Not surprising really that as I've been out of a job for a little while now. Thankfully that's soon to come to an end.
Channel Four is a channel that is well known for misrepresenting persons and generally talking out of it's arse. What I speak of is yet another example of this, in relation to diabetes. Like their series that goes by the name of The Hospital. That's another subject all together. However, news team gets hold of a medical report and the words "NHS", "funding", "diabetes", "millions" and "wasted" come into the equation I generally assume that they are skewing things and not looking at the bigger picture. This is one such as case.
Channel Four has gotten hold of a report generated by a doctor (the doctor in question, after writing this, no longer merits the title of Doctor as they have disgraced their profession and become a slave to the accountants) claims that the NHS is spending far more than is necessary on the modern insulins on which many depend. It also claims that they are far less effective than the older Human insulins.
Now it is true that the modern insulins (analogues such as Novorapid, Humalog and Apidra; then the long acting insulins such as Levemir and Lantus) do cost more than the older Human insulins. However, it is not as true that they are less effective than the older ones. Far from it. They are effective if they are well used and if patients are taught essential skills such as Carbohydrate Counting. The older human insulins do not need as much skill to use. This smacks of bimodal insulins that I first started on in nineteen ninety six when I was diagnosed. The issue is that the NHS furnishes diabetics such as myself with lovely insulins that are the cutting edge in their field yet it does not educate us in their use. If there is education in carbohydrate counting that is structured (such as DAFNE and SADIE) or determined diabetics who learn the skills of their own accord. Some are given a scant education and generally left to get on with it. This was the approach first taken with me. However, at the age of seventeen I was something of a rather precocious young man with little understanding of what I was doing in relation to my diabetes nor any real will to learn new skills. After all I had been doing much the same thing without any ill effects (or so I perceived it then) for many years. The first approach at learning to carb count did not work in my case. I simply let it slide and conveniently forget about it until it was mentioned at any appointment and then fobbed off my team with excuses or told them that I didn't want to and just let it go. Then I was offered a place on a course of a similar nature to DAFNE. I took it. I haven't looked back since. What I like to envisage is a system in which all diabetics are taught to carb count as soon as is possible. Perhaps the system should be modelled on the Finnish one where all diabetics are hospitalised for a week upon diagnosis to learn the skills of carb counting.
Now back to the point, the NHS could save much money by putting all type ones onto human insulins, mixes and the like. However, these would only save on drugs costs. The cost for complications, emergency hospital admissions would be much higher than they are. The fact is that bimodal insulins and the older insulins don't really work as well and are simply out dated. The treatments available with them just aren't as good as what's available with the modern insulins. They do not offer as tight control or as good quality of life. Ultimately a few pounds saved by using older insulins and older means of control would eventually have to be spent on treating complications. That and much more money than that saved on cheaper and less effective medicines.
What got to me even more is that the report once more began to focus on type two as opposed to type one. It gets me that the small minority of type ones from the many thousands of diabetics within the country are all tarred with the same brush. Again that's another issue. What I really want to see is a report that shows all the type ones like myself who make damn good use of their insulins and care for themselves. Not the ones that don't care and allow themselves to be hospitalised or do not seek to improve their own care. Enough on this now. I'm going to write a letter to someone.
Wednesday, 22 December 2010
Monday, 20 December 2010
The novelty has worn off.
Well, it's been a little over eight months since I started pumping on the eight of April this year. Alot has happened since then. However, I'm here to talk about the pumping side of that.
Like I said I've been pumping eight months. After that time the novelty of it has really worn off and the thrills are really gone now. I'm no longer excited about bolusing or changing sets and the like anymore. It's all become a mundane reality, as much a part of my every day life as my injections were when I was on them.
Pumping is most certainly much harder work than injections was. The amount of effort required is somewhat greater than what I needed on MDI. On the flipside the rewards are much greater than they could have been on MDI. I know pre pump I had decent control on MDI. Now on a pump it's not all the easy good control that it once was. I was very lucky when I started pumping that my basals seldom deviated from one unit an hour over the day. I only had three different basal rates then. That worked for a while until things got complicated. Now I've got seven different basal rates which have had alot of hard work go into them. Then there's bolusing. It's a more complex affair than simply giving an injection ever was. There are so many options that can be taken and it does take alot of work to work out what suits what best. Now I'm doing my utmost not to whine as this has been of great benefit to me.
