Christmas Day again?!

Today I woke up at 5am. Normally when I wake up around this time I get irritable and annoyed, with the thought that my alarm is not going to be long at the front of my mind This morning was different, a little like Christmas morning when waking up early is only ever a good thing! As a child, anyway… This morning it was with a mixture of excitement and apprehension that I signed into Skype around 6am to await my ‘First Visit’ with Dr. Scheiner’s Integrated Diabetes Service. I wasn’t disappointed.

The appointment began with a face to face with Dr. Scheiner and a nurse, Linda, also a type 1 diabetic. It introductions and questions about Korea and then it was just me and Linda to talk nuts and bolts of daily diabetes care. She had my records from the last few weeks in front of her and kept referring back to them throughout the meeting.

The main things I took away from the meeting were:

• My current target levels are slightly unrealistic. I have been being hard on myself, trying to get my levels within this magic range of 74 – 126. While these are, admittedly, the ranges of perfection, it was nice today to be told that I can relax these limits just slightly: my premeal target should (for now, at least) be between 80-160. After meals, I am looking for a rise of no more than 200. I should also be aiming to have no more than 3 hypoes a week.

• The importance (and method) behind accurate basal testing. Lisa told me that I really need to do some day time bolus tests, especially as my Levemir seems to be holding me fairly stable overnight. To do this, I need to fast over each mealtime on different days. Breakfast-wise, I should have a large snack before bed, then take my morning Levemir dose, but then eat nothing until 11 or so am, testing every so often to check, Over lunch, this would mean an early breakfast before testing intermittently between 11 and late afternoon. Dinner time would be similar: lunch as usual, testing from around 4 and having a late dinner. Doing this will help me to judge whether my basal dose is also steady for the day: the idea being that my blood sugars should vary little with no food or bolus insulin floating around my system.

• As a general day-to-day rule, I should try to leave a 3 hour gap between meals and snacks to avoid topping up the food already in my body, thus not giving my levels time to return to “normal”.

• Where possible exercise (exercise?!) should be done 1 and a half to 2 hours after a meal, and I should reduce my bolus dose for that meal by a third. This is new to me. I always thought that exercise was best done before a meal! But I guess the body needs insulin to feed its muscles and just before a meal insulin levels are too low to do this properly. 

There were a couple of tweaks made to my lunch- and dinner-time ratios too… Now I just need to see how it goes!

By the time I’d reached school I’d received a summary, from Lisa, of all the things we’d talked about.

I am feeling positive and looking forward to the next appointment which I have scheduled for a month’s time. In the meantime I have to send my written records (more detailed! I somewhat trailed off last week…) to Linda every few days for advice on adjustments between now and the next appointment.

I am so grateful I browsed Amazon that day… Just looking to read about other people’s experiences with what I live with every day. If I hadn’t, I wouldn’t have found Dr. Scheiner’s book and as a result, wouldn’t have had this morning’s meeting. It feels like I have some support. And, while I do feel a little frustrated that I am not able to see through the fog myself, I do have the clarity to realize that subjectivity is a huge impairment to this.

My final point for today is that writing this blog is finally starting to help: analysing and recording my blood sugar levels has made me do at least some of it on my own; I am starting to see patterns I couldn't see and making changes myself. I just need some extra help to make sense of it all.

Portion sizes and the GI Index. I have a lot to learn!

I’m feeling a little more positive this week. On Tuesday I had a pretty bad day, but a game of Carcassonne with friends helped me to see the brighter side of life again!

My blood sugars have not been hugely better: last week my standard deviation was303, this week it was 299; last week 16% of readings were in range, this week 19% were (click here for this week's analysis in all it's sugary glory!). Towards the beginning of this week I was waking up in the 300’s, which had a hugely negative impact on life in general. Having attempted to figure out my overnight basal doses a few weeks ago, I had lowered my evening Levemir dose from 18 to 14. It turns out this was far too big an adjustment and resulted in the highs. I then put it up to 16 and had a couple of days of more respectable morning readings.

