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!
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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.
Friday, 7 May 2010
To claim or not to claim
Since starting this CGM trial, there have been two thoughts at the forefront of my mind.
Cost
Effect
The fact is, CGM is an expensive business. It's not spot on and can't be relied on completely, but for a diabetic to know at a glance what their sugars are doing, without having to invasively stab their finger and force themselves to bleed - is wonderful. I won't lie, there have been times I've been frustrated and times I've questioned if the system was as valuable as the sales reps would have you believe. However, I am a very demanding diabetic, who is always looking for new ways to manage a disease which seems to find new ways to surprise me everyday.
I have heard many times about claiming Disability Living Allowance for their condition and provide them some assistance. Until now, I have never felt the need to claim. I have never been faced with cost to manage this condition and have never really seen DLA as something I would benefit from.
But having been faced with a potential cost of £180 per month and being only at the beginning of a career and earning money very much in the 'little leagues', I looked into it this evening. I was never really sure why people would need extra money for diabetic management - until now.
So I googled "Diabetes+DLA" and found some really interesting - and sometimes frustratingly ignorant comments.
There were many diabetics out there who seemed to be claiming DLA on the premise of needing sugar free food claiming it was more expensive. Claiming for buses to hospitals despite being able to drive and admitting to owning their own cars! I understand that for some appointments (retinal screening) you aren't allowed to drive, due to the drops they use to dilate your pupils making you all but temporarily blind. But nevertheless I was surprised by some of the comments posted. Any specialist worth the more than the value of the paper their qualification is printed on knows that products aimed at diabetics are no more than a gimmick. I would be highly concerned if people really were receiving such advice. Sugar free food in my experience is no more expensive than its full sugar counterpart.
On the other hand, I read comments which I found surprisingly ignorant. You would think after 23 years of trying to explain this disease to anyone who will listen, I would by now have realised that some people just don't have a clue and most likely never will.
I read comments like, "There are much worse things than having diabetes" - yes, I completely agree that there are, but that doesn't change the fact that diabetics never get a day off, they will never have 'total' control, and every diabetic at times has a low or high which takes them by surprise and scares the living s*** out of them. And no matter how many worse things there are, how dare people assume that diabetes doesn't destroy a huge portion of your life, limiting you in countless ways. There are diabetics who suffer hypo unawareness - these people can be affected by debilitating hypos to which they only become aware of when they regain consciousness, hours after they hit the floor! Is that not bad enough to feature on the scale of 'things which 'disable' your life'?? There are diabetics who describe themselves as 'brittle'. Now, whether or not this truly exists is still a matter of great controversy, but being someone who can swing from 2.2 to 30 in any 24 hour period for no apparent reason and who has to weigh her food religiously to try and get within reaching distance of 'ideal' control, I find it baffling when I sit down to eat with other diabetics who guess what dose they may need, do an injection and are spot on two hours later. I just can't get my head around it and am inclined to agree with people who fight the case for brittle diabetes that yes, for some people control isn't even a word in there vocabulary. Instead, they use the word 'cope'. I doubt I will spend one single day of my life within these targets - even as a pump user.
So am I right to think that CGM may benefit me enough to warrant applying for DLA? I almost feel dirty considering the idea, seeing as apparently because I don't have any amputations and can still dress myself, I don't rank high enough on the scale of being a deserving candidate. But at the same time, I know that at times I have to do anything up to 25 blood tests during the day (and night), just to try and keep myself at a reasonable level and the more I test, the more frantic and obsessed I become. Does that make me deserving?
Personally, I have never considered myself 'disabled'. The label in itself and the stigma surrounding disability is problematic from the outset, but as someone who has voluntarily made the decision to wear an insulin pump in the hope I may get some sort of stability at the end of it, do I have a right to aim higher? To hope that with a bit of financial support I might gain a few more inches towards a normal life? Isn't that what DLA is for?
