Diabetes Wise

From a Whisper to a Roar: A Promise to Myself

This year I reach my quarter century with Type 1 Diabetes.

I'm twenty-eight years old.

Diabetes isn't simply a part of my life. It is my life. I don't remember any other way.

When I was three years old, I don't suppose I even had a grasp of the concept of 'forever'. Or 'for life'. Or, more simply, that this would never go away. That everywhere I went in my life diabetes would be along for the ride. That every achievement I made would be made with diabetes in the background. But I've known for a long time now that this is the reality.

I've never been the kind of person to spend a lot of time thinking about, or hoping for, a cure.

Of course I want a cure, but it is simply something I don't allow myself to dwell upon. Instead I carry just the tiniest nugget of hope, locked deep in my heart. I allow myself only the most occasional indulgence, opening up that place and allowing it to spread, to flood through me until I can almost taste it. But I can't afford to live a dream with the beast of diabetes always my back.  The reality of blood glucose tests, balancing food, exercise and stress against illness. I don't have time to to constantly dream of a maybe.

I'd destroy myself if I did. Which is why I shut it away deeply.

The one wish I've always held more prominently is a simpler one.

From the first moment that I realised that I knew far more about diabetes than any of the well meaning people who liked to offer unsolicited advice, and even than the so-called medical specialists who had no idea what it felt like to wake up in a middle of the light low, shaking, drenched in sweat and afraid that a dearly loved teddy bear had grown larger and come alive, I've had a fairly simple dream.

I want people who don't live with diabetes, who aren't personally affected by it to be able to "get it". I hope for people to know the truth of this condition, not what the media feeds them.

I want them to know that nobody brings this upon themselves. It isn't caused by eating too much sugar or being overweight.

I want them to know what it feels like to keep this with you every day. I want them to know that injections, finger pricks and wearing a pump aren't the hard parts. It's the constant unpredictability, juggling so many different factors in a quest to stay in control. It's the way a low or a high makes me feel.

I want them to know that highs and lows happen and that it isn't usually because I "did something wrong." I want them to know that diabetes doesn't have to stop me eating what I want, or doing what I want, but sometimes in a particular situation it will: it isn't an excuse.

I want them to know what it feels like to really feel fear. To fear lows that creep stealthily over like a shadow while sleeping. To fear the long term complications, including blindness, heart disease, kidney failure, neuropathy. These are all things that have the potenial to end life as I know it.

I want them to realise that I do this every waking minute of every day. There isn't much they're going to be able to tell me. There are no miracle cures. I want support in my efforts to live healthily ad take care of myself, but I don't want unsolicited advice from people who hardly know me.

Writing this here, though, I'm preaching to the converted, and that is something that is easy to do. Almost everyone who comes here is already affected by diabetes and already knows these things.

Somewhere in the last twenty five years I've lost the will to keep shouting the same message over and over to the people who don't have a clue, to see it going straight in to one ear before drifting lazily back out of the other.

My simple wish, once a raging fire, has withered to a tiny ember, kept locked tighter, deeper even than my wish for a cure. All that escapes these days is the occasional whisper of smoke.

But today, all around the blogosphere, people with Type 1 diabetes are raising their voices to raise awareness of Type 1 Diabetes, as distinct from its more common cousin, Type 2.

I may not be able to make much difference by writing here, but today, I've made myself a promise. Over the next week I'll begin to work on turning those whispers in to shouts and roars.

Maybe if I can help just one new person to "get it", that will be enough to reignite the flame of hope.

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...

Moving On...

I feel a need to write this post, because six weeks on, I don't want heartbreak to be at the top of the page anymore. And it's also about time I thanked everyone for all your comments and support on my last entry. Your comments, as always, really meant a lot to me and brought light in to a dark place.

I've spent the last six weeks in that strange post-relationship landscape that anyone who's ever had a relationship end will surely always remember. I've certainly walked this street before. Looking back and sorting through tangled emotions whilst getting on with day-to-day life and trying to think about moving forward. But what starts out bleak, tough and upsetting eventually ends up something close to liberating.

I've cried a lot. Especially in the beginning, using countless tissues and finding myself unable to stop even though I've been aware it wasn't making me feel any better. Taking the train to Liverpool one last time to retrieve my belongings was particularly hard, despite that fact that I didn't even see Rob. The only thing that seemed different when I arrived was the absence of my cards and notes that he used to keep beside his bed.

I've gone through the helpless soul-searching 'what's wrong with me?' moments. I've felt lost and lonely, watching the 'Liverpool life' of which I'd been a part for so many months, continuing - through the photos appearing on Facebook - and dealing with the fact that it wasn't part of my reality anymore. And I've dealt with the loss of more than just my relationship with Rob, realising that certain people I'd thought were friends no longer see me that way now that I'm no longer half of a couple. It's good to find out what people are really like, but that doesn't mean it doesn't hurt. In some ways the loss of friendships - and I  include in that my friendship with Rob - and the lifestyle we had together have been the hardest parts of the whole split. The distance magnifies things. I don't go to Liverpool so I don't "bump-into" these people. I miss people.

