SERIOUSLY LONG, CANDID AND RAMBLING POST AHEAD: ENTER AT YOUR OWN RISK:
In my Facebook group today, following a post about the benefits of regular blood glucose testing, someone asked me what was the catalyst that prompted me to start blood glucose testing on a more regular basis as I do now. I don’t think there was any one particular catalyst that I reacted to and I think to answer the question properly i’d have to go right back to the beginning.
I was an overweight teenager and when I was 13, my 18 year old brother was diagnosed with type 1 diabetes. I got taken in for multiple Oral Glucose Tolerance Tests and was told if I didn’t change my diet i’d be diabetic by the time I was 20. Fast forward a few years, and even though i’d lost quite a bit of weight in that time, I found myself 19, pregnant and diabetic. The prophet of doom had come to pass! I was immediately put on insulin as most women with gestational diabetes are and had a horrendous time during pregnancy. I suffered from morning (all day) sickness throughout the pregnancy, I couldn’t keep any food down and as a result, spent a lot of time in hospital. My daughter was born in 1986, 4lb 7oz (small for a baby of a woman with diabetes) by caesarean section and I was taken off insulin. I was cured! Sadly not, 2 days later I was given a diagnosis of type 1 diabetes and put back on Humulin I insulin, twice a day for the rest of my life!
A week later, we left the hospital. I was 20, with a new baby, sick, on my own and given a pamphlet on living with diabetes. That was the extent of my diabetes education. I saw my endocrinologist 6 months later. I’d experienced quite a few low blood sugars in that time and so to avoid this, I deliberately ran my glucose levels high. I couldn’t be low with a new baby now, could I? And skipping injections also had the added bonus that I didn’t gain any weight. My endocrinologist wasn’t very happy with my glucose management and berated me, quite vocally. I had to stop smoking, I had to get my glucose levels down, I had to take care of myself! I was labelled as non-compliant at that early stage and that set the tone for my diabetes clinic check ups for years to come.
I developed a bit of a F**k You, diabetes and a F**k You, healthcare team attitude. I was a partier and on the weekends when my daughter went to stay with my parents i’d let loose and give diabetes the metaphorical finger and the least attention I could. I didn’t test very often because my glucose levels were always going to be high and I didn’t want to see the reading – it’d only get me down. It all took its toll on me. I had multiple hospital admissions with DKA in the early years and just generally felt ill and tired all of the time. I knew what I was doing was self destructive but I couldn’t figure a way to get out of the hole i’d dug for myself. At that point I accepted that diabetes was ALWAYS progressive and I was going to die young. It’s not what I wanted, I was riddled with guilt, fear, frustration, shame, and any other negative emotion you can think of and I repeatedly asked for help but sadly, it just wasn’t forthcoming.
During my annual eye screening the early stages of retinopathy were picked up and I was terrified of losing my sight but that still wasn’t enough to make me change my ways. In 2003 or 2004, I got an infection in my foot and ended up having my first toe amputation. Well, it was only a toe, wasn’t it? Such a small thing in the grand scheme of things but it absolutely floored me. Again, the endo tutted at me, said I had to start being compliant or I was going to lose a leg or go blind! Well, that bit of advice was the only help I was offered and frankly, although it terrified me, it really wasn’t very helpful! I felt like i’d been put on the scrapheap and left there to rot. Fortunately, I worked for a good employer at the time and they were very supportive, as were my daughter and family, who have been the whole way through.
Then I decided I needed to do something to help myself and took to the internet. I came across the idea of DAFNE (Dose Adjustment for Normal Eating), a course run for people with type 1 diabetes that teaches them to match carbohydrates with insulin doses. I thought that was exactly what I needed. They weren’t running one in my town but I found the one nearest to me and had to fight with my PCT to get them to fund it. Work gave me a week off, half of it paid and I attended the DAFNE course. At this point they put me on a basal/bolus regimen, an intensive insulin therapy designed to more closely mimic the natural action of the pancreas. Where before I had to eat to my insulin, I was now learning to take insulin for what I was eating. A very subtle change but quite a significant one. I learned how to carb count, how to adjust my insulin (I never adjusted the Humulin, other than to occasionally skip a dose!) and how to test my glucose levels regularly but I was still unable to step off the glucose roller coaster. I started off with good intentions with record keeping but it always tailed off. The numbers were never in range, so what did it matter if I wrote them down or not? I still tested regularly but as I had nothing to show at clinic, I was still considered non-compliant.
