Diabetes Wise

CGM Approval: The Funding Finish Line

This is a landmark diabetes year for me. My quarter century: Twenty five years of living with the highs and lows, quite literally that type one diabetes brings.

Things have changed a lot in that time. From the type of insulins I use through the regime in which they are administered to the way they are administered. From beginnings of animal insulins in clunky syringes, I've now been using an insulin pump for more than six years.

And the changes in monitoring of blood glucose levels have made what we used to do back then almost unrecognisable. Back then we couldn't have conceived of monitoring systems designed to be worn continuously. This past Monday, though, marked my two year anniversary of using just such a device.

I'm still as committed to, and impressed and amazed by, CGM as I was back on that balmy July evening when, fresh out of hospital with a diagnosis of Addison's Disease, I got hooked up for the first time. I remember the feeling of blinkers being lifted away as I could see for the first time the direction I was heading in.

I'm not sure if I can claim that CGM has improved my A1c and I'm certainly not convinced that I can claim it's saved my life, but it has made an enormous difference. A difference in the number and severity of my low blood sugars. A difference in my confidence to work in the occupation that I do, without putting myself or my patients at risk. It's made a huge day-by-day difference to the quality of the life that I'm living. That is important, because if life must be simplified and stripped bare in order for me to live it healthily, then I can't really see the point. I want a full life and a healthy one.

It didn't take me long to decide that CGM was a tool that I wanted to be a permanent part of my diabetes management system. The problem? This technology is expensive.  I've been very lucky to experience incredible generosity and have had the necessary hardware, a  Medtronic 522 pump, loaned to me (not directly from Medtronic, I must add). But that pump is not my own, and sooner or later will need to be returned. I've also had to pay out of pocket for the sensors from day one. Here in the UK, the original sensor price was a whopping £50 a pop (roughly US$100 at the time). Although there have been price drops since, sensors still remain a significant cost. So I turned my attention to getting it funded by the National Health Service (NHS).

Contrary to what some may think, the NHS is not a free service. Like any other nationalised service, we contribute to the cost through taxation. Essentially, the more tax you pay, the more you contribute and I don't mind admitting that I'm a higher rate tax payer. There are several people who've suggested to me that that fact alone means I must be able to afford to pay for my own CGM. Well, yes, if I really have to - and I have been doing. But it means giving up something else - maybe a hobby, or a holiday, that if it weren't for the chronic health condition I have, I would be able to do. Aside from that,  there is a principle at stake. I've already contributed significantly to the NHS. I work for the NHS, for goodness sake. And finally, if I can't keep my low blood sugars to a minimum and keep myself in reasonable control, I won't be a higher rate tax payer, or working for the NHS in a high-demand field, for very long. I'll be sitting at home, drawing benefits from the state and contributing nothing.

I always knew that I'd have a fight on my hands. I got my original insulin pump prior to centralised guidance on when the NHS should, or should not, pay for an insulin pump, issued by the National Institute of Clinical Excellence, or NICE. Insulin pump funding used to be decided on a case by case basis, demanding that each patient prove they had good reason to benefit. So I tackled CGM the same way. I showed my diabetes team data comparing hypos requiring assistance, ambulance rides and hospital admissions whilst on and off sensors. I showed them how, in my hypo unaware state, CGM caught the majority of lows sooner, made them less severe and more quickly reversed. I talked repeatedly about the difference it made to my life. How it meant I could go to work, and do the job that I love, safely.

I may as well have been talking to a wall. Sure, people seemed impressed with the figures I was giving, but this was "new technology", "unappraised technology", "of no clinical benefit."

What? Had they really actually been looking at my data?

My frustrations mounted with each unsuccessful attempt to get funded. I became unwilling to have periods off the sensors in order to keep showing the difference that it made, and I stopped taking the numbers along to hospital visits. I would end up in tears as new doctors I'd ever met before said things like "Well you know, diabetes is my job, so if you just brought along three months of records, I bet I could fix it. I do it every day. You don't need CGM."

They may meet people with diabetes every day, but they don't live it 24/7. I flared with internal anger at the arrogance that he could change everything in 5 minutes when I'd been failing to change it after months of effort.

Finally, three weeks ago, I got the opportunity to see the top professor at the university hospital where I'm a patient. And she did something none of the others have done. She listened. Really, really listened.

Fresh from the ADA Scientific Sessions, she told me the problem - current clinical studies aren't showing a measurable benefit from CGM.

"But", she said, "that's almost certainly down to patient selection." Her attitude was: "Show me what it can do for you."

So I did.

I showed her graphs of my blood glucose on sensor and off. How off sensor the numbers varied much more wildly, there were more lows, lower lows and lows that lasted longer. I showed pie charts that detailed the umber of readings that were high, low or in range comparing a week on sensor, and a week off. We talked about my hypoglycaemia unawareness and the attempts I'd made to improve it. We went through the number of times I'd needed glucagon (several) while off sensor vs on (attributable to steroid crisis). We talked about the lows that I needed assistance to treat. We talked about the three times paramedics have been called to me in the last year and how each time I wasn't wearing a sensor that particular week. We talked about the effect on my work and how I must run myself higher which doesn't fully alleviate the stress of the potential of lows, but increases the stress about the damage I'm doing to my body. I made it plain that  knew all about the inconvenience of wearing the sensor, the problems with accuracy, how it doesn't make diabetes vanish.

And then she said the magic words: "You've more than convinced me."

So finally, after nearly two years of trying, we have a concrete plan. I've spent the last couple of weeks collecting more data on my lows without a sensor on. I've filled out a whole bunch of questionnaires to quantitatively assess the impact of lows on my life and assess my hypoglycaemia unawareness. Next week, I'll return to the hospital and I'll begin 3 months of fully funded sensor use. At the end of the three months, we'll compare the data looking for an improvement. If the improvement is there, I should be in line to get the funding permanently.

I know there will be an improvement, because I've already seen it for myself.

Whilst I'm not counting my chickens just yet, I finally feel like I'm on the home stretch.

Nineteen

The steady line on my CGM is very pretty. It's very, very flat.

It's just a shame it isn't 14mmol/l (250mg/dL) lower down.

My blood sugar has been sitting steadfastly at 19mmol/l (342mg/dL) for the last nine hours. Nineteen for nine hours.

The recipe for (attempted) correction has included:

• Two correction boluses - a rational 3.7 units (as per Bolus Wizard suggestion) and a rageful additional 5 units when I hadn't budged 90 minutes later.

• Another 5 units via a syringe, plunged angrily into the fleshy bit of my backside where infusion sets never go, as I don't relish sitting on my infusion set for 3 days. Since insulin never goes there, I figured I have no absorption problems.

• A new infusion set, a new reservoir and new insulin, from a brand new bottle.

• A few more correction boluses. Total units delivered since first testing at 19mmol/l = 22units. That's over two thirds of my usual total daily dose.

• Total carbs eaten since that time = 30g. That was my (small) lunch. I haven't eaten dinner, for fear of ending up higher.

• A 200% basal rate for the last 3 hours. So I'm getting double basals right now.

But I'm still 19mmol/l. 19.3mmol/l to be precise.

There has been:

• A lot of water drunk and a lot of trips to the bathroom.

• An awful lot of test strips used.

• A lot of priming and checking of my pump.

• A lot of cursing and getting angry.

• One (but only one) incident of hurling my testing kit across the room in a rage.

• Some double checking with other (two other) meters...

Yep... still at 19mmol/l.

The good thing?

No ketones.

Every cloud, and all that...

In One Piece... Just

I'm back in England after my week on the Italian slopes, and have finally crawled out from beneath the mountain of dirty ski clothes that needed laundering! Fortunately I'm all in one piece, if only just!

I was pleased to discover that I can still ski, although my leg strength isn't quite what it was prior to my ankle injuries, which has clearly had some effect on my technique and ability. I also earned a reputation as a cautious skier, since fear of further injury dented my confidence somewhat and I wasn't quite as keen as they guys in the group to hurl myself down any old black run at the highest speed possible!

It turns out that caution doesn't always pay, though, as I still managed to have two accidents. On the very first afternoon we set off to ski back down to the village. Unbeknown to me, someone had evidently taped a luminous "Snowboarders aim here" sign to the back of my jacket as I was hit by out of control snowboarders not once, not twice, but THREE times on the way down. The third time, just around the corner from the final drop into Sauze, a snowboarder turned across me and ran straight over my ski tips catapulting me in to the air and tearing my calf muscles. The snowboarder riding the chairlift above heard very clearly what I thought of snowboarders at that point! Thanks to wonderful friends, lots of ice and massage, I was back on the slopes the following morning though.

The second accident occurred on Friday while we were over at the resort of Montgenevre, in France, at the far end of the Milky Way ski area. We'd had a pretty good morning, although we accidentally took a complete beginner down a very steep red run with zero visibility due to a sudden snow storm! This was thanks partly to poor signposting and a crappy piste map - what kind of piste map shows higher areas of the resort nearer the bottom of the map than lower ones?! I skiied that run twice, but then came unstuck on another, probably less difficult, red run just before lunch where I hit unexpected ice and twisted my knee. It took until yesterday for the full glory of the bruising to emerge, so I still managed to ski out the week on Saturday.

