A moment of repose

A rare moment of repose.


Blood sugar: 9.8 mmol or 196 mg/dl

Despite the fact that my good friend Damani calls me ‘The Master Relaxer’, I can’t relax. I was acutely aware of this last night as I lay in a warm white room, low on light and heavy on the piped-in sounds of flutes and bells, with a handful of acupuncture needles placed strategically along my meridians. I must have been noticeably unrelaxed as the acupuncturists urged me to ‘Close your eyes, Relax!’ on several occasions. But I just couldn’t obey her orders, the people pleaser in me be darned.

I wish I could blame the acupuncture needles for my inability to reach my inner calm, but I grew up with needles, needles are my family. It was abandon that I was fearing. On the few occasions when I reached that stage of weird, non sequitur thoughts but not quite dreams, I was quickly startled out of it by: what did I eat for lunch and was it complex or simple carbs? What was my last blood sugar? It was high, right? What was my correction dose? Am I going low? Am I going to die? I’M GOING TO DIE! That last sentiment is a pervasive and a powerful one that I know well. I worry that if I’m not constantly tuned into my body then I could go low without realizing it. This fear of dying from low blood sugar is the biggest reason to why I’ve consistently kept my blood sugar too high over the last 20 odd years. As I work on getting to an HbA1c of 7, this fear is the biggest threat to achieving my goal (and Dear Reader, you’ll be hearing lots about it). I need to contend and confront this fear if I’m really going to make progress. I need to realize that this fear itself is the only thing I should be fearing.

Oh shoot, I just realized that I wrote another morose post. OK, next post will be lighter. Off to check if the circus is in town.



Sugar daddy patient

All smiles after a successful surgery. All smiles until the pain killers wore off, that is.


Blood sugar: 8.4 mmol or 152 mg/dl

Death is on my mind. Perhaps this is a good time to admit that although this blog is about life with a chronic illness, I don’t want it to be completely morose. But if you indulge me on this topic for a bit, I promise to temper it with levity soon.
I write this as I wait for Sugar Daddy who’s undergoing surgery. It’s only for a hernia and the low risk operation shouldn’t take more than an hour, but I’m still anxious that something could go terribly wrong. Compounding this anxiety and adding to the meditation on death is that I had very low blood sugar yesterday. My normal reaction to low blood sugar is the feeling that I’m going to die, but yesterday, I was convinced I was going to meet my maker. I had to hold myself up as Sugar Daddy poured juice down my throat (now you know how he earned the ‘Sugar’ in his nickname).

Waiting for his surgery to finish in a sad hospital restaurant on a grey and gloomy London day gives me great sympathy for my parents, and any caregiver for that matter. I often think about my parents vis–à–vis diabetes in the context of how much and what kind of care they gave me, I rarely think about the emotional toll it must have taken on them. In my first post, I admitted that living with diabetes can be a lonely endeavour. I had no peers with diabetes when I was diagnosed meaning that my parents had no other parents of diabetics to commiserate with and share knowledge, meaning that it must have been extremely lonely for them as well. Were there even patient support groups in the mid ’80s? Parents weigh in, please.
Diabetes, I would argue, is an exercise in guilt and parenting, from what I can tell, is also riddled with guilt. Combine the two and the guilt meter must be off the charts. How do you get the balance right as a parent? Be too restrictive and your kid loses their childhood; be too loose and your child could, well, die. What a precarious position to have to contend with day in and day out. As much as I’m sympathizing now with my parents, in practice, I’m still a petulant child. Yesterday, when I had my scary low blood sugar, I was speaking to my dad on the phone. When my pump beeped to tell me it was going into suspend insulin mode, I barked at my dad, ”Gotta go, low blood sugar” and hung up on him. Once my blood sugar returned to normalish, I was quietly fuming that my dad hadn’t called me back to check on me. I was awoken from this righteous musing when Sugar Daddy said, ”You should probably call your dad back to tell him you’re okay”. The thought hadn’t even crossed my mind to call him.

Sugar Daddy is now out of surgery and I’ll be taking care of him for the next few days. I hope this experience gives me a better appreciation for those who’ve taken care of me over the years. But I don’t need this experience to know how grateful I am to my caregivers and to any caregiver. I always ask for compassion from others when it comes to my health, but sometimes I need to remember to give compassion too.

The Conception

hosp SW

Taken in the garden of Boston Children’s hospital when I was diagnosed with diabetes at age six. You can just make out my hospital bracelet on my left wrist. Hopefully, the next stop was the dentist.

Blood Sugar: 5.2 mmol or 94 mg/dl

Hi, I’m Sophie – or, if you’re feeling verbally voracious and want to go for that extra syllable: Sophia. I was diagnosed with type 1 diabetes at the age of six and over the proceeding 26 years of living with the disease, I have ignored it, I have denounced it, I have rued it, I have even, on the very rare occasion, cherished it, but it has never left my side. That the disease and I are inextricably linked is a source of immense fascination for me. ‘Who am I’ in the face of diabetes is an existential question that keeps me up at night (this is not the only diabetes-related thing that keeps me up at night, but we’ll get to the less profound reasons in later posts). The question of what role chronic disease in general and diabetes in specific plays in identity is one that I addressed in my Master’s dissertation. It was this Master’s degree – in Health, Community, and Development at the London School of Economics – that precipitated my move from the US to the UK in 2007 and I have lived in London ever since. This geographical duality means that I have experienced both the US and UK healthcare systems and boy, do I have a lot to say about both.

One of the main challenges of living with a chronic illness, and an orphan one to boot, is that it’s lonely. I’m lucky enough to have kind, emphatic, supportive, and intelligent friends and family, who I can talk to about virtually anything and everything, but on the topic of my experience with diabetes, I often get tongue tied. The reasons for this are complicated, but for now, I’ll sum it up to not wanting to be a self-absorbed drag. The difficulty in discussing diabetes is one of the main objectives for writing this blog. I hope the platform affords me the courage to write honestly and openly about a difficult topic that I’m often unable to verbally voice.

The second objective is accountability. I want to control my blood sugars better. I have often stated my intention of bringing my glycated hemoglobin HbA1c – this value gives a sense of one’s average blood sugar over the past two months – down to 7% and I have not yet reached this objective, at least not consistently over an extended period of time. I’m hoping that by enlisting the online community, I’ll have more incentive and more help in achieving this. In this vein, I will be invoking the concept of the panopticon. While I fully acknowledge that the panopticon, as a symbol of control and manipulation, has negative connotations, I’m going to hijack it for a beneficial force: if I act like I could be watched at any time (not by prison guards, but hopefully by people who are rooting for me), perhaps I will be more mindful and responsible about my health, as I won’t just be letting myself down when I go off course.

I reckon I’ll unearth other reasons and objectives for this blog, but for now, the ones that I’m conscious of and the ones getting me over my fear of vulnerability and to the keyboard are accountability and connection. I hope, Dear Reader, that you’ll join me, and hold me accountable, on my journey to 7.