I have no idea. I don't know whether I will claim or even get accepted, but I find it frustrating that while there are those who use the system inappropriately, there are also those who genuinely need a little more assistance. Someone who makes the decision not to drive, for their own safety and for others is in my eyes deserving of a little extra help. If they choose to get the bus to protect other people, then yes, they can have all the bus fares they want! Someone who chooses to eat only an organic super-healthy diet, because their sugars are better when they do is to me, someone who is deserving. When I did my detox, I had never seen such fantastic sugars in my life. For me it wasn't something I could maintain, partly due to the sheer cost. My grocery shopping bill tripled while eating like that because organic foods, nuts, seeds and specialist milks do cost more. Yes, it is extreme, but is it not better to claim assistance now and improve your chances of not only living a better, but also longer life rather than claim from the NHS for reparation procedures to eyes, kidneys, feet and heart problems later?
As for effect, even if CGM improves my control a little, is this not an effect worth striving for. DLA is there to assist people in making their lives more normal. Testing 20 times a day is NOT normal. It's not something you ever 'get used to' and it's not something anyone should have to go through.
Surely if it improves the already restricted life of a diabetic, then the DLA has been allocated for all the right reasons.
I would be really interested to see what people think about this. I have only just begun looking into it, but can already feel a fire starting out already.
Cost
Effect
The fact is, CGM is an expensive business. It's not spot on and can't be relied on completely, but for a diabetic to know at a glance what their sugars are doing, without having to invasively stab their finger and force themselves to bleed - is wonderful. I won't lie, there have been times I've been frustrated and times I've questioned if the system was as valuable as the sales reps would have you believe. However, I am a very demanding diabetic, who is always looking for new ways to manage a disease which seems to find new ways to surprise me everyday.
I have heard many times about claiming Disability Living Allowance for their condition and provide them some assistance. Until now, I have never felt the need to claim. I have never been faced with cost to manage this condition and have never really seen DLA as something I would benefit from.
But having been faced with a potential cost of £180 per month and being only at the beginning of a career and earning money very much in the 'little leagues', I looked into it this evening. I was never really sure why people would need extra money for diabetic management - until now.
So I googled "Diabetes+DLA" and found some really interesting - and sometimes frustratingly ignorant comments.
There were many diabetics out there who seemed to be claiming DLA on the premise of needing sugar free food claiming it was more expensive. Claiming for buses to hospitals despite being able to drive and admitting to owning their own cars! I understand that for some appointments (retinal screening) you aren't allowed to drive, due to the drops they use to dilate your pupils making you all but temporarily blind. But nevertheless I was surprised by some of the comments posted. Any specialist worth the more than the value of the paper their qualification is printed on knows that products aimed at diabetics are no more than a gimmick. I would be highly concerned if people really were receiving such advice. Sugar free food in my experience is no more expensive than its full sugar counterpart.
On the other hand, I read comments which I found surprisingly ignorant. You would think after 23 years of trying to explain this disease to anyone who will listen, I would by now have realised that some people just don't have a clue and most likely never will.
I read comments like, "There are much worse things than having diabetes" - yes, I completely agree that there are, but that doesn't change the fact that diabetics never get a day off, they will never have 'total' control, and every diabetic at times has a low or high which takes them by surprise and scares the living s*** out of them. And no matter how many worse things there are, how dare people assume that diabetes doesn't destroy a huge portion of your life, limiting you in countless ways. There are diabetics who suffer hypo unawareness - these people can be affected by debilitating hypos to which they only become aware of when they regain consciousness, hours after they hit the floor! Is that not bad enough to feature on the scale of 'things which 'disable' your life'?? There are diabetics who describe themselves as 'brittle'. Now, whether or not this truly exists is still a matter of great controversy, but being someone who can swing from 2.2 to 30 in any 24 hour period for no apparent reason and who has to weigh her food religiously to try and get within reaching distance of 'ideal' control, I find it baffling when I sit down to eat with other diabetics who guess what dose they may need, do an injection and are spot on two hours later. I just can't get my head around it and am inclined to agree with people who fight the case for brittle diabetes that yes, for some people control isn't even a word in there vocabulary. Instead, they use the word 'cope'. I doubt I will spend one single day of my life within these targets - even as a pump user.
So am I right to think that CGM may benefit me enough to warrant applying for DLA? I almost feel dirty considering the idea, seeing as apparently because I don't have any amputations and can still dress myself, I don't rank high enough on the scale of being a deserving candidate. But at the same time, I know that at times I have to do anything up to 25 blood tests during the day (and night), just to try and keep myself at a reasonable level and the more I test, the more frantic and obsessed I become. Does that make me deserving?