But my overnight readings are still not level. I never seem to return to the normal range before bed, and I have not yet managed to work out why this is. It could be a number of things, all related to my evening meal:

1. going to bed before my insulin has stopped working (meaning there is still some short-acting insulin to impact on my levels)
2. getting my ratio of insulin:carbs wrong for this meal
3. eating too much
4. my food still being in my system before bed.

Where 1. And 4. are concerned… This could be an issue. I tend to try and leave the recommended three hours after eating before I go to bed, but I know that short-acting insulin can work for longer than this. As for my food, my evening meals are often fairly carb heavy. I normally eat fairly low-fat meals with low GI ratings (brown rice/ pasta as a rule, and lots of veg and beans). I don’t yet understand the intricacies of the way insulin works with different kinds of food but I do know 2 things: low GI foods are absorbed slowly and fat slows down absorption too. Maybe my low GI dinners are not being covered correctly by my insulin dose. It may be that I need top up my ratio or even split my dose.

2. and 3. however I don’t know about… I don’t think I eat THAT much at dinner time. Often because I’ve over-corrected a hypo earlier in the evening and don’t have room (something I only did once this week, progress!). But it may well be that my understanding of portion size is completely skewed. I’ve got a lot of detective work to do!

The other achievement for this week was exercise. Only once, mind, but that’s better than nonce… On Thursday I walked 8km back from school and boy did it feel good! It had a massive impact on my blood sugars too: the next day,  I had 2 hypoes, one almost 24 hours later. Just goes to show how positive an impact it would have if it became a more regular part of my life.

On Friday I had my diabetic clinic with Dr. Kim at the Haeundae Paik Hospital. The appointment was good – we talked about the pump and he has given me the go-ahead, on the condition that I spend 7 days in hospital initially. While for some people this might be the definition of hell, for me this is just what I needed to hear. The pump is going to be hard work at first. If I can be in a controlled environment while my daily doses are calculated and tweaked I think it will give me the confidence to do it independently. At home, the thought wouldn’t really have crossed my mind, but here, so far away from the comfort blanket of England and the NHS, I can’t think of anything better. The only thing, which I, in my whirlwind of excitement didn’t consider, is the cost of 7 days as an in-patient. I may need to start saving now…

Finally this week I am gearing up for my appointment with Dr. Scheiner, about which I am still super excited but the nerves are starting to creep in. In preparation for the phone appointment I had to fill in a 13-page self-assessment form. It was thorough and this makes me hopeful. 

Learning to act my age, about time surely?

This week I have been mostly realizing that I need to start acting my age, not my shoe size.  I don’t mean all the time; sometimes there’s nothing better than behaving like a kid! But, on the flip side, there are plenty of times when, as an adult, you need to step up and take responsibility. I am not very good at doing this! A number of examples have arisen this week; I will share the diabetes one.

This week, in diabetes terms, wasn’t great. I keep on getting confused and making mistakes with my dosing, something that can be rectified by writing them down. But the thing that triggered this post was my eating pattern. I have been hypoing after school and have been consistently over-treating, using the hypoes as an excuse to eat a whole load of stuff that I know I shouldn’t treat low blood sugar with: chocolate mainly. Chocolate is high in fat and the fat slows down the absorption of the carbs. The best thing to treat hypoes with (for me, anyway) is fruit juice, one carton has just the right amount of sugar to raise my blood sugar levels without causing a huge spike, and because it’s liquid it’s absorbed quickly. The thing is, when I am feeling hypoey, my body screams at me for sugar. This leads to a raid of the cupboards and a subsequent binge on anything remotely sugary. I know for a fact that this is a scientific thing, but it doesn’t change the fact that it’s bad for me. Afterwards I feel guilty, about my blood sugars and the amount of food I’ve eaten; I get angry with myself and then invariable take it out on poor J. I also end up with a stratospherically high reading before dinner. This in turn means I have to take a larger dose of insulin with dinner and means I’m struggling to figure out my dinnertime ratios and my overnight basal dose.

