I don't know about you, but having my HbA1c done is the worst part of having diabetes for me. I don't mean in terms of the long term threats that come with the disease, the ones which are always at the back of your mind, ready to leap out when you have high sugars for no apparent reason. I know that kidney failure, neuropathy and blindness are quite obviously worse than having an A1c done! BUT, in terms of testing sugars, counting carbs, injections, hypos, hypers - you know, the daily grind - THIS is the bit I hate.
I think this probably comes from when I lived in Germany as a child. I have very VERY vivid memories of going to the doctor and being quite literally pinned down while blood was taken from my arm. I am using the word taken on purpose - in my head I was never giving it, it was taken from me forcebly while I wriggled and squirmed away, causing a massive a scene as I could.
Now that I am a bit older and wiser, I understand that it is necessary. Not because it has any effect on my diabetes in the way that taking insulin does, but because it is one of the most effective ways to establish the general level of control I have been able to achieve over the past 4-6 weeks. Much like everyday blood testing, it doesn't really have any effect on your BMs. You could probably go weeks and weeks without doing a blood test and nothing drastic would happen. BUT, blood tests do INFORM you. You can work out trends, effects of food/exercise and so on, by testing your bloods and reacting to the result. The A1c is the same. The fact that I had elevated A1cs for years was one of the reasons I was able to get a pump so easily - I was a mass of diabetic complications waiting to happen!
Now, at the beginning of the pump trial I had an A1c 'taken' so that there would be a clear before and after comparison to show the impact of the pump on my BMs. My last A1c was a somewhat disappointing 9.5%. I say disappointing because I had been putting in more effort around that time than I ever had before! I had just finished the DAFNE course and was trying my hardest, but I still knew that my sugars weren't much better. I probably couldn't tell from my blood tests alone, as they were always bad in my cynical mind, but I'm talking about the completely intrinsic sixth sense us diabetics seem to have. Just as when you know you are low or you wake up in the morning and don't even need to do a test to know you've been edging too high during the night. I just knew - and I was right. I had gone down a whole 0.1% in my HbA1c before and after the DAFNE course. About as impressive as getting 5 minutes off at the end of the day. Technically it's an early finish, but won't really have any effect on your day.
So today was a big step for me. I bought one of those home self-testing A1c tests made by A Menarini. Its called Glucomen and is apparently very precise and takes only 48 hours for the result to come back to you after they receive your sample. And the results come back by email nonetheless - how times have changed!
That being said the absolute clincher for me is that I don't have to have a giant needle stuck in my arm while my breathing becomes more and more shallow, my sight begins to darken and I feel more and more like I'm about to pass out. It meant I didn't need to sit in the clinic for 15 minutes with a bottle of water while I try my hardest not to faint, and I didn't need to make it back to the car by taking 1 minutes journeys at a time, while my poor fiance is forced to carry a very girly handbag, because using my arm makes me think I'll faint. And most of all, I didn't have to lie down to an hour afterwards, because apparently having an A1c done makes me pass out from the 'trauma'.
You would think after 23 years I would have adjusted to this.
I haven't.
With the Glucomen, all I had to do was fill out a form, prick my finger as I normally would for a blood test and fill two little material 'dots' at the base of the form with my sample. And this time, it was one I gave willingly! I didn't have to go through any of the faffing, shallow breathing, fainting or annoying other people which normally comes hand in hand with having an A1c taken.
It's a winner in my eyes!
I now await the result, praying that the result will reflect the good work the pump has had on me in the last four months. Granted I had a bit of an upset last weekend, with the whole kinking in the cannula drama, but generally as I understand it, the A1c isn't as much a reflection of how high or low you have been, but of how the general control has been. And in general, unless I've calculated something wrong, my result are not normally higher than 15. So I've got everything crossed that it will show how much my life has improved since plugging in for the first time. I know that there is an overall improvement in my levels and quality of life, but really, one of the main things the NHS will look at when deciding whether to fund this, is how much my A1c has improved. The final 6 month A1c is due in around 2 months, so depending on how this one goes, I could be in for a really easy 2 months, or I could be in for a strict 2 months.
Either way, the pump has been worth it to me. I just hope there will be some 'evidence' to shout even louder about!
Watch this space!
Monday, 31 May 2010
Tuesday, 25 May 2010
One of the lucky ones
Every time this happens I feel guilty, as though it is my fault for being 'the way I am'.
Every time this happens, paranoia sets in about what people will think.
Every time this happens I worry what impression of diabetes I am giving people.
Every time this happens, I wonder whether I should have just gotten on with my day, regardless of how I felt.
'Every time this happens is,' is every time I take a sick day off work.
On a number of occasions I have heard people talk about how diabetics get ill more frequently than others. I used to believe this until someone corrected me. Yes I do still get ill, but my last bout of flu was almost 10 years ago, my last cold was about a year ago, and my last stomach bug was 2 years ago, almost to the month! Other than this, I don't seem to have a heightened sickness rate over the next person.
But when I do take off, it is usually diabetes. I strive on a daily basis to keep as tight a control on my condition as possible, whilst still allowing myself the freedom to live a little. Two nights ago I wanted some chocolate. Did I consider the effect it might have in my future if I get the insulin dose calculation wrong and end up with high sugars? Did I worry about how I might feel later? Did I worry that the specialist dietitian at the clinic would probably advise fruit instead?
Urrrrrr, NO!
I chowed down not only on a fantastically delicious and unregretable chocolate bar, but it happened to be the biggest bar of chocolate I could find at the store!!
It turns out that I did calculate it right and my sugars stayed fine. Score!
