Diabetes Wise

CGM Reflections

Tomorrow, it will be exactly 18 months since I first got hooked up to Medtronic's original Guardian RT and I got to learn for the first time what truly amazing things my blood sugar could be doing while I wasn't looking.

Back then, the device looked straight out of the 1980s. The monitor was cumbersome and heavy and had a tendency to make a death leap from my waistband more than once a day. The numbers were real-time, but the graphs weren't. To figure out the trend, the true value of this device, you had to scroll back through the last dozen or so numbers and draw a mental picture of where you were going.

But compared to fingersticks alone, compared to what I'd had for the previous 23 years, this thing was a revolution. The drawbacks of irritation from the adhesive and the size of both the transmitter and the monitor were easily outweighed by the information it gave me. And the timing for me could not have been better, coming just days after the diagnosis of Addison's threw a huge spanner into the workings of my diabetes.

From the get-go, I didn't want to not have regular access to this technology ever again. I couldn't see that I'd ever really want to be without out. That still holds true, but I cannot believe it was only 18 months ago. Things have come so far since then.

After starting up with the Guardian I cycled between that and a loaner 722 until I got my own 522 pump which I've been using for the last 14 months. The real-time graphs were as much of a revolutionary step-up from the numbers alone as the numbers alone had been from fingerstick data. We've all heard the analogy about it being like driving with the windshield uncovered for the first time. It's true.

CGM really has made an enormous difference to me. Right back at the beginning it was the biggest single thing in helping me retrieve my confidence, bruised and battered as it was from  countless episodes of severe hypoglycaemia  as my cortisol deficiency went undiagnosed.  It was the major reason I went back to work so soon and makes a regular difference to my working life now.

As a dentist, I cannot afford to be hypoglycaemic on the job. For my patients' safety. For my safety and the safety of the people who work with me. Even if a high-speed drill in hypoglycaemic hands weren't dangerous, how would I be able to do a good job, a job up to my high standards, if my brain were fogged by a low? I couldn't, plain and simple.

Previously, my only defence against lows was regular fingersticks, prevention and relying on my symptoms to alert me to quick drops between tests. With my hypoglycaemia awareness shot by recurrent lows and so many years of diabetes, I lost that weapon. The only other way I could see to cope was letting myself run higher, much higher, during the working day. That would have meat trading the immediate risks for the long term risk of my practicing life being cut short by complications such as retinopathy and neuropathy, as well as making me feel awful.

I do run looser targets at work, for safety's sake and because my mind is very focused on the job and not always so much on diabetes. But with my CGM in pocket to alert me when things are amiss, I feel safer. Without the worry of diabetes I stay focused and my patients get the best of me. And the targets are still tight enough that I haven't had an A1c over 6.6 in the last 18 months.

And outside of work, it makes innumerable differences too. I've written before about the difference between a blood sugar of 5.5 that is stable versus one that is going down or up. More than 50% of my bolus calculations are now influenced by the information about where I'm coming from and likely to be going to. Travelling across time zones, working out at the gym and living alone are all helped by the numbers from my CGM.

Of course I can, and did, do all these things without that information. Many people lived with diabetes long before even fingersticks were available. Anyone who strives for good control wouldn't dream of doing that now, and I'm beginning to feel the same about CGM. After all, a healthy body knows where it's at at all times, why shouldn't I?

There are drawbacks, of course. A recurrent problem is irritation from the transmitter rubbing on my skin, although I've recently begun placing a piece of gauze under the transmitter, which seems to help. I've written before about accuracy, and while it's true that I have few problems and I find the trend is almost always right, screwy sensors do happen.

I can get burned out by it too. Rob recently described my pump/CGM combo as a little bit like being permanently attached to a Tamogotchi pet, and it was a good analogy. When the fifth or sixth alert of the day starts up, I sometimes want to kill it! Sometimes when my numbers stay consistently above the high target range I get frustrated much more easily than I would by a series of fingersticks showing the same trend.

The bottom line though is that I still love it. The breaks I take these days are mainly for financial reasons. Eighteen months on, I'm still no nearer securing funding but the longer I go on using CGM, the happier I am about choosing to forgo something else and instead spend the money on sensors. I can't really give it a much higher endorsement than that.

 

Habit Forming

NaBloPoMo was habit forming.

Twice this weekend, on both Saturday and Sunday, I found myself thinking "I haven't posted yet!" And "What am I going to post about?" Even, whilst out with friends at 11 o'clock on Saturday night, "Eeek, how am I going to be able to post before midnight?"

Perhaps I'm addicted to this now. Or perhaps I'm just deeply tragic?

I'm the kind of person who forms habits slowly, but once they are there, they're hard to break.

Take the codes for new bottles of test strips. This weekend I discovered I'd gone through a whole bottle on the wrong code.