On Thursday night we enjoyed dinner at the top of the mountain. We played football in ski boots (as difficult as it sounds) and went bum-boarding, which basically involves sitting on a plastic dish and sliding, down the bottom of the empty pistes, before eating a lovely meal. I elected to indulge in the included wine and so, rather than skiing down to the village in the dark, we rode down on a Skidoo. What I didn't realise was that the Skidoo driver was going to take us straight down the same ski run as the skiers. No quiet track through the woods, but straight down steep Red-11 in the pitch dark with  the snow cannons blowing. All I could do was close my eyes and hang on tight! I have to say this was probably the scariest experience of the whole week, far scarier than standing at the top of any black run and realising the only way is down!

Diabetes-wise it was an interesting week. My blood sugars were fairly well behaved, but there is also lots of CGM data that mimics the mountains and valleys we were surrounded by.

I discovered that the CGM alarms are pretty useless when you are skiing. They would invariably go off when I wasn't easily able to stop and deal with them, progresssively escalating to irritating sirens that distracted me from the skiing. After the first day I turned the high and low alerts right off during the day and simply checked my numbers and trends at the beginning and end of every run. I also discovered that keeping my basal rates the same, but not bolusing for food worked well. I ate a fairly standard breakfast, generally stopped for hot chocolate mid-morning and ate a fairly standard lunch. It's the first time I've tried this approach, so I think the jury will be out until I've experimented a bit more with it.

Another thing I learned this week was that keeping tubes of glucose gel in the cargo-style pockets on the side of my ski trousers wasn't a good idea. At some point I must have fallen one of these, leaving me with a very sticky, messy pocket!

The only other significant diabetes happening was when I'd obviously failed to tuck my tubing back in properly after checking my pump on a chairlift. Somehow the tubing got snagged on the chair as I skied off the lift. It twanged back pretty quickly, but not before dislodging my infusion set. I've now added "the top of a mountain" to the list of odd places I've inserted a new infusion set!

Overall it was a fantastic week, even if our hotel rep was something of a prat, the hotel food was less than gourmet and we had to up ridiculously early for both our outward an return flights. It was wonderful skiing and wonderful company, and good to spend a whole week with Rob. To the right is instructor Luciano who patiently tried to beat my bad habit of turning my upper body out of me, and helped me work on perfecting  proper pole plants, so I'm also definitely a better skier now than I was a week ago. Honestly you've got to envy this guy though - he teaches sailing all summer and skiing all winter...

Can't wait for my next snow fix!

Hic... Hic... Hiccup

All my life, or at least for as long as I can remember, I've experienced regular bouts of hiccups. Unfortunately there is nothing quiet, subtle or ladylike about my hiccups. They don't make a gentle little gurgling hiccup noise either. These are violent, rumbling beasts, lurching up from my diaphragm - more of a HUUUURK.... HUUUURK.

They drive my mum to distraction when they happen in her company. I once had an attack on a tube train and after a few minutes, half the carriage were trying to restrain their mirth. An ex-boyfriend had to excuse himself from the table at a restaurant as he was unable to control himself laughing at me, and thought it bad enough that I was already making a spectacle of the pair of us!

My record hiccuping attack?

It lasted a full hour!

And once I've had one set of the hiccups, you can bet I'll experience another, or sometimes several, within the next 24 hours.

I've long suspected that there are triggers for my hiccups. Alcohol, especially beer, is an obvious one. But what about blood sugars? I've been harbouring a sneaking suspicion that high blood sugars may set me off. Over the last few months, I've been trying to conduct a (very unscientific) piece of research by testing my blood glucose every time my diaphragm twitches.

So far there has been a strong positive connection between high numbers and the first set of hiccups in any given day. After today, I'm fairly convinced. 

About two hours after lunch, engrossed in paperwork, I felt the familiar sensation start up behind my ribs. My first thought was that I was glad not to be with a patient at that time, but that was hotly followed by a thought to test my blood sugar and then:

LUNCH BOLUS!

I took my sensor out just before I ate, as my skin was getting a little sore and irritated looking. Since I was at work, I didn't replace it. I obviously didn't bolus for my pasta salad either. It went clean out of my head. Without the CGM to alert me, I'd soared up to the dizzy heights of 17mmol/l (306mg/dL).

Eeek! As I hicced and huuurked, I dialed in a correction, but I knew that while the insulin would fix the high it wouldn't have much effect on the hiccups. They went away 10 minutes later, but sure enough they've been back twice already this evening!

Is this symptom of hyperglycaemia peculiar to me? What strange things happen to you?

The Accidental Overdose

Because I prefer to be discrete, I tend to leave my pump's alarm set to vibrate, and that means I'm used to random buzzing from my pocket, my waistband or wherever my pump happens to be lying beside me. High alerts, Low alerts, Cal reminders, low reservoir alerts... between the pump itself and the CGM the list is endless.

The 522 is pretty cool in that it will give you a different number of vibrations for different alerts. Three means 'take no action' and happens for stuff like temp basals. Four is something which requires prompt action - highs and lows for example. Six means 'pay attention to me now or you'll be sorry' - No delivery alarms and stuff like that.

The problem is, I often only feel one or two vibrations so I have to dig out the pump to check no matter what.

This morning, sitting on a bus overcrowded with soaking wet passengers, I felt that single vibration. I pulled off my gloves and dug through layers of coat and sweater to reach my pump in my pocket. As I glanced at it, I was sure I saw the bolus delivery screen, but a second later it was gone.

The strange thing was, there was no alert to have triggered an alarm. And the only other time the pump vibrates is when it finishes delivering a bolus. Scanning rapidly to the bolus history screen, there it was. I'd just given myself a 4.6 unit bolus.

Only, I hadn't.

Or at least I hadn't meant to. I'd eaten breakfast about 40 minutes earlier and bolused then. But that had only been 3 units via the bolus wizard. It was right there on the history, below the 4.6 unit manual bolus.

The pump had been in my pocket the whole time and easy bolus is disabled.

So what on earth happened?

The only conclusion I can come to to is that somehow, in the course of getting on the bus, I'd leaned on my pump in such a way as to press the buttons in sequence: ACT, ACT, down arrow, ACT, ACT, up arrow...for a while, ACT. But crazier yet is that with every press of the ACT button, the pump vibrates.

Still, it's either that or else I was briefly abducted by aliens. Unless anyone has any other suggestions?

Oh, and the overdose was sorted with a temp basal and a big bowl of cereal when I got to work.

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.

A1c: Really?

Amongst other things today, I had an appointment with my diabetes consultant. I know full well that I've moaned before about feeling unsupported and not wanting to do it all myself, but honestly I sometimes wonder about the point of these visits.

We spend a lot of time going over the same old ground, about the emotional burdens of diabetes, about hypoglycaemia frequency and so on. But looking back, I can't see the last time anything ever really got done as a result of these appointments. I can't think of a time where I've made changes directly based on what we've discussed.

It's not that that is necessarily a bad thing. I'm not sure that there is really an awful lot that I want to come out of the visits. I don't want my consultant to fiddle around with my basal rates or carb ratios because, quite frankly, what does he know? I'm the one living with this. I'm the one that does it day by day. And even if he made changes that worked for a while, everything will change again long before we next meet. If I were to rely on my diabetes team to make all these changes, I'd be up the creek without a paddle more often than not.

Today felt perhaps particularly pointless because I'm not due for retinal photography, tests on my feet or any of the myriad of blood tests used in the early detection of risks and complications. I had all those things done just a few short months ago.

I did get my A1c, of course.

It was 6.6.

'Really?' was my first thought.

I was honestly, totally shocked. I've seen a whole bunch of wayward numbers lately, and, at long last, fewer hypos. I guess I was expecting those two things to combine and push the result up a little higher than it was. It was good to learn, I guess, that things might have been going better than I thought.

But other than that, what else is there to have got out of today? Am I missing something about professional diabetes care that should be totally obvious?

Sensible vs Stupid

Sensible Caro: Stayed comfortably asleep in bed this morning.

Stupid Caro: Got up and went out in the cold.

Sensible Caro: Drank cups of tea and watched daytime TV without worrying about anything else.

Stupid Caro: Went to work, because there was no one else to cover and she was worried about that.

Sensible Caro: Chilled out and relaxed.

Stupid Caro: Snapped at everyone and burst into tears because she felt terrible and couldn't cope.

Sensible Caro: Managed to keep her blood sugars somewhat in range.

Stupid Caro: Saw every number from the sky to the floor.

Sensible Caro: Feels much better tonight.

Stupid Caro: Feels somewhat better, but now realises she did herself no favours.

Guess which one is the real me?

I really have no idea what I was thinking when I got out of bed this morning. Perhaps it was simply that I wasn't thinking. Trying to work? Who was I trying to kid, more like!