I have gotten away with a lot in my life and I don’t think I truly appreciated this until now. As a kid I think I was pretty normal, but then once I had been diagnosed with diabetes everything changed. I mean, of course it did! It was traumatic for me, and for those around me. And the people around me all dealt with it in different ways. I remember visitors when I was in hospital: some were fascinated by the needles and the blood tests; others were horrified (one nearly fainted!); and some I don’t really remember at all. And the reactions, of course, didn’t stop. Now, most people ask lots of questions. Some hone in on the injections, “I could NEVER do that!” Strangers often stare when they see me do a blood test of inject. But among people I talk to there is a common theme of pity: comments about how hard it must be. And yes, it is hard. But equally, it shouldn’t be an excuse for my bad behaviour, which I think it evolved into fairly quickly. Now I know that some of you reading this will tell me off for being hard on myself, but I’m trying not trying to tear myself to pieces, I am trying to be constructively critical. For so many years I have not taken my diabetes seriously. And even now, when I really do try to take it seriously, I still cannot do the things that I know I need to to live a healthy life. Things like eating sensibly, exercising and making changes to my daily diabetes routines. But the thing is, not doing them just leads to me feeling bad about myself and behaving like a spoilt child.

The problem is, I’m no longer a child. There comes a point where excuses need to stop and responsibility needs to start. I am coming to terms with this far too late.

A little mid-week excitement!

A very brief (and unusual!) mid-week post... Special times call for special measures!

This morning, I called Philadelphia. Not on my usual list of things to do at 06:10 on a Thursday. I called Philadelphia to set up a 'Visit' with Dr. Scheiner, the author of the book I so recently discovered.

On further exploration of his website, I found a page dedicated to Type one diabetics with a blurb about 'Intensive Diabetes Care'. I decided to find out more so a week or so ago I emailed and received an email reply within 24 hours saying that I was welcome to call and make an appointment. Which I did. This morning. I have an appointment on February 5th. Eek!

To say I'm excited is an understatement. I mean, I know that ultimately it's down to me to do the day-to-day stuff. However, having some expert support, I hope, will make some difference. It has to, surely? The day-to-day stuff is tricky. And this week I've been slowly recovering from my sniffles and my body seems to be in hibernation mode: each evening I have been stuffing myself with food... Not good for me or my blood sugars. And I know that only I can change this. But: bring on a little knowledge to help me with the science bit!

Update and analysis on Sunday...

Week 2 (13/1/13 - 19/1/13)

Today, at around 2pm, I emerged from what can only be described as a dense fog. A fog which had increasingly descended on me as the week went on. I had a bad week. A bad week diabetes-wise, a not-so-great week work-wise and and pretty yucky week otherwise.

I have just completed and posted this week's analysis, and it's lucky that the fog had already cleared or it would've descended further looking at the numbers I've just crunched!

So, this week, I have had just 25.65% of readings in range. Significantly worse that last week. But, looking back now with a somewhat clear head, I have 2 and a half explanations to at least try to account for some of it. But a warning: those of you who don't want to know about my menstrual cycles need to stop reading here... Those of you who aren't fussed - for medical purposes obviously! - you may continue...

Explanation 1: This weekend I have been ill.. Not really, seriously, life-threateningly ill, but I have had a very sore throat and and what I call the 'sniffles'. Other than being incredibly tired, I didn't feel ill until Friday; funnily enough the time when my blood sugars started behaving better. The thing about illness is that, as a diabetic, your body actually often ends up making you sicker. If your blood sugar levels are high your white blood cells don't fight  infection as well as they should, extra sugar in your blood also helps to feed the viruses or bacteria that are causing the infection and to top it off stress hormones, which are produced when you are ill make insulin less effective. This all adds up to higher blood sugars which exacerbate the whole process. In short, my body has spent, I'm guessing, the majority of the week trying to fight off an infection. Which wouldn't have been so bad if the week hadn't started off so badly in terms of high levels...