It has been alot of hard work for me these past few months. Especially now as I've got my basals sorted out but they seem to need to change every few weeks which is a right pain in the arse. There's always alot to take into account with pumping and there are a fair few things that can go wrong with it. I've had a dose of cannula fails and taken a fair while to work out what was going wrong. On the reverse I have now found the cannula that works for me. I've tailored the basals that seem to now work for me.
I did know when I embarked upon the pumping trail was that it would be much harder work than MDI had ever been. That was, to begin with, tempered by the novelties of pumping. Now it's all begining to seem like alot of hard work. I do try to remind myself that pumping is the right way for me to go and that it offers me alot more than MDI ever could have. The pumping has paid off. I've been able to maintain an HbA1c which has been consistantly in the seven percent area since I started pumping. The highest since starting pumping was 7.6% or 60 mmol/mol in new money. The lowest was 7.1%. I suppose I did let myself go a little after a few months of pumping and now I'm in the process of bringing myself back into line after a momentary lapse or a phase of laissez faire.
What am I trying to say then? Well, ultimately I've got to the stage where pumping is no longer fun and is more hard work than anything else. It's just another means of getting insulin into it. However the results are worth it. I am becoming more apathetic to pumping and diabetes in general though.
Like I said I've been pumping eight months. After that time the novelty of it has really worn off and the thrills are really gone now. I'm no longer excited about bolusing or changing sets and the like anymore. It's all become a mundane reality, as much a part of my every day life as my injections were when I was on them.
Pumping is most certainly much harder work than injections was. The amount of effort required is somewhat greater than what I needed on MDI. On the flipside the rewards are much greater than they could have been on MDI. I know pre pump I had decent control on MDI. Now on a pump it's not all the easy good control that it once was. I was very lucky when I started pumping that my basals seldom deviated from one unit an hour over the day. I only had three different basal rates then. That worked for a while until things got complicated. Now I've got seven different basal rates which have had alot of hard work go into them. Then there's bolusing. It's a more complex affair than simply giving an injection ever was. There are so many options that can be taken and it does take alot of work to work out what suits what best. Now I'm doing my utmost not to whine as this has been of great benefit to me.
It has been alot of hard work for me these past few months. Especially now as I've got my basals sorted out but they seem to need to change every few weeks which is a right pain in the arse. There's always alot to take into account with pumping and there are a fair few things that can go wrong with it. I've had a dose of cannula fails and taken a fair while to work out what was going wrong. On the reverse I have now found the cannula that works for me. I've tailored the basals that seem to now work for me.
I did know when I embarked upon the pumping trail was that it would be much harder work than MDI had ever been. That was, to begin with, tempered by the novelties of pumping. Now it's all begining to seem like alot of hard work. I do try to remind myself that pumping is the right way for me to go and that it offers me alot more than MDI ever could have. The pumping has paid off. I've been able to maintain an HbA1c which has been consistantly in the seven percent area since I started pumping. The highest since starting pumping was 7.6% or 60 mmol/mol in new money. The lowest was 7.1%. I suppose I did let myself go a little after a few months of pumping and now I'm in the process of bringing myself back into line after a momentary lapse or a phase of laissez faire.
What am I trying to say then? Well, ultimately I've got to the stage where pumping is no longer fun and is more hard work than anything else. It's just another means of getting insulin into it. However the results are worth it. I am becoming more apathetic to pumping and diabetes in general though.
Sunday, 19 December 2010
We don't need no education
We don't need no education,
we don't need no thought control,
no dark sarcasm in the classroom,
hey teacher! Leave them kids alone!
all in all it's just another brick in the wall,
all in all you're just another brick in the wall.
Apologies of Pink Floyd. A momentary laps of reason on my part. Spot the other Pink Floyd reference in that one.