"I must put in the new code... I must put in the new code" I chanted to myself as I opened a new box of strips.

"Code 16... code 16... code 16."

Shoved the strip into the meter.

Click. Thunk.

Drop of blood on the strip.

Test complete.

Doh!

Didn't change the damn code! As soon as that strip is in the meter, I'm on autopilot to get the blood on the strip and the test done. It is such an ingrained habit, that no matter how much I try to remind myself to do it, I always forget to change the code.

Reassuringly, when I tested again after changing the code, the result was just 0.2mmol different (around 3mg/dL). But still,  perhaps it is time I got one of those 'no code' meters.

Just a thought.

A Different Perspective

Almost two weeks ago, when I wrote this, I was thoroughly fed up of the invasion of test strips, pump caps and other diabetes paraphernalia into my life. I joked with a friend that if I ever commit  a crime, I'll make it easy for forensics to find DNA evidence to connect me to the scene: there will be a little trail of discarded test strips, each with a smudge of my blood on.

It does wear me down. Far more than having a pump attached to me. Even more than performing the tests that spawn the strips. I'm not sure why, but perhaps it is because I seem powerless to stop their spread - more powerless even than I am to control my blood sugars!

But today, walking along a busy London street, I glanced at the floor and noticed a discarded test strip. A few paces on and there was another. Then a third.

I knew they weren't mine. They weren't the brand that I use.

Seeing those discarded strips so close to where I spend I my working day, they were just another reminder that no matter how isolated living with diabetes may seem, there are many others close by tackling the same issues.

I'm lucky to have found all the people who blog about diabetes, and found others through various organisations and internet sites, but maybe my own used test strips may send a message of comfort for someone who is struggling with the burden alone.

A very different perspective indeed.

Is there anywhere they don't end up?

I was cleaning out the filter in the dishwasher earlier. Along with a stray food scrap I found a used test strip and one of those plastic Quick-Set donut caps.

And rinsing the shampoo out of my hair in the shower the other morning, I glanced down to see a test strip circling the drain.

Is there anywhere this crap doesn't end up?

I can't help but wish for the day when I can ban it from my house. The day when I don't have to rely on this stuff anymore.

The number, the whole number and nothing but the number

Imagine, for a moment, an adult attempting to explain to small child, in appropriate terms, where babies come from. Or how Santa Claus makes it round the whole world in a single night. The course of the conversation will doubtless be punctuated by frequent buts, whys and hows on the part of the child. Small children have an uncanny knack of seeing straight through any confustication and sadly the skill of explaining complex things in simple terms is not widespread.

Imagine, then, trying to explain not only the concept of blood glucose values but also the information CGM and/or knowledge about past and future food and activities adds to those values, to the uninitiated. A comical situation rather like that between a father and his small son could easily ensue. In most areas of daily life, mathematicians aside for a moment, a number is just a number. If someone asks you for three pounds/dollars/groats, three is what they want. But a number in diabetes? Is a number ever just a number?

So let's start with the real basics: Under 4 is low, requiring sugar. Over 8 is high. Or sometimes over 7, or even over 12.  What's that? Why? Well it just depends. Different people have different needs and different situations require different targets. Yes, it is a bit like shooting. We're aiming for a target. Yes, that's right, it sometimes moves.

But anyway, high numbers need insulin. Got that?

OK.

Whats my number now? Well, yes, 3.9 is low and yes, normally that means sugar. But hold on, I just ate 10 minutes ago and look at this line on my CGM - it shows I'm going up. So yes it's low, but no I don't need sugar.

You want me to test your number? You're at 3.5. No, no. That doesn't need sugar either. You see, you don't actually have diabetes, so your body will take care of your numbers for you.

A little later...

See - I came up just fine. I'm 8. No 8 isn't high today. Yes, I see from the graph that it's going up, but I'm just on my way to the gym. So 8 going up very slowly is just fine today.

Later still...
What's that? You want to know what my number is now? Hold on...

Oooh... 5.5.

Yes, yes... I think you understood the basics and yes, that is a normal number. But look, my pump says I still have one whole unit of active insulin from what I gave earlier and look how far my CGM graph has dropped in the last hour. So I'm normal, but actually I need to eat.

What do you mean you think I' making it up as I go along? I'm really not. It's quite simple and logical when you look at it. We have low numbers and high numbers. But we also have normal numbers that can act like low numbers if we are falling, and normal numbers that can act like high numbers if we are rising. And a high number isn't always a high number, for example if we are about to drive a long way or do something where it is really important we don't have a low. And a falling number is...

What's that? You just want to know where babies come from? Now that's a much easier question to answer...

The Mystery of the Missing Meter

I'm currently still on vacation in San Francisco, taking advantage of the free WiFi in the air-conditioned comfort of the Metreon. It may just be the result of dragging my luggage around SF on Muni and Bart between a friend's house and my brother's office, but the Bay Area natural air-con doesn't seem to be going at full strength today! This is just one of several stories I have to share from my trip.And thanks for all the advice about Cheesecake Factory. I haven't risked a re-run yet, but there is always tonight...