Explanation 2: The reason my blood sugars were so high (I think!) at the beginning of the week was because every month, in the days before that-time-of-the-month my blood sugars sky-rocket. This is apparently due to hormones (isn't everything?!) which prevent insulin working as well as it should. As soon as I actually get my period everything seems to settle down; as if by magic, my morning blood sugar suddenly fell yesterday morning and stayed fallen this morning.

Explanation 2.5: Stress. This week has been a tricky one work-wise. Stress is a pain in the butt. It's silent. It's unpredictable. And it affects insulin absorption. Brilliant!

This is why I am writing week 2 off to experience. I am going to wait and see what happens this week. I am going to keep the changes I made the previous week and see if, without all the other hurdles, it's slightly more plain sailing. I will have to wait until next month to see if my hypotheses are correct.

Week 1 (7/01/13 - 12/01/13)

So, I'm finally starting to get my head around how I can use this space meaningfully.

Today, I have analysed last week's blood sugar readings, as planned, and thought about some changes to make for week 2's efforts. I have set up 2 more pages for my blog: a page to record my learnings as I go, and a page to log my weekly analyses. Whether anyone but me will ever read them is immaterial; I'm just hoping it will help me gain more insight into my fluctuations! However, if anyone DOES fancy reading them and putting their two-pence in I will be very grateful as my perspective is, of course, subjectively skewed.

Week 1 then... Overall, my readings were too high; I knew this before I analysed them. I was actually quite surprised that nearly 40% of them were in range. Now I am aware that this is nowhere near large enough as  a percentage, but it's a starting point that is not as near 0 as I would have anticipated. That said, nearly 60% of my readings were too high. That needs to change. Ideally, I am ultimately aiming for no more than 25% of my readings to be higher than my ideal range. Next week, my target is 50%: baby steps.

317 (17.6 in old money) for my highest reading is way too high. However, I only had 1 hypo, which for a back-to-work week is pretty darn good. I need to work on reducing the gap between my highest reading and lowest reading.

Looking at the spread of my results over the days of the week was quite interesting (to me!!) I noticed high mornings, a mixture of before lunch readings, lows after school and a mix at bedtime. To make it manageable for week 2, I am going to set myself the following targets:

1. To test before bed, every night, and on waking to try and figure out my overnight basal dosage.
2. Try to avoid snacks at breaktime (for now) to see the effect on my pre-lunch levels; last week I found even having something with technically no carbohydrates (e.g. a carrot and some tomatoes) made my pre-lunch levels higher than the days I had no snack.
3. To decrease my lunchtime insulin ratio from 0.18:1 to 0.15:1 to try and curb the after school dip.

Let's see how this goes...

New Year's Resolutions, and all that Jazz!

This morning I had a small, but miraculous, breakthrough! But before I share it I will explain its birth.

As per usual, with the start of a new year, my brain went into New Year’s Resolution over drive. I am that person, every year without fail, who vows to improve every last detail of themselves: mind, body and soul. Needless to say that by January 4^th I have fallen off the wagon spectacularly. So this year I decided to try and be a little more resolution-savvy. And so far so good: it’s January 10^th and I’m still strapped in!

My first resolution has had a fairly obvious, but not immediately to me, effect on the second.

1.     To turn off electronic items at 9:00pm

2.     To record my blood sugars, on paper, every day.

The first I decided on as I am always exhausted. This is partly, admittedly, down to my badly-controlled sugar levels, but it’s also due to the fact that I am just very bad at relaxing, I can’t for the life of me switch off. Ever. So reading an article in Zest magazine (I am an avid reader in spite of the fact I barely ever exercise!) and then a similar article in My Diabetes Digital (an electronic diabetes magazine I have just discovered) about the benefits of not over-stimulating your brain before bed, I decided to give it a whirl. So far, the biggest side-effects have been a) scarily vivid dreams (is that a good sign or a bad sign?!) and b) a general attitude towards trying to have a more healthy outlook on life. The latter has, in turn, led to the somewhat knee-jerk reaction of deciding to leave school at a decent time each night. The chain reaction continues… It turns out that leaving school before sunset has quite a positive impact, not only on my board game prowess, but also on my sugar levels…