But the fact remains when things do go wrong and when my sugars get chaotic and I end up in the high 20s, I can't physically cope. On Sunday, after the Loophole and Pitfall discovery of mine (), I woke up on Monday with sugars all over the show, feeling emotional, physically drained and frankly, awful. If you've ever had sugars running in the high 20s for a while, you will know exactly what I mean.
So I called into work and spoke to my boss.
Every time something likes this happens (not that it's often - but it happens), I always feel this sense of guilt. Many diabetics talk about how guilt creeps its nasty way into their lives, but this is the time I feel it most most. For some people it sneaks in at snack times when they want a 'treat'. For others it is that they don't exercise enough. For some, it's that 'they didn't take better care of themselves when they were young', as though they were ever supposed to have enough foresight to just 'know' what was going to happen. No-one does, that's the problem.
For me, it is when I take a sick day off because I haven't got it right. Whatever 'right' is anyway! Time and again I worry what people will think. Time and again I kick myself, telling myself I should have this sorted by now. Time and again I think that somehow it affect what people will think about diabetes.
So why I put myself through the guilt trip I don't know. Perhaps it is the old do as I say and not as I do rule. Perhaps it's in my nature.
The funny thing is, despite worrying what people think and never cutting myself any slack, my employer clearly doesn't see it as a problem. I've had 2 days off since starting my job 6 months ago. Both were diabetes related, both were blood sugar related. But when I phone, I get nothing short of total concern for my welfare. I get told in no uncertain terms that I don't come back until I am well and fit. I get filled with a sense of compassion and understanding.
I know I am one of the lucky ones. I know that even though diabetes is there clear as day on the Disability Discrimination Act (DDA) in black and white, there are people struggling to convince their employers that they need a lunch break or that if they have to snack, they HAVE to snack.
I know that there are many things I can be grateful for when it comes to MY diabetes. For an ever-understanding group of friends, who appreciate why I don't drink much anymore and never hassle me about it. For the support of a fiance, parents and friends, who genuinely care about how my condition is. For a fantastic diabetes team who made it possible for me to join the pump club. But also I realise now for an employer who doesn't add to my self-flagellation every time it happens. For an employer who genuinely seems concerned that work shouldn't affect my diabetes. And for an employer who doesn't add to the guilt I already feel.
Maybe in time I can learn that my guilt is unfounded and that there is nothing to feel guilty about.
Perhaps in time I will taste my own medicine.
Every time this happens, paranoia sets in about what people will think.
Every time this happens I worry what impression of diabetes I am giving people.
Every time this happens, I wonder whether I should have just gotten on with my day, regardless of how I felt.
'Every time this happens is,' is every time I take a sick day off work.
On a number of occasions I have heard people talk about how diabetics get ill more frequently than others. I used to believe this until someone corrected me. Yes I do still get ill, but my last bout of flu was almost 10 years ago, my last cold was about a year ago, and my last stomach bug was 2 years ago, almost to the month! Other than this, I don't seem to have a heightened sickness rate over the next person.
But when I do take off, it is usually diabetes. I strive on a daily basis to keep as tight a control on my condition as possible, whilst still allowing myself the freedom to live a little. Two nights ago I wanted some chocolate. Did I consider the effect it might have in my future if I get the insulin dose calculation wrong and end up with high sugars? Did I worry about how I might feel later? Did I worry that the specialist dietitian at the clinic would probably advise fruit instead?
Urrrrrr, NO!
I chowed down not only on a fantastically delicious and unregretable chocolate bar, but it happened to be the biggest bar of chocolate I could find at the store!!
It turns out that I did calculate it right and my sugars stayed fine. Score!
But the fact remains when things do go wrong and when my sugars get chaotic and I end up in the high 20s, I can't physically cope. On Sunday, after the Loophole and Pitfall discovery of mine (), I woke up on Monday with sugars all over the show, feeling emotional, physically drained and frankly, awful. If you've ever had sugars running in the high 20s for a while, you will know exactly what I mean.
So I called into work and spoke to my boss.
Every time something likes this happens (not that it's often - but it happens), I always feel this sense of guilt. Many diabetics talk about how guilt creeps its nasty way into their lives, but this is the time I feel it most most. For some people it sneaks in at snack times when they want a 'treat'. For others it is that they don't exercise enough. For some, it's that 'they didn't take better care of themselves when they were young', as though they were ever supposed to have enough foresight to just 'know' what was going to happen. No-one does, that's the problem.
For me, it is when I take a sick day off because I haven't got it right. Whatever 'right' is anyway! Time and again I worry what people will think. Time and again I kick myself, telling myself I should have this sorted by now. Time and again I think that somehow it affect what people will think about diabetes.
So why I put myself through the guilt trip I don't know. Perhaps it is the old do as I say and not as I do rule. Perhaps it's in my nature.
The funny thing is, despite worrying what people think and never cutting myself any slack, my employer clearly doesn't see it as a problem. I've had 2 days off since starting my job 6 months ago. Both were diabetes related, both were blood sugar related. But when I phone, I get nothing short of total concern for my welfare. I get told in no uncertain terms that I don't come back until I am well and fit. I get filled with a sense of compassion and understanding.
I know I am one of the lucky ones. I know that even though diabetes is there clear as day on the Disability Discrimination Act (DDA) in black and white, there are people struggling to convince their employers that they need a lunch break or that if they have to snack, they HAVE to snack.
I know that there are many things I can be grateful for when it comes to MY diabetes. For an ever-understanding group of friends, who appreciate why I don't drink much anymore and never hassle me about it. For the support of a fiance, parents and friends, who genuinely care about how my condition is. For a fantastic diabetes team who made it possible for me to join the pump club. But also I realise now for an employer who doesn't add to my self-flagellation every time it happens. For an employer who genuinely seems concerned that work shouldn't affect my diabetes. And for an employer who doesn't add to the guilt I already feel.
