Diabetes Wise

An Open Letter

I've been overtaken by life in the last week, and that is why I haven't written anything here. What I am publishing here now is an open letter, to someone who will know who they are if they happen to read it, although I recognise that the chances of that are quite small. This is the only way I feel able to coherently put down my side which I feel a need to do before moving on. If you are reading this rest assured that every word is written in truth - fact and emotion.

For everyone else... perhaps you will be able to read between the lines.

Dear...

You have hurt me so much in the space of the last week. You earned my trust, but then broke in through all of my defences, surprising even me with your power.

Just so we can get this clear… You are wrong.

Nothing about my health has ever influenced my ability to do a job, and that is why it isn’t relevant. I haven’t been dishonest, because I would have told you everything at the relevant point in time. It is not something I ‘fess up about on first meeting someone because it doesn’t define me and it has no bearing on my ability to do my job, which should be your only concern.

As a student, I had to fight. First I fought for my life. When I was done with winning that battle, I had instead to fight the prejudices of narrow-minded, cold-hearted people, all alongside getting two good degrees.

You cannot comprehend how it feels to have these prejudices resurface at this distance from their origin, when the information that spawned them is old, and no longer accurate. After all, you didn’t get this from anyone with the legitimate authority to know the current details.

Perhaps that is what hurts most of all. That you didn’t ask me. You didn’t come to me to talk it over. You didn’t let me point you to the only people who have up-to-date records about my health for further, accurate, information. You jumped to conclusions based on evidence from an illegitimate source. And as far as my real referees were concerned, you only had interest in putting words in their mouth, not listening to what they had to say. And then had the gall to project your own feelings on to them, to blame them for all of this.

And just so we are clear… I know that you lied.

It hurts that you planted a seed of doubt in my mind about the integrity of people I trust, people I’ve always believed to be on my side and who have only ever been supportive of me. For the record, those people are still on my side, and no one else can believe what you have done either.

The betrayal of confidence, the giving of old and irrelevant personal information, wasn’t just to you, it was also done by you. I know you didn’t get your information from the sources you claimed, because I have the proof. But when you spoke with those people, you were less than discretionary with the information. I have no doubt that you were panicking, that you felt desperate enough to try to put the words in their mouth so that you could tell me that it was them that betrayed me. But it was you who betrayed me. Suppose those people hadn’t known those things about me, and suppose I didn’t want them to. I have a right to privacy and confidentiality, and to forget that is so unprofessional it beggars belief.

At the end of the day, just who do you think are to judge? None of the people that matter share your opinions. The GDC do not share your view, neither do the providers of my professional indemnity, or my doctors. And most crucially, neither do I, because I know my limits. I know what I can and what I cannot do. You talk to me as if I have never worked in stressful situations before, and were rude enough to suggest I hadn’t actually completed my vocational training, although you have a copy of the original certificate. I know my capabilities as well as my limits. So yes… lets get this clear, you are being narrow minded and discriminatory.

To say that you are not being discriminatory because of who you have now employed is irrelevant. If you made rude comments about a particular race, you would be a racist, even if your best friend were black. Not discriminating against one person does not mean you do not, or have not, discriminated against others.

What I don’t understand is exactly what you think the risk is. You seem to think that I need to live in a hospital, to have constant access to medical care. For what, exactly? I live alone, and have done for a long time, even at the height of my ill health, although admittedly with support. I have travelled across the US alone, and am soon to travel there alone again. I don’t take a doctor with me in my suitcase!

You also give no credit to the awareness for my own health that all this gives me. How it means I don’t push things, I don’t burn the candle at both ends and I listen to everything my body tells me. In many ways, I am less at risk of the collapse you seem to so fear, because I don’t take my body for granted. This has also given me empathy and a passion for caring about others, not to mention problem solving skills, the ability to multitask and to work under pressure. All, I’m sure you’ll agree, good professional qualities.

Perhaps the final irony is that, despite the stress you have caused, my health through this time, including the control of my diabetes, could not have better.

I'm moving on now, and putting this behind me. I just have to be thankful that I had a lucky escape. And hope that maybe one day, someone does this to you. Then maybe you will understand what you have done.

Scared

Let's face it, diabetes can make you scared. Often in a vague, far-off kind of way: scared of potential complications lurking in the future, scared of having, at some non-specific time in the future, a major hypoglycaemic episode.

