I replied to a forum thread today, and only as I was posting did it strike me that I've completely changed the way I view my blood glucose target range in the last year or so. A mother with a teenage type 1 diabetic daughter was expressing concern about the extra fingerstick blood glucose tests, basal testing etc that would be part and parcel of her move to pump therapy. She then said she had to text to remind her daughter to do a test, and text back the results. It made me wonder how that felt for a young person. Whether they would feel that the tests were for them at all.
And then I realised that was exactly how I had felt about these things too.
The recommended levels for adults with type 1 diabetes in the UK are 4-7 mmol/L (72-126mg/dl) before meals and less than 9mmol/L (162mg/dl) by two hours after meals. This is, frankly, a tiny target to try to hit. To be honest the permitted percentage of inaccuracy on a BG meter is 10%. So the meter itself is only accurate to one sixth of the target range some of the time. I've had 20-odd years of consultants telling me that I was 'doing fine', but 'should try to have not quite so many highs and avoid those lows'. I've always just smiled through gritted teeth at such comments. "There speaks a person" I would say to myself, "who has never tried to guestimate the carb load and absorption rate of a meal, and tried to match it precisely with the activity profile of an insulin injection, taking into account any abnormal activity level during the day." If they wanted me to hit their stupid target, they should have made the darned thing a bit bigger.
In a small, but incredibly crucial way though, my mindset has changed. The shift was so slight I only noticed it when trying to look at the same issue from someone else's point of view. The range, is still as tiny, but it is now my range. Whereas before I would grumpily think, "well that's just impossible... I'll aim for 4-12, but for you to ask me to do any more than that is just unreasonable" I now see 4-9 as my target for me.
I've never tested so much in all my 20 years with diabetes as I have over the last 14 months. I've never voluntarily gone without so many meals to check on my basal insulin's activity. In all likelihood I would not be doing so without meeting other diabetics online. Diabetics who hit their own tiny target ranges. Not every day, but often enough to prove that it is at least possible.
Once you understand that the target (whatever you decide that it is) is your own, all the effort required to aim for it, and let's not pretend that is isn't a LOT of effort, somehow becomes much easier.
Edit: Just re-visiting this post after several years and I have realised that in the time in between I have altered and changed my targets on more than one occasion. And this is fine too. Currently I'm finding 4-10 gives me less opportunity to berate myself over high readings with an additional soft lower limit of 5 which I will treat as if low to give myself a little more wiggle room. What's important is that I feel these are what I have decided to do for me. Not some impossible nonsense handed down from on high.
Posted by Mike on Friday, 11 March 2011
Posted by Beth on Sunday, 27 February 2011
DIABETES V. HOMEWORK
It's school tomorrow so this sudden splurt of blogging is going to stop and a whole load more homework is bound to be rolling in. Oddly enough having a diabetic dad can actually effect my homework. Ish. The other day I was doing some I.T. homework (not for very long admittedly), when I realised I had been working on the file still attached to the email. Oops. So when I discovered this and saved it onto my account the work I had just been doing disappeared. I called Dad to come and help me, but he was all over the place with his levels and consequently very grumpy. This meant when he was trying (and failing) to find my missing homework, he got a bit frustrated. He started hammering at the keyboard and snapping at me. It was quite scary actually. I sort of wanted to get Mum but I was kind of scared Dad would smash my laptop up. Eventually he gave up and I ended up redoing that bit of the homework. Never mind.
THE CONFESSION
I don't actually understand what diabetes is. Dad tries to explain it, but ends up using confusing words like glucose etc. I always nod and pretend I understand when really what I'm thinking is 'I have absolutely no idea what you're talking about'. Why can't he just say 'I don't have the right stuff in my blood and this stuff substitues it' or something. Adults, honestly.
I am now on a mission to discover what on earth diabetes is.
B
THE CONFESSION
I don't actually understand what diabetes is. Dad tries to explain it, but ends up using confusing words like glucose etc. I always nod and pretend I understand when really what I'm thinking is 'I have absolutely no idea what you're talking about'. Why can't he just say 'I don't have the right stuff in my blood and this stuff substitues it' or something. Adults, honestly.