Last week we had a pretty full day planned up at Fisherman's Wharf. We'd taken advantage of the San Francisco City Pass which included both a Bay Cruise with Blue and Gold Fleet and a ticket to the Aquarium of the Bay. I had booked us tickets on an evening tour to Alcatraz and also hoped to fit in some time at the awesome Musee Mechanique and a meal to showcase the madness of Bubba Gump to R. An exciting day, but the kind of tightly planned schedule that just doesn't leave room for things going wrong. Certainly doesn't benefit from the invitation of diabetes t spoil the fun.

We started out with a delicious pancake breakfast and, for me, a pretty hefty bolus to cover all that syrup:

 

Next up we took the F-Line streetcar round to Pier 39 and started out our day with the Bay Cruise, sailing right out beneath the Golden Gate Bridge and around Alcatraz Island

I could have sworn to you that at some point on that cruise I checked my blood sugar and it seemed to have come down nicely from breakfast. I'd have bet against a dunking in the freezing water of the bay that I did it.

Back on dry land, we took a look around some of the shops and other tourist tat on Pier 39 before heading into the Aquarium where we enjoyed tunnels through the tanks, starfish and jellyfish and sea anemones:

During our time in the Aquarium, I rummaged through my backpack several times, searching for tissues, my phone and money, but I thought I was careful not to let anything drop out the pen bag.

It was shortly afterward, as we were waiting for our table at Bubba Gump for a very late lunch (to fit in with a schedule of late dinner post-Alcatraz visit) that my CGM alerted me that it needed a calibration within two hours. As I checked the screen I noticed a double down arrow indicating a fast fall. No problem, we'd be eating fairly soon but I'd just do a fingerstick to check...

I looked everywhere. I emptied every pocket in my backpack, piling everything up on the bench beside me and growing ever more frantic as the search yielded no test kit.

Damn.

I needed the test kit then. I needed to check I wasn't already low. I needed to calibrate my CGM well before we would get back to the hotel. We wanted to eat, and as R pointed out, Bubba Gump's isn't the kind of food you can tackle without means to know accurately what your blood sugar is.

I wanted to wing it, rely on the CGM and keep going. We were on the wrong side of town to go back and pick up my spare kit. I didn't want to ruin the day, but deep down I knew that the day would be ruined anyway if I couldn't stop worrying what level I was at or if I purposefully tried to run high to avoid a low - I'd feel awful.

It was only then that I turned to R and started to cry.

"I just can't believe I've lost it." I said, as it hit me that this is the little Freestyle Flash that  got in pre-launch trial in the UK some three or four years ago and that I've used ever since. My blue Multiclix, a present from a friend and very much preferable to the white version sold in the UK, was in that kit. And all my data. All the numbers from the trip so far that told me how well I'd been working out the time zone change and the pancake breakfasts.

"I'm being pathetic" I sobbed, "but I was really kind of attached to that meter, and I know I tested on the boat earlier. I could have lost it anywhere." I imagined my little kit falling off the side of the boat and swimming to the bottom of the bay or being swept out into the Pacific.

"You're not being pathetic" R said , giving me hug. "I totally understand. Let's go and see if we can find it."

We went back the Aqarium, who were very helpful, even checking the restrooms that were closed for cleaning, but no sign. Next we tried Blue and Gold, who were much less helpful and as we got redirected from person to person, I gave up.

"Come on"I said. "Let's just jump in a cab. This isn't helping and I need a meter now."

A speedy cab ride later we were back at the hotel.

And there, nestling in the bottom of the small black bag I'd taken out to breakfast, was my precious kit. It seems I'd imagined testing on board the boat earlier, which perhaps proves that it is possible to take a least a little vacation from concentrating on diabetes.

And all's well that ends well.

We got back to Fisherman's Wharf, via Cable Car, too late to fit in Bubba Gump ahead of Alcatraz. But Alcatraz was awesome, and afterwards we enjoyed a sunset view from the window with our Bubba Gump Shrimp.

 

I've been keeping a much closer eye on that little black kit for the remainder of our vacation. I won't be leaving it behind again.

Cause and Effect

Oh yes, we did.

Oh yes, I did

Oh dear. Around two hours later I was 14.7. That's 266 for my American friends.

Just for the record though, every single bite of that cheesecake was worth every single mmol above my target.

But if anyone knows the secret bolus formula for eating at Cheesecake Factory without a ridiculous spike, please let me have it!

Do you want a seat with that?