Well education is the name of the game. More precisely the education of type ones like myself. Type ones are expected to regulate their blood glucose levels by the use of insulin. We're expected to learn how to adjust doses and that sort of thing. There are a lucky few like myself who have been on a purpose built course to educate type ones in the use of their insulins. It's called carbohyrate counting. Some are left to learn by distance under a little supervision from their diabetes team after a back of a fag packet briefing on the subject. This was tried with me and had sod all success. The problem is that there are very few courses that run for type ones. There is the DAFNE (Dose Adjustment For Normal Eating) course which is a nationwide programme and is run by many hospitals. Some hospitals have their own local equivalents. The one I did was called SADIE (Skills fo Adjusting Diet and Insulin, Eastbourne.) However, there simply isn't enough to go around and the waiting lists are huge.
This is a real shame as the increased amount of education in the type one community would save the NHS much money in terms of hospital emergency admissions and complications because the education would give people the keys to better control. I say it'd save money but I do have to bear in mind the old saying that "you can take a horse to water but you can't make it drink". It's a shame as there are people who just don't look after themselves despite the condition that they live with.
Now when I was diagnosed it was a question of two injection a day. If I recall correctly the main education was how to treat a hypo, keep meals a set times and have snacks in the mid morning and mid afternoon. Then I went onto rudimentary MDI which gave mildly better control but still we weren't taught how to alter doses nor were we really given the education we needed to make adjustments to my basal insulins. This carried on for years. It's a sad thing as if I weren't as lucky as I have been I could have fallen victim to a series of complications by now. It was only in 2009 after thirteen years of type one that I learned to carb count. This did my control so much good.
Since I learned to carb count many things have happened to me. First and foremost in diabetes is that I now use an insulin pump. For the first time in fourteen years of being type one I have since been able to achieve and maintain an HbA1c below eight percent. This never happened in the days of MDI. Granted there have been fluctuations in that but I have done things that I have never been able to do before in the terms of controlling my diabetes.
I think that's all I wanted to say. I'll probably find something else later on and then write another post about it.
Sooon to come on here will be a guest post by a friend of mine whose daughter is three and is type one. She also uses a pump. I'll put it up as soon as I get it.
we don't need no thought control,
no dark sarcasm in the classroom,
hey teacher! Leave them kids alone!
all in all it's just another brick in the wall,
all in all you're just another brick in the wall.
Apologies of Pink Floyd. A momentary laps of reason on my part. Spot the other Pink Floyd reference in that one.
Well education is the name of the game. More precisely the education of type ones like myself. Type ones are expected to regulate their blood glucose levels by the use of insulin. We're expected to learn how to adjust doses and that sort of thing. There are a lucky few like myself who have been on a purpose built course to educate type ones in the use of their insulins. It's called carbohyrate counting. Some are left to learn by distance under a little supervision from their diabetes team after a back of a fag packet briefing on the subject. This was tried with me and had sod all success. The problem is that there are very few courses that run for type ones. There is the DAFNE (Dose Adjustment For Normal Eating) course which is a nationwide programme and is run by many hospitals. Some hospitals have their own local equivalents. The one I did was called SADIE (Skills fo Adjusting Diet and Insulin, Eastbourne.) However, there simply isn't enough to go around and the waiting lists are huge.
This is a real shame as the increased amount of education in the type one community would save the NHS much money in terms of hospital emergency admissions and complications because the education would give people the keys to better control. I say it'd save money but I do have to bear in mind the old saying that "you can take a horse to water but you can't make it drink". It's a shame as there are people who just don't look after themselves despite the condition that they live with.
Now when I was diagnosed it was a question of two injection a day. If I recall correctly the main education was how to treat a hypo, keep meals a set times and have snacks in the mid morning and mid afternoon. Then I went onto rudimentary MDI which gave mildly better control but still we weren't taught how to alter doses nor were we really given the education we needed to make adjustments to my basal insulins. This carried on for years. It's a sad thing as if I weren't as lucky as I have been I could have fallen victim to a series of complications by now. It was only in 2009 after thirteen years of type one that I learned to carb count. This did my control so much good.
Since I learned to carb count many things have happened to me. First and foremost in diabetes is that I now use an insulin pump. For the first time in fourteen years of being type one I have since been able to achieve and maintain an HbA1c below eight percent. This never happened in the days of MDI. Granted there have been fluctuations in that but I have done things that I have never been able to do before in the terms of controlling my diabetes.
I think that's all I wanted to say. I'll probably find something else later on and then write another post about it.
