Taking Care of Myself by Helen May
One of the consequences of being diagnosed with type 1 diabetes is that no one else has ever been responsible for my diabetes care. The diabetes team at the local hospital might give me some advice when I see them but that’s only once a year, not day to day and I don’t consider that to be taking responsibility. For more than five years after being diagnosed, I lived alone so although I had some very good friends to listen to me explaining what I need to do and one who joined me on my first hospital appointment, from day one I had to learn to take care of myself.
More recently, I now live with my boyfriend. We often play the “How Much Insulin Game” where we both calculate how much insulin I need to take based on the food in front of me. Over the years his guestimation has been closer to mine (and let’s face it, even if you carb count every day, unless you are reading every food label and accurately weighing everything you eat, there is always a degree of estimation in your count). I was very glad he was there on the one occasion I had a severe hypo.
However, unless you live with diabetes every minute of every day, you do not know all the intricacies little life events have on managing diabetes. Who else knows whether last night’s climb was particularly tough and, hence need more less basal insulin? Or that I am stressed about the presentation I need to give at work tomorrow so need more insulin? Or that because my blood sugars were higher this morning, that runny nose is more likely to be the start of a cold than the impact of the spicy curry so I will need more insulin tonight?
The only time I have had to give up control of my diabetes was on the only time I ever travelled in an ambulance when I had suspected appendicitis. Thankfully, the suspicion was false but it took nearly ten hours before the doctors were absolutely certain and I was allowed to leave hospital. In the meantime, I was expected to ask for permission before taking any insulin. For the first few hours this was very frustrating: every 30 minutes, a different doctor or nurse would come and examine me. Part of this examination was to take a blood sugar reading. So as well as the general feeling of sluggishness, I had a reading to tell me I was high. Once they finally decided I would not need surgery, I was as happy to be able to take insulin as I was to eat some food (although it was only a slice of toast because I had missed lunch).
So when I read about the failings in hospital care for patients with diabetes, I worry. If I am conscious and lucid, I can argue to get the diabetes care I need but what if I am not? How can we ensure that people with diabetes have the correct doses of insulin? Perhaps Continuous Glucose Monitors (CGM) with very loud alarms would be useful for all people with diabetes admitted to hospital. Or are there just too many other distractions in a ward? And is this too late? The insulin doses should be correct first time rather than corrected. The job of healthcare professionals is a difficult one and adding diabetes does not help but we deserve to get the right level of care.
Hopefully, I will not need to go into hospital but I cannot live my life wrapped up in cotton wool. I will continue to cross the road or participate in more dangerous activities like climbing. But if I look after my own diabetes as well as I can as I always have, the chance of me ending up in hospital is reduced.