It would be easy for me to blame it all on the responsibility of my job and not wanting to let people down, but sometimes I'm just my own worst enemy. After everyone so generously sent me their best yesterday, I go and pull my worst on myself!

I am feeling a bit better though, and my eyes in particular are much less swollen and sore. Now, if I could just shake off this damn cough... cough... cough.... cough

Real People Sick

I think it was Allison who coined the phrase "Real People Sick", meaning illness that people without diabetes get. *EDIT* The term actually comes from Kerri. See here for more. 

I'm "Real People Sick".

This is coming to you from my bed (thank you wireless network) where I've been tucked up for the last hour and a half or so. I've got a throbbing headache, fever, runny nose, aching neck and a nasty, hacking cough that makes me feel as though I'm coughing up knives. To cap it all, my eyes won't stop streaming and so swollen that I look as though I've been crying for a week.

So I've beaten a hasty retreat to bed (at 7.45pm!). I've taken paracetamol for the fever, and something a little stronger for my headache. I've got a two litre bottle of water, straight from the fridge, a bumper box of tissues and back-to-back re-runs of Friends on TV.

But that is where "Real People Sick" ends. Because even when I'm "real" sick, I'm still chronic illness sick too.

My blood sugars are behaving like... well the point is they're not behaving. Amongst all those 'ordinary' supplies, I've got my meter for frequent testing and juice for bounce-back lows.

And then there is the reaction to another number. The temperature number. When I checked my temperature earlier and saw 39.2 (that's over 102 in Fahrenheit) blinking back at me, my first thought was that all the shaking I'm doing might not be shivering after all. For someone with Addison's disease, it's definitely time to crack out the extra steroids.

And later on they'll do their own number on my blood sugars.

I feel truly awful.

I want to crawl in to a hole for a very long time. But unfortunately I need to keep checking my blood sugar every couple of hours.

So much for "Real People Sick"!

Friday 'Fings

A couple of things to share on this sunny Friday. Except they're 'fings, rather than things. This is for more than alliteration's sake. I went to high school in a town where a large proportion of the population were unable to pronounce the 'th' sound, using instead a 'ff' sound. Today I sound a little like those people.

Which brings me to:

Fing One

Early yesterday morning I was somewhat abruptly reminded of the perils of hypoglycaemia, especially when you live on your own. The hunger might drive you to the insensible option of eating your own lips. Or more likely your jelly legs might forget how to do the simple one-in-front-of-the-other walking thing (I mean, come on legs, how hard is that?) and put you splat on the floor. Taking a bite of your lips on the way down.

Which is roughly what happened to me.

It appears I smacked my chin on the hard edge of the bed frame and sent one of my top front  teeth through my bottom lip.

Being a dentist is a blessing and a curse if you manage this kind of injury. A blessing in that I was able to simply go to work and get looked after and stitched up by my wonderful colleagues. Who truly were wonderful, even down to pointing out that I was probably shaking like a leaf because  this was a pretty nasty shock and I'd completely forgotten to kick up my steroids.  I really need other people around when my brain flakes out! I've also been able to cheat and use dental anaesthetics for relief at times when the pain has got really bad during the last 30 hours or so.

Being a dentist with this kind of injury is curse because it sparks obvious jokes about being on the receiving end and getting my comeuppance. Oh yes, the patients really do find it funny. (Not that I ended up doing much work yesterday.)

I won't post pictures, because even I  think I look hideous, but suffice it to say that I have some lovely bruising and look a little like I've over-done some lip filler treatments! Please keep my front tooth in your thoughts. It has endured this kind of bashing before and I fear this may be the time it gives up and dies. Come on little tooth!

Fing Two

As if I wasn't unintelligible enough speaking through my fish lips, I appear to have lost my voice this morning. Damn cold  that is doing the rounds. A few hot lemon and honey drinks (through a straw of course) have picked it up a bit, but I definitely sound as though I have a frog resident in my throat.

A frog talking through a fish's mouth. Now there is a thought!

Fing Three

On a more positive note, I was very honoured this week to receive notification that I've been awarded a 'Health Leader Award' by the Irritable Bowel Syndrome Treatment website. These awards recognise sites that are "squarely on the side of the patient." Since that is exactly where I aim to be, I'm very proud to been given this award.

There is a list of other winners over on the site, which are worth checking out.

Fing Four

This article from the BBC came to my attention yesterday.

To say that it makes me mad is an understatement. I've not looked in to it further, and it could be that my own Primary Care Trust is one of those still in deficit, but it makes me angry to hear of so much money essentially going to waste when I'm still being denied any coverage for the CGM technology that has changed my life and allowed me to keep working (for the NHS, oh the irony!).

And it isn't just about me either. Up and down the country patients are having test strips rationed and told that, although they are good candidates, they'll have to go on waiting lists before they can commence pump therapy (actually illegal regardless of resources, but that is a story for a different day). All the while there is money burning a hole in the Treasury's pocket. All this anger without even touching on even bigger issues outside of diabetes care.

I couldn't agree more with John Appleby, who, in the article, states:

"A surplus of that size [is] not necessarily a healthy sign, as the money could have been spent on services. If the NHS does end up with a significant underspend at the end of the financial year, that will be a real loss to patients".

Too true.

Have a great Friday.

 

Running on Empty

At 8am this morning I had a choice:

a) get up now and refill my reservoir/change my infusion set, or

b) roll over and grab five more minutes sleep.

I chose b.

(Five minutes in fact turned to over thirty and a mad panic to get ready and make it to work for 10am ensued.)

At 8am this morning I had 3.2 units remaining in my insulin pump. Not anywhere near enough to get me through the day, but I made my lazy choice based on the 10-15 'hidden' units at the end of the reservoir. Minimed pumps never show they are there, but I know they are.

And 13-18 units was plenty of insulin to last until this evening.

Or it would have been, had several of us not decided to head out after work for a Chinese meal.

Mmmm... Chinese.

Mmmm... big bolus.

Sitting in the restaurant in Greenwich I contemplated my empty reservoir and the plate of noodles and chicken that I'd just ordered.

I knew what had to be done.

I am very lucky to have work colleagues who don't bat an eyelid when I pull out insulin,  a reservoir and infusion set and proceed to change out the entire thing right there at the table, without even dropping a beat from the conversation.

I know that there are many people who would not do it that way. I know that there are many people who would actually criticise me for doing something so medical in public.

This is the way I see it: I was running on empty. If your car runs out of fuel, you fill it up. Or, a better analogy, if you get hungry, you eat to fill yourself up. To me, insulin in my pump is no different. It was a necessity right then, so that I could go on with my evening in the way that most people take for granted. None of my immediate dining companions objected, and nobody else in the restaurant had any cause to even look at what I was doing. And yes, it was clean and I had already washed my hands.

A girl's gotta do what a girl's gotta do and filling up her insulin pump and changing her infusion set is an important part of this girl's life!

Day Off

Dearest diabetes,

Thank you very much. You were most kind today.

When I sat down to lunch, with around 40 members of my extended family, my blood sugar was a healthy 5.5 (99). You must have known, diabetes, that I was so busy with conversation that I forgot to feed you your insulin, forgot to pay any attention to you. I'm sorry for that. You know that I am usually devoted to you, my constant companion and I didn't do it intentionally. I really truly cannot tell you how much I appreciated you disappearing for a while. When, horror struck, I realised my neglect, my blood sugar was at a nice 6.8 (122).

Don't worry about my silly liver, telling you about how you missed an opportunity to send my blood glucose sky high together. You actually did great work today, no matter what he says.

In fact, I've been wondering if you would mind terribly, awfully much taking next Saturday off too? And the one after that? Go on, honestly. Sure, I may miss you and your constant interruptions a little, but if you want to throw in the odd weekday as well, I really won't mind.  I think I may be ready to get by without you.

In fact, I'm hereby increasing your vacation allowance to 365 days a year. No, really. I think you've earned it. Do go on and take them all.

Please?

Ever yours,

Caro

Unlucky 13

I'm not a particularly superstitious person.

Actually, I'm not superstitious at all. To me, a black cat is just a black cat and magpies are just magpies. I'll happily cut my nails, and my hair, when I want and I'll walk over any number of drains in the street. I don't walk under ladders, but that is common sense, not superstition!

Thirteen?

Just a number.

Thirteenth of the month?

Just a day...

Or so I thought. But whether it was the date or something else entirely, the blood sugar monsters have been out to get me today.

It started off badly. At around a quarter to two this morning, I woke up to find my pump and I had parted company. It had made a bid for freedom out of the far side of the bed leaving its tail of tubing trailing in its wake, infusion set still attached, ripped clean from my body.

There was a very big part of me that wanted to leave it there. I wanted to stick two fingers up at it and say "You can't get one over on me. If you fancy a night sleeping on the floor, you've got it!"

The idea of rolling over and ignoring the problem entirely was given more consideration that it surely should have been.

But diabetes invades my every waking hour. I don't want it invading my sleep. I wanted to ignore it so badly.

