Diabetes Wise

Going The Distance

For the last year, every other Friday, or perhaps every third Friday, I've rushed from work to Euston station to board the overcrowded Virgin Trains service to Liverpool, approximately 200 miles north west of London. And each corresponding Sunday, I've done the journey in reverse. In short, I've been a weekend commuter.

I hate the journey. The rush to make it to the station on time, the fight to secure a seat, the terrible food and lack of WiFi, the delays and the overpricing.

I do it because I'm in love with the man who meets me at Liverpool Lime Street Station.

It was a year ago today that we took our first, tentative steps on this journey. It's been a winding road of discovery, with highs  and lows along the way. But when I look back, I can hardly remember where I started out from .

Rob, I love you.

Facing life, diabetes and other challenges, with you is infinitely easier than facing them without. With you, the world seems brighter in colour and richer in texture. You make me feel beautiful, special and adored. Until I found you, I never knew what was missing from my life. Now, I can't imagine being without you.

But I am. Every weekday. And although the distance, and saying goodbye every Sunday night, threaten to break my heart, you also make me strong enough to handle it until we're both in a position to make a change.

There so many moments from the last twelve months that stand out. The fun times: The week we spent in San Francisco. The restaurant meals. You squeezing me tight when I was afraid at the cinema. Indulging my passion for giraffes and taking me to see them twice. The things your friends said you'd said about me. The not so good times that you somehow made good: One of the first nights we ever spent together, you got up in the middle of the night to find me sugar. The time you sprinted down the road to find cranberry juice for me. The time you held my hair back as I was throwing up.

I remember the time I couldn't bear to say goodbye, so I got on a train and came all the way back to Liverpool with you, because I didn't have to work the following day.

I remember the moment you told me that you loved me.

I remember realising that I already knew, because you'd already shown me.

Thank you, Rob, for being there for me, even when we're far apart. Even when I'm in a bad mood, stressed out or exhausted. Thank you for understanding. Thank you for going the distance with me and making this work.

Thank you too, for the twelve red roses you sent me today at work. Even though they arrived in front of a waiting room full of patients, I cried. They stood in my surgery all afternoon and I was proud to tell every patient, when they asked, that they were a gift from my boyfriend.

Because he loves me.

I love you too.

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...

Swan Lake

I went to see Derek Deane's interpretation of Swan Lake, performed by the English National Ballet, at the Royal Albert Hall last night.

Simply put, it was amazing.

Being in the round really brings ballet to life. We were on the second tier looking down at the dance - an enormous piece of moving artwork, filled with grace, poise and elegance.

For almost three hours I was lost in the magic as Siegfried chased Odette and Rothbart fooled him in to betrayal. As Siegfried and Rothbart - good and evil - fought, before Siegfried and Odette were finally united in eternal love.

And for three hours I didn't think about diabetes once.  I was wearing a gorgeous LBD, (Little Black Dress) my pump slipped securely inside my bra. For three hours there was not a peep. No high alarms, no low alarms. Just my basal trickling in, allowing me to enjoy the atmosphere.

That just added to the magic.

I only wish I could experience it more often.

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.

Mastering Diabetes?

Sandra's post A Dinner Out got me thinking. I had a lot of trouble composing a comment partly because it set me thinking so hard. It gave me, like others who commented, a spotlight on what it feels like as a parent of a kid with diabetes. This is something that I am continually thankful to the parents who blog for. But this post made me realise that I haven't ever actually talked with my parents about this. We've talked about diabetes a lot, but I've never asked them how they dealt with it emotionally. Or how they still feel about it. And it made me want to go and ask them.

Something else struck me from that post though.

The concept of 'Mastering Diabetes.'

It set me thinking about exactly how 'mastering diabetes' could be defined. At what point would I, or anyone else who lives with diabetes, feel able to say:

"I've got it. I've mastered diabetes"

I've wondered whether it is on a purely emotional level. Is it reaching the point where diabetes is no longer the first thought when we wake up, the last thought at night and the only thought that fills the moments in between, regardless of the level of control? I'm not convinced that it can be, because that point seems easy enough to reach through pure denial of diabetes and doing nothing at all to attempt to manage it. I'm pretty sure that doesn't define mastering diabetes.