Personally, I have never considered myself 'disabled'. The label in itself and the stigma surrounding disability is problematic from the outset, but as someone who has voluntarily made the decision to wear an insulin pump in the hope I may get some sort of stability at the end of it, do I have a right to aim higher? To hope that with a bit of financial support I might gain a few more inches towards a normal life? Isn't that what DLA is for?
I have no idea. I don't know whether I will claim or even get accepted, but I find it frustrating that while there are those who use the system inappropriately, there are also those who genuinely need a little more assistance. Someone who makes the decision not to drive, for their own safety and for others is in my eyes deserving of a little extra help. If they choose to get the bus to protect other people, then yes, they can have all the bus fares they want! Someone who chooses to eat only an organic super-healthy diet, because their sugars are better when they do is to me, someone who is deserving. When I did my detox, I had never seen such fantastic sugars in my life. For me it wasn't something I could maintain, partly due to the sheer cost. My grocery shopping bill tripled while eating like that because organic foods, nuts, seeds and specialist milks do cost more. Yes, it is extreme, but is it not better to claim assistance now and improve your chances of not only living a better, but also longer life rather than claim from the NHS for reparation procedures to eyes, kidneys, feet and heart problems later?
As for effect, even if CGM improves my control a little, is this not an effect worth striving for. DLA is there to assist people in making their lives more normal. Testing 20 times a day is NOT normal. It's not something you ever 'get used to' and it's not something anyone should have to go through.
Surely if it improves the already restricted life of a diabetic, then the DLA has been allocated for all the right reasons.
I would be really interested to see what people think about this. I have only just begun looking into it, but can already feel a fire starting out already.
Wednesday, 5 May 2010
Torn
So I have now reached the half way mark towards the end of my CGM sensor trial, and man am I torn!
When I started the trial, I had hoped that I would be able to wear the sensor for longer than the recommended 6 days, because getting even 12 days out of one sensor would halve the potential cost, meaning it would be much more manageable. Bearing in mind that it can cost in the region of £180 per month to use CGM, which is a fair old price by any stretch of the imagination, just those extra few days could be a deal breaker for me!
As expected, my pump cried out one of the many baffling alarms yesterday to let me know that my sensor had expired. Truth be told, there are so many alarms on my pump, I usually NEVER know what I'm being warned about without looking at the pump. This one, I had been expecting.
I swatted up all about CGM before the trial and already knew that many people have managed to trick the pump into thinking the old sensor is in fact a new one. So as long as the enzymes in the sensor which communicate with my glucose are still there, I should be able to get a few more days out of each sensor. There's actually a strange sense of accomplishment when you convince the sensor it's 'new', almost like finding a five pound note or getting a free meal. Really, if I can double the life of this sensor - it's like finding £20!
So far the sensor went for an extra day, but it crashed and burned pretty much 24 hours after it was due to expire. The pump was warning me there was a 'weak signal' all day, and it finally kicked the sensor bucket at 1pm this afternoon - right before one of the meetings during which knowing my sugar levels at a needle free glance would be very handy!
I am currently trying to convince it to live again - but it's not looking good.
As for the CGM itself, there have been ups and downs, leaving me very torn about approaching decision. On one hand, I have found it to be incredibly precise at times. This morning I was 6.9 on the pump and 6.8 on the meter. After a meal, even if my blood sugar is climbing too quickly for the sensor to show the true 'value' yet, the graph screen on the pump does show that I am rising quickly, which is still informative, even if it isn't spot on.
After the sensor died this afternoon, I really did 'miss' having the graph to look at. Especially when I sat in my meeting, unsure of what my levels were and not in the right company to whip out my testing kit and bleed in front of people. Gross I know, but it's every day for a diabetic. The convenience makes for excellent peace of mind and having it there reassures me - most of the time.
The drawbacks I have found, are that when my sugars are moving rapidly, the sensor gets confused or doesn't react very quickly. For example, I got home from work yesterday and took a quick glance at the screen. Now, I know from personal experience that I drop in the afternoons, because I haven't yet perfected my basal levels. The pump was telling me I was 7.5 and dropping quickly. "OK", I thought, "I'm not far off having dinner so may as well hang on". But a couple of seconds later I reconsidered my choice and did a test, just to be sure.