Sometimes though diabetes makes me scared in a simple right-here, right-now kind of way. And there is nothing quite like the scare that a blood sugar that keeps on tumbling, despite every effort at intervention, can give you.

Last night was a classic example. I tested at around 10.30pm and got a 5.2 (94). I had just the very tail of a bolus on board, so I had around 15 grams of carbs, and got ready to go to sleep.

At 11pm, when slumber was persistently beckoning, I re-tested. I was surprised to see a 3.9 (70) I had another 10g of carbs and struggled to keep my eyes open a little longer so I could test again. Sometimes, when I'm that tired, I wouldn't bother. I've no idea why last night I did, why I had a strong nagging feeling that I should.

I was glad I did. At 11.20pm I was 3.4 (61). This wasn't funny anymore. I went for a full 20 grams of carb in the form of Lucozade , planning to bolus when I went shooting up. Except, I didn't.

11.40pm and my blood sugar was 2.3 (41) This was where the fear really kicked in. I'd now had a full 45 grams of carbs in the previous hour, which would usually require 3.2 units of insulin. I knocked back more Lucozade, probably around another 20 grams, but I'll admit by this stage, with my heart thumping in my chest, and sweat beading my brow, I wasn't counting.

The adrenaline was certainly flowing to fuel my fear, but it wasn't doing anything to push my blood sugar back up. At 11.55pm I hit rock bottom - almost - at 1.5 (27)

I finished off the bottle of Lucozade,  visions of me being found dead in bed by police who had broken down the door after no one had seen me for a couple of days, flashing through my head. Until...

Five past midnight and I was on the up. 2.7 (49).

Ten minutes and a couple of biscuits later 3.7 (67) My heart stopped thundering out a beat, and when I dried the sweat it didn't reappear.

By half past midnight, two hours after I first checked my blood sugar, I was at 5.8 (104). And with what I later calculated to be around 90 grams of carbs coursing through my system, I finally fell asleep.

Of course that wasn't the end of it. The result of these scenarios is almost always the same. Occasionally it might be a collapse that involves spontaneous awakening, or a collapse involving the administration of glucagon, or even something involving blue lights and paramedics. But far more often, these scenarios simply result in a rebound.

20mmol/l.

That is 360mg/dL.

I guess the carbs finally showed up on the scene then!

You've got to wonder really...

Where has the insulin that causes these lows been? They often seem to occur when there is no, or very little, active insulin on board, or perhaps after a stubborn high in which the urge to rage bolus (to steal Kerri's term) has been resisted.

Where does the ingested carb go? Even if that was what caused the later spike, rather than the stress hormones, it still took hours!

And the big one: If I hadn't started intervening when I did, where might I have ended up?

Not much wonder diabetes makes you scared, is it?

Yeay!

Guess what I had to drink today?

Yeay!

If you don't understand why this makes me happy, you need to read this post. I'd like to think I had something to do with them bringing it back, but somehow I doubt it. Just hoping it is here to stay!

Put Out

Today if I walk into a pub, chances are I'll have to choose carefully where to sit. If the people sitting near me leave and new people replace them, their presence may, if I'm eating, make me want to move. And regardless of how careful I am about where I sit, I'll certainly arrive home with my hair and clothes stinking of cigarette smoke.

From summer 2007, that will no longer be the case. On Tuesday of this week, MPs voted to ban smoking in all enclosed public places in England. No exceptions.

To me, this is a good thing.

However, during a discussion, a particularly insensitive "friend" (and obviously - as you'll see - a smoker) turned to me and asked how I would feel if testing my blood sugar in public places was banned. There was a moments stunned silence in which, I'll admit, the thought that he had a small point flashed through my head: some people do find it a bit gross. But a second after that, I was incensed.

In actual fact, I don't think the two things are even remotely comparable. For starters, testing my blood sugar is not something I have the luxury of choosing to do. It is not something I can live without. (I know that smokers will at this point chime in and say how difficult it is to give up, but they did have the choice not to begin in the first place.) I attempt to pick my times wisely, but if I'm wedged tightly between two sweaty business men on a suburban commuter service with my knees touching the person opposite and I need to test because I feel I may be high or low, then dammit I'll do it. Not doing it probably risks the greater impact - an unconcious diabetic wedged between two sweaty business men...