Maybe in time I can learn that my guilt is unfounded and that there is nothing to feel guilty about.
Perhaps in time I will taste my own medicine.
Loopholes and pitfalls!
There are many benefits to life on the insulin pump. I could reel off five or six reasons without even putting effort in! There are no injections, decent levels are much easier to achieve, it calculates the dose you need to take for each meal, it calculates the correction dose you need, you can 'inject' in public without being stared at like you are stood buck naked in the middle of town! The list goes on.
However, much in the way that injections have their pitfalls, there are also 'lessons' you have to learn about the pump, which can take you by surprise when they happen to you and which you really need to be aware of!
When you are on the injection basal bolus system you usually take 4 or 5 injections a day, encompassing one or two slow acting injections which release insulin over 24 hours and fast acting insulin injections before each main meal. This means you should always have some insulin in your system.
Diabetic Ketoacidosis (DKA) occurs when there is too little or no insulin in the blood, which means in turn that no glucose can enter the muscles. If this is continued for a while, in the space of a few hours a diabetic can become what is called ketotic, meaning that the body begins to break down muscle for energy and produces acidic ketones as a result.
DKA is perhaps one of the most immediately threatening complications for diabetics, due to the fact that if it is not treated in time can lead to coma and even death.
If diabetics take their insulin there should not normally be a risk of DKA, because even 'some' insulin in the blood should stop the likelihood of DKA developing.
However, when you are on a pump, you don't receive any long acting insulin, as the pump releases fast acting over 24 hours rather than in fits and spurts, as with injections. This should mean that you also have a constant supply of insulin.
But as I found out this weekend, that's not always the case!
On Sunday I was due for a site change. No big deal, I'm a pretty dab hand at this now. I prepared a new site and used the Quicksert inserter to get the new one fixed. After about 3 hours I was started to feel a bit weird. High weird. If you're diabetic, you will know exactly what I mean. Tired, grotty, thirsty. The usual suspects.
I tested my sugars and they were a pretty whopping 23.4mmol. Not a nice number to see screaming back at you from your glucose meter.
So I took a correction dose and pondered what I had done wrong. Or what life had thrown in the mix today. Perhaps that is a better expression, seeing as I refuse to accept that I'm doing something wrong, seeing as 'wrong' would suggest it's my fault.
Diabetes is nobodies fault.
Anyway, I tested again an hour later and I was 24.9mmol! Brilliant, not only have I not come down, I've actually gone up - despite a 5 unit correction dose!
I decided to test my ketones as I was starting to feel a little queasy and completely wiped. Two very good indicators I may have had ketones.
So I whipped out my ketone tester and did a test.
0.4 ketones.
OK, so 0.4 isn't really much to write home about, but considering I never run higher than 0.1 with my usual readings at 0.0, I had enough justification to pull my pump set and try again.
As I pulled it out, I noticed a very tiny 'kink' in the subcutaneous needle. This meant that I wasn't receiving the insulin I was programming in, because the damn tubing was blocked at the needle end! The end I can't see! I have no idea how it happened or if it has happened before, but it was enough to remind me how close to 'trouble' every diabetic is.
Within 4 hours of not having insulin in my system my ketones had begun to creep up, my high was well and truly having a party without my permission and I was feeling quite frankly, crap!
I remedied the problem without too much hassle, by simply connecting a new set and dosing a whole load of insulin. But the ketones still freak me out, even when it is resolved and the numbers were never that high to begin with!
Before I went on the pump, I never had ketones and I've had them twice since being on the pump. I won't go in to the other time, but it was something to do with fiddling with the site during my sleep and unclicking the tubing from the cannula!
I guess it is one of the drawbacks and something I just need to be aware of. And I guess maybe it's the reason a pump isn't offered to some people until they are truly ready to monitor it closely. Because even those few hours without insulin could cause someone to get themselves into a fair bit of bother if they hadn't realised there was something wrong with the set, and changed it asap.
I guess it is something 'bad' about the pump. I never thought I would say that, and I would never want anyone to decide against it based on something they read, but I was always going to be honest about my experiences, and this something to know!
However, much in the way that injections have their pitfalls, there are also 'lessons' you have to learn about the pump, which can take you by surprise when they happen to you and which you really need to be aware of!
When you are on the injection basal bolus system you usually take 4 or 5 injections a day, encompassing one or two slow acting injections which release insulin over 24 hours and fast acting insulin injections before each main meal. This means you should always have some insulin in your system.
Diabetic Ketoacidosis (DKA) occurs when there is too little or no insulin in the blood, which means in turn that no glucose can enter the muscles. If this is continued for a while, in the space of a few hours a diabetic can become what is called ketotic, meaning that the body begins to break down muscle for energy and produces acidic ketones as a result.
DKA is perhaps one of the most immediately threatening complications for diabetics, due to the fact that if it is not treated in time can lead to coma and even death.
If diabetics take their insulin there should not normally be a risk of DKA, because even 'some' insulin in the blood should stop the likelihood of DKA developing.
However, when you are on a pump, you don't receive any long acting insulin, as the pump releases fast acting over 24 hours rather than in fits and spurts, as with injections. This should mean that you also have a constant supply of insulin.
But as I found out this weekend, that's not always the case!
On Sunday I was due for a site change. No big deal, I'm a pretty dab hand at this now. I prepared a new site and used the Quicksert inserter to get the new one fixed. After about 3 hours I was started to feel a bit weird. High weird. If you're diabetic, you will know exactly what I mean. Tired, grotty, thirsty. The usual suspects.