I was already 3.1mmol, according to blood glucose. Now that's not good. Yes, the sensor did recognise I was falling and it did give me enough information to make the decision to test, but it was all a little late.
For me, it's really important that I know what is going on when I am going up or down too quickly. Why? When did it start? Is it a pattern? The fact that the sensor gets 'confused' is something I'm not sure that I am OK with yet. Not for £40 per week anyway.
I still have another sensor to go and on one hand I can see so many benefits. But for me as it stands, the convenience of looking at a graph and seeing a straight line, isn't quite value for money. If it could tell me more precisely when I am going up and down at speed, I could probably gain more from it.
I guess we'll have to see what the next week has in store
When I started the trial, I had hoped that I would be able to wear the sensor for longer than the recommended 6 days, because getting even 12 days out of one sensor would halve the potential cost, meaning it would be much more manageable. Bearing in mind that it can cost in the region of £180 per month to use CGM, which is a fair old price by any stretch of the imagination, just those extra few days could be a deal breaker for me!
As expected, my pump cried out one of the many baffling alarms yesterday to let me know that my sensor had expired. Truth be told, there are so many alarms on my pump, I usually NEVER know what I'm being warned about without looking at the pump. This one, I had been expecting.
I swatted up all about CGM before the trial and already knew that many people have managed to trick the pump into thinking the old sensor is in fact a new one. So as long as the enzymes in the sensor which communicate with my glucose are still there, I should be able to get a few more days out of each sensor. There's actually a strange sense of accomplishment when you convince the sensor it's 'new', almost like finding a five pound note or getting a free meal. Really, if I can double the life of this sensor - it's like finding £20!
So far the sensor went for an extra day, but it crashed and burned pretty much 24 hours after it was due to expire. The pump was warning me there was a 'weak signal' all day, and it finally kicked the sensor bucket at 1pm this afternoon - right before one of the meetings during which knowing my sugar levels at a needle free glance would be very handy!
I am currently trying to convince it to live again - but it's not looking good.
As for the CGM itself, there have been ups and downs, leaving me very torn about approaching decision. On one hand, I have found it to be incredibly precise at times. This morning I was 6.9 on the pump and 6.8 on the meter. After a meal, even if my blood sugar is climbing too quickly for the sensor to show the true 'value' yet, the graph screen on the pump does show that I am rising quickly, which is still informative, even if it isn't spot on.
After the sensor died this afternoon, I really did 'miss' having the graph to look at. Especially when I sat in my meeting, unsure of what my levels were and not in the right company to whip out my testing kit and bleed in front of people. Gross I know, but it's every day for a diabetic. The convenience makes for excellent peace of mind and having it there reassures me - most of the time.
The drawbacks I have found, are that when my sugars are moving rapidly, the sensor gets confused or doesn't react very quickly. For example, I got home from work yesterday and took a quick glance at the screen. Now, I know from personal experience that I drop in the afternoons, because I haven't yet perfected my basal levels. The pump was telling me I was 7.5 and dropping quickly. "OK", I thought, "I'm not far off having dinner so may as well hang on". But a couple of seconds later I reconsidered my choice and did a test, just to be sure.
I was already 3.1mmol, according to blood glucose. Now that's not good. Yes, the sensor did recognise I was falling and it did give me enough information to make the decision to test, but it was all a little late.
For me, it's really important that I know what is going on when I am going up or down too quickly. Why? When did it start? Is it a pattern? The fact that the sensor gets 'confused' is something I'm not sure that I am OK with yet. Not for £40 per week anyway.
I still have another sensor to go and on one hand I can see so many benefits. But for me as it stands, the convenience of looking at a graph and seeing a straight line, isn't quite value for money. If it could tell me more precisely when I am going up and down at speed, I could probably gain more from it.
I guess we'll have to see what the next week has in store
Tuesday, 4 May 2010
All the small things
Although I am supposed to be writing about my experiences with CGM at the moment - I read a comment today on the Facebook site for Diabetes UK which made me think about how many 'small things' there are about diabetes, which only diabetics or those who are close to them will know all about.
Much in the same way that anyone may have hobbies or pass-times which come with pitfalls, the foibles surrounding being a diabetic, soon become commonplace to all those who share the disease. I thought it might be a welcome break from all things heavy to list a few of the 'silly little things' you learn as a diabetic.
