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.

In response to a pledge...

It’s been a while since I posted on here. But in the past few weeks a number of things have happened to make me decide to post again. I have written and re-written this particular post a number of times as I’m not sure how honest I should be. However, I have realised that I can’t separate my diabetes from what I am about to write about and, if I want to write candidly about my diabetes as I set out to do, I need to acknowledge the things that run alongside it, things that I really don’t think I can separate enough to write about one and not the other. When I began writing, a close friend of mine warned me about the perils of being too honest. I hope I am not crossing that line.

The first thing that happened as a reminder to write was, as always, an appointment with my diabetes doctor at Haeundae Paik hospital. I say ‘my’; terminology I wouldn’t have used often at home where, at the beginning of my diabetic career at least, I was shunted from doctor to locum to doctor and never managed to forge relationships, let alone trust, with any of my doctors. Here, I have seen the same doctor every 3 months. While the language is still stilted my confidence in him is growing. My HbA1c this time round was 7.8%. Not perfect by any means but heading in the right direction!

The other thing is related, and is the reason both for my posting and the fact it’s taken so long. A month or so ago, I saw a link on a friend’s Facebook page. It resonated with me and I made a pledge, alongside Stephen Fry and Ruby Wax amongst other celebs, to be more open.

People deal with diabetes in very different way. I have met people for whom it was merely a blip, and a small one at that. For whom having to go through the daily rigmarole of injections and blood tests was nothing, just part of their routine. For me, and many others, it’s never been like that. In fact, according to NICE (the National Institute for Health and Clinical Excellence in the UK ), people with chronic conditions are three times more likely to suffer from depression. And I have slowly realised that I am one of those people. I can honestly say that, although I barely acknowledged it at the time, that day in March 1995 turn my life upside down. It was more significant to me than any other event in my life. I will never know whether the diabetes is actually to blame, or whether I am just one of those people born with a natural propensity towards depression. But for years, I have struggled to find peace with my condition. I have resented it, rebelled against it, tried to pretend it didn’t exist. And now, after 16 years, three months and five days, I am finally coming to terms with it. I wouldn’t say I am happy sharing my life with it, but we are finding ways to co-exist.

I say this with great tentativeness. I have thought this before only to find things crashed down around me. This year has been one of great turbulence. I never deal very well with change anyway, and the extent of the changes I have inflicted upon myself this year have been the catalyst for a whole other change.

For years I have dealt with feelings of inadequacy; never feeling quite good enough and always waiting to be caught out. As a teenager I, and I guess those around me, wrote it off as teenage angst and it was only until recently, at 28, I realised it wasn’t shifting: teenage angst had become adult angst and I had to deal with it. Honestly, I don’t know how I kept up the pretence of keeping it all together for so long. On and off for years I have seen counsellors. First an NHS counsellor at sixteen who wanted an easy fix, so I gave her one: my parents’ divorce, something that I’m sure did affect me but is definitely not the root of my problems. Next, at 23 or so, realising that the majority of my negative feelings towards myself stemmed from my inability to deal with my diabetes,  I paid to go Private and that only served to make me even more anxious as I couldn’t really afford it and was tied into fixed terms, which I later realised is pretty unethical. Then, in the year leading up to leaving for Korea, I burst into tears during an appointment with the doctor at my diabetic clinic – not for the first, or last time. She was amazing and referred me to a psychological department attached to the clinic. After a few weeks (I was surprised at just how quickly it all came around) I started seeing a psychologist who had an understanding of diabetes. It was brilliant. He understood, without me needing to tell him, what a hypo was, what I meant when my blood sugars were high. Truly amazing. And I couldn’t help feeling a little frustrated that something similar wasn’t done sooner. Looking back now, I realise that there were a number of times my depression could have been picked up by a healthcare professional, yet it wasn’t; maybe I was just too good at hiding it, or maybe the resources just weren’t there.

On leaving for Korea, I made the mistake I have made so many times before: change everything and I will change too. Unfortunately not to be: moving to another city, albeit on the other side of the world, doesn’t change a thing. It was still me going. At first, I floated as high as ever before. I was happy. But soon enough, those feelings began to creep back in. And before I knew it I was crying constantly; barely making it through a day without something setting me off. My workload buried me, I couldn’t make head nor tail of my to-do lists because everything on them seemed to be needed to be done NOW.  My head was a constant blur of shoulds; it was too messy and busy to make sense of any of it. At home I was horrible: moody, snappy, tearful, needy, all the things I have been off and on all my life. But it got worse and worse. Until I realised that if I didn’t do something, and quickly, it was all going to fall down around me. So I did.

First, I downloaded some Apps (yes, more). I honestly think there is an App for everything you could possibly ever need. What did we do before iPhones and iPads and the App store?! One, MoodMaster, was brilliant. It described how I was feeling exactly (Mood Master describes the symptoms of depression as, amongst others: doing very little, finding everything an effort, not getting enjoyment from anything, not laughing or finding things funny, sleeping badly, always feeling tired, feeling like everything is pointless, avoiding people, being irritable, arguing with people). While sometimes, these may just describe a bad day, for me it was more than that. These were the things I was dealing with on a daily basis, constantly, and had been off and on for years, even before I could really articulate them as feelings that were not a normal part of life.  I would sit at social gatherings wondering how people could laugh. The App went on to tell me it wasn’t my fault, that depression can be caused by a number of different things, some of which were: having problems we can’t fix (diabetes), not looking after yourself physically (I hadn’t exercised properly for years), going through a traumatic experience and being inclined to see things in a depressing way (unfortunately for me, I think this may just be the case! I’m not your average glass-half-full lady…) But then it went on to give me a whole list of practical ways to move forward, and so many of them made sense! No-one’s ever done that before.

Next, I emailed a friend from home. She’d been bugging me for weeks for an update but I’d been feeling so bad – and had convinced myself that I couldn’t tell the truth because wasn’t I living the dream?! How could I tell people back home just how hard I was finding getting through a day? So I emailed her. And told her everything. It wasn’t new, we’d talked before, but what a relief it was. Next I spoke to a couple of colleagues who, very quickly became friends. Although I was petrified about doing this, it was wonderful to share my burden, and surprising how supportive people are, even people I’d only known for 6 months.

Then, I had a problem. I was in Korea. At home, I would have gone straight to my doctor, who spoke English, and who would’ve taken the next steps. Here, I had no idea who to turn to. So I bit the bullet and spoke to someone I knew who spoke Korean. Within a week I had an appointment with an English-speaking psychologist who diagnosed me with severe depression. Since then, I have been taking each day at a time. I am, and always need to be aware of this side of myself. I am trying to do the things that I need to do in order to feel better: exercise, socialise and eat healthily, all three are things I enjoy to a point, but which easily slip out of my reach when I begin to feel down.

I am not writing this for sympathy. I am writing this because people don’t write about things like this enough, and then they assume they are alone in what they feel but more often than not they are not. The pledge I made was to be more honest about depression. So here I am, being (probably more honest than I should be) about my own, very personal experiences which are linked, inextricably, to my diabetes demon.