I tested my sugars and they were a pretty whopping 23.4mmol. Not a nice number to see screaming back at you from your glucose meter.
So I took a correction dose and pondered what I had done wrong. Or what life had thrown in the mix today. Perhaps that is a better expression, seeing as I refuse to accept that I'm doing something wrong, seeing as 'wrong' would suggest it's my fault.
Diabetes is nobodies fault.
Anyway, I tested again an hour later and I was 24.9mmol! Brilliant, not only have I not come down, I've actually gone up - despite a 5 unit correction dose!
I decided to test my ketones as I was starting to feel a little queasy and completely wiped. Two very good indicators I may have had ketones.
So I whipped out my ketone tester and did a test.
0.4 ketones.
OK, so 0.4 isn't really much to write home about, but considering I never run higher than 0.1 with my usual readings at 0.0, I had enough justification to pull my pump set and try again.
As I pulled it out, I noticed a very tiny 'kink' in the subcutaneous needle. This meant that I wasn't receiving the insulin I was programming in, because the damn tubing was blocked at the needle end! The end I can't see! I have no idea how it happened or if it has happened before, but it was enough to remind me how close to 'trouble' every diabetic is.
Within 4 hours of not having insulin in my system my ketones had begun to creep up, my high was well and truly having a party without my permission and I was feeling quite frankly, crap!
I remedied the problem without too much hassle, by simply connecting a new set and dosing a whole load of insulin. But the ketones still freak me out, even when it is resolved and the numbers were never that high to begin with!
Before I went on the pump, I never had ketones and I've had them twice since being on the pump. I won't go in to the other time, but it was something to do with fiddling with the site during my sleep and unclicking the tubing from the cannula!
I guess it is one of the drawbacks and something I just need to be aware of. And I guess maybe it's the reason a pump isn't offered to some people until they are truly ready to monitor it closely. Because even those few hours without insulin could cause someone to get themselves into a fair bit of bother if they hadn't realised there was something wrong with the set, and changed it asap.
I guess it is something 'bad' about the pump. I never thought I would say that, and I would never want anyone to decide against it based on something they read, but I was always going to be honest about my experiences, and this something to know!
Monday, 24 May 2010
Jobs and Discrimination
There are unfortunately many restrictions for diabetics wishing to enter certain types of career. Air traffic controller, pilot, most forces jobs, bus drivers, long distance drivers and some emergency response services.
This issue is a constant source of arguments, not just between diabetics and those making the decisions, but also it would seem, between diabetics themselves. Diabetes UK recently posted a comment on the Facebook site, to attempt to dispel myths about restrictions on jobs. The responses started arriving thick and fast, and within one hour there were 46 posts and counting.
Most people argued that with diabetes you are not able to lead a normal life. That the fundamental nature of diabetes itself, means that no diabetic will ever truly lead a normal life. Most people agreed that it was unfair that diabetics are subject to a 'blanket ban' on careers such as those named above, and that this should perhaps be done on a case by case basis instead.
Perhaps controversially, I have to disagree.
The careers we are talking about aren't 'work in a bank' or 'be a teacher'. The jobs we are talking about are 'land planes', 'handle weapons', 'engage in battle'. Can you see the difference I am trying to get to?
I happen to have extremely good hypo awareness, and for that I am grateful. It means I don't have to worry that if my sugars aren't running high enough, I may get caught out and be found in a heap. I don't have to worry that without even knowing it, I could easily become endangered if I lose consciousness and be at the mercy of wherever I am or, or whoever I'm with.
That being said, I (and every other diabetic), don't actually get 'hypo' symptoms, until they are already hypo. That's because your body responds to the fact that your sugars are too low. It can't do that until you really ARE low. Fact.
Once you are low, you absolutely have to stop what you are doing then and there. You have to treat the hypo immediately, and take at least 10 minutes to start feeling better. After this point, it can take anything up to an hour for you to regain your full mental and physical capabilities.
So how comfortable would you feel being under fire in a foreign country, immersed in battle with a hostile enemy who would happily hold a gun to your head and pull that trigger, hypo or no hypo, for the sake of their war? Would you be happy to be with someone who is having a hypo, while carrying a weapon, knowing that when some diabetics get low they get violent, and do things they not only don't understand, but that they don't remember? How comfortable would you be, sat in a plane, your life in the hands of someone who experienced a low 10 minutes ago and who thinks they 'are fine' to get back to the job?
I for one, would not want to be led by, or want to lead anyone if I was in that situation and was having a low. I don't get violent, I don't get angry, i don't get confused and I don't forget what I've done. But I do get clumsy, I do get weak, I need to be able to rest and I need time to recover. With most of the jobs diabetics (particularly type 1) are excluded from, there are safety issues at hand. Safety of not only themselves, but of people they work or engage with. Can the bus company afford to have someone on the staff, who may at some point go low and need to stop for 45 minutes with a bus load of people who will either have to sit there and wait or leave? Can the army afford to have someone there who will need to stop whenever their sugars get low, and who probably shouldn't be carrying a weapon? is there time to test when you are trying to evacuate children from somewhere you think a bomb may be going off?
I know that as a diabetic I should probably be fighting with the others who think it's unfair. And I know that there are few little boys and girls in this world who didn't watch Top Gun and hope that one day they would be the World's next Maverick. But the fact is, I can't get on board with the fact that it is discriminatory when it is also common sense. We're not out there lynching diabetics, or banning them from mixing with others. I'm not afraid of telling anyone I am diabetic because I believe I may be ostracized or attacked. But I do think it is common sense that anyone who suffers from diabetes - more specifically - hypos, should not be able to do certain jobs.