On the opposite side of the spectrum, is it a purely clinical thing? Consistently maintaining an A1c of, say, 7% or 6%. Or perhaps lower than that, even closer to 'normal limits'. Say 5%. But then, what if that value is the average of a wild bunch of numbers? Always too high or much too low, but rarely right on target. What if that result is at the expense of other 'normal' aspects of life? Suppose that you achieve it through thinking of nothing but diabetes, eating the exact same three rigid meals every day, never eating in a restaurant, never taking a holiday, never having any fun. Can you say that you have mastered something if it takes such a drastic reinvention to do it? Have you mastered something if it is that all-consuming, or has it mastered you?

Johnboy commented on this post

"Maybe if we concentrate on outscoring our figurative D opponent (and perhaps beating the point spread) that will suffice for now?"

This statement seems to capture elements of both the emotional and clinical; The emotional outscoring of the opponent; The clinical reduction in the variation of blood glucose.

So is mastering diabetes best represented by making it fit into life, so that we can do all of the things that we want to, knowing what adjustments to make, and when, without having to devote any time to working them out, sucessfully avoiding highs, lows, swings and complications, and all without getting frustrated? Is diabetes mastered when it no longer stops us from doing absolutely anything, be that through blood sugars that are too high or too low, or the fear them, or through our own stupidity? Excellent control with minimal intellectual and emotional investment.

Is that even possible?

I guess then that I fear that mastering diabetes is something that lies out of our hands, as patients and carers, entirely. Is it more likely to be something that comes from the labs? Will diabetes really only be mastered when we have a cure?

Or is our very best good enough?

What the...?

Incident Number One

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

Result? 5.9 (106)

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

Result? 1.3 (23)

What the...?

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

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

I'm with Allison  on this one!

Incident Number Two

Just over two hours after dinner, I test.

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

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

Result? 16.6 (298)

What the...?

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

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

Result? 20.1 (362)

What the...?

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

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

Result? 14 (252)

Now I'm really serious: What the fuck?

I took EIGHT units of insulin, with a SYRINGE!

How can I possibly be 14?

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

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

Damn, I hate this thing at times.

Pear-Shaped

I wish... I wish...

I think what I wish is that the title of this blog reflected me as a person, rather than what I seek to be. That is to say, I would love to be so wise about diabetes that this blog would be nothing more than a means to share my wisdom and insights, to give encouragement and just maybe a little sprinkling of inspiration. But it isn't like that. Diabetes will never be like that. No one will ever have all the answers, because the questions keep changing, and sometimes I'm reminded of that in the most surprising ways.

There was a programme on BBC2 last night called Balderdash and Piffle, which aims to explore the etymology of common words and phrases. Words fascinate me. For as long as I can remember I have played with words, turning them back to front or exchanging letters, even making up entirely new, entirely nonsense words. So Balderdash and Piffle seemed right up my street. What I wasn't expecting was that it would pull me up on how I feel about my diabetes control right now, something that, in all honesty, I've probably been avoiding confronting for a couple of weeks. I wasn't expecting a TV programme to force me to confront the fact that the goalposts have moved again.

The first episode of the series focused on the 'P' words. Among them was pear-shaped (a phrase more than a word, I guess.) In line with the current trend for being "interactive" the programme has invited viewers to contact them with documentary evidence of the origin of the various words that pre-dates the evidence currently available to the folks at the Oxford Dictionary. Suggestions for the origin of pear-shaped ranged from loop-the-loops in aeroplanes to glass blowing, but in a moment it hit me that I had a definition. True, it didn't pre-date the requirement of pre-dating the currently available evidence of origin, but my definition could have been the origin if the phrase did not already exist.

Pear-shaped = my diabetes control.

When I say pear-shaped, I mean it quite literally. Imagine if I drew blood glucose control as a continuous line, joining itself where it began, and imagine very good to perfect control as a neat circle, with midnight at 12 on the clock face and midday at 6. Now imagine the drawing of my control as it is right now. It would look more like a pear, wider, much less circular and out of control at the bottom than at the top. My blood sugars between around 10am and 6pm are so hopelessly varied that the lack of pattern is the only pattern.

So there we are. It is said now. I wrote on January 1st that I don't have an concrete reason for getting down to this right now, but perhaps, albeit subconsciously, I do. Perhaps the gradual slide out of control is a good reason to be doing this; to seek support and focus on things. Last year I had A1cs consistently in the sixes. Not any more, I don't think. So I am back to the only too familiar ground of seeking solutions to the problem of good control. Looking for more answers to how my diabetes works.

With regards to the level of diabetes wisdom that can be achieved, I guess I need to remember the words of William Faulkner:

"The end of wisdom is to dream high enough to lose the dream in the seeking of it"

In other words if I dare to dream that my control will always be perfect, I'll never achieve it. And that  won't give me any kind of wisdom.