A familiar scene in a Jubilee Line Underground carriage this afternoon:  two women boarding the train at the exact same time, each from one of the two sets of central doors. Just one free seat in the central section. Each locks eyes with the seat then briefly with each other. A three second mental struggle ensues before the seat is claimed by the speedier mover. The doors bleep loudly to warn of their closing followed by the winding noise as the train begins to move and accelerates into the blackness of the tunnel.

The defeated party, I leaned back against the perch seat in the wheelchair/pushchair area adjacent to the seat I'd missed out on. Pulling my bag across my body, I rummaged inside for my test kit. My thoughts had turned to the calibration alert my pump had given me some half an hour earlier and to the Sicilian Lemon chocolate bar in my bag I was hoping to eat.

I unzipped the case, popped the lid from the test strip bottle and inserted a strip. As I readied my Multiclix, I heard a voice:

"Oh I'm so sorry. Do you need a seat?"

It took a moment fro me to realise that the person was speaking to me. The person who'd narrowly defeated in reaching the seat on my right.

I smiled my thanks, but shook my head. "No, I'm fine thanks."

And I was . The result was 6.4 (115)

A 1.8 unit bolus later, as I unwrapped my chocolate, I got to wondering.

Did she have no idea what I was doing, but presumed it to be something medical and something that therefore made me in some way less able to stand and more in need of her seat?

Or perhaps she did know what I was doing, and perceived it to be a fiddly, difficult procedure that would be easier to perform while sitting down rather than an almost thoughtless, effortless task than I could probably do in my sleep.

Or did she know what I was doing, know that it represented diabetes and so perceive me as in some way disabled, or less capable of standing on a speeding tube train?

Don't get me wrong. In the day and age where heavily pregnant women are often ignored in packed carriages, and  where I frequently struggled to get a seat when I had my leg in a plaster cast, the fact that someone is considerate enough to offer their seat to someone else, even though I didn't need it, is refreshing.

But I really hope her reasoning wasn't the last one.

MiniLink Has Landed: CGM Updates

I'm still using the Paradigm REAL-Time system, although I've switched from my clear 722 to a charcoal 522.

I still love continuous monitoring.

I still very, very lucky to have the opportunity to use it everyday.

Yes, I agree it has its problems an it can only get better.

Personally, I have very few issues with accuracy and even at the times when the numbers are not right on, I have never seen a trend be wrong. Since this thing is all about treating the trend, that is more than good enough for me.

And yes, it is expensive. I didn't have to purchase my own hardware, but I do self-fund my sensors.  If I was using one every three days that would be more than I could manage. But I'm not. I now routinely use each sensor for two whole weeks. When I remove them there is little more than a tiny red bump on my skin.

I've personally managed to avoid alarm burnout too. I use tighter or looser alarm thresholds depending on the circumstances I'm in and I even turn the alarms off completely from time to time. At first sight, the ability to do this may seem strange, but if you're not sure ask a Dexcom user. There is a fixed on low alarm on the Dexcom, and a funky sensor can lead to no end of lost sleep. I also defend this feature since, after all, the original CGMS collected data for three days that you couldn't even see until afterward, nevermind have alarms for, and yet that was still a very useful tool.

And the Paradigm system is getting better: The MiniLink.

It actually arrived a couple of months ago, during my blogging hiatus. But this little critter is just too cool to go totally unblogged.

Why?

Because this thing is truly tiny:

Especially when compared to the original Gen 1 Transmitter, which not only has the wire to connect to the sensor, but is also considerably thicker than the MiniLink.

It isn't without it's drawbacks though, the biggest one being its lack of flexibility. The wire on the original was irritating, but at least it meant that once the sensor was in, you had some choice about where exactly you stuck the rest of its bulk. With the MiniLink once the sensor is in, there is only one position for it to go, dictated by the sensor position. If you end up with the MiniLink digging into you every time you bend forwards, or showing trough your favourite outfit, there is no way to change it without having to trash the (expensive) sensor.

Also - notice the dressing over the sensor and MiniLink in the pictures. Medtronic have advertised the MiniLink as being adhesive free. For all those of us who suffered extreme irritation from the adhesive patches used to hold the old transmitter in place, this was a great selling point. Sadly, it's a no go. The MiniLink itself can easily get caught, pulling the sensor out with it. And if you want to extend your sensor life, the little bit of adhesive on the sensor itself isn't going to hold all that long, especially with bathing and swimming. Originally I had trouble covering the MiniLink with just one IV3000, but I've since learned that a diagonal angulation does the trick, which is a plus.

Two other things I've learned about the Paradigm system:

1. You can get around the day seven "Lost Sensor" alarm.
With the (original) Guardian RT, you could continue restarting the new sensor every three days for as long as you wanted. Well within reason. The only drawback was that you had to wait for a 2 hour initialisation every three days. When I moved on to the Paradigm REAL-Time it was great not to have this. Just select new sensor  and be good to go again in fifteen minutes.

Until day seven, that is.