I have no doubt that every diabetic who has had the disease for more than 5 minutes, will know that when it comes to retinal screening, the only way to do it is with a strong pair of sunnies! Why, because when they dilate your pupils so they can take a really good look at the back of your eye - to check for bleeds, breaks or hemorrhages - the pupil is forced open, letting in every little bit of light. This means that when you leave the screening centre, you feel like you are staring straight at the sun. I made this mistake many a time and ended up being led to the car with one hand over my eyes, laughing at the situation, and cringing at the 'pain' all the way, looking a little like I was taking part in a bet.
Every diabetic knows that when it comes to explaining diabetes, there will always be the one person who knows it better than you. They will question whatever you say, because a friend of theirs had an uncle who knew someone who thought he had diabetes. Because apparently life-time membership to the D club doesn't come with knowing anything about it. Because if I say I can eat the cookie because I can take an extra bolus for it, I'm probably lying. Because that's human nature - to question.
Every diabetic knows that when it comes to holiday, planning which bikini to wear or what maxi dress goes well with a tan is the bottom of your agenda. Instead, as a diabetic, you need to plan how many testing strips to take, how many glucose tablets you'll need. How many needles or cannulas you'll need and so on and so forth. It's basically the equivalent to gaining an A-level in maths before you even get to working out the exchange rate and how much dollar you'll get for your quid!
As a pump-user, you get used to the fact that there are more alarms on the damned thing than there are letters in the alphabet. Depending on whether you are too high, too low, running out of insulin or have forgotten your latest test, it never fails to tickle me that when my chest beeps (thanks to where I keep it), I almost never have a clue what its shouting about, and I have to start self-frisking wherever I am, much to the amusement and often embarrassment of the people around me.
As a diabetic, you learn that sometime, most likely when you least expect it, your diabetes will throw a hypo in front of someone who doesn't really know what to do. You know you'll be fine and all you need is a juice and five or 10 minutes to compose yourself and get the grey matter working again, and yet the person looking at you appears to have lost the ability to blink, and may in fact pass out before you even get a chance to say 'I'm fine, it's just a low'.
As a diabetic, you learn that while the rest of the world think junk food from a chain is bad, thanks to the money grabbers at the top of the food chain (no pun intended - but you have to admit its a good one!) the portions are so uniform and standardised that carb counting becomes as easy as "I'll have a Big Mac please". It almost becomes healthy to go, because you could set your watch by how predictable the outcome will be. It's almost like a free meal!
As a diabetic, you know that at some point in your life, you will do something realllllly stoopid when you're low. Lows themselves are not a laughing matter but what you do when you are mid hypo - in my book, is. I for one have gotten out of bed and because I'm low and not thinking straight, have been totally convinced that I've gone blind as a result of going low. I mean completely blind. My partner was trying to calm me down, and somewhere beneath the shouts of "Oh my god, I'm scared I can't see, I've gone blind", I heard him say "Wait there, I just have to turn the light on". PING, on goes the light, and I realise I'm not blind, but I'm still stood there with outstretched arms, bent knees and craned back, because that's how all blind people get around, apparently!
When you're a diabetic, you know that no matter how hard you try to clear up after yourself, all the tiny little tabs and flaps which come with your medical equipment get EVERYWHERE! When my childhood friend moved out of her house, she found 37 little white tabs, which would look like nothing more than a discarded bit of paper to those not in 'the know', but which were in fact the sterile tabs which covered up the needle on the pen-tip you just changed. The number of testing strips currently nestled in forgotten corners of our flat gathering dust, probably reaches into the hundreds because the little blighters get everywhere.
There are many things that diabetics get used to with this disease. Many of them are demanding, saddening and sometimes, destroying. So its important now and then to remind yourself of the small things. There must be something about diabetes which has made you laugh. Something silly you did during a hypo. A hilarious reaction you got from someone when you talked about blood tests or injections, which made you chuckle at their ignorance or squeamishness. There must be something.
You have to take time to remind yourself about it and giggle at the silly little things. As 'they' say, laughing is the best medicine.