But there is a positive slant. Last week I finally felt ready to pick up the phone, if only to try and cement some closure. Rob and I talked for three quarters of an hour and I came away knowing that the man I had loved was still inside there somewhere, that I hadn't imagined it all. Neither of us wants to exclude the other entirely from our lives, and I'm feeling positive that we've managed to break up without hating each other.

And the very distance between us has perhaps made it easier to move on. I'm not simply living the same life minus a partner. I'm living a new, different life. I've done a lot of things in the last six weeks. I've spent more nights at the pub than I should. I've gone out with friends and stayed up all all night to watch the sun rise in the morning. I've stayed out in the rain until I was soaked through to the skin, but had a good time anyway. I've had lunch with two amazing women, one in her eighties and the other in her nineties, both of whom were friends with my grandmother when they were younger than I am now. I've drunk more alcohol than I probably should on more than one occasion. I've aggressively pursued my rock climbing, pushing the grades I can climb, free of fear of not measuring up. I've made several new friends, one of whom in particular has rapidly become very close to me.

I'm making plans for the future too. I'm planning for trips abroad, I've made decisions about my professional future. Next week I'll be ditching my skis to try snowboarding for the first time.

I feel strangely free, with an incredible amount more time on my hands to rediscover my beloved city, instead of jumping on a train out of it every other weekend.

With distance, with the support and perspective of others, I can also see that there is nothing wrong with me. It was the right thing for this to end. In fact, some of the anxiety that had begun to plague me prior to the split has actually been lifted and in several ways I'm a happier person. In a way I can't quite condense into words, though, I still love Rob. Being in love is what held me with him and made the end so painful, but inside I think knew it wasn't going to be forever.

Most importantly though, I don't regret a single moment of our time together. How can I, when it was utterly right at the time and enriched so many of my days beyond measure?   

Which Way Out of Heartbreak?

This is a difficult post to write, especially on Valentine's Day.

The day after we arrived back from Italy, Rob stayed down in London with me. I had to get up and go to work the following morning. I left Rob in bed, still half asleep, giving him a kiss and a cuddle and reminding him I much I love him.

I didn't know that would be it. The end of the road.

Last Saturday, Rob reached inside my chest, grabbed out my heart and squeezed it until it broke. Or at least he may as well have done. I've been left scrabbling around on the floor, trying to fit the pieces back together.

I spoke to Rob on the phone at two thirty in the morning last Saturday. He told me, as always, how much he loved and missed me, how he couldn't wait to be with me again the next weekend.

Eleven hours later we spoke. He told me again that he loved me but then, like a bolt from the blue, told me that it wasn't enough, that he didn't want to go on with our relationship.

In that second, standing in a hot overcrowded room at a professional conference, my world began to unravel and nothing has been the same the since.

I have no idea what changed in the space of eleven hours. I'm perhaps more scared that nothing did. The love that Rob expressed to me in the middle of the night seemed as genuine and sincere as always. But Rob is a terrible liar, completely unable to hide his true feelings. Real love has no off switch, and I refuse to believe this was a snap decision, he must have already known at half past two what he planned to do when the sun had risen. If he didn't mean it when he told me he loved me then, that leaves only one logical conclusion.

He never has meant it.

The man who made me feel all this. My buddy, my rock, my partner in crime. The person I wanted to share my highs and lows with. The person who understood me and what makes me tick. The guy who was always there, at the end of the phone line, at the end of the train line. The one person who never failed to make me smile, make me laugh, make me love.

Now all he makes me do is cry. All he makes me feel is hurt. In an instant, it's all gone and I'm left wondering if it was ever there in the first place.

I can't find the words to describe how hurt I am, not simply by what has happened, but also the way it was done. Ending a long term, serious relationship over the telephone, even if you are 200 miles apart, just isn't fair. If I meant anything at all, I think he owed it to me to break the news face to face. This is the anger that tempers my tears.

I feel a little like I'm turning in an emotional spin dryer. I can't bear the thought of speaking with Rob, or seeing him again right now. I'm afraid I'd lose my dignity. I'm afraid it would hurt more than I can bear. But at the same time, the thought of never seeing Rob again, of him no longer being a part of my life at all is terrifying.

I'm still not sure that I really know how to get through this, how to find my way out of this heartbreak.

On Monday evening, I went to take my frustrations out on an indoor climbing wall. It's a hobby which, ironically, I took up because Rob loves it so much.

Halfway through a top-roped climb I found myself stuck, unable to figure out my next move, the only logical step for my right foot feeling insurmountable. I looked down, wanting to shout "I can't do it." In that unnatural position, arms and legs spread hanging on to an artificial rock face, I realised that climbing serves as something of a metaphor for life.

You can't look down or backwards. The only way is onwards, upwards, even if you have to push yourself through the pain to do it. You have to trust your belayer not to let you fall like you trust your friends to catch you when life gets tough.

And when you reach the top of an indoor climbing wall, the only way is down.

With heartbreak, the only way is through.

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!

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.