Another cheeky dispatch from the office. But I have a good excuse. I’ve just come from St. Thomas’ hospital, where I received some heartening news: my hemoglobin A1c (HbA1c) is now 7.5%! For regular readers of the blog, you may have noticed that I haven’t exactly been forthcoming with my HbA1c results, but to put it into context, let’s just say that my HbA1c hasn’t been under 8% since I was about nine and played soccer like it was going out of style. And although a value of 7.5% is still above my goal of 7% (well, ideally under 7%), I’m in a celebratory and gleeful mood. I’m not a crier, but when the nurse, Pam, told me my result, there may have been a few joyful sprinkles of tears – just two or three; 16 at most. Then both Pam and I were giggling as she gave me a high five and then a hug.
Pam’s incredibly encouraging and positive reaction exemplifies the care I receive at Guy’s and St. Thomas’. In the past, I’ve had many experiences of health care professionals sending the tacit – and occasionally not so tacit- message that I was a ‘bad and uncontrolled diabetic’, which my brain quickly equated to a ‘bad and uncontrolled person’, full stop. Some people must positively respond to that type of communication style, but I don’t. It makes me stick my head in the sand, put blinders on, throw in the towel, hang up my gloves, et cetera, et cetera. I have never felt judged at Guy’s and St. Thomas’ though. Even when I started there and my HbA1c was a good deal above target, they addressed my care with a supportive, yet pragmatic and problem-solving, mindset. And crucially they didn’t ignore my fear of low blood sugar but have worked with me on managing the anxiety, giving me the confidence to slowly, yet steadily, bring my blood sugars down. As I’ve said before, diabetes requires a prodigious amount of self-care and work to manage. In this stormy and lonely sea of a disease, they have been a safe and welcomed harbor, replete with working showers and ice machines. They make me want to show up for this disease.
The lowering of my HbA1c not only benefits my physical health but also my mental health. Getting my diabetes under control has been an overriding goal in my life, perhaps THE overriding goal recently and knowing that I’m progressing towards it has huge implications for my morale and self-esteem. I’m trying not frame it as being a ‘good diabetic’ (although I wouldn’t be surprised if those who implied that I was a bad diabetic might see it that way) as I’m aware, from writing my master’s dissertation, of the dangers of applying a discourse of morals to health. And fixating on a number, as in an HbA1c value, can exacerbate this as one can easily draw a clear, but menacing and insidious, boundary between notions of good and bad. I am however, going to use my progress in this realm of life as a role model for the many other realms of my life in which I’m struggling. For instance, maybe if I keep working at it, I will finally be fluent in French. Maybe I’ll get beyond page three of that novel I’ve been trying to write. Now this is a truly aspirational one, but maybe just maybe I’ll finally get this blog into better working order.
With type 1 diabetes requiring so much self-management, it’s easy for diabetics to think that they know everything there is to know about the disease. I’m extremely guilty of this phenomenon, which is why I had put off doing the DAFNE course despite repeated recommendations from doctors and nurses who promised that it would be a useful diabetes refresher course for me. I finally relented and signed up for the five consecutive day DAFNE – which stands for Dose Adjustment for Normal Eating – course at a London-based hospital but only to get the healthcare professionals in my life off my back.
Last Monday morning, when we were told that the first lesson would be on the difference between type 1 and type 2 diabetes, I simultaneously groaned and rolled my eyes as my fears were confirmed: the course was superfluous. What diabetic doesn’t know the difference between the two main types of the disease? Me, it turns out. I thought the difference was simply that type 1s produced no insulin and type 2s produced insufficient quantities of insulin. What we learned was that type 2s can make adequate levels of insulin but that their cells may not be responsive or receptive to it.
I’m glad that my false bravado was dashed so early on as it meant that I was much more alert and open to the subsequent lessons such as the crucial modules on carbohydrate counting. Because I find carb counting so onerous, I have resorted to eating very few carbs and generally only eating packaged carbs with the carb level clearly labelled. Due to my diabetes ego and smugness, I figured that the carb counting was inherently difficult and it wasn’t down to my ability or lack thereof. After numerous group exercises looking at photos of food and sizing up plastic replicas of cheese cake, fish fingers (which I mistook for sausage rolls and could explain a few of my carb counting mishaps in the past), and bread, I realised that although carb counting is tricky, it’s not impossible. I’m now feeling much more confident about my abilities and may be more willing to stop eating the same exact thing every day (I say right before going to prepare the same quinoa salad lunch I prepare every single day for work).