Sooon to come on here will be a guest post by a friend of mine whose daughter is three and is type one. She also uses a pump. I'll put it up as soon as I get it.
Tuesday, 14 December 2010
A numbers game... Or is it?
Some people seem to think that having diabetes, in particular type one means that you play a numbers game for your entire life. I don't really think this is so.
Now granted alot of us try to get as good a set of numbers every day as we can. That doesn't mean that we wake up and the first thought of the day is "oooh, I'll aim to get perfect BG's today and will test so much". Far from it. Yes I do test my BG when I awake just to see where I am but also it may be a while until I eat. If I'm higher than I'd like to be when I wake I'll put in a correction and wait for the BG to drop enough for me to be comfortable enough with it to eat. I suppose this is a case of rolling with the punches.
I do test alot. I don't do this for the sole reason of perfecting my control all day, every day. I do this because I use a pump and the pump is only as good as it's user. The more tests you do the more data you have to work with and it makes things easier to sort out. I also can't really trust the way that I feel as much as others can so I'd rather test.
Back to perfectionism. I do admit that at times I am something of a perfectionist as far as my diabetes goes. However, I feel that this only applies when things are going a little wrong as I want to get things sorted as quickly as I can so that I can be back on track as soon as is possible.
The perfectionism isn't my sole objective in life. I do put alot into my diabetes however it's not because I want to see near perfect numbers every day of my life. Far from it. That would be a nice thing but it won't happen. The reason I put alot of work into my diabetes is because I don't want to fall prey to a variety of complications that can come about as a result of poor control.
What kind of conclusion must I come to then? Well based on what I've written above and how I'm feeling at the moment the perfectionism isn't my goal, it isn't something that is always at the forefront of my mind. I don't live to be the master of my diabetes and to get perfect control. This would take my entire life over, stop me having fun and ultimately, to gain perfect control you'd have to isolate yourself in a laboratory and remove all fun and things that can interfere with the diabetes from your life. The trouble is that there are so many things that can interfere with diabetes that it'd be impossible to remove all of them. Diabetes isn't about making your control so perfect that no one could tell the difference between your BG's and that of a non diabetic. It's about finding the balance between good control and having a fun and fulfilling life. Someone else has put this much better than I can ever hope to. When I was at Friends For Life in October this year one of the organisers said a few words to round it off. It was based on his daughter who has been diabetic for many years. He said " we don't live to be diabetic, we live to dance on the beach." That says much what I want to in a much more eloquent way than I ever could.
Now granted alot of us try to get as good a set of numbers every day as we can. That doesn't mean that we wake up and the first thought of the day is "oooh, I'll aim to get perfect BG's today and will test so much". Far from it. Yes I do test my BG when I awake just to see where I am but also it may be a while until I eat. If I'm higher than I'd like to be when I wake I'll put in a correction and wait for the BG to drop enough for me to be comfortable enough with it to eat. I suppose this is a case of rolling with the punches.
I do test alot. I don't do this for the sole reason of perfecting my control all day, every day. I do this because I use a pump and the pump is only as good as it's user. The more tests you do the more data you have to work with and it makes things easier to sort out. I also can't really trust the way that I feel as much as others can so I'd rather test.
Back to perfectionism. I do admit that at times I am something of a perfectionist as far as my diabetes goes. However, I feel that this only applies when things are going a little wrong as I want to get things sorted as quickly as I can so that I can be back on track as soon as is possible.
The perfectionism isn't my sole objective in life. I do put alot into my diabetes however it's not because I want to see near perfect numbers every day of my life. Far from it. That would be a nice thing but it won't happen. The reason I put alot of work into my diabetes is because I don't want to fall prey to a variety of complications that can come about as a result of poor control.
What kind of conclusion must I come to then? Well based on what I've written above and how I'm feeling at the moment the perfectionism isn't my goal, it isn't something that is always at the forefront of my mind. I don't live to be the master of my diabetes and to get perfect control. This would take my entire life over, stop me having fun and ultimately, to gain perfect control you'd have to isolate yourself in a laboratory and remove all fun and things that can interfere with the diabetes from your life. The trouble is that there are so many things that can interfere with diabetes that it'd be impossible to remove all of them. Diabetes isn't about making your control so perfect that no one could tell the difference between your BG's and that of a non diabetic. It's about finding the balance between good control and having a fun and fulfilling life. Someone else has put this much better than I can ever hope to. When I was at Friends For Life in October this year one of the organisers said a few words to round it off. It was based on his daughter who has been diabetic for many years. He said " we don't live to be diabetic, we live to dance on the beach." That says much what I want to in a much more eloquent way than I ever could.