I am now on a mission to discover what on earth diabetes is.
B
Posted by Mike on Thursday, 24 February 2011
'HbA1c phenomenon' and feeling grumpy
I have an annual review coming up in April. I know this because I called the hospital a while ago to check I was still on their list (I recently transferred back, having been seen at my GPs for a few years).
I also know it because my blood glucose levels have been running stupidly high recently. This seems to happen to me a lot. As soon as I know I'm in the 3 months running up to the test (HbA1c gives an indication of average BG levels over the last 3 months) it all goes to pot. I've come to think of this as 'HbA1c Phenomenon'.
I've been working hard at getting my diabetes under control for around a year now. When I look at monthly average figures during much of that time they are around 6.9 - 7.1 mmol/L. There's a ready reckoner which suggests your HbA1c if you give it an average BG level for 3 months or so, provided the tests include a decent spread of pre- and post-meal results (which mine now are). There are a fair few of these conversion formulae, but the one I use is:
HbA1c = (BG average+2.52)/1.583
Weekly averages recently have been in the mid 8's. I haven't been doing this badly for about 8 months. I was so hoping for a good A1c. Almost as an 'official' affirmation of the work I've been putting in. Secretly I think I was hoping I'd make it into the elusive 5% club (sub-40 in new mmol/mol numbers), but now I think I'll be lucky to match my last one of 7.1%. If I was still pottering along without paying much attention I'd be happy enough with that (as indeed I was), but when you are working much harder at something it's nice to see some sort of results, and a little frustrating to think that you would have seen those results a month or two ago when you didn't have the test scheduled!
In my heart I know that the HbA1c is a pretty poor indicator of control. I've cheated low numbers before by having enough hypos to cancel out all the highs. But it's the badge which defines you as far as the medical profession is concerned. However inaccurate it is, it's still considered the 'gold standard' indicator. I wanted not only to have better control (which I do) but to have a pleasingly low A1c to match.
So I am trying (and largely failing) not to get too grumpy about this. To breathe deeply, take one test at a time and be happy with how far I've come in the last 12 months.
You never know... the test is weighted to the most recent 4 weeks or so. I might still have a chance to knock a bit off if I can keep my head during March.
I also know it because my blood glucose levels have been running stupidly high recently. This seems to happen to me a lot. As soon as I know I'm in the 3 months running up to the test (HbA1c gives an indication of average BG levels over the last 3 months) it all goes to pot. I've come to think of this as 'HbA1c Phenomenon'.
I've been working hard at getting my diabetes under control for around a year now. When I look at monthly average figures during much of that time they are around 6.9 - 7.1 mmol/L. There's a ready reckoner which suggests your HbA1c if you give it an average BG level for 3 months or so, provided the tests include a decent spread of pre- and post-meal results (which mine now are). There are a fair few of these conversion formulae, but the one I use is:
HbA1c = (BG average+2.52)/1.583
Weekly averages recently have been in the mid 8's. I haven't been doing this badly for about 8 months. I was so hoping for a good A1c. Almost as an 'official' affirmation of the work I've been putting in. Secretly I think I was hoping I'd make it into the elusive 5% club (sub-40 in new mmol/mol numbers), but now I think I'll be lucky to match my last one of 7.1%. If I was still pottering along without paying much attention I'd be happy enough with that (as indeed I was), but when you are working much harder at something it's nice to see some sort of results, and a little frustrating to think that you would have seen those results a month or two ago when you didn't have the test scheduled!
In my heart I know that the HbA1c is a pretty poor indicator of control. I've cheated low numbers before by having enough hypos to cancel out all the highs. But it's the badge which defines you as far as the medical profession is concerned. However inaccurate it is, it's still considered the 'gold standard' indicator. I wanted not only to have better control (which I do) but to have a pleasingly low A1c to match.
So I am trying (and largely failing) not to get too grumpy about this. To breathe deeply, take one test at a time and be happy with how far I've come in the last 12 months.
You never know... the test is weighted to the most recent 4 weeks or so. I might still have a chance to knock a bit off if I can keep my head during March.
