Diabetes Wise

Off to the Milky Way

On Sunday morning, myself and 12 others, including Rob, are off to the Italian Alps for a week of skiing. We're staying in the resort of Sauze d'Oulx, which along with neighbouring Sansicario and Sestriere, was home to the 2006 Winter Olympics. Sauze is at the far Italian end of the extensive Milky Way and it's possible to ski all the way through to France, although by all accounts you need an early start and luck with lift lines to get there and back in a day.

My ankle injury has kept me away from the slopes for the last four years. Although I've been given the go-ahead by my orthopaedic surgeon I've no idea how my ankle will cope, but I've been itching to get skis on my feet again. In fact, the 5.45am flight from Gatwick notwithstanding, I'm looking forward to every minute of next week.

This will be my first experience of skiing with CGM, and I'm looking forward to seeing what happens to my trends. My insulin needs dropped by 50% the last week that I spent on snow, but I'm the first to admit my control was less than ideal. Fingersticks can be impractical and difficult at best, downright impossible at worst. I've also been known to lose my test kit off a chairlift, fortunately not whilst above marked piste, so no one was injured by my projectile! The challenge this time will be figuring where to put my pump so it is accessible enough to see the CGM readings easily but stays warm enough and isn't in danger of injuring me if (probably more like when) I fall. Any tips on CGMing/pumping/coping with diabetes in general while skiing gratefully received!

I'll let you know how I got on when I'm back next week, hopefully without any injuries!

I had my cake and ate it too: A Happy Birthday

Today I celebrated my 28th birthday.

This led to a complete inability to write the date down correctly, as 22/01/08 would automatically morph beneath my pen in to 22/01/80, the date I've been using every time I've been asked for my birth date in the last 28 years!

Diabetes-wise it was a great day. I had a huge chunk of delicious birthday cake, and near perfect blood sugars to follow. I'd say I ate my cake and had it too!

Can't believe twenty eight years have gone by, but here's to the next twenty eight... and more beyond!

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.

A Pretty Crappy Week, All Told

A little like buses, crappy things seem to have a habit of all coming along together. After a crappy week in so many respects, I've came home tonight feeling totally physically and emotionally exhausted. For various reasons Rob wasn't able to leave Liverpool on time and won't be with me until sometime around midnight. Feeling lonely and overwhelmed, two hours later, I haven't moved.

I'm holding a letter in my hands. I've read and re-read it, trying to make some sense of the mess of words, trying to find it saying something other than what it so clearly shouts.

Phrases like "audit meeting", biomedically difficult to justify", "no definition of measureable benefit" jump out from the page.

There are concessions. There are "ifs". There are "reviews". There are "steps". But they jumble to fog in my brain. The real message is so thinly veiled, it is the only thing to emerge easily from the mist.

This is the letter that screams that the diabetes team believe the battle for CGM approval and support is over.

They think I'll let it go now.

But I can't let it go.

I cannot let it go.

I need this device. Without it, I sleep less well at night. I go to work tired, or hungover from highs and lows and perform surgical procedures on vulnerable people. People who have a right to expect me to be fit to do what I do. People who deserve the best of me. People who have a right to good care on the National Health Service.

And denying me good care puts their care in jeopardy.

Not directly. I'd lose my registration if I were not fit to practice. But fit to practice means running high, staying out of the clutches of the low levels that wash over me without a whisper of warning. It means degloving and leaving the room in the middle of a procedure just to check I'm not dropping too low, while the patient wonders what the hell is going on. It means wondering everyday what damage I might be doing to my body, what sacrifices I might be making for the career I love.

I diffuse the worry the only way I know how: offsetting the highs with lows to drag my A1c back down to an acceptable number. I let myself hover at around the 3mmol mark for hours on end when I am not working, using test strip after test strip as I balance along an uncertain knife edge.

The NHS wants me as a dentist, but does not want to contribute to the 24 sensors per year I am asking for.

Just 24. That is all.

This is no longer just about me. There are so many others out there who could probably benefit even more than me from this technology. People who don't have the means or the energy to tackle it.

There is a message in my voice mailbox  from yesterday. It's from a representative at Medtronic UK's PR agency. I didn't return the call today, because I was afraid. I don't really want to take a public route, but Medtronic have a vested interest in getting this technology recognised. The chance to play a role is being offered to me on a plate.

