“Once diagnosed and stabilised on insulin, people with Type 1 Diabetes can lead a normal life.”
This is the story we are told, at diagnosis. Test your blood sugar, take your insulin, live a normal life. The same was said to me about having Addison’s – a condition in which my adrenal glands no longer function, giving me a kind of ‘diabetes of all the things’ – blood sugar, blood pressure, fluid balance, electrolyte levels, immune system all no longer automagically controlled, and instead depending on me to manually intervene to adjust them.
But, like many chronic health conditions, diabetes and Addison’s are needy. The truer statement would have been:
“You can carry on with your normal life, you just need to carry these eggs with you, 24 hours a day, 365 days a year, forever.”
At the beginning, I had no idea what to do with the eggs I had been handed. I just carried them gingerly in my cupped hands, paranoid about dropping them. I could think of nothing but the eggs – the need to monitor my body, anticipate its needs, head off problems before they spiralled into a hospital admission (or death). The eggs filled my hands and my mind. There was no room for anything else.
Over time, I learned how to dress so that I could carry the eggs in my pockets. I invested, literally and metaphorically, in bags that had special egg-storage pockets. I was diagnosed with new, bonus, health conditions that came with their own eggs, and so I bought a bigger bag, developed new ways of walking and running so that I could carry my eggs safely over longer distances.
On a good day, I wake up and check my eggs, none are cracked or broken, I stow them safely in my bags and pockets and only need to check on them from time to time. I can’t ever forget they are with me, that I am responsible for them 24/7 for the rest of my life, that a moment’s inattention can result in yolk all over the floor, but I have my hands, and mind, mostly free to do other things.
However, on any day, at any time, something can happen – as simple as a minor virus, a grazed hand, a stressful meeting, a change in the weather – and the universe walks up to me and says “Here – hold these eggs as well.”
Now I am in trouble. My pockets and backpack are already filled with the eggs I usually carry. I have nowhere to put these new eggs, so I cup them in my hands, or balance them in my lap, all the while trying to carry on with whatever I was planning on doing that day.
I can be handed more eggs to carry in the middle of running a race, at a big family occasion, on the day of an important work deadline.
Sometimes I can see how long I will have to carry these extra eggs – going on holiday for example. Often I have no idea when I will get to hand the eggs back. Sometimes it slowly dawns on me that I will not get to give them back; eight eggs is my new normal.
My resilience is the ability to carry my normal eggs with a couple of options left for handling unexpected extra eggs. It is the padded pockets and extra hands – oh, what I wouldn’t give for an egg box! – formed by my back up: the twitter diabetes community, the addison’s org forum, my really excellent GP practice, the nurse-led endocrine clinics I can ring for help in the week, my partner, my family, friends and neighbours. The availability of that help varies from day to day, hour to hour, but I don’t get to choose to only be handed extra eggs during office hours. Unfortunately I never really get to hand my eggs to anybody else to hold for more than a moment, but even those moments are a huge relief.
The question of quality of life, on a day to day basis, is really two questions: ‘How do I feel today?’ and ‘How many eggs am I carrying?’ Days where I feel well, but am carrying extra eggs, can be less full of meaningful life than days on which I’m (quite) unwell but only have to carry my normal allocation of eggs.
So, this is my reality. If you want to imagine what life is like living with highly demanding, unstable, dangerous long term conditions, I challenge you to spend just one day going about your daily life with half a dozen eggs and no egg box.
This article owes a great deal to Spoon Theory – a metaphor for living with limited energy due to chronic illness and disability.