Without fail, a "Weak Signal" alarm, followed by a "Lost Sensor" alarm will occur on day seven, and no amount of restarting will get it to go again.

For several months I continued under the misapprehension that you couldn't get around this; that Medtronic had somehow built in this feature to stop sensors being extended beyond seven days, and so improve their revenue from sensor sales.

Oh cynical me.

Turns out if you just disconnect the sensor from the transmitter/MiniLink and reconnect, you can go on for another seven days, albeit with that two hour initialisation period.

Sadly, this is another drawback of the MiniLink. It won't reconnect to the sensor at day seven if it isn't charged. Charging is remarkably quick. You plug it in to a little blue pod that holds a AAA battery and within 10 minutes or so, the charge is complete. The drawback is if your sensor end occurs when you are miles from your charger.

Just another bit of kit I now carry pretty much everywhere!

2. You can get going again even quicker at the day 3 and day 6 restarts

Initially, when I restated the sensor at day three, I would wait patiently for it to ask me for a calibration meter reading. This itself could take five - ten minutes and data readings followed 15 minutes later. The typical gap in data was 15-25 minutes.

One evening, after restarting, I realised I had not been asked for meter reading. When I checked the screen I saw that data had been coming through for a while. It then dawned on me that I had sent a calibration reading to the sensor a few minutes before it ended, having forgotten its time was due. The system had used that calibration and had skipped just a single data point.

Obviously you can't always get a number in just before sensor end, but what you can do is input a number immediately after restarting. You'll get an on-screen message saying the sensor isn't ready and the value won't be used, but ignore it, it's lying!

I now typically have just 3 missing data points at restart, and don't have to hang around waiting to be asked for that number.

You can probably guess, I won't be giving up my Paradigm REAL-Time anytime soon.

Lucky Idiot

“Come ooooon…..” I whined, zipped into my coat practically before my boy, R, was dry from the shower. “I’m reeeeeally hungry now”, pointedly putting my boots on as he tried to brush his teeth.

That should have been clue number one, the raging hunger. Fair enough it was already past one o’clock and getting late for lunch But then, we hadn’t eaten breakfast until gone eleven. This was pretty excessive hunger.

By the time we were standing, well wrapped up against the cold, at the bus stop outside my gastric juices were foaming and gurgling and my stomach was beginning to ache. As we sat on the bus the ache turned to nausea, my head beginning to throb ever so slightly.

We stepped off the first bus, waiting for our second ride into Greenwich, and I leaned against the wall to steady myself.

“I don’t feel hungry anymore” I muttered. “I just feel really ill.”

“I guess” I added, almost as an afterthought, “I’d better test my blood sugar, to make sure it isn’t that.”

I fumbled with cold hands in my bag, withdrawing the black zippered case, flipping it open, inserting a strip and applying blood. I watched the little lines dart round in a square shape on the screen of my Freestyle Mini for what felt like an interminable period - something that almost invariably pre-empts a high result.

20.1

“Shit. I’m really high.”

“How high?” R asked as I’m glancing down at the screen of my 522, first cursing it for not warning me, then cursing myself as I realised mistake number one: having earlier silenced a pump alarm without really taking in what it was telling me – that I was already high and on the way up back then.

“Pretty high.” I replied

“Yeah, how high is pretty high?” he asked, without a hint of accusation.

“Twenty. That’s why I was so hungry, and why I now feel so sick”

“What do you want to do?” he asked gently, after guiding me to a seat, buying me a bottle of water and assuring me that no, it really didn’t matter if I was sick right there on the pavement, yes he would hold my hair, and no my breath didn’t smell like pear drops. “You want me to get you home?”

I shook my head.

I made him sit there in the freezing cold, arms wrapped around me as much to keep me warm as to support me, watching buses that would take us where we wanted to be go flying past, for a full thirty minutes as we waited for the insulin to kick in, the sick feeling to go away and normality to return.

“I’m sorry” I mumbled, more than once.

“It’s ok, it’s not your fault” he assured me.

But I think it was. Earlier I’d made the elementary mistake of forgetting to reconnect my pump after disconnecting it. I’d compounded the error by not actually checking my blood sugar at that point, or attempting to bolus for missed basal. I’d well and truly wrecked any chance of getting out of the situation by failing to properly acknowledge the earlier high alert. All of which goes to show that both a pump and a continuous monitor are only as good as the person using them.

“I could have reminded you too though” was his response. “And next time I will. It can be my responsibility as much as yours.”

This crappy situation had a silver lining. As I started to feel better I smiled to myself, really happy to have found someone prepared to embrace this head on.

Sometimes, at least as far as diabetes is concerned, I'm an idiot.

But I feel like a very lucky idiot.