Probably can't replace my insulin with it just yet though :)
Much in the same way that anyone may have hobbies or pass-times which come with pitfalls, the foibles surrounding being a diabetic, soon become commonplace to all those who share the disease. I thought it might be a welcome break from all things heavy to list a few of the 'silly little things' you learn as a diabetic.
I have no doubt that every diabetic who has had the disease for more than 5 minutes, will know that when it comes to retinal screening, the only way to do it is with a strong pair of sunnies! Why, because when they dilate your pupils so they can take a really good look at the back of your eye - to check for bleeds, breaks or hemorrhages - the pupil is forced open, letting in every little bit of light. This means that when you leave the screening centre, you feel like you are staring straight at the sun. I made this mistake many a time and ended up being led to the car with one hand over my eyes, laughing at the situation, and cringing at the 'pain' all the way, looking a little like I was taking part in a bet.
Every diabetic knows that when it comes to explaining diabetes, there will always be the one person who knows it better than you. They will question whatever you say, because a friend of theirs had an uncle who knew someone who thought he had diabetes. Because apparently life-time membership to the D club doesn't come with knowing anything about it. Because if I say I can eat the cookie because I can take an extra bolus for it, I'm probably lying. Because that's human nature - to question.
Every diabetic knows that when it comes to holiday, planning which bikini to wear or what maxi dress goes well with a tan is the bottom of your agenda. Instead, as a diabetic, you need to plan how many testing strips to take, how many glucose tablets you'll need. How many needles or cannulas you'll need and so on and so forth. It's basically the equivalent to gaining an A-level in maths before you even get to working out the exchange rate and how much dollar you'll get for your quid!
As a pump-user, you get used to the fact that there are more alarms on the damned thing than there are letters in the alphabet. Depending on whether you are too high, too low, running out of insulin or have forgotten your latest test, it never fails to tickle me that when my chest beeps (thanks to where I keep it), I almost never have a clue what its shouting about, and I have to start self-frisking wherever I am, much to the amusement and often embarrassment of the people around me.
As a diabetic, you learn that sometime, most likely when you least expect it, your diabetes will throw a hypo in front of someone who doesn't really know what to do. You know you'll be fine and all you need is a juice and five or 10 minutes to compose yourself and get the grey matter working again, and yet the person looking at you appears to have lost the ability to blink, and may in fact pass out before you even get a chance to say 'I'm fine, it's just a low'.
As a diabetic, you learn that while the rest of the world think junk food from a chain is bad, thanks to the money grabbers at the top of the food chain (no pun intended - but you have to admit its a good one!) the portions are so uniform and standardised that carb counting becomes as easy as "I'll have a Big Mac please". It almost becomes healthy to go, because you could set your watch by how predictable the outcome will be. It's almost like a free meal!
As a diabetic, you know that at some point in your life, you will do something realllllly stoopid when you're low. Lows themselves are not a laughing matter but what you do when you are mid hypo - in my book, is. I for one have gotten out of bed and because I'm low and not thinking straight, have been totally convinced that I've gone blind as a result of going low. I mean completely blind. My partner was trying to calm me down, and somewhere beneath the shouts of "Oh my god, I'm scared I can't see, I've gone blind", I heard him say "Wait there, I just have to turn the light on". PING, on goes the light, and I realise I'm not blind, but I'm still stood there with outstretched arms, bent knees and craned back, because that's how all blind people get around, apparently!
When you're a diabetic, you know that no matter how hard you try to clear up after yourself, all the tiny little tabs and flaps which come with your medical equipment get EVERYWHERE! When my childhood friend moved out of her house, she found 37 little white tabs, which would look like nothing more than a discarded bit of paper to those not in 'the know', but which were in fact the sterile tabs which covered up the needle on the pen-tip you just changed. The number of testing strips currently nestled in forgotten corners of our flat gathering dust, probably reaches into the hundreds because the little blighters get everywhere.
There are many things that diabetics get used to with this disease. Many of them are demanding, saddening and sometimes, destroying. So its important now and then to remind yourself of the small things. There must be something about diabetes which has made you laugh. Something silly you did during a hypo. A hilarious reaction you got from someone when you talked about blood tests or injections, which made you chuckle at their ignorance or squeamishness. There must be something.
You have to take time to remind yourself about it and giggle at the silly little things. As 'they' say, laughing is the best medicine.
Probably can't replace my insulin with it just yet though :)