My journey to become a Diabadass began over 3 years ago when I was definitely just Dia-Bad! My Diahubby and I had begun planning our wedding and reality had set in that I was about to become a wife and someday we would want to start a family. I also realised that I was slowly killing myself and I needed to get in control of this relentless disease.
The first HbA1c below, 9.9%, was taken right before I left home to go to university. And that was the last one they had on record for almost 5 years. Although I am pretty sure I took one during my time at university, it’s possible I didn’t!
Luckily in my almost 21 years as a diabetic, I have never been hospitalised due to my diabetes (knock on wood), but god only knows how I managed to survive. Some days I would go without injecting and some days I would just dial up 20 units in one go and hope for the best. Hypo treatments consisted of, not the recommended 4 jelly babies, but the whole entire pack. I would love to tell you what my blood sugars did during this period, but I can’t… because I didn’t even own a working blood glucose metre! Diabetes was my enemy and I was Dia-Rebelious!
Pay it no attention and it will be as if it’s not there – was pretty much my approach to my betes. I drank, smoked, partied hard and ate anything without giving it a second thought. Carb counting was definitely not in my vocabulary, in fact I didn’t even know what carb counting was.
Diabulimia hit the headlines last year in the UK after a documentary was aired on the BBC – Diabulimia: The World’s most dangerous eating disorder and to be honest I had never heard of it before that! But when I started reading into it, I had a flash back to a nurses appointment I had as a teenager. She asked me if I had been missing my insulin shots, because I had lost a lot of weight. I probably hadn’t been taking my shots, but not with the intention of weight loss. I asked her what she meant and she explained that during long periods of hyperglycemia your body essentially ate itself (her words, not mine!). There was no explanation or warnings, just sent on my way with a this new found easy way to lose weight. Now, looking back I wish I had been advised how dangerous this can be, it’s no joke! Long bouts of hyperglycemia can develop into DKA and lead to long-term life threatening complications. Read more about Diabulimia on Diabetes UK here.
Back in 2015, when I took my first HbA1c on this treacherous journey, the number didn’t mean much to me to begin with… “11.8% that’s not THAT bad a number” said ignorant little me. Then I started to research and put my number into the Diabetes.co.uk calculator and saw how far away from the green I actually was, how at risk there was of complications and the fact that some people would be hospitalised with a HbA1c that high. I was determined to bring it down and I took a huge nose dive in only a few months. I was then warned by my DSN how dangerous this can be, rapidly reducing your HbA1c, and how this can come with its own host of complications especially when it comes to retinopathy.
It has been a painful journey! It felt like I had been diagnosed all over again. The set insulin doses with every meal was a thing of the past and I had to learn how to carb count. After battling with my GP, I was referred to a diabetic team at my local hospital, and was promised a carb counting course, which I actually only attended recently, 3 years later! So I had to self-teach, of course with the help of my amazing Diahubby. The carbs and cals app and book became my holy grails and my trusty set of kitchen scales became my dinner date for every meal.
As I am writing this, it all sounds so easy! But it wasn’t, IT WAS HARD! I remember one day, last year, where I threw my dinner at the kitchen wall in a Diabetes rage and then sat on the floor and cried my eyes out for hours! Some days you do everything to the letter, count every carb, inject the correct dose, take 50 tests and you’re still frustratingly too high or too low. And although this still inevitably happens, it’s less frequent and I am more accepting of those crappy days, they happen and that’s okay!
But the hard work does pay off! Counting carbs is now second nature, I no longer dread taking a test or injection because I know it is what is keeping me healthy and alive. With the help of technology, first the Freestyle Libre and now Dexcom I am able to monitor my sugars much more closely and make adjustments myself without having to wait every few months to see my DSN. My Hba1c is the lowest it has ever been and I am so proud of myself.
I was the person not so long ago that would see someone with a good Hba1c and be envious, discouraged and wonder why they have it so easy! But none of us have it easy! We all have to live through the highs and the lows. And although now I am much more in control, it wasn’t long ago that I wasn’t! It has taken a lot of hard work and commitment to get to this number. And I wanted to share my journey! For those of you who are just starting, newly diagnosed or on a journey of diabetes rediscovery, YOU GOT THIS!