Tuesday, 7 December 2010
I was on the internet recently and found this...
Whilst having a browse on Youtube (as you do) I happened upon a video about changing the infusion set as I do on a regular basis. This was a little different as it was filmed by some parents of a young lad no more than a year or two old (link at end of post, if I remember) and I was struck by emotion. Something that doesn't usually happen with blokes in general.
When I was in my early teens I recall my Father saying that if he could, he would have diabetes instead of me. Now that I use the Children With Diabetes (link to website at the bottom of the post) mailing list I can begin to understand a little of what they and my old man must have felt and continue to feel.
It's one thing to have grown up being diabetic and not knowing anything different but to be the parent of a diabetic child? That's something I can't even begin to comprehend if I'm honest with you all. One can suppose that there is the feeling that what is your perfect child has been spoiled by something that you can't influence, the emotion of the knowledge that your child will now have something that cannot be cured, only controlled but even so there's still the risk that you won't get away Scot free, the pain that they don't understand what's happening other than your parents are coming at you with a very large metal pointy thing and inflict pain upon you and that they'll grow up with something that they won't be able to shake but with which you'll have to deal with until they're at an age when they can take it over for themselves.
So what's the point of this post you may be asking yourselves (yes, you dear literate proletariat) I suppose this is me raising a glass (both metaphorically and physically) to the parents who are absolute saints and wonderful in the way that they deal with their children's illness. I salute you.
I only wish that this kind of support had been available to my folks when I had been diagnosed as this would have been of such great benefit to them. This is my toast to you, the parents of children with diabetes who are such a resource to one another, such a comfort to one another in times of hardship and many more occaisions and things like that.
So, what caveat must I add to this? Well, ultimately I am so very grateful for the tireless effort put in by my parents into something the stresses of which I cannot comprehend or even begin to imagine. I am lucky in the way that I am the diabetic and don't have to go through what the parents have. I say lucky, it's a Catch 22 situation and one I'd rather not be in but the situation I find myself in I must make the most of.
Here there be links:
http://www.youtube.com/watch?v=nDfebHZwAKw&feature=related
http://www.childrenwithdiabetes.com/
When I was in my early teens I recall my Father saying that if he could, he would have diabetes instead of me. Now that I use the Children With Diabetes (link to website at the bottom of the post) mailing list I can begin to understand a little of what they and my old man must have felt and continue to feel.
It's one thing to have grown up being diabetic and not knowing anything different but to be the parent of a diabetic child? That's something I can't even begin to comprehend if I'm honest with you all. One can suppose that there is the feeling that what is your perfect child has been spoiled by something that you can't influence, the emotion of the knowledge that your child will now have something that cannot be cured, only controlled but even so there's still the risk that you won't get away Scot free, the pain that they don't understand what's happening other than your parents are coming at you with a very large metal pointy thing and inflict pain upon you and that they'll grow up with something that they won't be able to shake but with which you'll have to deal with until they're at an age when they can take it over for themselves.
So what's the point of this post you may be asking yourselves (yes, you dear literate proletariat) I suppose this is me raising a glass (both metaphorically and physically) to the parents who are absolute saints and wonderful in the way that they deal with their children's illness. I salute you.
I only wish that this kind of support had been available to my folks when I had been diagnosed as this would have been of such great benefit to them. This is my toast to you, the parents of children with diabetes who are such a resource to one another, such a comfort to one another in times of hardship and many more occaisions and things like that.
So, what caveat must I add to this? Well, ultimately I am so very grateful for the tireless effort put in by my parents into something the stresses of which I cannot comprehend or even begin to imagine. I am lucky in the way that I am the diabetic and don't have to go through what the parents have. I say lucky, it's a Catch 22 situation and one I'd rather not be in but the situation I find myself in I must make the most of.