Of course I didn't. I didn't even really pursue a mental calculation of how many hours until I would be getting up and whether I could get by on a interim shot of Humalog. Instead, I forced myself out from under my warm duvet into the cold of the bedroom to collect a new infusion set. Given that I only had around 20 units left in the reservoir, I grabbed one of those as well and proceeded to replace the entire shebang.

By late this afternoon, I was back wishing I'd left the pump where it was. The infusion set having been placed through a blur of sleep, the adhesive had caught up a little and it has irritated and scratched at my skin all day. And as for my blood sugars, they've soared and crashed from 2 to 20 and back again.

I'm frustrated.

I want to blame my pump because it is a tangible object. I love my pump, but unlike my other love, this relationship is tinged with hatred and resentment. I wish I didn't rely so totally on it. I wish I had a fully functioning body that didn't need it.

That's the bottom line. It's diabetes that I'm frustrated with. It's diabetes that I want to toss out of my bed.

But I can't.

So I'll resign myself to the fact that today was an unlucky day; Tomorrow is a new one.

Ruined Lie-in

I was woken by R.

"You're going off, babe."

I could hear the screeching siren of a long ignored alarm on my Medtronic pump, muffled somewhat by the fact that it was buried underneath my stomach. Extricating it roughly and unwrapping the tubing from around my body, I glanced at the screen.

LOW 2.6 (45)

"I'm low" I mumbled. I reached across to get my testing kit, but it seemed to take a monumental effort. I let the black nylon case fall on to my chest, unopened.

"Babe."

No response.

"Babe, you were going to do a test." He digs me in the ribs. "Come on babe."

Several minutes later, the low confirmed, juice grabbed from the window sill and my blood glucose beginning the slow upward climb, R is drifting gently back to sleep.

"Seven thirty seven" I say, to no one in particular.

"Seven thirty seven?" mumbles R. "What's seven thirty seven?"

"Too early to be awake on a Sunday morning when we've got nothing in particular to do with the day" I respond. "Damn low blood sugar, ruining my lie in."

Thank You For Giving Me Courage: D-Blog Day

It takes courage to take on diabetes.

I'm not talking about bravery. You don't have to be brave to stick needles into your skin when the choice is do or die. But you do have to find overwhelming strength from inside to choose to face the challenges it throws at you, to choose to take them on. To run full pelt after control, even when you don't quite attain it.

It is far, far easier to back down. Let it control you. Let it win.

Since the introduction of insulin, diabetes is no longer an automatic death sentence. But insulin is not a cure. Eighty-six years after the discovery of the wonder drug, millions of people worldwide still rely on it as life support. We live in a changed reality, a 'new-normal', attempting as best we can to control and reign in the beast that is diabetes.

I was three years old when I embraced my 'new-normal'. It's no longer 'new'. I don't remember how it feels to be any different. Despite more recent technology - a pump and continuous glucose monitor - I, and the countless other users of insulin, live with the constant threat of hypoglycaemia hitting when we least expect. When we're alone, unprepared or defenceless. It is a risk we run every day.

At the other end of the swing, we live too with the constant threat of hyperglycaemia, the very hallmark of diabetes. Kinked cannulas, spoiled insulin or simple 'user error' can lead swiftly to ketoacidosis. Coma. Death?

But diabetes doesn't have to kill you to take away your life. The consequences of poor control loom over us on a daily basis. Our eyes are threatened. Our kidneys are threatened. Even the feet that we walk on are threatened. My eyesight is essential to my career. I already know what it feels like to be unable to walk, to get around. That is not a life I want.

Diabetes takes a piece of my life every day. It takes a chunk of time in monitoring blood sugars, thinking about food and exercise, changing and maintaining pump supplies, ensuring I don't run out of my life supporting insulin.

Diabetes too, threatens my life in a more subtle way. A year ago , I was deep in the pit of a depression centered around diabetes and the overwhelming impact it has on my life, the sheer size of the task of facing it head on. I felt isolated and alone, the people close to me unable to truly understand what taking on diabetes means. I was afraid.

But I found courage again.

And I found it here. In the community of people who blog about their diabetes.

You are the people who understand. You monitor your blood sugars, think about food and exercise and maintain your supplies alongside me. We come from all walks of life and several corners of the world. But we all share this one thing. I wish nobody had to face this, but for as long as they do, I'm glad to face it alongside this group of people.

Thank you all for inspiring me on a daily basis and helping me to reach inside for the courage to carry on.

Just thank you.

(For more about D-Blog day, please stop by Gina's post. And if you have a blog and are affected by diabetes, please join us on D-Blog day and post the logo above.)

Christmas, Anytime of Year

Okay, okay, I'll admit it. It doesn't matter how many rants I have, via twitter  or otherwise, there is one place (or more accurately something like 48 bazillion places worldwide) where I would be quite happy for it to be Christmas every day. Every. Single. Day.

The place?

Inside a branch of Starbucks.

I know it's bad. I know its oh-so-NOT diabetes friendly, but so long as they have Gingerbread Lattes, Peppermint Mochas and Cranberry and Orange Muffins, they can hold Christmas every single day of the year.

Stepping off a bus outside Borough Station earlier on my way home from a hospital appointment, I couldn't help but notice the snow flakes etched on to the windows of a fairly recently opened branch on the other side of the street. The promise of Christmas inside acted like an invisible hand, guiding me to the crossing, over the road and in through the front door in a blast of cold air.

They had the red cups, the turkey feast panninis and a list of festive food and drink. I was like a kid at, well, Christmas! For a minute, it didn't matter that we're only just out of the first week of Novemeber. It was Christmas and all I cared about was what I could have. New for this year includes Creme Brulee Lattes and Skinny Cranberry and Orange Muffins - does that mean I can eat twice as many?

I know I shouldn't have, but with a healthy 5.3 (95) blood sugar and a morning spent at the hospital behind me, I convinced myself a treat was in order. Who am I kidding? I didn't really need any convincing.

One grande Gingerbread Latte (minus the whipped cream) and 3 units of insulin later, I'm cruising  in the 6's (110-125) range.

Yeah, secretly I can't wait for Christmas. Or at least, I can't wait for Starbucks' Christmas!

How much glucose can a glucose sensor sense?

It was Kerri that got me  thinking about woodchucks chucking wood. It was that which gave me the silly title for this post.

And it was a new comment on an old post that inspired the topic. Adil asked:

How long can the sensor actually last?

What surprised me most about this question is the fact that I've not answered it explicitly before. Or rather, that I've not answered it here. I've explained countless times to other folks, on mailing lists, in comments on other blogs and in person, how I prolong sensor life and what my sensor life cycle is, but a quick check of my archives confirms that while I've mentioned it briefly, I've never really explained it here.

So, first the "official answer'. The sensors are designed and approved to last three days. Now that is out of the way we can get in to the real world.

There are several reasons why three day use doesn't cut the mustard for me, not least of which is cost. I'm still not getting any financial assistance for the cost of sensors. I'm told there has been a recent price reduction although I can't confirm as I haven't ordered any sensors recently. I'm working through several "expired" ones I obtained from an acquaintance. [Shh, they are working fine. *knock knock* (on wood).] Previously the UK price was working out close to 50, yes fifty, pounds each. For those of you in the US that is a whopping US$100 per sensor. Every three days? Yeah, I don't think so either.

Admittedly if you have funding or insurance coverage, there isn't the financial incentive to prolong sensor life. But there is another very good reason.

Like a fine wine, sensor accuracy appears to improve with age.

This is purely anecdotal, but it is an observation shared by other CGM users, bloggers included.  I find the first three days of sensor data the least accurate of all and so pulling the sensor out every three days would be somewhat counter-productive.

So the unofficial answer to the question is a little along the lines of how long is a piece of string. Personally I use my sensors for two week stretches. I restart* the sensor at days 3 and 6 and it gets up and running again within 15 minutes. On day 7, I disconnect the Minilink and charge it up, leaving the sensor in place. This typically takes 10-20 minutes. On reconnecting there is two hour initialization period and I'm then good to go for another 7 days, restarting on days 3 and 6 again.

But as with everything diabetes, your mileage may vary. Some users have gone much longer. Others stick to shorter time frames. I know one woman who cannot get any usable data past nine days. I stick to two weeks because by that point I'm usually getting the very beginnings of skin irritation. Who knows whether the length of time that I go is damaging my tissues below the surface Sadly the decision on sensor life for me is in a large part economic.

* To restart the sensor at day 3 or 6: go to Sensor --> Sensor Start --> New Sensor and then press ACT. Don't wait for it to ask you for a Meter BG. Just go straight to Sensor --> Enter Meter BG. It will tell you the sensor isn't ready, but press ACT and put the number in anyway. The sensor will pick it up and use it and it stops it alarming to ask for the number a couple of minutes later anyway.

For more about my CGM experiences, see the archives Knowing My Numbers - CGM

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.

Covered Without Conditions

I travel fairly frequently. I love holidays and visiting new places, but the one thing I'm always super-fastidious about is travel insurance. This isn't directly down to diabetes, but more down to the memory of a short stay in a Florida hospital aged nine and what it would have cost my parents without insurance coverage.