There is an unfortunate trend these days of people tending to think that everyone should be tolerant of them, but they aren't so hot at showing consideration in return. Take an example of two "lovers" in a park, who choose to display deep affection more appropriate for behind closed doors, but give passers by filthy looks for looking at them. They can't have it both ways. But, and this is a crucial point, testing my blood sugar is not something that is generally obtrusive on people nearby. When I test in public places, I try to be discreet. This is being considerate. In a pub or restaurant, I'll open my kit on my lap so that people at adjacent tables shouldn't even notice what I'm doing. And if people don't like it, they actually don't have to watch. It takes me around 10 seconds from getting my kit out to finishing a test! So I guess I don't feel asking for a tiny bit of tolerance is asking too much.

Cigarette smoking, on the other hand, cannot be considerate. It takes several minutes, is repeated far more frequently and the smoke, of course, drifts over everyone nearby, who have no chance of ignoring or avoiding it. But since there is a choice involved to put a cigarette in your mouth and light it, and there is no actual need to do it, I guess tolerance shouldn't be expected.

Perhaps it just comes down to a personal space issue. My bubble, my rules. Unlike cigarette smoke, blood testing doesn't drift out of my bubble and into someone else's. Well, not unless I get a real squirter!

 

Warm and Fuzzy

Finished - my latest project!

I just hope it remains cold enough to wear it for a little while, as it is a mighty chunky wool!

Nice One, Caro!

It was three hours this morning until I realised that I wasn't wearing my pump. Three hours!

Obviously this is not a good thing.

Should I have been content in the fact that if I can foget to wear my pump, I must be pretty comfortable with it, and planned to use this anecdote to reassure people who are worried about pumping, afraid that they will always notice the pump? Would that have helped in any way as I impatiently waited for my blood sugar to come back into range and to start feeling better than awful?

Sometimes I can't believe the things I do and, being honest, this isn't the first time I've forgotten.

Surely I can't be the only person to make such a stupid, fundamental mistake?

Digestive Biscuits

If I were to pick a food to sum up my childhood, it would have to be the digestive biscuit. Sure, I enjoyed plenty of 'kiddie' foods as a child, like fish fingers and alphabetti spaghetti, but it is always the standard digestive biscuit that stands out.

Since it appears the majority of people who stop by here are in North America, it seems sensible to start with a clarification. A biscuit, in the UK, is what in North America would be termed a cookie. The king of the everyday biscuit is the digestive, and the king of the digestive is McVities.

First developed in 1839, the high baking soda content was said to aid digestion, hence the name. I'm informed the American equivalent is roughly the Graham Cracker, only they're more crumbly and less sweet. (As an aside, I've always pronounced Graham as "Gray-ham". My brother has been trying to teach me otherwise!)

Digestives now come in multiple varieties: with chocolate pieces in, covered in chocolate, covered in caramel and chocolate.... 52 chocolate covered digestives are eaten in the UK every second!

It isn't the chocolate covered ones that define my childhood though. Rather, the humble plain old original digestive. Truth be told, without the extra touches, the digestive is a pretty hard, dry biscuit. It's best eaten dunked in tea! There is an art to this - too short a time dunked and it will still be hard in the middle; too long and you will find half your biscuit has dropped to a soggy mush at the bottom of your mug; and if you take too long getting the sucessfully dunked biscuit to your mouth, you get soggy mush all down your front!

But dunked digestives weren't the thing either. The digestives of my childhood were plain, dry and exactly 10g of carbs each.

Sometimes they were soggy, because I'd left the lid off the box and they'd begun to go stale. Sometimes they were smashed to bits from being carried in the bottom of a bag or pocket wrapped in tin foil. But every day at school they were two in mid-morning, two in mid-afternoon. And some days they were 'extras', following Lucozade for a low.

They meant that I got a glass of water in the classroom, when the other kids had to use the fountain outside, because they were so dry to eat alone.

They caused John to get told off, because he stole one out of the box.

They caused Debbie to say "It's not fair", because she wanted a snack too.

They caused me to get told off, for leaving crumbs in my notebooks.

They were boring and, after a few years of almost daily munching, virtually tasteless, but they were dependable in giving me the carbs I needed. We experimented with other varieties at times, but nothing, in these pre-MDI days, was quite as good as digestives.

Now, as an adult, I can't bear plain digestives, but as with Diet Coke I guess I kind of owe them something! If I search hard enough, I probably still have somewhere the box with "Caroline's Digestives" on the lid.