I mentioned in my last post that I was reading a book by (my new guru) Dr. Gary Scheiner, Think Like a Pancreas. While I haven’t actually read much more it has unwittingly turned into my bible. My second resolution came from statistics quoted in the book (Ok, so not really statistics, more like subjective jargon, but still…): “It’s a fact: people who keep written records have better glucose control than those who don’t.” To be fair, the guy is a doctor… And it was enough to inspire me. According to Scheiner, “successful diabetes management requires proper tools, self-care skills and the right attitude. One or two out of three won’t cut it – all three are necessary.” And the more I think about it, the more I’m inclined to agree.

The first of these I have: a fairly decent set of tools, i.e. a blood glucose meter and insulin pens, a medical team that tries to be helpful, a magical app that saves my brain from calculating ratios every time I eat. I hope, soon, to add a pump to this list. The others were somewhat lacking. I made the assumption that inputting my data and printing it off before my appointments were sufficient to help me keep afloat. It turns out they’re not. When I initially read Dr. Scheiner’s comments about record-keeping (“If you’re sitting there saying, ‘No need. I can just download my thingamabob to the computer. It keeps all the information for me.’ Sorry, bud. At this point there is no good replacement for written record-keeping system.”) I all but sneered. Yeah right. Why would writing stuff down make the least bit of difference? Well. It would seem it does. So why have I been so keen not to do it all my diabetic life?! Why did I not see this before?

It turns out that writing the numbers down, with a pen on paper, works like magic, if you actually do it. And, funnily enough, getting home at a decent hour has a startlingly positive impact on my attitude towards doing this. Who would’ve thought..? Anyway, I started my resolution early, at the end of term last year but in true me-style, couldn’t quite get my arse into gear until the new year was officially upon me. Since then, I have gone through a what’s-the-point-there’s-nothing-to-see-here-phase to this morning’s epiphany.

I have been recording my levels using a daily logsheet adapted from one that Scheiner provided in The Book. Initially I was just getting disheartened. The numbers were all too high and the patterns, over night especially just seemed non-existent. It was then I decided to return to The Book’s guidelines for Fine-Tuning Injected Basal (long-acting or baseline insulin) Doses, paraphrased below:

1.     Have a fairly low-fat dinner and take insulin.

2.     Test blood 3 hours after dinner. If >80 and <250 continue with experiment.

3.     Check blood in the middle of the night and first thing in the morning.

For the first few nights back in Korea, I couldn’t bring myself to set an alarm for 3am. So I made do with toilet-trips when they occurred.

Night one

Before bed: 78

4:30am: 98

Waking: 162

An overall rise of 84mg/dL. Not too hot.

Night two

Before bed: 125 (perfect!)

4:00am: 288 (at which point in injected 4 units of insulin)

Waking: 122 (perfect!)

Without the 4:00am test and insulin, I would have woken up sky-high. As it stands, with the correction dose, my levels were perfect.

Night three

Before bed: 136 (pretty good)

2:30am (with an alarm, which surged adrenaline through my body and made me drop my testing paraphernalia all over the bathroom floor!): 77 – far too low! I had a carton of mango juice.

Waking: 113 (perfect!)

So. The mystery of my erratic overnight blood sugars may, for now at least, be partially solved. Last night’s readings show a dip that shouldn’t be there. So tonight I am going to adjust my basal dose accordingly, by decreasing it by 10%, and see what good that does.

The third of Dr. Scheiner’s top diabetes tips I am currently working on: the right attitude.  This, apparently, consists of: determination, problem solving, persistence, discipline and acceptance. I’ve still got a fair go with that one. Did I say that I was NOT trying to improve every last detail of myself. Maybe I was a little hasty… So while I wait for the angel’s halo to be delivered along with my recently-ordered Carcassone Extension pack (to help bolster the board game prowess further!) I am left repeating Scheiner’s serenity prayer (slightly hysterically): Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.