If I am being completely honest, I have been putting off doing this podcast for weeks now because I knew it would mean talking about my experiences in hospital from diabetic ketoacidosis, which I had no idea was behind the months of my health decline.
It was also my very first experience of becoming physically frail.
I lost lots of fat and muscle, reached a weight of only 45 kilograms (under 100 pounds) and could barely walk, stand and became unable to physically care for myself.
I know now that if I had not been admitted to hospital that I would have entered a diabetic coma and died. I still came close to it during my first few days in intensive care.
All evidence prior to that pointed to an issue with my bowel. X-rays showed my large left colon was completely impacted with fecal matter and my symptoms were abdominal pain, lack of appetite and an awful taste in my mouth that came and went.
Given my past history with constipation through most of my life and the x-ray evidence, when I was told that I actually had type 1 diabetes, it just did not make any sense to me.
I knew that the chances of getting another autoimmune diagnosis in my lifetime were high given that I already had three, but if you had asked me to guess which one I would get, LADA (Latent Autoimmune Diabetes in Adults) would not have made my list and I had no idea that you could become a type 1 diabetic as an adult.
I was experiencing a profound health crisis, was physically and emotionally exhausted, being woken every hour on the hour for multiple blood tests, my arms were full of blood cannula lines and picc lines to the point that I was unable to bend my arms because of the pain and being given multiple IV’s, many of which, like potassium, are incredibly painful.
I was also engaged in an ongoing power struggle with the endocrinology team who took my legally obtained and paid for thyroid replacement hormones (NDT) and denied me access to them for my hospital stay and basically attempted to bully and harass me into doing as they wished.
I was verbally abused by a male nurse who believed that I had induced my own condition from my paleo diet and reduced me to hysterical sobbing on my first day out of the ICU and left me to fend for myself in a room where I could barely make it out of bed by myself, let alone walk unassisted to the toilet.
It was an incredibly stressful and traumatic time which could have been so much easier if only the endocrinology team had been willing to talk to me instead of at me and take the time to listen and respect my lived experience.
My next hospital experience roughly four weeks later was better and largely due to my own wonderful doctor who arranged my admission at a different hospital, however I still had to advocate hard for myself to stop unnecessary testing, negotiate the nursing team not coding me every time my naturally low blood pressure went below their guidelines every night and learn the essentials of my new life with type 1 diabetes.
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Episode 7: How to change how you feel about your chronic illness.