Getting Personal

It wouldn’t take great powers of observation to realise that I’m being pretty generic here. I’ll hold my hands up. I’ve been deliberately avoiding giving too many specifics. In short, I’ve been hiding.

I’ve got my reasons, though I guess they may not seem very compelling to anyone else. I don’t want, or at least haven’t wanted up until this point, to bare myself for judgment from people who know me in my offline life. Yes, I worry too much about what other people think of me. And yes, even if they think this is junk, or a waste of time, I’ve got good reasons for doing it, which is what matters. But I guess I wanted to establish myself before giving identifying clues to people who could pick up on them.

Now, anonymity is stifling me.

And now, I have begun to give clues – narrowing the very generic ‘England’ down to the (only slightly) more specific ‘London’ and clues through the tag game, for example – that along with my name and age would probably be plenty enough to reveal me to anyone that knows me well, who happened to pass by.

So I guess now is time to get a little more personal. Honestly.

My name is Caro, I’m 26 years old, and I live in London. That much you know.

Caro is short for Caroline. I have a brother, who lives in San Francisco.

I told a small lie in the 'Tag'  post, in that I actually grew up in Kent, not London, and I have also lived in Plymouth, Devon. When I put that post together I wasn’t committed to coming clean, and that is a pretty specific combination of places. I hate lies, but I see this more as an omission, than an out and out lie. I hope you’ll forgive me.

I’m a qualified dentist, but I hope that you'll forgive me for that too! How I came to be a dentist is definitely a story for a whole other time! I don’t want to give you my full name, because people who know me recognising me is one thing, but I don’t particularly want my patients googling my name and reading me here. Believe me, some of them would, and for the most part I don’t actually want them to know that I have diabetes, because it isn’t necessary to our professional relationship.

That is about it for now, although more will almost certainly follow in the natural course of my posts.

Because I’m not hiding anymore.

And I’m not caring about being judged anymore either. I’m in this for me. The real me and anyone who cares to read me.

What Drives Hypophobia?

This is a good question, that I have been prompted to ponder by Art-Sweet's comment to yesterday's post, Chicken. 

The funny thing is that most of the time I’m actually far more afraid of high blood sugars than of low, mindful of the potential long-term consequences of recurrent, prolonged highs. I'm on a permanent quest to keep my A1c as low as possible, so it really is just in certain situations that I become a hypophobe.

Some of the causes are quite simple, along Art-Sweet's lines. Serious hypoglycaemia at work could well amount to professional suicide, for example. Travelling long distances alone is not best accomplished in a hypoglycaemic state either. But at other times, the reasons are a whole lot more complicated and difficult to explain.

I have a natural fear of night time hypoglycaemia. This is ordinarily kept in check by a combination of the fact that I trust my basal rates, that I am usually woken by hypos in my sleep before they get serious, and that if I feel I am particularly at risk I will set an alarm to wake myself at a suitable point. As someone who usually lives alone this becomes less straightforward when I'm not alone. Strange? Well, yes, but when I stay with people, who may be asleep just the other side of a wall, or even in the same room, I worry about disturbing them either through behaviour caused by actually being hypo, or with an alarm clock going off at 3am.

This, I think, brings us to the real crux of the matter.

I’m a hypophobe when I’m afraid of seeming out of control of my diabetes. This is ironic, since hypoglycaemia is recognised to occur more frequently when control is tighter. But most people don’t know that. They also don’t need to know if my blood sugars are a little high. That is easy to conceal, and hyperglycaemia causing problems that require intervention from someone else takes a good while to develop. Getting up to get juice or sugar isn’t so easy to hide, and hypoglycaemia can very rapidly become a problem requiring assistance. In a nutshell I get afraid of being hypo in situations where I am afraid that people will judge me.

This isn't the same as being ashamed of diabetes. I'm not. I happily tell everyone and anyone, and will gladly try to educate. What I fear is people thinking that I can't take care of it.

To be fair to myself, some of this started from a time when there was another girl with type 1 within my immediate peer group. She was someone who never tested her blood sugar or injected in public and never went low in the company of others. What everybody didn’t know was that her A1c frequently exceeded 10 and she was really anything but healthy. I, on the other hand, routinely tested my blood sugar without pausing in a conversation, wore a pump and sometimes needed juice or glucose tabs as a mater of urgency. I had A1c’s in the 6-8 range, but many people perceived me to be the less in control of the two of us. They told me so, and wouldn’t really be moved by any amount of education.