Changing Buses at The Elephant

Travelling on London's public transport in the 35 degree heat we had last week is not fun. None of London Transport - with the exception of a few of the modernised suburban rail links - is air conditioned. The tube in particular is a nightmare. Would I be being too graphic if I described being packed in like a sardine with your nose in some unknown sweaty commuter's armpit, and the risk of getting stuck in a tunnel at any time? Probably, so I'll gloss over it. But that is why I choose to travel by bus in the summer as often as possible.

But then, so does half of London.

And changing buses at the The Elephant is bad enough at the best of times.

For starters, seven different routes use my stop. There are so many chances to miss the bus I need: It flies past a line of those already stopped, not realising I want to get on; it stops right at the back of a long line of waiting buses and pulls away before I've reached it; oh, and half the other people at that stop want my bus too, and there simply isn't room for all of us.

Changing buses at The Elephant in 35 degree heat whilst on crutches is particularly bad.

Changing buses at The Elephant in 35 degree heat whilst on crutches and hypoglycaemic is impossible. It's a proven fact.

And you know, sitting down on London's pavements isn't a good idea. I love London, but you only have to visit any other city in the world to realise how dirty it is. Yes, especially The Elephant - if you visited the link above, don't be fooled,  it is currently little more than a giant tatty roundabout, with a hideous red shopping centre at its heart.

Perhaps I looked a peculiar site sitting there with the Guardian periodically wailing like a banshee and tears of frustration - at being low again, at being unable to accomplish the simple task of getting on a bus to go home - streaming down my face, throwing the contents of my bag into a heap in a desperate search for glucose tablets.

The only good thing about The Elephant is that anything goes.

So I'm sure nobody really batted an eyelid.

Guardian Angel

Last week  may have been a nightmare in many ways but it did, at least, have a positive ending.

Thanks to the unbelieveable generosity of an acquaintance I met at a London meeting of members of Insulin Pumpers UK, since about one hour after after my discharge from hospital last Friday evening, I have been watched over by a Guardian: A Guardian RT.

After a week of intractable hypoglycaemia and being reduced to the point where I've lost all hypo signs, nevermind warning signs - I'm currently concious or I'm not, that is the only distinction - it is great to have an extra pair of eyes watching my blood sugars.

It is fantastic to have some additional piece of mind.

Best of all it is great that I have so quickly become abe to trust the RT where Low Alerts are concerned. With  very conservatively set alert level, it hasn't missed one yet and I am now able to catch up on much needed sleep to combat the fatigue caused by a combination of Addison's itself and time in hospital, without having to set my alarm for every 90 minutes just to check I haven't dropped below 2 again.

Right now, this was just what I needed.

For the record: I have not deprived anyone else of their monitor - the lady concerned has just upgraded to a 522. And the other good thing? I'm able to get the sensors from the US at $40 a pop - roughly £22. The UK price is £52 - roughly $95. The prohibitive cost of the sensors is the main reason I can't currently get my own Guardian RT, or consider the 522/722 as an option when it is released here soon.

The biggest drawback: I'm going to miss this thing when I have to give it back.

The Monster Unleashed

I suppose I shouldn't be embarrassed by what happened this morning, but I certainly can't help feeling  thoroughly ashamed at how rude I must have seemed. In front of a whole queue of people.

I knew I was hypoglycaemic before I even got off the bus. A test confirmed: 2.3 (41). A frantic rummage in my bag turned up my tube of glucose tablets.

With one tablet in it.

Damn.

How could I have forgotten to fill it up? I know I'm only human, and these things happen, but why did I have to be hypoglycaemic at a time when I had just four grams of carbs on me? It seemed like a cruel joke on the part of fate.

I was on my way to hospital for a non diabetes related appointment. Fortunately there is a branch of WHSmiths right inside the entrance to the hospital. I grabbed a bottle of Lucozade and, knowing I still had a lot of active insulin on board, (which was a remarkably coherent thought given that ten minutes including a five minute walk to the hospital had passed since the test and I was probably now even lower) a cereal bar.

I joined the queue.

I'm always told that queueing is a remarkably English thing to do. That doesn't mean we enjoy it, just that we do it without question. We even form queues when we don't really know what we are queueing for. But this queue had to be the slowest moving queue in England. In fact, it wasn't moving at all. It felt like five minutes passed, though it probably wasn't more than one or two.

If I had been in a logical frame of mind, a non hypoglycaemic frame of mind, then I'd probably just have opened the Lucozade there and then and drunk some. But if I wasn't hypoglycaemic it wouldn't have mattered. Instead, with all the stubborness of hypoglycaemia, my brain hung on to the hard-wired thought that we queue first, then pay, then eat and drink.

So instead, frustrated and impatient with sweat pouring off my brow and legs turning to jelly, I did something totally stupid: I marched to the front of the queue, slammed my potential purchases on the counter and declared loudly "I wish you could all get your act together" before storming out of the shop.