An even more important lesson, which I suspect will have a greater impact on lowering my HBA1c, was the one on managing hypos/low blood sugar. As I’ve mentioned on previous blog posts, I have a HUGE HUGE HUGE fear of low blood sugar, which has caused me to keep my blood sugars elevated. Hearing about the other participants’ comfort with having blood sugars on the lower side and even seeing some of their low values (we kept detailed logs of our carb intake, blood sugar readings, insulin doses, etc., which we reviewed as a group throughout the week) was reassuring. Also reassuring was learning how rare it is to die from low blood sugar and death from lows is often linked to drugs and/or alcohol.
However, what may have been the most valuable aspect of the DAFNE course was the other participants. Type 1 diabetes can be a lonely pursuit and to be surrounded for a week by others who deal with the same daily trials and tribulations was incredibly comforting and heartening. I felt completely safe, which is a rare occurrence for me. And to have a forum, which allowed us to get into all the nitty gritty of the disease felt almost gluttonous and like a dream come true (I bet if I hadn’t been so homesick, I may have gotten a similar contentment from Clara Barton Diabetes Camp when I was seven). I also haven’t laughed that much in a long time. I’m obviously biased, but I’ve said it before and I’ll say it again: diabetics are the funniest and most irreverent people around.
My new motto in life is, ‘What would Dafne do’? But I just need to make sure to never say that motto out loud in the company of my older sister Daphne as it would give her too much satisfaction to think that I’m finally, after all these years, taking all her diabetes-related suggestions to heart.
Generally, I’m overly grateful for the many benefits that diabetes technology affords me, such as the ability to engage in sports with limited risks. Last Monday, I was not. Instead I was cursing the very technology that I normally praise.
Last Monday started so well. Despite my concerns that my pulled tendon from the previous football/soccer game would act up, it stayed quiet from the start of the 5-a-side game. Moreover, we were beating, by a comfy margin, a team that had previously trounced us, even though we had no substitute players and they did. It was all going so well, until the second half of the game when I lifted my shirt to get some air and saw my insulin pump adhesive looking askance. Upon closer inspection, I realised that it had completely detached from my body meaning that I was receiving no insulin. And to make matters worse, I had taken a very large glug of very sugary Lucozade during the half time break.
I wish I could say that my first instinct was to hightail it out of there, but it wasn’t. My first instinct was, in fact, to pretend I didn’t see it and keep on playing – a very dangerous situation that would have likely landed me in the hospital. I wanted to pretend I didn’t see it for a number of reasons: I was thoroughly enjoying the game and didn’t want to stop and I didn’t want to let the team down, especially as we had no subs and my departure meant that they would be down to four, very tired, players. But the most powerful reason, I believe, is that the diabetes technology I have at my disposal can lull me into a sense of ‘normalacy’ and when something goes wrong, I realise how conditional this normalcy is; it’s ephemeral and I can never, ever, ever, take it for granted. In my more generous and mature moments, I’m able to appreciate that this serves as a lesson for life writ large and reminds me to always be appreciative for all I have in life.
However, I was not in a generous and mature mood when I first realised that my pump had ripped out. That it happened during a team sport, in which the importance of the group trumps the importance of the individual, made it that much more painful for me to accept that there was something fundamentally different with me than the other players on my team. Fortunately, my self preservation instinct quickly trumped my righteousness and anger and I did hightail it out of there just in time to get home to my pump supplies before my blood sugar got dangerously high.
I’m guiltily writing this post during a quick break at the office. This evening, I’m playing my first game in the company 5 a side football (soccer, for my compatriots) league. As this is the first time I’ve played football since I’ve been keeping my blood sugars in the ‘normal’ range, I’m nervous. I’ve tried to prepare as much as possible, but due to a very busy day at work, I haven’t been able to give it as much thought and attention as I would have preferred. As a short cut, I have provisioned myself with a bunch of sugar for lows and a bunch of water for highs. At least if I end up in the A&E (or ER, for my compatriots) tonight, it likely won’t be for diabetes-related reasons.
