Where's your head at?!

I can't believe my last post was in June... Reading back, I feel like a lot has been accomplished. 

On balance, life since June has been good; all 6 months of it. Since coming to terms with the big 'D' ( diabetes or depression?! Maybe it should be plural) I have found life in general a lot easier to deal with. There is now room in my head for the things that I guess are in most people's heads, the negative, self-critical voice seems to have been silenced and my view on life is no longer the bleak, wintery landscape I had become used to.

I would like to be able to say that this new found glass-half-full outlook has led to better control of my diabetes, but unfortunately that isn’t so. I now just seem to be able to sweep it under the carpet better. My clearer headspace has been largely taken up with school and I am slowly realizing the obvious: this cannot go on. My problem with balancing work and diabetes is not new.

Teaching, as I may have said before, is an all-consuming rollercoaster of a job. I absolutely love it. Most days. But children shout louder than diabetes. And no two days (let alone hours) are ever the same. The addition of a pet hedgehog to our classroom has increased the daily pace further: even my lunchtimes are no longer my own due to the eager army of poo scoopers. So, what I’m trying to say is that I’m far too busy for diabetes. Doing a blood test is one thing (the children are always keen to watch too) but responding to it in the way I know I should is another. I need to be more disciplined and care for myself the way I know I should.

I’ve been thinking about this. And I think it all comes down to two things: what I was told about diabetes when I was diagnosed with it and the stubbornness I have inherited from both sides of my family. As an 11-year-old, being faced with a future involving daily injections and blood tests, I’m pretty sure I was wholly overwhelmed. But, the trouble for me was that alongside this life overhaul came a message from my medical team: “You can live a perfectly normal life with diabetes”. At the time, I fell for it hook, line and sinker. And, it would seem that this very unrealistic message has had a hold of me ever since. “Don’t let your diabetes stop you from doing anything you want to do”; I can still picture the smiling doctors and nurses promoting a totally impossible vision of the life of a diabetic. As a result, I truly haven’t let my diabetes stop me from doing anything: I passed my GCES’s with flying colours, my A-levels by the skin of my teeth; got hideously drunk throughout my teenage years and beyond; went to university; worked since the age of 13, and am now a fully qualified teacher, living on the other side of the world. But I’m starting to see that I have paid a price.

All my life I have played my diabetes down, because I didn’t want it to be an excuse (the only 2 exceptions being flouting the no-jewellery rule at school with my Medic Alert bracelet and eating snacks in class because no-one knew whether it was safe to tell me not to). While it was often made a big deal of – as a teenager I always had a group of hangers-on when I went to do my injections at lunchtimes – it was easily forgotten. On one occasion I remember vividly one of my best friends saying to me, “Oh yeah… I forget you’re diabetic”. My (internal) response to this was two pronged. First I felt pride that I was living the dream: I was ruling diabetes, it was in NO WAY ruling me. But underneath that was a well-established feeling of injustice. Blood tests, injections and guilt were never far from my mind; how was it possible that other people could forget?

And so my thing became to play it down. To live that “normal” life prescribed by my medical team. Except, looking back on it now, I can see that it was by no means normal. In my attempt to show my diabetes I was in control I went so far down the path of self-destruction that my life has been anything but. And the only casualty is, or will be, my health.

The upshot of this is that I am slowly learning not to play it down. Unfortunately, my diabetes is a large part of who I am. I am learning, at a snail’s pace, to find ways to incorporate it into my day to day life in a healthy way. And some things really are harder for me. Take illness as an example. This week I caught a cold. The winter term in schools is always the longest, in Korea it’s ridiculous! The aforementioned problems of juggling diabetes and workload for such an extended period of time resulted in two days off school with said cold. It was nasty but not unmanageable; what sent me over the edge was the impact of illness on my sugar levels. A week of almost continuous readings of >200 made me feel horrendous. It also gave me some much-needed thinking time!

While, all these years, I have been pretending very well that I am leading this coveted “normal life” and doing everything just to show my diabetes who’s boss I see now that I have been doing the exact opposite. First and foremost I needed to have viewed my diabetes differently, more practically, and with the solemnity it deserved. It took 15 years of stubbornly treating night-time hypoes by myself before I finally let myself accept that stumbling around the house in the pitch black in a state of confusion is really not the best way to deal with it; I’d like to think that these small concessions are becoming bigger and are opening me up to a new and improved attitude to my gremlin.

In my unrelenting quest for self-improvement, I took the opportunity today to download couple of diabetes-themed books (I will be stuck in Beijing airport for 24 hours thanks to a change of flights to Australia after all) The first book I began was Type 1 Diabetes for Dummies. While I don’t, technically, think I am a dummy, I thought it may help to go back to basics. It didn’t. So I moved onto Think Like a Pancreas by Gary Scheiner. I have only read 6% (whatever happened to page numbers?!) but already I feel like Dr. Scheiner is inside my head. For instance:

“The whole idea of working at something year after year only so that nothing bad happens just doesn’t sit well with me.”

“Everyone at the endocrinologist’s office kept telling me the same thing: ‘You can live a normal life as long as you do things according to your insulin.’ Basically, that meant that I would have to eat certain things at certain times of day, exercise (with caution) at certain times of day, sleep only at certain times because of the need to take shots at specific times, and test my blood sugar at certain times. What could be more normal than that?” Now, medically things have improved, these things don’t all apply, but that was the message I received on diagnosis: this tremendously confusing double message.

And on the topic of the evolution of diabetes care, I made the decision a couple of months ago to ask my doctor here in Korea about the insulin pump: a seemingly miraculous device that acts, largely, like a pancreas. 

At home, I tried for years to get one. I would be told by someone that I could have one, only to be told by someone else that I didn’t fulfill the criteria (one of which was having hypoes I couldn’t treat myself). But now, for the first time I am in a position to at least think about funding one for myself. My doctor, didn’t seem keen, he was anxious about the switch from basal/bolus therapy (injections) to the pump and my concerns after speaking to him initially were whether he would be able to give me the support I needed. So. I researched the pros and cons:

Pros	Cons
Current BG control on basal/bolus is not good enough	Carbohydrate counting needs to be accurate, I’m not sure if it is
Fewer (no?) injections	Replacing the cannula may be difficult
Processors inside monitor continuously check and warn if there is a problem	If there is a problem it needs to be dealt with immediately as if pump stops working BG will shoot up as no long-acting insulin on board
More precise insulin doses	Transition from injections may be difficult: a BIG commitment initially
Tighter control of BG levels due to mimicking of pancreas (no long-acting insulin)	My understanding of insulin and diabetes needs to be good
Lower HbA1c = risk of long-term complications is lower.	Risk of infection at cannula site
Exercise without planning	Expensive
	Lots of paraphernalia to carry wherever I go

In spite of the fact that the cons list is longer than the pros list I went to my appointment on Friday armed with the knowledge that I want to give it a go. Surprisingly, he seemed keener and agreed that I can. So, hopefully, over the next few months I will be able to hook myself up to a mobile pancreas (of sorts!) Let’s hope I can learn to think like a pancreas in the meantime.