Skipping ahead to 2009/2010, I spent much of that time in hospital. I had multiple operations on my feet and was on IV antibiotics for most of that time, both in hospital and at home via a PICC line. In total, I had 4 toes removed and some of the bones down the side on both feet. During my last hospital stay, my brother was also admitted and was fighting end stage kidney cancer, to which he sadly passed away. I hit my lowest point in that hospital bed and I wanted to die. It was only my daughter that kept me connected. Together, we begged my endo to get me some help and he agreed to put me forward for CBT (Cognitive Behavioural Therapy). Despite my best efforts, accessing the mental healthcare services proved extremely difficult and 6 months later when I finally saw someone, I was told they couldn’t help me. By this time, I was getting myself together a bit anyway and i’d decided to give up on the professionals. They based their judgements and opinions of me on a 10 minute appointment once or twice a year and all they saw was a bad diabetic. They didn’t see my life. I’m not blaming them as I take full responsibility for my own actions but they certainly didn’t help. I needed guidance and education from them and I got judgements and recriminations instead.
I got together with Mr B in 2011 and I realised I was only in my mid 40’s but I felt old, really old. I was sick and tired of feeling sick and tired, so I decided to go searching again. I realised that no-one would magically sort this out for me, I had to become my own expert. I started reading everything I could about diabetes. I monitored, tested and recorded my glucose levels and adjusted my insulin doses but I still couldn’t get it right. I was extremely frustrated at this point because I felt like I was trying to take back control but no matter what efforts I was putting in I just wasn’t getting the results I wanted.
With A1c’s consistently in the low to mid teens, I was constantly juggling and tweaking and trying to gain good glycaemic control but instead feeling like a failure because I could never achieve it. I spent endless hours weighing and measuring food, trying to balance doses of insulin to carbohydrates, feeling endless frustration of the numbers never being where I wanted them to be, waking up in debilitating hypo or feeling the adverse effects of uncontrolled high blood glucose levels. And then I came across the idea of low carbing. I always knew that the more carbs I ate the more insulin I had to take but for some reason the penny never dropped. It took me that long to work out that following standard dietary guidelines wasn’t working for me. It was almost a ‘Eureka’ moment.
I spent the next year thinking about it and researching it. Was it safe for me? Was it sustainable? Didn’t I need carbohydrates and what about ketones? But finally I got to the point of thinking what have I got to lose? I read Dr Bernstein’s book and his Law of Small Numbers made so much sense. The more carbs you eat, the more insulin you need and the greater the likelihood of getting it wrong. Little inputs make little mistakes. I ordered some of his glucose logs from the internet and in October 2013 I was ready to take the plunge. I went to see my specialist and discussed what I was planning to do. He had his reservations but he could see that i’d looked into it carefully, he recognised that nothing else had worked for me and offered me his full support. At that time my A1c was 11.3, a level that puts you at high risk of diabetes complications, including kidney failure, heart attack, stroke, blindness and amputation. I’d never considered a pump before but for some reason I asked him to consider me for one at that appointment. He outright refused but I understood as a pump is only as good as its operator and my track record was poor.
Initially, I went very low carb and this completely overturned some of my poor dietary habits of a lifetime. I was no longer doing late night shop runs for a little tasty sweet something. I had such a huge dietary overhaul that I think other things just slotted into place at the same time. I started testing regularly and recording the results. I wanted to see the effect that different foods had on my levels, I wanted to know how much my insulin affected me and I wanted to keep my levels within a tight range. By recording the results I could see patterns emerging and make the adjustments I needed to. I realised that i’d been trying to drive from the passenger seat for so many years and felt that, for the first time, I was back behind the wheel. It became my daily challenge and seeing better numbers was a powerful motivator. It made me want to test and record and in a nutshell, I developed better habits. In March 2014, I went back to my endo and my A1c was 7.7 and he offered me a pump. 🙂
The numbers still go up and down now but by carrying out the regular testing and recording means I can make adjustments sooner and try to avoid the huge high and low glucose levels that are exhausting. Probably, i’m a bit consumed by all things diabetes related at the moment but I think it’s a worthwhile pursuit. Diabetes is a condition that has to be micro managed continually on an unrelenting day to day basis and my journey has made me realise that patient education in diabetes self management is extremely lacking. I’ve realised the huge value of online support and that was part of my motivation in setting up this blog and my Facebook group.
I’m still a long way from where I want to be with regards to my targets and it’s a constant work in progress but as long as i’m heading in the right direction, i’m happy with that progression. I don’t think it’ll ever slide back to where I was before, it wasn’t a good place to be. But to answer the original question, there was no one catalyst, just a series of roads which all lead to now.
Ps. I went for my pump training today and got my pump. I’ve called it Gus, short for Mr Snuffleupagus. Yeah, some kind of bizarre mind tangent took me there! 😉 And, my A1c is now down to 7.1 – see, progression!
Bye for now,