This was in a hospital. I'm sure they've seen worse. But only I knew I was hypoglycaemic. The queue of people gawping at my outburst didn't know. The bewildered cashier, who probably had no idea what she'd done wrong, didn't know.

They probably just thought I was rude and inconsiderate, and breaking the cardinal rule of being patient in a queue, waiting your turn.

And worst of all?

I had to swallow my pride two minutes later and return to the very same shop, the only one available, retrieve a bottle of Lucozade and go to the counter, thankfully now queue-less, to pay.

I placed my purchases on the counter, accompanied by a few drops of the sweat coursing from my face. With shaky hands I threw a five pound note at the cashier and grabbed the Lucozade back before she even had a chance to scan the barcode or think about my change.

But I couldn't get the damn bottle open. My hands were shaking too much.

The cashier looked at me. Wordlessly she took the bottle from me and opened it.

"Are you OK?" she asked. I shook my head, tears adding themselves to the sweat on my face.

"It's OK. Drink some more" she urged. "You're shaking really badly. Do you need a chair?"

I shook my head again, this time mumbling "I just need sugar"

"It's OK" she repeated "Don't worry, you just take your time"

I couldn't believe her kindness. Her rationality. Her total understanding. Perhaps she recognised my hypo. Perhaps has diabetes herself. Perhaps she has a relative with diabetes, or her best friend has it. I'll never know what made her just get it, but alongside being incredibly grateful that she did I can't help feeling all the more guilty and ashamed for my outburst of rudeness.

I'm cursing the monster inside me, and hypoglycamia for unleashing it.

A Not So Nice Surprise

Where there is good, there is... not so good.

A surprise bg test result of 17.5 (315)

Ok, the result was not a total surprise, because I felt high. But being that high definitely hit me out-of-the-blue.

I had to take my pump off earlier. Right before I disconnected I was 7.9 (140). I took a correction to bring me to 5 (90) and added 0.5 units. In the end, I was disconnected for a little over an hour. I reconnected and gave myself another 0.5 unit bolus. I'll admit, I didn't test because I was in a hurry. When I tested 30 minutes later, I was at 6.8 (122) and an hour an half after that 6.4 (115)

Caro 1, Diabetes 0

Until three hours after that, when I got the 17.5 (315)

Why?

And why, diabetes, do you have to insist on kicking me in the teeth after I've won a small victory: tamed you, and kept you down as I negotiate an obstacle?

I don't like your surprises, diabetes.

I prefer nice surprises

Stupid Diabetes, Stupid Me

On Saturday night  I had plans to meet and stay with a friend in Chelmsford, a 30 minute train ride from Liverpool Street station, which in turn is a 40 minute bus ride from my house. Only, the journey didn't quite go as planned.

It started off perfectly. I didn't have to wait long for a bus, something which is still at times a hit and miss affair. I arrived at Liverpool Street with time to spare before my train. I bought my ticket. I decided to do a quick bg check...

No kit.

For a fraction of a second, sitting in the middle of a busy London station, with my belongings strewn out of my bag after a desperate search, it crossed my mind to screw it, just this once. To take a chance, take a little less insulin and hope that everything would be ok. But of course, it was only a fraction of a second, because knowing my blood glucose value, or at least having the means to know, is such an important, integral part of my life that I couldn't possibly not have that ability for nearly 24 hours. Especially a 24 hours in which pizza and a few glasses of wine were likely to feature.

For a much longer period of time I wanted to sit there and cry. To curse myself for being so stupid as to forget it - something I can't ever remember doing before. I wanted to lie down right there on the floor of the station and throw a hissy fit at diabetes, not allowing me to forget about it for even one second, because if I do I end up doing something this monumentally stupid. I wanted to scream without caring what strangers thought, or if the police came to take me away.

Of course I didn't. I went home to retrieve the kit. And I reached my final destination almost an hour and a half later than originally planned.

Stupid diabetes.

What the...?

Incident Number One

Feeling a little on the low side, I grab my trusty Freestyle Mini (aka Flash) to test.

Result? 5.9 (106)

Note: I've been descending into impaired hypoglycaemia awareness for a while, and really don't trust how I feel too much right now. But I do feel odd. Let's repeat that test.

Result? 1.3 (23)

What the...?

To be honest, I'm surprised that I was still concious. This wouldn't be so mad if I hadn't done the repeat test using the same finger, without washing my hands and only 30 seconds after the first test. Otherwise I'd just have laughed that I must've had something on my hands to give a screwy reult.

I didn't hang around to do a third confirmatory test, figuring I could be dropped on the floor before I even got the result. But considering that 15g, probably more like 20g, of carbs and 15 minutes later I was still only at around 3.3 (60) on two different meters, I'm guessing that 1.3 was on the money.

I'm with Allison  on this one!

Incident Number Two

Just over two hours after dinner, I test.