The people from this group that I would actually call good friends, were, of course, completely understanding of where I was coming from. To this day, I don’t have a problem in letting my really good, close friends, the people who understand, know what is going on, although I'd much rather not disturb them unless I have to.

But inside I have a fear of going low outside of that circle because it gives my diabetes way too much of a powerful voice, one that says "Look at me, I'm the one that is in control and she [me] can't do anything about it." Even when I know that isn't the case. So yeah, sometimes I'm a hypophobe, because I just want my diabetes to go unnoticed.

Chicken

I'm a chicken. A coward. Sometimes I'm a hypophobe with an appalling lack of judgement that leads me headfirst into unnecessary, avoidable highs. Last night was a prime example.

Last night, after a high protein, high-ish fat meal, I tested at 6.0 (108) at a little after two hours into a four hour extended bolus. Great!

But: I had a little under three units active on board, and a little under two units still to go in. So I chickened. I cancelled the remainder of the extended bolus. And I paid with a 14.5 (260) a little over two hours later.

Why do I do this to myself?

I generally do check my blood sugar at around 90 minutes after eating. This gives me enough time to work with the active insulin on board to get myself where I want to be. If I'm cruising towards being low in around another hour, I can use a temporary basal, or eat a small snack. If I look to be leaning towards finishing up high, I'll take a second bolus. (N.B This works for me, but I'm not advocating that everyone should do it.)

But I always seem to come unstuck when I use combo boluses. I seem to forget that there is a reason that I use them. That whatever it is I've eaten is going to continue pushing my blood sugar up for hours past the normal time frame.

Or more likely, I'm just a chicken. A hypophobe...

Seems I'm 'It'

Tagged by Kassie. I guess this makes me a proper part of the O.C!

Four jobs I’ve had in my life:
1. Shop assistant
2. Bar staff
3. Lab technician
4. Volunteer diabetes camp leader

Four movies I can watch over and over (defined as movies I cannot channel surf past):
1. Rainman
2. 28 Days Later
3. ET
4. Girl, Interrupted

Four places I have lived:
1. London
That is it.. sad huh?!

Four TV shows I love to watch:
1. ER
2. Friends
3. Family Guy
4. Strictly Come Dancing

Four places I have been on vacation:
1. Whistler in Canada
2. Chicago
3. Venice
4. Paris

Four of my favorite foods:
1. Chocolate, specifically Chocolate Fudge Cake
2. Cheese Fondue
3. Tiger Prawns. Oh, and Mussels (am I cheating here?!)
4. Bacon, the English way

Four websites I visit daily:
1. The O.C
2. Yahoo.co.uk
3. BBC News
4. This Is London

Four places I would rather be right now:
1. In a warm bath, with a glass of wine
2. Skiing
3. With my family
4. Cruising in the Carribean

OK, I tag:
Sandra
Scott
Tiffany

Attached

I'm guessing that the concept of attachment is a familiar one to anyone using an insulin pump. After all, this thing, small as they now are, is physically attached to a pumper almost 24 hours a day by somewhere between 20 and 45 inches of plastic tubing. Physical attachment is one of the strangest things about beginning to pump, and seems to be one of the many worries of prospective pumpers.

But it isn't the only kind of attachment.

No one ever mentioned to me the emotional attachment. No one ever warned me that the first time I had to pack a pump up and post it back to the company that I would find it difficult to do. A pump that was meant to be a loaner, but stayed with me for nearly six months, sharing everything that happened to me in that time; the highs and the lows, both in terms of blood sugars and life in general. There was nothing wrong with it when I had to send it back and the way I felt about it, you might have thought I'd actually had to cut a piece of my body off to send in.

On the other hand, no one suggested that if a pump went wrong I might feel betrayed by that, as if my very best friend had suddenly let me down. After all, it is a piece of technological equipment, and sadly they break down from time to time. But if my mobile phone, my ipod or even my computer, acts screwy or dies I may get a bit annoyed, especially if it is a less than convenient time, but then I get over it and get the problem sorted. If my pump goes wrong, it... well it sort of hurts.

Am I weird?

I don't think so. Overly sentimental definitely, and overly trusting of my pump, possibly, but surely I can't be the only person who feels this way?