However, I've always found travel insurance something of a sticky issue. In fact, I have at least two "free" policies, as part of a bank account and membership of an organisation, that I don't use. Why? Because given that they exclude all pre-exisiting conditions, they are next to useless to me. I know how these insurers work, and believe me, they'd try to blame a broken leg on diabetes somehow.

A few years ago, I found a good deal for an annual policy. They were willing to accept my pre-existing conditions, provided I went through an extended medical questionnaire with a nurse representative and accepted certain conditions that they placed on me - such as limitation on coverage for loss of or damage to routine supplies. They hiked my premium up too, in line with my risk status, but it still worked out a pretty good deal. I've always been thankful just to be covered.

I've renewed the same policy each year since, too afraid to let it go in case I can't find more cover elsewhere. In fact, I didn't even claim for the 36 hour delay I endured on my return from Barbados in January, for fear of rocking the boat.

So imagine my surprise when I renewed the policy today.

The usual questions:
You want Worldwide or European? Do you want wintersports with that?

Then it was time to concentrate. Here comes the medical bit.

"Have you had, or are you waiting for any tests or specialist appointments, other than for routine follow up, in the last year?"

I'm thinking carefully. No. This was all done and dusted over a year ago. And diabetes and other endocrine issues are definitely just routine follow up at this point in time.

"Have you or a close family member or business partner been given a terminal diagnosis in the last year?"

Thankfully that is definitely a no.

"Have you received a diagnosis of, or are you awaiting results of testing for, HIV?"

Offering up more thanks, that'll be another no.

And so it goes on in a similar vein.

Every question was a no.

"That's fine" says Mr Insurance Representative. "You cover will..."

"Hold on, hold on" I countered. "I need to check this. I answered no to all your questions, but you need to know that I have several pre-existing conditions. I usually have to speak to your medical representatives too. You see, I'm a type 1 diabetic, and I've... umm... had problems with insurance before. I just want to make sure that I'm definitely going to be properly covered."

"Oh. Erm... Ok. If you can hold the line, I'm just going to check this out with my supervisor."

I'm plunged into a telephonic abyss, punctuated by occasional bursts of tinny electronic music. A few minutes pass as I doodle over the back of the renewal reminder notice. Mr Insurance Representative comes back on line.

"Thanks for holding. No one has never asked me about that before."

I'm raising my eyebrows, but he can't see tat down the phone line.

"As long as you could truthfully answer all the questions with a no, then you're all set to go."

I'm almost too dumbfounded to actually give him my credit card details.

Covered, without any conditions at all. I still can't get my head around it now.

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...

I can't do it on my own

You know that cheesy mantra about there being "no 'I' in 'team'"?

Well when it comes to my diabetes care team, sometimes I feel like it's much more of a diabetes care tiim. I feel like the 'I' and I'm doing it all myself.

On the surface at least, my last clinic visit, on July 31st, wasn't so bad. My A1c was unchanged and I got to spend a good 45 minutes discussing various issues with my diabetes consultant - who is essentially a very good man. But that is where it started to get not so good.

The issues are multiple. I hadn't taken along any recent blood glucose records, which meant that my consultant was working somewhat in the dark. Obviously I fully accept that the responsibility for providing my records lies with me, but I have my reasons. Holidays was one of them. Not having access to Carelink owing to the fact that I don't have a copy of Windows to run on my Mac, certainly don't want to fork out for a copy of Windows (else why would I use a Mac?) and wouldn't want to use IE7 even if I had Windows. Carelink would be by far the simplest solution for me to log data and share it with my care team right now, but Medtronic have made that impossible for me. Yeah, I'm damn mad about this. My chronic medical conditions dictate or influence enough of my day to day lifestyle choices. I won't have my medical conditions dictate what kind of computer hardware and software I should use.

I digress.

The real downside to the appointment came when I finally admitted that yes, things are not good. That yes, I'm still experiencing a high number of severe hypos at night, some involving seizures. My consultant was pretty appalled. Not at me, and my lack of control, more that I hadn't asked for help.

His words were "I can't let you keep having this number of serious hypos."

So why have I not asked for help?

Well, in one way I have. I've be fighting for over a year now to get support to get some financial assistance for CGM sensors. I know this sounds like a cop out to the very many people who aren't lucky enough to have access to CGM at all. But whilst there are very few patterns in my control at present, the consistent pattern is that things are far worse when I'm not using a sensor. I do have enough records to prove that. Various changes in my personal circumstances, including being unable to get sensors at US prices any more, mean that I've not been using them as regularly. But despite the fact that my clinic have assisted some people to get financial support, I'm repeatedly met with a blanket "no." And my PCT won't even consider a direct application without consultant backing.

I digress again.

On why I haven't asked directly for more practical help then: because it is so damn difficult. Especially in my line of work.

Take this example: I call the specialist nurse with a problem. She'll be busy with a patient, or an education course or just generally doing her job. So I leave a number and request a call back. The call back comes a little later by which time I'm elbow deep in a surgical extraction of a wisdom tooth, or halfway through delivering an inferior dental nerve block injection or just generally doing my job. So we miss each other.

And when this has happened multiple times, then as hard as carrying on without support is, it is easier than keep struggling to work the system. I know I could get more support, but it seems like too much hard work to be truly worthwhile.

Towards the end of my appointment came the real crunch. My consultant insisted that I must come in again in 3 months. He seemed receptive to the fact that allowing 6 months to elapse between appointments adds to my sense of abandonment. But when he tried to request an October appointment he was told that the October "pump clinic" was "full". So the next available is January.

"Don't worry" he assures me. "We'll sort something out.  We just have to fiddle the system and you'll get an October appointment sent out to you shortly.You need to be more supported professionally. "

So why, three weeks later, am I sitting here without an appointment? Why do I feel more abandoned than ever?

I can't do this on my own, but I can't find a way to get the professional support I need either. I don't have the energy it seems to require of me.

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.

I Hate Packing

I hate it, hate it, hate it.

Well, not so much the actual packing. The slotting of things into spaces in the case, squeezing it all together so the lid closes with ease without too much of a struggle.

It's more the preparation that gets me. Deciding just how many pairs of shoes I need to go with all those carefully selected T-shirts and whether I have just the right balance of trousers, shorts and skirts. I hate wading through electric cables ensuring I have the correct chargers for the hordes of "essential" devices that seem to be necessary in this day and age. I hate that no matter how many trips I take, it never seems to get any easier or faster to do.

I hate it more, though, that when I've cut it through all that stuff, when most people would be done with the task, when R has reached the bottom of his to-pack list, I'm still going with an enormous list of medication and diabetes related paraphernalia, the importance of which puts everything else into the shade.

I can't believe how long that list gets: test kit and spare, strips, lancets, glucagon kits, glucose tabs, insulin, syringes, infusion sets, reservoirs and pump batteries... I could go on.

I glanced around on the Heathrow Express train earlier and couldn't help but notice how much more luggage I seem to have than other passengers.

But at the same time I cant help but think all the extra effort will be worth it for two relaxing weeks of holidays, especially in light of the anniversary I will celebrate whilst away.

The packing is done now, I'm typing this in an airport hotel bedroom, ahead of my flight tomorrow morning. And I'm looking forward to two healthy weeks in San Francisco more than I can possibly tell you all.

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.

How To Save A Life

There is no doubt that I owe something to the London Ambulance Service.

The EMTs and Paramedics who make up their number have attended to me and treated me, or scooped me up and carried me off to hospital, more times in the last few years than I really care to think about. Enough times to make me feel simultaneously very grateful and just a little ashamed to be so needy.

For the most part I have very little recollection of these encounters and of the people who are summoned to rescue me when I've fallen off the side of the narrow line we tread. By the time the guys in green are racing to my side, I've invariably lost my grip on reality through a blood sugar that is far lower than it should be, through a seizure or for some other reason entirely. I hate that I can't get the moments that I lose back. That I'll never know if I was combative, rude and abusive or just plain funny. I'll never know if my dignity remained intact whilst I lay on a dirty London pavement.

And I'll never know exactly how close I came to never recollecting anything again.

Now that's a very scary thought.

It's not surprising that I take some comfort from the fact that in the hands of these professionals hypoglycaemia, which has perhaps been the commonest cause of my need for assistance ever since my first ambulance ride some two decades ago, is easily treated. So easily treated that these guys actually regard it as a favourite job.

How do I know that?

Because I'm a long-term sometime reader of the blog Random Acts of Reality, written by LAS EMT Tom Reynolds. And I read it here.

Where there is an up, there is almost always a down. For me, it came in a very public place as I was reading the book version of the blog, Blood, Sweat and Tea. I'll have every recollection of my loss of dignity as the tears fell when I read this entry, that I had not read online.

There is so much that can never be known. It is an assumption to think that this was a deliberate omission of insulin, and an even bigger one to suppose that it was driven by a diabetes releated depression, although they also seem like obvious conclusions. The only thing that seems certain is that the high blood sugar dictated the outcome.

It's a reminder that another effective way to save a life, to save many lives, would be to eradicate this thing altogether.