I believe in this technology. On Monday morning I'm making that call.

Diabetes is Legend... I Dream

Last night I finished reading Richard Matheson's I Am Legend, the book on which the recent film of the same name was based. Based, it turned out, in a very loose way.

It is unusual for me to read a book after seeing the film. I have seen enough books made into films to know that I usually enjoy the book more. If I've enjoyed a book, I won't normally see a film (or TV) show based on it, for fear of it ruining my visual and emotional perceptions of the story. (The Golden Compass, based on Phillip Pullman's Northern Lights, was a recent exception.) And if a book isn't any good... well then why would I bother seeing a film based on it?!

The film was certainly poorer for abandoning the original vampire concept. In the book, the theme of legend is revisited throughout through discussion of the legend of vampires. Oh, and Robert Neville is a very different man.

I don't want to spoil either film or book for those who haven't seen or read (and I highly recommend that you do read the book) but something that did strike me was the difference in the endings. I'm certainly not the only person in the world who was disappointed by the "Hollywood" ending of the film and I also know I'm not alone in having been more satisfied by what Matheson had to offer. Crucially though, Matheson's Neville was not a legend for the reasons given in the voice over at the end of the film. The legend instead relates to the assumed  end of the human race, and the fact that in turn humans could pass over to become the same kind of legend as vampires hitherto had been.

As I finished the book, then immediately had to turn my attention to changing out my reservoir and infusion set and dealing with a lingering stubborn high blood sugar, I couldn't help but feel a fleeting wish for the day when the eradication of diabetes would be so complete that it would become the stuff of legend.

And as if that wasn't enough, the idea haunted my dreams too.

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.

 

Numbers for the New Year

Happy New Year!

Continuing on the numbers theme...

I'll be celebrating my 28th birthday three weeks yesterday.
I'll shortly reach the six year anniversary of my pump start.
This year will mark seven years of living with the stigma of epilepsy and 2 years of living with Addison's.
I will also reach my twenty-fifth year of diabetes.

Twenty-five years.

Blimey. I don't know where the time went, but I know I've come a long way.

Yesterday was also the third anniversary of this blog.

I'd have liked to have posted yesterday, but I didn't expect to spend so much of my day travelling half-way around the country on a series of different trains. I was hoping that in next year's statistics, the number of complaints made to Virgin trains would be zero. Sadly that statistic is already at one.

Strictly speaking the chaos was not Virgin Trains' fault. It was caused by Network Rail over running on engineering works. But it turned my simple, direct three hour service to turn in to a three-changes-and-a-ten-minute-route-march-through-Birmingham-city-centre service. It took six hours and I was thoroughly unimpressed with Virgin's response to the situation - they cancelled the replacement bus services, gave us no information and left this type 1 diabetic with no access to food. (Don't worry, I had snacks, but I was rather hungry without any dinner!)

And guess what? They still aren't done with the engineering work! Britain, railways and joke make comfortable companions in a sentence. Lord knows what will happen if the forecast snow arrives tomorrow...

There is one other disappointing statistic already this year: In the six years I've been pumping, I've never before had a site infection. 2008 has brought my first.

When I use my thighs for sites, I've always used Quicksets or Insets. But this weekend I had only Silhouettes with me. I've successfully used Sils in my abdomen, hips, buttocks and arms. This was the first time I'd used one in my thigh. It had grown increasingly painful and red looking over the last couple of days, winking at me everytime I went to the bathroom.

I knew it wasn't working right. The 150% basal I was running was a big clue. But my journey was bad enough, I didn't have a chance to start changing out a set on an overcrowded train. And when I got home, well, I should have changed it then. But I was exhausted. I wanted to sleep. Stubborn little me took a somewhat generous bolus via syringe, knowing it would account for missing basal, for the snack I ate before bed and went to sleep.

The syringe bolus worked. At 2am I was at 7.3 (131).

Unfortunately by 6am I was at 19 (342) and nauseated with ketones.

Pulling the old set revealed an angry red mountain with a little nodding yellow head. I only had to touch the skin nearby lightly for the mountain to erupt like a volcano.

Ewww.

So I've spent the first working day of the new year with a pounding, throbbing volcano along for the ride on my thigh.

But I have my secret sidekick antibiotics, so here's hoping he won't be sticking around for much of this brand new shiny year!