Diabetics talk about how scary and debilitating hypos can be - I don't think I would be comfortable being debilitated while trying to do any of the jobs I'm banned from, and I believe that is why these decision are made. It's nothing personal, it's reasonable. It may not feel fair, it may not feel right, it may have changed your plans. But it does make sense. To me anyway
This issue is a constant source of arguments, not just between diabetics and those making the decisions, but also it would seem, between diabetics themselves. Diabetes UK recently posted a comment on the Facebook site, to attempt to dispel myths about restrictions on jobs. The responses started arriving thick and fast, and within one hour there were 46 posts and counting.
Most people argued that with diabetes you are not able to lead a normal life. That the fundamental nature of diabetes itself, means that no diabetic will ever truly lead a normal life. Most people agreed that it was unfair that diabetics are subject to a 'blanket ban' on careers such as those named above, and that this should perhaps be done on a case by case basis instead.
Perhaps controversially, I have to disagree.
The careers we are talking about aren't 'work in a bank' or 'be a teacher'. The jobs we are talking about are 'land planes', 'handle weapons', 'engage in battle'. Can you see the difference I am trying to get to?
I happen to have extremely good hypo awareness, and for that I am grateful. It means I don't have to worry that if my sugars aren't running high enough, I may get caught out and be found in a heap. I don't have to worry that without even knowing it, I could easily become endangered if I lose consciousness and be at the mercy of wherever I am or, or whoever I'm with.
That being said, I (and every other diabetic), don't actually get 'hypo' symptoms, until they are already hypo. That's because your body responds to the fact that your sugars are too low. It can't do that until you really ARE low. Fact.
Once you are low, you absolutely have to stop what you are doing then and there. You have to treat the hypo immediately, and take at least 10 minutes to start feeling better. After this point, it can take anything up to an hour for you to regain your full mental and physical capabilities.
So how comfortable would you feel being under fire in a foreign country, immersed in battle with a hostile enemy who would happily hold a gun to your head and pull that trigger, hypo or no hypo, for the sake of their war? Would you be happy to be with someone who is having a hypo, while carrying a weapon, knowing that when some diabetics get low they get violent, and do things they not only don't understand, but that they don't remember? How comfortable would you be, sat in a plane, your life in the hands of someone who experienced a low 10 minutes ago and who thinks they 'are fine' to get back to the job?
I for one, would not want to be led by, or want to lead anyone if I was in that situation and was having a low. I don't get violent, I don't get angry, i don't get confused and I don't forget what I've done. But I do get clumsy, I do get weak, I need to be able to rest and I need time to recover. With most of the jobs diabetics (particularly type 1) are excluded from, there are safety issues at hand. Safety of not only themselves, but of people they work or engage with. Can the bus company afford to have someone on the staff, who may at some point go low and need to stop for 45 minutes with a bus load of people who will either have to sit there and wait or leave? Can the army afford to have someone there who will need to stop whenever their sugars get low, and who probably shouldn't be carrying a weapon? is there time to test when you are trying to evacuate children from somewhere you think a bomb may be going off?
I know that as a diabetic I should probably be fighting with the others who think it's unfair. And I know that there are few little boys and girls in this world who didn't watch Top Gun and hope that one day they would be the World's next Maverick. But the fact is, I can't get on board with the fact that it is discriminatory when it is also common sense. We're not out there lynching diabetics, or banning them from mixing with others. I'm not afraid of telling anyone I am diabetic because I believe I may be ostracized or attacked. But I do think it is common sense that anyone who suffers from diabetes - more specifically - hypos, should not be able to do certain jobs.
Diabetics talk about how scary and debilitating hypos can be - I don't think I would be comfortable being debilitated while trying to do any of the jobs I'm banned from, and I believe that is why these decision are made. It's nothing personal, it's reasonable. It may not feel fair, it may not feel right, it may have changed your plans. But it does make sense. To me anyway
Saturday, 22 May 2010
Looking back at the CGM Journey
When i embarked on my pump journey four months ago I was nervous, excited, openly impatient and if I'm honest, sceptical. I was pretty sure, after years of evidence to suggest I was right - that the pump wouldn't make any difference. I'd tried everything I could think of to manage this condition better than the poor attempt I had so far managed. I had tried exercise, diets, insulin regimes varying from two a day to five or six a day, I'd tried different types of insulin, I'd even thought about accupuntuce and massage to improve the condition - nothing had worked. The perfect mixture I needed was totally absent - leaving with with sugars in the 20s more often than I care to recall. So even though I had spent hours doing research about the pump and even though the blogs, articles and websites I'd read sang the praises of pumps, I just wasn't convinced. Why would I be? Experience had taught me that diabetes was NOT managable, contrary to the claims of so many others out there.
So when I started waking up with sugars of 4-6mmol and started staying there almost all morning, I was thrilled. Writing each post about the newfound hope I had discovered was like a breath of fresh air. I used to spend my days frightened and angry, for the first time in my life, I felt excited and proud of the fact I felt more in control.
CGM was something I had been interested in long before I started on the pump. The thought that you could monitor your sugars constantly and that this information would feed straight through to the pump was to me, the closest thing to a cure you could find. I spent a lot of time reading blogs from our diabetic friends in the US because there, as long as you have insurance you can apply for CGM at no extra cost. In the UK, it comes with a price tag and a heavy one at that! For the Dexcom 7+ system, it costs around £1500 for the starter kit, receiver and a handful of sensors to get you going. The sensors are then around the £250 mark for 4 sensors. For the Medtronic which I was able to trial, it costs around £450 for the full strater kit along with ten sensors, provided you buy the CGM at the same time the pump is purchased. If you buy it at a later date, it costs £750 with ten sensors. A box of 4 sensors is then £160 and this will last one month.