 

For Father's Day

I've never been able to find a way to put into words exactly how much I love my dad. I love him simply for who he is and I love him for all that he has done for me.

When I was a kid, testing my blood glucose was often handled by my dad. He was often the one who crawled half asleep from his bed to test me in the middle of the night and the person who sprang to life when I wandered into my parents' room complaining of feeling "wobbley".

For years, I used to get up in the early mornings with my dad who, rose a full half hour before anyone else in the house. He'd be the one who would check my blood sugar before settling me down with something to do. I have vivid memories of him setting up a television in the spare bedroom during the 1988 Olympics. Given that Seoul is several hours ahead of UK time, the sports would be in full swing by 6.30am. I sat and watched equestrian sports with the faint babble of Radio 4's Today programme emanating from the bathroom opposite.

Later, when getting up early was no longer my thing and I was far more likely to ignore the alarm, turn over and pull the duvet over my head, it was always my dad who made sure I got up. Long after I was capable of testing my own blood sugar, he'd still do that first morning test for me, giving me a few extra precious minutes of sleep. My insulin pen would be ready and waiting for me on the breakfast table.

I remember too an occasion when I experienced severe hypoglycaemia at school. My dad, the world's most careful driver, the man who will set the cruise control so he doesn't accidentally exceed the limit in a 30 zone, rushed down the motorway not caring if he got a speeding ticket, just to make sure I was ok.

My dad had dropped everything at work and rushed to be with me  more occasions than I care to count where I've been admitted to hospital, or too ill to cope on my own. He has supported me unconditionally when everything seemed to be gong wrong and it felt like the word was against me. He is never, ever more than a phone call or email away and has never thought twice about sacrificing his own needs for those of his children.

But my relationship with my dad is about far more than just diabetes and illness. He carried me on his shoulders through crowds. He taught me to ride a bike, running behind me, hanging onto the back of the saddle and saying "I won't let go, I won't let go" then moments later "you can do it!" Years later, he sat next to me in my little red mini, and patiently taught me to reverse park. He has shaped me as the person I am. From silly rituals like face pulling and silly sayings, to teaching me right from wrong. From helping me with my tax returns to teaching me how to love.

For years, I've watched my mum and dad as a couple -  a couple who celebrated their 33rd wedding anniversary on Friday - and known exactly what I wanted from a relationship. I blame my dad partly for my long years of being single. My parents' relationship has given me high standards, and it's been hard to find anyone who even comes close to matching up to my dad.

My dad has given me so much, but if he were to go and leave me just one more thing, I'd want his words. He is a brilliant speaker. I'd want from him the words he'd most want to say about me, perhaps the words he would say if I were to get married tomorrow. I'd want to hear those words  to know that I've made my dad proud of me.

And the one thing that I would want to give him back is the realisation that he can only be proud of me because of who he has made me.

Getting My Groove On

I love getting stuff in the mail.

Stuff, that is, that isn't bills or junk. Cards, letters, things I've ordered or exciting, oddly shaped packages. You can't beat the feeling of peaking into the mail box on your way in from a tiring day at work to find an interesting envelope or package peeking back at you.

Like the one I found today:

It has been almost exactly a year since Kerri posted about these.

At the time Groovy Patches were only available for Quicksets, which I wasn't using and wasn't able to use right then. But I loved the idea. In fact, I thought they might even just be the solution to the ongoing problem I experience with Silhouette/Comfort infusion sets where the little cannula viewing window pulls away from the plastic hub, leaving the point of insertion completely exposed. I've tried ordinary surgical tape and pieces of IV3000 cut down to size to deal with the issue. Both of these solutions work well enough, but look so darned ugly.

I discovered a while back that Groovy Patches were now available for Silhouette/Comfort (in both short and regular cannula lengths). Last week, perhaps spurred on by my upcoming holiday or even the simple desire for some exciting mail, I finally allowed curiosity to get the better of me and I ordered some. I've got some retro patterns, flowers, underwater scenes and even jelly beans!

I can be an impatient person at times, and this was one of them. I couldn't wait to get my groove on:

The verdict so far?

I love it! It remains to be seen if the patches will solve my problem, but I just love how much fun they are. It's great to glance down at my hip and see a little starfish instead of a large white blob. All we need now are Minilink Patches!

I'm feeling groovy... how about you?

It's About Us

Saturday night: After a day out in the heat of London and a huge lunch, R and I opted for an evening in with a bottle of wine and some DVDs. We were part way through watching 'Snakes on a Plane' which neither of us had seen in the cinema. I was finding it amusing, but not highly engaging.

My mind wandered. What should we do tomorrow... what things do I need to do this week... what needs to be planned ahead of our trip at the end of the month... my wireless router.

That's the one that held my attention. What use is a wireless router that no longer works without wires? Or worse, one that no longer seems to work at all?

You're right. Absolutely no use.

But that doesn't explain the level of vehemence with which I suddenly chose to attack the small white and silver object right then in the middle of the film, as people on screen were busy battling to save a 747 full of, erm, snakes.

"Babe. Calm down."

"Why should I? Sixty-five quid I paid for that f***ing piece of c**p."

"But you can't do anything about it now" says R, the voice of reason. "Just calm down."

A few more choice words and much tossing around of cables and chargers later, the end credits roll. There is a noticeable silence and air of indifference from R.

"Are you in a mood with me?" I demanded

Slightly exasperated sigh. "No. But I'd prefer a girlfriend who seemed a little more in control of her mood."

"Fine" I said standing up and moving towards the door. "Maybe you should find another girlfriend then" I added, somewhat quieter. "I'm going to bed."

I briefly contemplated testing my blood sugar before sleep, but I still felt too angry. Angry at the stupid wireless router. Angry that I didn't have internet access when I wanted it. Angry that R just obviously couldn't see how important, really important, this was to me at that moment.

Just as my brain slowly engaged into gear, asking the question "Why? Why on earth is it important at all?" I felt an insistent vibration down by my thigh. Reaching beneath the covers, I hauled my pump up to read the screen:

LOW

One quick fingerstick later and  was staring at the number 2.1 (38)

A few more choice expletives, as I realised that the Lucozade bottle beside my bed was empty. I hauled myself out of bed and stumbled to the kitchen. Fumbling for a new bottle with shaking hands it slipped from my grip bouncing once, maybe twice, before rolling away and coming to rest in the middle of the kitchen floor. I picked it up and twisted the top.

It almost seemed to happen in slow motion. A violent hiss and splutter and a fountain of orange foam burst out and upward over my hands, arcing at chest level before hitting the tiled floor with an insistent splatter and forming a vivid orange lake running in sticky rivulets along the cracks between the tiles.

It went everywhere. Diet coke and Mentos have nothing on shaken up Lucozade.

I rested my head on the counter, my hair trailing in the sink, unable to stop the tears anymore. If R hadn't heard the fizz as the bottle cap came off, he certainly must have heard the words that followed from me.  In a second he's behind me, his hands wrapping around me.

"It's OK babe."

"How can it be OK. I don't want this anymore. I don't want to be low anymore. I don't want to behave like this... this monster anymore."

"Let's just get you to drink this" he says, proffering the sticky Lucozade bottle minus a quarter of its contents.

I beat a retreat to bed, leaving R to clean up my mess.

When he eventually joined me, when he'd helped me to clean up my sticky, orange coated feet, the tears came again.

I wasn't just crying for what an idiot I'd been, for the silly row my low blood sugar had caused, for the mess in the kitchen or even just because I had a headache and felt lousy. I wasn't crying because I hadn't spotted the low sooner, or because the CGM hadn't alerted me sooner, or even because R hadn't spotted it - how could he? My blood sugar had been fine one hour earlier and this dimension in my behaviour is one that he, thankfully, hasn't experienced much.

I was crying more because of the realisation that this time my low was affecting someone else as much as it was affecting me.

This isn't just about me anymore. It's about us.

And while I benefit from facing this as a team, where is the benefit for R?

Somehow this makes me hate diabetes even more.

All that R could do was hold me while I cried and reassure me that he isn't going anywhere.

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.

New Year and Year Two

Late, as always.

I'm almost surprised that I didn't miss midnight altogether on New Year's Eve, and come crashing in a couple of hours later to toast everyone. I didn't: I made it to the real New Year on time.

I can't believe that I've been doing this for a year. From a tentative beginning, where shyness had me hiding all but the most essential information, to sharing my face with you on Flickr. The writing has got easier as I've come to know more of my reader's as real people, and felt comfortable about sharing some of my deepest emotions and fears with you.

And it's been a pretty big year. From trips to the USA and Italy, through countless frustrating highs and scarier lows. From pump malfunctions to new technology in the form of continuous monitoring. Through hospital admissions, the third rupture of, and subsequent surgery on, my achilles tendon and the diagnosis of Addison's Disease. From lows and depressions that kept me away for over a month, and even from D-blog day itself, to finding... something really special.

The last one is the one I want to hang on to. It makes everything else seem all to matter less, to frustrate and scare me less, to hurt me less. Based on its final outcome, I can only say 2006 turned out to be a pretty good year.