‘I’ve got this, no biggie, I feel as cool as a cucumb’ – brrrrmmmm, brrrmmmmm. Wait, what’s this interrupting my internal pep talk as I stride into the office? Oh, it’s just my insulin pump alerting me to the fact that my blood sugar is 16 mmol – about twice as high as it normally is at 8:00 in the morning. As I’ve noted before, type 1 diabetes and discernible patterns are not always bedfellows but a reading of 16 mmol at that hour is a little unusual. Especially as I’ve eaten the same breakfast (porridge with yogurt, peanut butter, and strawberries) as I do every weekday morning and taken the same insulin dose as I always do with that breakfast (2.6 units). Now, it could have been many things (less sleep than I thought, an air bubble in the insulin tube) but I have a sneaking suspicion that nerves related to starting the new job caused the precipitous rise in blood sugar. As frustrating as high blood sugar is, especially when I want to be at my physical best on hour 1, day 1 of a new job, I can’t help but doff my cap to my blood sugar’s ability to act as a barometer of my true mood, the mood that all the pep talks in the world can’t mask.
Post scripts’ post script: On my sister, Daphne’s urging, I have entered the ballot for the London Marathon 2017. So maybe my marathon musings were more than just musings.
I’ve done it again. I’m willingly placing myself far outside my comfort zone. Just when I was finally getting my sea legs at my job, I go and get a new one. Albeit, at the same company. Albeit, only for a one-year secondment. While the role from which I’m departing was a traditional primary research healthcare management role, tomorrow I will be joining the thought leadership team where my main responsibility will be identifying trends in the healthcare and pharmaceutical market. Although starting a new job is always daunting, this one seems less so than the last time I started a new role (and I should remember given that it was less than a year ago). Clearly a huge factor for this is that I’m at the same company – I already know where to make tea and where to find the loo – but I believe that the work is a more natural fit for me.
I’ve always had a penchant for patterns and an eye for trends (mostly of the fashion variety, but still) and doing this for my day job seems thrilling and almost too-good-to-be-true. Over the bank holiday weekend I’ve been pondering where my particular love of patterns comes from (other than the simple fact I’m a human and humans love a pattern) and I wonder if it is partially borne out of managing diabetes for almost 30 years. Trying to eke out even a semblance of a pattern or a rhythm from the capriciousness of daily blood sugars can make it a lot easier to manage and surely by now I must be hard wired to pattern recognition.
Even if this argument linking diabetes and pattern recognition is tenuous, I’m going to go with it. I’m often lamenting all the ways in which diabetes is a downward pull on my career ambitions. By potentially strengthening my pattern recognition abilities – the core skill needed for my new role – it’s heartening to think that a near lifetime with diabetes is helping, not hindering, my career prospects.
Something odd happened while watching the London Marathon today: I thought ‘I want to run this’. In all of the many years of watching marathons, this thought has never crossed my mind. While I’m not going to start a training programme tomorrow, I am going to mull over this thought for a while and see if it develops into something stronger and more tangible, or if it quietly floats away like so many of my ideas. In any case, I’m going to view this openness to running the marathon as a testament to a more positive attitude to living with type 1 diabetes. I suspect that the previous revulsion to the concept of running a marathon has largely been rooted in a fear of low, and to some extent, high blood sugar and managing one’s blood sugar during the training and the actual event seems impossibly overwhelming. I also have a disdain of the whole, ‘I have a disability but I overcame it with this bonkers activity’. Must we all be superman/woman? But given the work I’ve already been doing to maintain my health over the past few years, the effort to maintain my diabetes while training for a marathon seems incremental as opposed to exponential. In other words, it’s not that much more work to manage a very long run. Of course, I say that only hours after just the excitement of watching people run 26.2 miles caused my blood sugar to rise. Well, it won’t be easy. But is it worth it?
If the first day of spring isn’t a reason to dust off the cobwebs and start writing again, then I don’t know what is. I’m trying to identify why I’ve been so reluctant to write here over the winter. It’s surprising, as my blood sugar has been more stable and controlled than ever and you would think that I would want to bellow the good news from the roof tops. But I think my hesitation to write is emblematic of my ambivalent relationship to my health. I’m constantly equivocating about how seriously or not to take diabetes and devoting a blog to my experience with the disease is the ultimate sign that I’m taking it, and myself, seriously. But in my many moments of self doubt I can’t help but wonder I am taking it too seriously. It can feel a little entitled sometimes. It’s just type 1 diabetes, after all. But then I’m quickly reminded that when I pay closer attention to my health and give it credence and respect, I tend to have better control of it. And if the blog is an outward sign of a successful inward reckoning with self worth, then I better keep on writing. Let’s just hope I don’t start bellowing from the roof tops anytime soon.