One of the clinchers for me, was whether or not the sensors could be worn for longer than the 6 days Medtronic state it can be worn for. I had read online about people getting two weeks out of them. This would in effect lower the cost of the sensors to £20 per week. Now £80 a month is still a lot, but worth it don't you think?
Well, after a two week free trial, I remain completely torn about the potentially invaluable information at my fingertips. From the outset, you are told that you should use it for the purpose of seeing 'the trend' your sugars are displaying, rather than the specific number. OK, that's great and all, but if the CGM tells me I am stable at 6, when I am actually stable at 13, the implications of that for a diabetic are huge and frankly, it's about as useful as a snow jacket in summer. I am being a little dramatic here, as generally the CGM did agree with the BG reading, but there were times when it was 3 or 4 mmol out, which is enough to leave you concerned.
I also found that contrary to people claiming to wear their sensor for 2 weeks, I never made it past 7 days. The first sensor died after just 7 days. I tried time and time again to convince my pump that it was a new sensor, but after about 6 hours of trying to convince it so, it gave up the ghost all together. The second sensor made it to 8 days, but this is still a far cry from the 14 days people claim. I guess the fact is it states six days on the tin, so that's what it does. Seems fair!
That being said, there were benefits - and huge ones at that. I was able to see what was going on overnight, which was a huge bugbear for me as I used to wake up during the night to test, but that the snap shot you see tells you nothing. I could be 12 when I go to bed, 8 during the night and 9 in the morning. But what was the trend overnight? How can I possibly know without waking myself up 3 or 4 times. During the night I would find it most useful, as it was when I was most stable and my blood sugar would match the sensor sugar almost down to 0.1 of a mmol. Great! This is where CGM becomes really invaluable, and had I had longer to get used to using it, inserting it and figuring out where is most comfortable and how to interpret the results most effectively, I would have no doubt that I would be sold.
I guess for me the biggest issue for this system is that it comes down to cost. I would be happy to wear the sensor (sore skin or no sore skin) if I wasn't having to shell out £40 per week for it. When I did wear the sensor for just 6 days, it left almost no marks (just as the cannulas do) and it did supply me with some extremely valuable information. But unfotunately I am not made of money, and as invaluable as it is, I just cannot justify wearing it at the moment. If it were cheaper, I would be at the front of the line!
My advice? It is useful, offers knowledge you could not previously have known, and for those with the finances it will benefit your life, but anyone who cannot afford it, will just have to wait in line for the NHS to catch up with what the rest of us know.
So when I started waking up with sugars of 4-6mmol and started staying there almost all morning, I was thrilled. Writing each post about the newfound hope I had discovered was like a breath of fresh air. I used to spend my days frightened and angry, for the first time in my life, I felt excited and proud of the fact I felt more in control.
CGM was something I had been interested in long before I started on the pump. The thought that you could monitor your sugars constantly and that this information would feed straight through to the pump was to me, the closest thing to a cure you could find. I spent a lot of time reading blogs from our diabetic friends in the US because there, as long as you have insurance you can apply for CGM at no extra cost. In the UK, it comes with a price tag and a heavy one at that! For the Dexcom 7+ system, it costs around £1500 for the starter kit, receiver and a handful of sensors to get you going. The sensors are then around the £250 mark for 4 sensors. For the Medtronic which I was able to trial, it costs around £450 for the full strater kit along with ten sensors, provided you buy the CGM at the same time the pump is purchased. If you buy it at a later date, it costs £750 with ten sensors. A box of 4 sensors is then £160 and this will last one month.
One of the clinchers for me, was whether or not the sensors could be worn for longer than the 6 days Medtronic state it can be worn for. I had read online about people getting two weeks out of them. This would in effect lower the cost of the sensors to £20 per week. Now £80 a month is still a lot, but worth it don't you think?
Well, after a two week free trial, I remain completely torn about the potentially invaluable information at my fingertips. From the outset, you are told that you should use it for the purpose of seeing 'the trend' your sugars are displaying, rather than the specific number. OK, that's great and all, but if the CGM tells me I am stable at 6, when I am actually stable at 13, the implications of that for a diabetic are huge and frankly, it's about as useful as a snow jacket in summer. I am being a little dramatic here, as generally the CGM did agree with the BG reading, but there were times when it was 3 or 4 mmol out, which is enough to leave you concerned.
I also found that contrary to people claiming to wear their sensor for 2 weeks, I never made it past 7 days. The first sensor died after just 7 days. I tried time and time again to convince my pump that it was a new sensor, but after about 6 hours of trying to convince it so, it gave up the ghost all together. The second sensor made it to 8 days, but this is still a far cry from the 14 days people claim. I guess the fact is it states six days on the tin, so that's what it does. Seems fair!
That being said, there were benefits - and huge ones at that. I was able to see what was going on overnight, which was a huge bugbear for me as I used to wake up during the night to test, but that the snap shot you see tells you nothing. I could be 12 when I go to bed, 8 during the night and 9 in the morning. But what was the trend overnight? How can I possibly know without waking myself up 3 or 4 times. During the night I would find it most useful, as it was when I was most stable and my blood sugar would match the sensor sugar almost down to 0.1 of a mmol. Great! This is where CGM becomes really invaluable, and had I had longer to get used to using it, inserting it and figuring out where is most comfortable and how to interpret the results most effectively, I would have no doubt that I would be sold.