In summary, here is my "Year in Review", shamelessly copied from Rachel, Sandra and Kerri. These are the first lines from a defining post for each month of the year, linked in case you want to read on.   

January: "I hate beginnings."

February: "It wouldn't take great powers of observation to realise that I’m being pretty generic here.

March: "In November 1999, as a 19 year old who’d just begun my second year of dental school, I woke up in the Accident and Emergency Department of St Thomas’ Hospital with the mother of all headaches."

April: "Sandra's post 'A Dinner Out' got me thinking."

May: "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."

June: "My new cast, applied today."

July: "More than twenty years on, the autoimmunity that gave me diabetes has decided to reward me for my loyalty with a free gift: Addison's Disease."

August: "I'd intended on an early night last night."      

September: "The Paradigm REAL-Time system really is the Guardian RT all grown up."

October: Defining in itself - I made no posts in October.

November: "D-blog day: I missed it."

December: “Come ooooon…..” I whined, zipped into my coat practically before my boy, R, was dry from the shower.

Here's to 2007! Happy New Year everyone!

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.

Learning to Fly

Thank you to everyone who commented on my last post, or took the time to email. Your thoughts, your support, your understanding is, as always, overwhelming. Kerri is right that it can be incredibly difficult to express feelings of fear and concern over the internet. It can also be very difficult to express other feelings, including gratitude. I'm finding it impossible to put in to words adequately what your responses mean to me. I can only apologise (again!) for not having at least let you know how grateful I was and how much knowing that all these people who understand are out there, somewhere, means.

I'm also finding it difficult to clearly express, and do justice to, a set of emotions at almost polar opposite to those in my last post; a very different set of experiences and feelings that have come to pass since then.

Very recently I've learned that reconnecting with people from your past can be a wondeful thing to do.

I've been discovering that teaching someone who wants to know about the ins and outs of life with diabetes can be refreshing, fun even, and something to really restore motivation.

I've found that seeing someone else take in diabetes as a part of you just as much as the colour of your hair or your favourite pastimes, and realising that they see an insulin pump no differently to the nose on your face is uplifting, and something that can really help to restore inner peace with the beast.

It has been unseasonably warm in London, to the extent of not always needing a jacket when I go out. It has done nothing for my festive spirit, but this year I'm learning that Christmas isn't necessarily the only thing that brings magic to December.

I'm lifting out of depression... I'm learning to fly.

I Missed It... Because I Was Missing the Point

D-blog day: I missed it.

And every other day for the past two months as well.

I've been busy doing a whole host of things, many of them really exciting and positive. But underneath it diabetes has been wearing me down. For some reason I've engaged in battle, a battle I know I can't win because I know diabetes won't just go away, silently and alone without sharing my feelings here or anywhere else. I've been wallowing in a loneliness not borne of having no one around me, but of having no one to share diabetes with.

I know, I only have myself to blame for being so daft!

I lay in the darkness on the floor of a house in Falmouth, Cornwall, last weekend, listening to the slow even breathing of sleeping people around me. I wasn't sleeping as inside me a tide of rage bubbled angrily and excess glucose coursed through my veins. The anger felt so strong that I physically placed my hand over my mouth to suppress the scream that threatened to release my pent up fury. Fury at the blood sugar of 17mmol that wouldn't come down. Fury that diabetes had had to repeatedly get its voice heard during a weekend away with friends that should have been simply fun and carefree. And all the while a guilty little voice was picking away inside me, nagging that the coke with those Vodkas wasn't diet, that maybe I shouldn't have had a slice of birthday cake despite it being the 30th birthday of a very good friend, that maybe I should have made the time to test my blood sugar just a little more often. I take my eye off diabetes for just one moment and it fights back, showing me who is boss.

Several weeks back I forgot to take two hydrocortisone tablets in a row. Forgetting just two doses of a tiny, bitter, white tablet was enough to send my blood sugars so low that I passed out on the number 42 bus, and was found by the driver at the end of the line, slumped in my seat with my clothes drenched through by my own sweat. The lack of cortisol had sent my blood pressure so low that the paramedics couldn't read it. I take my eye of my medications for just twelve hours, and my body gives up.

And all the while I can't help but feel desperately frustrated by, and even resentful of, people around me. The people I encounter who have diabetes themselves, and should 'get it', but have no care for their own health and are dismissive of my attitude to mine. The friends and the people who just simply don't get it. And perhaps worst of all I'm frustrated by those who have a little knowledge. These are the people I find myself hiding my blood glucose test results from, even when they show an interest as I prick my finger, because they know enough to understand the result, but not enough to understand that highs and lows happen. That they aren't all down to something I did wrong. They aren't all my fault. So I hide my results and most of all, I hide my feelings from these people that I fear might judge me as a failure.
Because I'm also tired of the educating and telling.

The more lonely I have felt in dealing with diabetes, the more I have retreated away from the D blog community. It is easy to find excuses. Like: The simple excuse of "I don't have time right now". Like: If I don't want to think about diabetes, then I'm sure not going to sit down and write about it. And rather like with recording of blood sugars, the longer I've gone without blogging, the harder it has been to return to it.

I've been blankly staring past the obvious truth of the matter: That all the things I'm most frustrated about and that drive my sense of isolation and loneliness don't apply to the D-blog community. Because you are the people who do get it.

The very people I shouldn't be hiding from.

I may be on a different continent to the overwhelming majority of D-bloggers but, despite my occasional feelings of isolation due to the lack of other UK bloggers and the general disinterest and apathy that represents to me, there aren't really any borders, boundaries or oceans where blogging is concerned. We're all one family, and I should have been here saying that on November 9th.

I guess it is my testament and tribute to the group that I have faith that despite my prolonged absence not only from my own blog, but also from the reading of and sharing on the blogs of others, I will still be welcomed home.

This is a community that deep down we'd all rather not belong to, but if we have to have diabetes at all, I'm so thankful that it exists and that there are so many others out there who always understand and frequently share my feelings.

I Don't Do That!

I had coffee this evening with a friend from dental school who is currently working as a Senior House Officer (SHO) in Maxillofacial Surgery. I haven't seen her for a while and this was the first time she had seen me wearing the Guardian RT. Since she was interested, and already familiar with my pump and the concept of infusion sites, I showed her the sensor and transmitter.

"I'm not sure I could cope with wearing all that stuff" she said.

I guess this could almost be perceived as an equivalent to the people who exclaim "I could never inject myself!". The standard retort to such a ridiculous suggestion being "Between death or injections, which would you choose?" It's a no-brainer.

But I don't think this is the same.  After all, using an insulin pump and wearing a continuous monitor are choices that we make in a way that we can't with the idea of simply taking insulin. And many people with diabetes who are hesitant about pumping feel that way due to a fear of being attached to something twenty-four-seven. Maybe she wouldn't cope with it.

I put it to my friend though that, yes, I have two things stuck in me and carry two monitors around and, yes, the transmitter is bulky, but for my quality of life this is totally worth it. I can see how people, looking in from the outside, would think carrying around a pump, or having the Guardian sensor attached would interfere with life. Would be a hassle and an annoyance. But the good control and the peace of mind those things afford me is priceless. Far from interfering with my life, they allow me to lead my life on my terms.

She could see my point.

Time passed and we chatted about other things. Another SHO, the SHO on-call tonight, came in. While she chatted briefly with us, one of the two bleeps clipped to her waistband began going off. As she left to answer it I joked that "wearing this stuff [pump and monitor] isn't much different to wearing hospital bleeps, even down to them screaming at you at inopportune moments."

My friend replied "Yeah, but I don't wear my bleeps during sex."

I couldn't do anything but laugh, and concede that she probably doesn't wear them in her bra either!

Low and Alone

I'd intended on an early night last night. I was exhausted from those ridiculous highs, caused by a failing infusion set and prolonged by my stubbornness - choosing to rage bolus rather than take a shot or change it at around 1am. I gave in at 5am when I met that second peak, along with a bunch of ketones and I spent the day with a tired, hungover feeling.

But the early night never happened.

Instead I became mesmerised by tracking the progression of this flat line low, that saw my blood sugar stay under 4.0 mmol/l (72mg/dl) for over six hours, as I shovelled carbs into my mouth until I thought I would surely burst. For the first time since I started using it, I wanted the Guardian to be wrong, to be misreading the numbers and misleading me. I made my way through more than 10 test strips in my quest to catch it out. The Guardian just wailed sweetly at me, the technological equivalent of a smug smile. If it wasn't for the fact that it was actually doing me a favour, I'd have hurled it against the wall.

I didn't want to go to sleep until I could see an end to this. I pulled back my basal rates dramatically and watched trashy TV, waiting for the carbs to hit, and the decreased basal to take effect. Eventually, a little after midnight, a finger stick yielded 8.3 (150) and then I must have drifted off.