Posted by Mike on Friday, 18 February 2011
Guest post on blogs.diabetes.org.uk
I was asked by Diabetes UK to write a guest post for their shiny new blog blogs.diabetes.org.uk.
I wrote it just around the time of this blog's 1 year birthday, and unsurprisingly it became a sort of 'looking back over the last 12 months' thing, a variation of the themes on which I posted here a week or so later.
If you are interested, you can read it on the Diabetes UK blog here: "I still love my pancreas and other things I have learned this year".
I wrote it just around the time of this blog's 1 year birthday, and unsurprisingly it became a sort of 'looking back over the last 12 months' thing, a variation of the themes on which I posted here a week or so later.
If you are interested, you can read it on the Diabetes UK blog here: "I still love my pancreas and other things I have learned this year".
Posted by Mike on Monday, 14 February 2011
My DOC-iversary - 12 months that changed my life
You have changed my life.
It doesn't matter if this is the first blog post you've read or the thousandth. Whether you comment on diabetes forums the world over or lurk in the background of just one. The Diabetes Online Community is so much greater than the sum of its parts, and by reading this, whether you are diabetic yourself or just know someone who is (and frankly these days that is pretty much certain) you can now count yourself an official member of the D-OC. I'll pop a badge in the post to you. Get yourself a 'Blunt Lancet *' tee and wear it with pride.
As Jane wrote on Friday, this weekend is the anniversary of the unfortunate incident that triggered the birth of this blog and my discovery of the support, wisdom and hilarity to be found among online diabetics.
You have helped me to turn a corner with my diabetes. And I didn't even know I needed to turn it.
If you have lived with diabetes for some time and have just got used to 'the way things are', knowing really that this or that is not quite right, but unable to find any way forward. If your doctor seems happy enough with what you are doing, though suggests you should probably 'improve your control a bit', without ever seeming to be able to suggest any practical way to go about that (or at least none that you believe would have any effect). If this is you, as it was me, then take a look around. There are thousands of diabetic lives out there and someone will be going through what you are. Someone will have tried something that might work for you. Someone will post and answer to your forum question that will get you thinking. Someone will be there simply to offer support and understanding for the unfairness and frustration of it all.
In some sense the changes I have made are tiny. The improvements only marginal and fractional. But they have made all the difference to the way I feel about diabetes. Here are my top 5 discoveries from 2010:
1. Get your basal right
You can test this systematically, and until your basal is right everything else will be all over the shop. Your basal profile is not as flat as you have been told, and there are a number of timings and splits of dose that will work for different people. For pumpers, basal profiles are almost infinitely tweakable.
2. Count your carbs
Not something I learned this year, but something I was horrified to discover that others were not being taught. Utter madness.
3. Love your pancreas but watch out for your liver
Don't be too hard on your pancreas for rather letting you down on the whole insulin production front. It's still doing all sort of useful things digestion-wise. Your liver on the other hand probably needs a good talking to. Mine has a habit of gleefully dumping glucose into my bloodstream at the most in-opportune moments (dawn phenomenon or Somogyi effect anyone?). This can make test results seem chaotic and confusing.
4. Don't believe the hype
You might have been told which carbs release slowly by a dietician. You might be eating high fibre and low fat with 'heart-healthy' starchy carbs. Unfortunately though there is no way to tell what will happen to your blood glucose levels after eating something without testing on a BG meter. And there is nothing heart-healthy about constant post-meal BG spikes. The difficulty is that everyone is different. What is fine for one person will be a BG diaster for another. There are a lot of things I had believed to be 'safe' which I have dropped from my menu this year following 1 hour and 2 hour post-meal tests. Additionally diets high in carbs seem to lead to high cholesterol levels whether they are low fat or not. Moderation, as with so many things in life, seems to be the key.
5. One test at a time
Jane tells me I'm still learning this one. If you get a rubbish day/week/month of BG levels try not to beat yourself up about it. Write everything down, look for patterns, ask questions. Look online for others who have had a similar experience. Don't make changes too quickly, take your time and see if results are repeatable before you decide what you think is causing what. This is the hardest lesson of all. But I'll keep working at it.