I guess for me the biggest issue for this system is that it comes down to cost. I would be happy to wear the sensor (sore skin or no sore skin) if I wasn't having to shell out £40 per week for it. When I did wear the sensor for just 6 days, it left almost no marks (just as the cannulas do) and it did supply me with some extremely valuable information. But unfotunately I am not made of money, and as invaluable as it is, I just cannot justify wearing it at the moment. If it were cheaper, I would be at the front of the line!
I would recommend anyone have a go with a trial. It may be that you instantly expereince it as useful and valuable for you. it may be that it suits you down to a tee. It is always worth a shot and I saw enough positives to convince me it would be worth it.
It may come down to the fact that perhaps I calibrated when I was going up or down too quickly. Medtronic are the first to state that this can skew future results, and are always at hand to offer advice and guidance. Having only used 2 sensors, it is likely that I have yet to learn the best time to calibrate it. It took me weeks to work out which sites were most comfortable to wear the cannulas and it has taken me 24 years to learn where is less painful to do blood tests.My advice? It is useful, offers knowledge you could not previously have known, and for those with the finances it will benefit your life, but anyone who cannot afford it, will just have to wait in line for the NHS to catch up with what the rest of us know.
Sunday, 16 May 2010
Running up those sugars
Exercise should be part of every diabetic's day. Fact. Benefits include everything from improved circulation and weight management to benefits for the heart and improved metbolism, meaning the body will use the insulin better.
The pros say that every diabetic should try to exercise for 30 minutes a day. This is probably true for anyone really, but for diabetics, the subject is even more pertinent.
However, exercise is a diabetic minefield of its own really. Like many people, I always believed that exercise (expending energy) would automatically lower sugars (by using up energy). It seems obvious and common sense - perhaps the reason I used to get so frustrated when I would exercise and come out of the gym with sugars higher than when I went in! Definately not worth me swapping a biscuit and junk tv for 30 minutes sweating on a cross trainer anyway!
The problem with exercise, particularly strenuous exercise, is that it causes the body to produce a range of chemicals includng adrenaline, which will raise your sugars by making you insulin resistant. I'm not entirely sure why it does this or what the benefit may be, but I have no doubt it all boils down to the fight or flight situation. Doesn't it all?
The challenge is trying to negotiate what to do. When you sugars are high, you risk raising them more by exercising, so sometimes, gente exercise can be more beneficial as you are less likely to produce adrenaline if you are strolling round the park. The thing is, I don't see strolling round the park as exercise. I only feel really great after a work out, when I have thrashed it out with a cross trainer for half an hour.
The other option, is to give yourself a dose of insulin before you exercise. Apparently many diabetic athletes do this, because they know how much exercise they will need, and do this so often they have fine tuned just how much insulin they will need to tide them over. As much as I would love to think I am at atheletic standard, and could apply the same mathematics to my own work outs, I would be lying. Getting out of bed sometimes feels like strenuous exercise to me! And I usually need a good old lie down after more than 30 mins at the gym. I'm not sure Sir Redgrave has the same problem! I would highly doubt it anyway.
Today I decided to go to the gym, with thoughts of diabetes and weddings at the back of my mind. I had a low right before my work out, so thought I would disconnect from the pump (having read that others often do this) so that I wouldn't have the riskof falling low during my work out. I thought that seeing as I wasn't high before hand, I had a much lower chance of hitting the high notes. How wrong I was.
I started off at 9.8mmol. Now this is on the higher side of the scale, but not anything to worry about as such. I wouldn't normally be worrying about doing correction doses at this level, or be worrying that I would seing much in each direction by exercising. I was hoping it might nudge me back down again before dinner. Again, how wrong I was. I ended up checking my sugars just before dinner, and was hanging out up in the high teens, at 19.3! By this point, my arms and legs were aching, I'm feeling muggy and frankly a bit slow, and am more than a little pissed at the result!
I guess the answer is to keep trying to find out what it is I need to do when I execise in order to stop myself from going to high or too low. It just seems very much like a brick wall when yo do something which supposedly benefits you, but ends up being a pain in the ass to fix!
The pros say that every diabetic should try to exercise for 30 minutes a day. This is probably true for anyone really, but for diabetics, the subject is even more pertinent.
However, exercise is a diabetic minefield of its own really. Like many people, I always believed that exercise (expending energy) would automatically lower sugars (by using up energy). It seems obvious and common sense - perhaps the reason I used to get so frustrated when I would exercise and come out of the gym with sugars higher than when I went in! Definately not worth me swapping a biscuit and junk tv for 30 minutes sweating on a cross trainer anyway!
The problem with exercise, particularly strenuous exercise, is that it causes the body to produce a range of chemicals includng adrenaline, which will raise your sugars by making you insulin resistant. I'm not entirely sure why it does this or what the benefit may be, but I have no doubt it all boils down to the fight or flight situation. Doesn't it all?
The challenge is trying to negotiate what to do. When you sugars are high, you risk raising them more by exercising, so sometimes, gente exercise can be more beneficial as you are less likely to produce adrenaline if you are strolling round the park. The thing is, I don't see strolling round the park as exercise. I only feel really great after a work out, when I have thrashed it out with a cross trainer for half an hour.
The other option, is to give yourself a dose of insulin before you exercise. Apparently many diabetic athletes do this, because they know how much exercise they will need, and do this so often they have fine tuned just how much insulin they will need to tide them over. As much as I would love to think I am at atheletic standard, and could apply the same mathematics to my own work outs, I would be lying. Getting out of bed sometimes feels like strenuous exercise to me! And I usually need a good old lie down after more than 30 mins at the gym. I'm not sure Sir Redgrave has the same problem! I would highly doubt it anyway.
