Type 1 Diabetes - dealing with a new diagnosis
Boxing Day was the first day I knew something was off. I felt so sick to my stomach. I suddenly despised coffee, anything creamy and only really wanted sugar. It felt how I imagined pregnancy could feel - completely unsure how your body could turn so suddenly into a space you don’t recognise.
The dry mouth and thirst appeared next as I would get through two litres of orange juice a day. I was constantly thinking about Ribena, milkshake and fizzy drinks and had an insatiable craving for sugar. From early February, my thirst had become so bad that I was immediately thirsty after drinking. My mouth was so dry I would gag and nothing could make it remotely better.
I’ve been told that I’m quite dramatic about my health sometimes. This is true. I have been to hospital on a few occasions for issues that have turned out to be my anxiety, although felt like alarming health concerns to me. Maybe it was this fear that kept me from seeing my symptoms as an emergency. I knew about the symptoms of diabetes and had a strange sense I fitted the bill. The weird chlorine scent of my sweat, constant thrush and unbearable 3-times-per-night loo trips sound quite alarming in retrospect, but it’s amazing how normal things become when you live with them for long enough.
Upon testing my urine with the test strips I had bought out of anxiety, it appeared both my sugar and ketones levels were somewhere in the realm of ‘not good’. I got in an uber and went to hospital, anxious that I would be told I was overreacting and wasting people’s time. In A&E no one really told me what was going on. They tested my blood but didn’t say anything, purely exchanging glances.
I was told I likely had Type 1 Diabetes and needed to be admitted and put on a drip to replenish the huge amount of water I was lacking due to my body trying to get rid of sugar, and purging fluid along with it. It was almost 5 days in hospital and I won’t bore with the details. It was dull but I felt fine. On returning home I now had an auto-immune disease to contend with and dealing with the nuances of that over the past few weeks has been incredibly hard.
Dealing with the diagnosis
Nothing is spontaneous anymore. I can’t roll out of bed and into the cereal routine of the past. I check my blood sugar and then inject myself and wait 10 minutes before eating. It’s not a big deal but it is. It’s not too annoying but it is completely annoying. Not because of the act of doing it, but the overwhelm that I will never ‘not’ do it. I won’t have my old life back.
I am not someone who likes numbers, nor is interested in getting obsessed with them in this way. I have moved so far into food freedom, but this new diagnosis is challenging it again. I am having to think about everything I eat and I just don’t want to. I don’t want to see food in calculation terms. I don’t want to calculate carbs because that means I will probably also know the calories. It just feels so much like going backwards.
Without insulin, my body can’t absorb the carbs in my food. I am essentially going into starvation mode. Making the decision not to starve is now within my control. Having a history of eating disorders and self harm means that making this decision is not easy. Taking care of myself is not something I find comes naturally. I have the choice between weight loss and stable blood sugar - it’s not easy to choose the latter.
But the consequences of elevated blood sugar are; a shortened lifespan, potential blindness, kidney failure, gastroparesis and more. if I choose not to inject long-term, I could go into a coma, I could suffer heart-failure and a stroke. It takes a lot of reminding myself of these consequences to believe that taking insulin is worth it, and essential. Without it, my body is in danger. So I am worth looking after.
Struggling with online resources
With the shock of diagnosis comes the desire to connect with others dealing with T1D. But this online world is also quite toxic, with low-carb diets, sugar avoidance and a strange rhetoric around diabetes management. My diabetes team have encouraged me to continue as normal with my life and eating, but the online community says otherwise. It makes sense why 60% of women with T1D will develop an eating disorder at some point in their life.
I am grappling with wanting life to go back to normal, but also discovering a whole new community of people telling me how to manage something I didn’t ask for. I’m angry that I have to waste time on this disease and its management. I’m angry that it has put a strain on my relationship with food and my body and find it difficult to be honest about that with my diabetes team.
New diagnoses change our relationships with ourselves in ways we might not expect or want. They might challenge us to put into practice the recovery we have promised ourselves or advocate for the support we would encourage for others. For me, it is about making the constant commitment to my health and happiness above neglect and harm. This chronic condition now gives me a renewed chance to choose life every day.