Rebekah Wolkind, a post graduate student here at the UoE has written a blog for Diabetes UK about here experiences living with an insulin pump and continuous glucose monitoring and has allowed me to reproduce her blog here! Thank you Rebekah!!
While watching Charlie Brooker’s sweep of the year, I was made aware of ‘Naked Attraction’ an absurdly premised programme whereby individuals choose a date based only on seeing their suitors naked. Shamefully curious I looked it up and was begrudgingly hooked in. I was struck by one thing in particular; these people were so very very naked.
I’m not just stating the obvious here. For those of us who use a pump and CGM this level of nakedness isn’t possible. Perhaps it occurs in brief moments in between set changes, but most of the time by body is hooked up, wired in.
What struck me further, were the strong feelings of sadness and jealousy it brought up in me. Perhaps I have not come as far as I thought in accepting my condition, I thought.
I shifted from daily injections to a pump about two years ago, and have recently started to use the freestyle Libre. When I was on injections, I was more able to keep up the façade of normality. I kept my pens and meter in my bag, and I tested in private around people who didn’t know. I never had to break through the shame and sadness of having a body that doesn’t function; in fact the invisibility of the illness fed that sense of shame by allowing me to maintain secrecy.
My pump and freestyle Libre provide a much better representation of what it’s like to live with type 1 diabetes. Type 1 Diabetes cannot be put in a bag. Its shot through my body and mind every moment of every day. It’s the constant calculations of carbs, boluses and corrections, the relentless worry of going low with all the entailing symptoms and anxieties of future complications from going high. It’s an exhausting and ever present condition.
But after 8 long years of all the above and two years with a pump, my self-image is of someone with a pump-less, CGM-less, healthy body. And every time I realise that’s not true, my heart breaks a little.
The reality is with the advent of new technology; many people are now living a cyborg life. Cochlea implants; robotic prosthetics, even the common contraceptive implant arguably falls under this category.
During my undergraduate degree, I studied Donna Harraway’s “Cyborg Manifesto”, which predicts a future of blurred boundaries between human and machine. Reading this made being a cyborg feel a lot cooler than it had done previously. But I still have a long way to go in accepting that being part machine is a legitimate way of being human, a legitimate body to have and in fact (as Harraway predicted) an increasingly normal body to have.
There are practical adjustments to being attached to machinery too. At night I sleep with my pump next to me, and when I get up to go to the bathroom in the night, or the next morning, I often forget, stand up, and sometimes pull the cannula out. My pump alarms at various times if there is a low reservoir, low battery or an error. People often assume it’s a phone and this can be awkward when I am in a no-phone zone (in the cinema, in a lecture, in a meeting).
It also adds an extra variable into the already complex realm of diabetes care. If my blood sugar is unexpectedly high, I have to think about all the normal things – possible illness, miscalculation, hormones – but also whether my pump has failed me. The machine could be broken, the cannula could have kinked or the wire could have bubbles in it. Once my pump entirely failed me when I was living in a foreign country and difficulty in getting a new one cleared through customs meant I was back on injections for almost a month (a hard transition to make).
So these machines fall short of fulfilling the reliability and independence of true bodily organs. They break, they are sometimes mistaken, and ultimately, I still have to tell them what to do. However, they do make me radically more equipped to deal with my diabetes, and to live a normal life.
The pump allows me huge flexibility with regards to reducing my background insulin for exercise or increasing for illness or stress (or a multitude of other reasons). I have different insulin to carbohydrate ratios for different times of day and the pump will calculate my doses for me accordingly. The pump goes down to 0.001 units of insulin compared to the measly 0.5 increments when injecting. In fact, when I have gone back onto injections I’ve realised just how rudimentary it is in comparison.
My new Freestyle Libre allows me to see. I can get second by second updates on my blood sugar. It also tells me the direction so that I’ll know if I’m going up, down or flat (and to various gradients). It means I’m not stabbing in the dark with my doses. It gives me the confidence to go into a meeting with my blood sugars at 4, but know that I’m actually heading up.
Most of all, the visibility of the pump and the freestyle Libre are pushing me to surrender more deeply to the fact that I have a chronic and debilitating condition. I can’t avoid it or pretend not to have it. This is a painful experience, but it is ultimately very liberating and puts me on the path to a deeper acceptance.
My only wish now is that funding makes these technologies more readily available to all.