I was awoken around half an hour later by the insistent alarm of the Guardian. I was back to 3.9 (70)

Lying in the darkness, the window open just a little, I could hear the distant screaming of sirens. An ambulance, perhaps, racing across London's streets. Of course I was thankful that it wasn't coming to me, but at the same time I was acutely aware that even if I had needed it, it wouldn't be coming. Because there was no one else there to call it. Just me, on my own.

Twenty minutes later the Guardian stirred to life again. As I simultaneously reached with one hand to silence it, and with the other to my testing kit, I couldn't help but wonder if there would ever be anyone there; if I will ever find someone who will happily tolerate these rude awakenings; who will sit with me as I eat my way through the entire contents of the kitchen in a single midnight feast; who will share a bed with not only me, but also my pump and all the leftover crumbs.

I know that there are so many people with diabetes out there who have successful, supportive relationships. In fact, I wasn't going to share any of this here, feeling it may be somehow a step too intimate. Until I read Kerri's story tonight and found myself overwhelmingly unable to hold back the tears.

Even I am shocked by the intensity of my emotion. I've never felt before like I needed someone so much as I did last night. I've always been a very independent person, who likes my own company. I have a good network of friends, but despite spending the evening with several of them, I've been unable to confide any of this, because that isn't what I'm looking for. I need more than I can ask my friends to give.

I feel again now like I did last night as I continued to lie in the darkness listening to the distant sounds of a city that never sleeps: that finding what I'm looking for might just be an unreachable goal.

Tuesday Top Three

1) Today, I was a prisoner in my own lounge.

Mr Gas Man was sprawled across the central hallway of my flat for two hours, replacing the burnt out immersion heater in my hot water tank. And I chose that two hour window in which to be low.

No access to the kitchen (obvious source of carbs) - that is right where he is lying.
No access to my bedroom (glucose tabs kept by the bed) - that is right where he has piled all his tools.
No access to the bathroom (glucose tabs in the cabinet) - a large tube is draining the hot water tank into the bath tub.

And all the stubborness and irrationality of a low blood glucose preventing me from just asking the guy to move for a moment.

So today's number one is most definitely the Quick Fix Keychain

Clipped to my meter case and containing 16g worth of glucose tabs. I got my carbs without having to give in and ask. A win-win situation!

2) Also today, I dropped my pump. Twice.

So today's number two has to be Tubeguard

After my bad experience with EZ-Wrap, I love this even more. Not only does it keep my long tubing tidily away from those pesky door knobs while it isn't needed, but it also takes the place of a 'safety loop'. You know, that thing they told you at your pump training about taping down a loop of the tubing so that the infusion set doesn't get pulled out if you drop your pump. That thing that kind of negates the point of quick-to-detach infusion sets. That thing that no pumper I've ever come across actually does. But with the Tubeguard firmly clipped to a pocket or waistband, that is what takes the strain if you drop your pump.

Which I do. Far too frequently.

3) Today's number three...

... is apple flavoured hypo treatments.

After years of orange and lemon or 'original' (for which read'yuck') flavoured Lucozade, they've just brought out an apple flavour, which is delicious. It also compliments the great 'Sour Apple' Dex-4 glucose tabs, brought over from the US.

They're what I use to fill up the keychain!

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.

Adventures in Hospital

Diabetes-wise my recent hospital stay was interesting.

I slipped back into a cycle of intractable lows, some causing seizures. On admission I was wearing the Guardian RT with a four day old sensor. Since the sensors need to be refrigerated, I obviously didn't have a spare with me. Given the shaky state of my diabetes control, given that severe vertigo and photophobia made it impossible for me to test my own blood sugars or read my pump screens, and that relying on hospital staff the test my blood sugar frequently enough made me feel uneasy, I wasn't going to take it off. I was grateful to the descending tone that accompanies low alerts to warn me of appraoaching problems without me having to even look at the monitor. I was grateful for the warning it gave me to ask for help when I needed it. I managed to make the sensor last 11 days, and only took it of at that point because I was having an MRI scan.

I was blessed with a couple of great nurses, who I quickly trained to read the numbers off the Guardian to me, and I was even able to talk one of them, from memory, through programming boluses and basal changes on my pump. He listened carefully - wanted to learn and help me make it work. He gave me all the time it needed.

Some of the staff were not so great. None quite match up to the idiot nurse I had when recovering from my ankle surgery in June who refused to give me glucose powder dissolved in water when I had a blood sugar of 2 (36) because "you're diabetic and sugar is bad for you. It will kill you." I kid you not. Yet he was quite happy to give me other things which contained sugar and went on tell me that he had a degree and knew what he was talking about. I retorted that I have two degrees and in future would he not call be by my first name but address me as Dr. follwed by last name (a title I am legally entitled to use, although in practice rarely do). That eventually shut him up.

This time around was not quite so bad, but almost.

On my last night in hospital, a night that I hadn't wanted to stay, but had been coerced into doing so by my diabetes consultant I was utterly exhausted. If there is one thing a hospital stay isn't, it's restful. I was relying on staff to check my blood sugar every two hours as requested by my consultant.

It didn't happen.

The last check performed was at midnight, which as around 4 (72). No one woke me and told me that or suggested that I eat a snack.

I woke with a pounding headache at 6.30am and checked the blood glucose log sheet to find that no tests had been done. A quick test with my own meter revealed 2.1 (36)

This is where it gets good.

I called a nurse and told her the number. She dutifully wrote it down and turned to walk away.

"Erm... I need some glucose." I said

"Oh. You want some Lucozade."

This was hardly a matter of want. This was definitely a matter of need.

She reappeared a few minutes later. "We've run out."

"OOO...Kay. Could I just have some sugar in water, or some glucose gel or something?"

"Hold on."

A couple of minutes later she's eventually back with a tube of glucose gel, which I swallow. Ten minutes later my blood sugar is cruising back up and I pull the sheet over my head and go back to sleep.

It seemed this little event had at least alerted everyone to the fact that they'd forgotten to check on me through the night. Around 45 minutes later someone was shaking me awake.

"Caroline... Caroline. We've got you some hot chocolate. You've got to drink it."

I thought I was in some weird dream. At half past seven in the morning this strange person is leaning over me with a small cardboard cup of steaming chocolate telling me that I must drink it. I was having trouble making that compute.

It turns out that on re-testing my blood sugar as I slept, they'd found it had dropped back down. Now out of not only Lucozade but also glucose gel, their solution to the problem was to make me drink hot chocolate.

What?

There were many more sensible solutions to this. Borrowing Lucozade or glucose from a neighbouring ward, dissolving sugar in water or even just bringing me my breakfast which was due round pretty soon anyway.

But hot chocolate?

One of those small cups has around 5g of carbs in in. It is boiling hot, necessitating at least a ten minute wait until you can drink it, and when you finally do the fat in there retards the absorption of the meagre carbs anyway.

Even a little hypoglycaemic I could work this out. And I was stunned.

Later that morning when my consultant paid me a visit, I guess I took it out on him.

He's a lovely guy. In fact he has only just become a consultant, and I have known him for a long time wile he was still training. I have a lot of respect for him.

"I would have been a whole lot better off at home last night" I said. "I can give you a list of reasons why."

I told him about the failure to check my sugars. How if I had been at home I would have had the benefit of the Guardian RT alarms, plus setting my alarm clock myself for every couple of hours. I told him how I would have had several sources of glucose, plus long acting carbs available. How I could have eaten a bedtime snack. I told him how being able to eat decent food - food that I wanted, when I wanted it - might be very helpful in preventing these lows anyway. I told him how I would scream if one more member of staff referred to my pump as a sliding scale, and asked me when I would be coming off it - as if returning to injections signified something good. I told him the bottom line: now past the acute illness, I would feel safer at home.

He listened very patiently. Let me tell it all to him.

Then he thanked me.

He thanked me for highlighting that there was still a huge misunderstanding about pumps within the hospital. He thanked me for bringing the ridiculous hypo treatment protocols to light. He agreed that it simply wasn't good enough. He even said it would be better if the hospital was able to get RT sensors for patients who come in wearing the RT, even though they are currently rare. He agreed the RT was good for me right now, which is a breakthrough where it is still largely greeted with scepticism. He took out a piece of paper and carefully listed the concerns.

He promised to address them. To try and make something change. So that if I return, I might feel a little bit safer in my bed.

I know he faces a huge task to try and effect change, and I won't be surprised if it doesn't happen. But his willingness is what counts. The fact that he always listens, treats me like an equal even when I'm losing it with frustration about diabetes and doesn't judge me for it.

That is what I call a star. I just hope he knows that I think that.

 

Home From Hospital; Or is Hospital Becoming My Home?

I think the title says a lot.

Maybe the details don't really matter.

Or at least the details of what happened to earn me another nine day stay in hospital. Suffice it to say I was very ill.

The deatils of how I feel about it?

I guess they matter to me.

I'm frustrated by my continual ability to succumb to illness, to completely lose control and to need to depend on others to fix it for me. I'm frustrated with a body that keeps letting me down and making this happen.

I know.

It's not my fault.

There is nothing I could have done to manage this alone, or to prevent it from happening.

But that doesn't make me any less depressed about the whole thing.