Result 9.8 (176) but my pump tells me that the insulin-on-board will bring me down to a nice 5.5 (100) or thereabouts before bed.

Fast forward to bedtime, around an hour and a half later. Test again.

Result? 16.6 (298)

What the...?

Let's get this straight. This was no high fat or high protein dinner. This was straightforward food I cope with everyday. There was no stress or anything else going on. Just a perfectly normal evening. There is no air in the pump tubing, the infusion set is around a day old and has been working fine. Looks fine, feels fine. I bolus 3 units, and fall asleep.

Fast forward to 3am: I wake up with that thirst that is indescribable to anyone who doesn't have diabetes. Fumbling for the test kit beside my bed, getting the back light on so I can avoid turing on the main light, I test.

Result? 20.1 (362)

What the...?

I have to give in, put the light on, check the pump all over again. Still seems fine, even give it a good prime. Damn. Get a syringe and Humalog out of the test kit case. I am not changing the infusion set at 3am, when I'm half asleep. (Did I tell you I'm stubborn?) So I whack in eight units. My correction factor below 11mmol/l is 1:5, this should rise to around 1:2.5 at these kind of levels. This technically means my eight units is enough to knock me down to nothing.

It is the middle of the night. I'm not sensible enough to check for ketones on my trip to the bathroom. Nor am I sensible enough to set an alarm for a couple of hours time after downing two glasses of water. I go back to sleep and wake up at 7am with a desperate need to pee. But the first thing I do is test.

Result? 14 (252)

Now I'm really serious: What the fuck?

I took EIGHT units of insulin, with a SYRINGE!

How can I possibly be 14?

I finally relented, and changed that infusion set. There was nothing wrong with it when I took it out. No kinks, no blood in the cannula. So I'm currently cruising along at a basal +50% with around 8 units on board waiting for a big crash anytime soon.

I have no idea wether incident one and two are somehow related, but that was a crazy 24 hours.

Damn, I hate this thing at times.

Names Stick

It's funny how names, slogans and phrases can stick, the one most commonly cited being 'hoover' for vacuum cleaner. Hoover, was of course a brand, but to this day many people still 'hoover' (with a small h) their carpets.

In my parents' house there are certain phrases that can't be uttered without someone quipping a continuation. "Let's go" is invariably followed by "British Caledonion" in reference to a 1980's ad for British Caledonian Airlines. If anyone mentions what they will be doing "an hour from now" someone always reminds them "you'll wish you'd had one" referring to an ancient slogan, shown prior to the start of films in the cinema, to encourage you to buy, I believe, a hotdog. I say I believe, since this pre-dates my birth, but even I've picked it up.

It isn't much wonder then that names for blood glucose testing can stick. The original home, and indeed hospital bedside, testing strips, the ones that took a huge drop of blood were made by a company called Boehringer Mannheim and hence were called BM Strips. Testing your blood glucose therefore became 'doing a BM'. (Don't even say it, I know what you're thinking!) To this day a number of people, particularly hospital staff or parents who were responsible for their child's diabetes care only during the BM era and have never moved on, still refer to BMs.

If today's blood glucose meters had been the front runners things would be different, quite aside from the fact that it would mean I'd have had the experience of those that went before me, of growing up without the ability to test blood glucose levels at home. Instead of testing blood glucose, or doing a BM, we'd all be 'doing the One Touch' or, better still, 'Freestylin'!!

And Some Things Don't Really Change

Some things keep on forever and ever. No chance to forget.

It seems that since before I can remember I've been getting my blood glucose checked. I've even been doing them myself since before I could do a whole lot of other things like spelling my own name or tying my shoelaces.

Sure, a lot about the process has changed. I was lucky in having a home testing machine from pretty much when they started being common. It was the size of a brick, no kidding. My entire kit - machine, lancer, strips, insulin, syringe, spare cartridge and infusion set, plus some other junk besides takes up less room than this beast did, and doesn't weigh so much either.

The finger pricker was more like an instrument of torture. An arm that swung down, lancet unconcealed, undeniably similar to a guillotine.

The strips took a drop of blood ten times the size of what I need now. The 'brick' took two minutes to count down, with a buzz at one minute to wipe the blood of the strip, and another at two to tell you to shut the big ole door that made up most of the front of the meter. And if it turned a horrible murky blue-green that indicated over 17mmol/l (306mg/dl) you had to add another minute to the whole process to see how much higher it would climb.

But when it comes down to it, the bottom line, I still prick my finger (although with the much kinder Multiclix) at least five times a day, squeeze out a drop of blood (albeit much smaller than it was back in the day) touch it to the strip and wait to see what comes up (although it takes just a few seconds, on a machine that easily fits in my pocket.)

And guess what? I'll be doing this every day if I live to be a hundred, unless a cure comes along in that time. The strange thing is, I guess a small part of me would find that really strange and would probably miss it in at least some small way.