the fact that 87% of my sugars are in single figures, where I only used to have sugars in target 13% of the time (yes I admit it, the control was awful!), shows that injections could never have worked. It baffles me that despite the overwhelming evidence that pump therapy benefits most diabetics (pump therapy is a lifestyle choice - that much is true), the NHS still struggle to find the funding for people who are willing to make that choice. I know it isn't the fault of the professionals, or at least that's what I hope, but as a diabetic and a pump user (and a happy one at that!), I feel a sense of guilt when people ask me how I got a pump. I feel embarrassed that I turned it down. But I guess I know that for me, it wasn't right four years ago. The effort I have put in to testing, monitoring and experimenting, means that in the midst of my 'breakdown', I simply couldn't have taken any more. My time was now.
I truly hope that things begin to change and that others will be able to go on the pump. After all, why should wanting to look after yourself be stopped by funding. To me, that is just politically incorrect!
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