Here there be links:
http://www.youtube.com/watch?v=nDfebHZwAKw&feature=related
http://www.childrenwithdiabetes.com/
Sunday, 5 December 2010
The joys of putting in a cannula
Now, in the UK there are many diabetics, only a small fraction of those are type one such as I. Forgive me as I cannot remember the statistics (then again it wasn't a strength of mine at university!) but I do remember this one; out of all the type ones in the UK only a miniscule four percent use an insulin pump. I'm one of the lucky few. [For he who today sheds his blood with me will be my brother. We happy few, we band of brothers. Shakespeare, Henry V)] Excuse the novelty that is me quoting things and doing so in what is probably a none too accurate fashion!
This four percent will know what a pain in the arse it is to change a cannula on a regular basis. Mine generally last about three days before things start to go Pete Tong. After about threee days boluses begin to loose their effectiveness and after meals I generally begin to shoot up into double figures so then I need to change. That aside there is the choice of cannula. This is quite something as to different pumpers different cannulas mean different things - comfort, convenience of insertion and foot print upon the body. There are many more things that people take into consideration but those are the main ones for me.
Having tried a variety of Medtronic's cannulas (cannulae?) since I began pumping a little under eight months. Those would be Quick Sets, Mios and last but by no means least, the Silhouettes. Out of all of these I currently use the Silhouettes and I love them. I won't go into the reasons why at this point in time, a later post will come about this.
Back to the original point of the post, changing cannulas. Today was the day of a cannula change as the reservoir for my pump (1.8 ml, about 175 units of the lovelyt Novorapid) lasts roughly three days if I don't binge on carbs or need many corrections. I thought that today I would try a new site. It's not far from the ones that I usually use which are about an inch or two from my belly button which is found amidst hairs on my fledgling beer gut. I thought I would move it more near my hips as at the time my considerable love handles seemed adequate to house the lovely cannula.
I tried twice. I failed twice before retreating back to the more normal areas. Now in retrospect I should have gone in at a more shallow angle. The blurb that Medtronic dispenses with each box of cannulas (something I fail to read at every occaision) says that I should by rights go in at an angle of approximately twenty to thirty degress. I go in at about forty to forty five degrees. Perhaps that was too deep an angle for the flab that was available on the love handles. It seems so. The sites were bloody agony to touch, not something I am used to as I have a considerable amount of padding with which to work. I don't really know anything else other than those two factors that caused such pain. I suppose you learn something new everyday when you pump.
Here endeth the lesson.
This four percent will know what a pain in the arse it is to change a cannula on a regular basis. Mine generally last about three days before things start to go Pete Tong. After about threee days boluses begin to loose their effectiveness and after meals I generally begin to shoot up into double figures so then I need to change. That aside there is the choice of cannula. This is quite something as to different pumpers different cannulas mean different things - comfort, convenience of insertion and foot print upon the body. There are many more things that people take into consideration but those are the main ones for me.
Having tried a variety of Medtronic's cannulas (cannulae?) since I began pumping a little under eight months. Those would be Quick Sets, Mios and last but by no means least, the Silhouettes. Out of all of these I currently use the Silhouettes and I love them. I won't go into the reasons why at this point in time, a later post will come about this.
Back to the original point of the post, changing cannulas. Today was the day of a cannula change as the reservoir for my pump (1.8 ml, about 175 units of the lovelyt Novorapid) lasts roughly three days if I don't binge on carbs or need many corrections. I thought that today I would try a new site. It's not far from the ones that I usually use which are about an inch or two from my belly button which is found amidst hairs on my fledgling beer gut. I thought I would move it more near my hips as at the time my considerable love handles seemed adequate to house the lovely cannula.
I tried twice. I failed twice before retreating back to the more normal areas. Now in retrospect I should have gone in at a more shallow angle. The blurb that Medtronic dispenses with each box of cannulas (something I fail to read at every occaision) says that I should by rights go in at an angle of approximately twenty to thirty degress. I go in at about forty to forty five degrees. Perhaps that was too deep an angle for the flab that was available on the love handles. It seems so. The sites were bloody agony to touch, not something I am used to as I have a considerable amount of padding with which to work. I don't really know anything else other than those two factors that caused such pain. I suppose you learn something new everyday when you pump.
Here endeth the lesson.
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