Today I decided to go to the gym, with thoughts of diabetes and weddings at the back of my mind. I had a low right before my work out, so thought I would disconnect from the pump (having read that others often do this) so that I wouldn't have the riskof falling low during my work out. I thought that seeing as I wasn't high before hand, I had a much lower chance of hitting the high notes. How wrong I was.
I started off at 9.8mmol. Now this is on the higher side of the scale, but not anything to worry about as such. I wouldn't normally be worrying about doing correction doses at this level, or be worrying that I would seing much in each direction by exercising. I was hoping it might nudge me back down again before dinner. Again, how wrong I was. I ended up checking my sugars just before dinner, and was hanging out up in the high teens, at 19.3! By this point, my arms and legs were aching, I'm feeling muggy and frankly a bit slow, and am more than a little pissed at the result!
I guess the answer is to keep trying to find out what it is I need to do when I execise in order to stop myself from going to high or too low. It just seems very much like a brick wall when yo do something which supposedly benefits you, but ends up being a pain in the ass to fix!
Thursday, 13 May 2010
CGM continued
I'm now on my second sensor and as such my second week of CGM, after having given myself a few days off so I didn't feel too much like a robot-in-the-making. Truth is, even though I love all kinds of techno-toys - especially those on the diabetes front - even the greatest of them all can make you feel a little like an experiment. I would certainly have A LOT to explain if I walked through one of those metal detectors at the airport right now, that's for sure!
This time round I didn't seem to have results quite as polarised as those I got with the last sensor. Last time I plugged into 'The Matrix', I was finding that whenever my sugars went up and down a little too quickly, the sensor would get extremely confused and give me all sorts of weird and wonderful results. Hmm, Im not sure 'wonderful' is the right word, but the term seems fitting in some strange way.
This time round I've been more impressed with the results. I can only assume that my sugars were more stable when I first plugged it in, meaning the sensor did not have to work quite so hard to calculate the correct algorithm. Most of the time I am within 2mmol of the 'actual' result. But seeing as even BG readings can be out by as much as 30%, I would say this is good enough for me.
However, the sensor did miss two hypos this week. One when I dropped quite quickly, so is perhaps understandable seeing as the sensor has a 15 minute time delay, but another was when I was quite stable (around 6-7mmol) for a couple of hours and then seemed to drop without warning. Now, for me this isn't too much of a problem as I get reasonably good warning signs and if anything have been known to be quite excessive with my BG testing, so I do enough that nothing is too much of a surprise. BUT, considering one of the main objectives of CGM is to help identify the highs and lows so you can try to eliminate, or at least reduce them, I am a little at a loss as to just how much is 'valuable' about them. Seeing as the times the sensor seems to be less reliable is when you are experiencing sugar drops or rises which is also the most important time to know what's going on, I have yet to have a resounding "this is why I'm paying £180 a month" moment. In fact, even if I were paying £50 a month, I suspect I would still be thinking that.
Yes, it was really interesting to be able to glance down and see the figures I was clocking at a glance.
Yes, it has put my mind at ease about what I 'do' during the night, blood sugar wise.
Yes, I am glad that I was given the opportunity by Medtronic to trial it.
But for the sheer expense it has also been a valuable experience.
Perhaps once it becomes more commonpace in the UK and once companies are being truly competetive meaning the price comes down, it will be something I may consider. Perhaps Dexcom will at some point allow people to trial their equipment, giving me the chance to at least compare this with another system.
But until then, I think it may be back to the finger pricks for this robo-diabetic.
This time round I didn't seem to have results quite as polarised as those I got with the last sensor. Last time I plugged into 'The Matrix', I was finding that whenever my sugars went up and down a little too quickly, the sensor would get extremely confused and give me all sorts of weird and wonderful results. Hmm, Im not sure 'wonderful' is the right word, but the term seems fitting in some strange way.
This time round I've been more impressed with the results. I can only assume that my sugars were more stable when I first plugged it in, meaning the sensor did not have to work quite so hard to calculate the correct algorithm. Most of the time I am within 2mmol of the 'actual' result. But seeing as even BG readings can be out by as much as 30%, I would say this is good enough for me.
However, the sensor did miss two hypos this week. One when I dropped quite quickly, so is perhaps understandable seeing as the sensor has a 15 minute time delay, but another was when I was quite stable (around 6-7mmol) for a couple of hours and then seemed to drop without warning. Now, for me this isn't too much of a problem as I get reasonably good warning signs and if anything have been known to be quite excessive with my BG testing, so I do enough that nothing is too much of a surprise. BUT, considering one of the main objectives of CGM is to help identify the highs and lows so you can try to eliminate, or at least reduce them, I am a little at a loss as to just how much is 'valuable' about them. Seeing as the times the sensor seems to be less reliable is when you are experiencing sugar drops or rises which is also the most important time to know what's going on, I have yet to have a resounding "this is why I'm paying £180 a month" moment. In fact, even if I were paying £50 a month, I suspect I would still be thinking that.
Yes, it was really interesting to be able to glance down and see the figures I was clocking at a glance.
Yes, it has put my mind at ease about what I 'do' during the night, blood sugar wise.
Yes, I am glad that I was given the opportunity by Medtronic to trial it.
But for the sheer expense it has also been a valuable experience.
Perhaps once it becomes more commonpace in the UK and once companies are being truly competetive meaning the price comes down, it will be something I may consider. Perhaps Dexcom will at some point allow people to trial their equipment, giving me the chance to at least compare this with another system.
But until then, I think it may be back to the finger pricks for this robo-diabetic.
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