I have an annual review coming up in a few months time. I'll be very interested to see if the improvement I feel in my day-to-day diabetic experience is shown in my HbA1c level.
Here's to the next 12 months of D-OC discovery.
Mike
* Blunt Lancet, 90's diabetic rock supremos created by US blogger Kim. Despite being more than a bit 'made up' you really can get a t-shirt (profits in support of the Diabetes Hands Foundation): www.cafepress.com/BluntLancetMerch
It doesn't matter if this is the first blog post you've read or the thousandth. Whether you comment on diabetes forums the world over or lurk in the background of just one. The Diabetes Online Community is so much greater than the sum of its parts, and by reading this, whether you are diabetic yourself or just know someone who is (and frankly these days that is pretty much certain) you can now count yourself an official member of the D-OC. I'll pop a badge in the post to you. Get yourself a 'Blunt Lancet *' tee and wear it with pride.
As Jane wrote on Friday, this weekend is the anniversary of the unfortunate incident that triggered the birth of this blog and my discovery of the support, wisdom and hilarity to be found among online diabetics.
You have helped me to turn a corner with my diabetes. And I didn't even know I needed to turn it.
If you have lived with diabetes for some time and have just got used to 'the way things are', knowing really that this or that is not quite right, but unable to find any way forward. If your doctor seems happy enough with what you are doing, though suggests you should probably 'improve your control a bit', without ever seeming to be able to suggest any practical way to go about that (or at least none that you believe would have any effect). If this is you, as it was me, then take a look around. There are thousands of diabetic lives out there and someone will be going through what you are. Someone will have tried something that might work for you. Someone will post and answer to your forum question that will get you thinking. Someone will be there simply to offer support and understanding for the unfairness and frustration of it all.
In some sense the changes I have made are tiny. The improvements only marginal and fractional. But they have made all the difference to the way I feel about diabetes. Here are my top 5 discoveries from 2010:
1. Get your basal right
You can test this systematically, and until your basal is right everything else will be all over the shop. Your basal profile is not as flat as you have been told, and there are a number of timings and splits of dose that will work for different people. For pumpers, basal profiles are almost infinitely tweakable.
2. Count your carbs
Not something I learned this year, but something I was horrified to discover that others were not being taught. Utter madness.
3. Love your pancreas but watch out for your liver
Don't be too hard on your pancreas for rather letting you down on the whole insulin production front. It's still doing all sort of useful things digestion-wise. Your liver on the other hand probably needs a good talking to. Mine has a habit of gleefully dumping glucose into my bloodstream at the most in-opportune moments (dawn phenomenon or Somogyi effect anyone?). This can make test results seem chaotic and confusing.
4. Don't believe the hype
You might have been told which carbs release slowly by a dietician. You might be eating high fibre and low fat with 'heart-healthy' starchy carbs. Unfortunately though there is no way to tell what will happen to your blood glucose levels after eating something without testing on a BG meter. And there is nothing heart-healthy about constant post-meal BG spikes. The difficulty is that everyone is different. What is fine for one person will be a BG diaster for another. There are a lot of things I had believed to be 'safe' which I have dropped from my menu this year following 1 hour and 2 hour post-meal tests. Additionally diets high in carbs seem to lead to high cholesterol levels whether they are low fat or not. Moderation, as with so many things in life, seems to be the key.
5. One test at a time
Jane tells me I'm still learning this one. If you get a rubbish day/week/month of BG levels try not to beat yourself up about it. Write everything down, look for patterns, ask questions. Look online for others who have had a similar experience. Don't make changes too quickly, take your time and see if results are repeatable before you decide what you think is causing what. This is the hardest lesson of all. But I'll keep working at it.
I have an annual review coming up in a few months time. I'll be very interested to see if the improvement I feel in my day-to-day diabetic experience is shown in my HbA1c level.
Here's to the next 12 months of D-OC discovery.
Mike
* Blunt Lancet, 90's diabetic rock supremos created by US blogger Kim. Despite being more than a bit 'made up' you really can get a t-shirt (profits in support of the Diabetes Hands Foundation): www.cafepress.com/BluntLancetMerch
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