In part four of an abridged life, we meet some more Diabetes “characters” and a few rather less pleasant ones at that. Looking back, it surprises me a little as to how I got on with life and paid the attention that I did to my Diabetes.
As mentioned, during 2010, I finally started to look around the Internet, soon after my retinopathy had gone into remission. I discovered the diabetes.co.uk forum, and signed up, although it would be a further three years before I would contribute.
I read the forums without a huge amount of engagement, noting that many people really seemed to struggle with their condition. It surprised me how many people had had really poor experiences. I knew my hospital clinic experiences had been frustrating, but nothing compared with what some of these people were experiencing.
In the meantime, I was still cycling to work and dealing with the variability of blood glucose that I’d seen for some time. I changed jobs, but this didn’t seem to have a huge impact on what was happening and I continued to cycle to work.
As I mentioned in an earlier post, during 2011, I missed a St George’s Clinic appointment and as a result, was kicked out. This didn’t bother me too much as over the previous four or five years, I’d found less and less benefit of traipsing across London to what was supposed to be my Diabetic care group. If there is one thing I’ve always been’s it’s an advocate for patient self management.
I went under my GP and they referred me to Guy’s for the DECS clinic. My retinopathy had returned but remained at a background level, with a note to keep an eye on it. I walked around the Guy’s clinic on the first occasion I visited it and I was shocked at how backward the St George’s one appeared in comparison. Electronic connectivity to download data from meters? Check. What appeared to be more up to date advice? Check. Modern and pleasant surroundings? Check. Who would have thought that the difference between two hospitals that were fewer than ten miles apart would be so stark!
For four years I had my Hba1C checks done via my GP and they remained in the realms that I needed them to. He was happy. My bloods remained in the area they needed to be and my blood pressure (which I’d been self monitoring since the early noughties) hadn’t got any worse. I tested regularly (up to ten times a day by this point), but like anyone, went through ups and downs of management. I felt that I was doing okay.
At some point in 2012, I returned to the Diabetes forum and made my first post. I stayed dormant after that until 2013, when I made a couple more posts. Finally, my first success story went in in 2014 regarding my retinopathy, when I realised that many people with much less time with diabetes had had considerably worse experiences than me, and that was the point at which I jumped in with both feet. I realised that in spending 25 years more or less looking after myself that I had quite a lot of knowledge, and that with the help of Dr Google, I could explain the answers to a lot of questions that people were struggling with.
Then in September 2014 I embarked on a new training regime. Both my partner and I were overweight and approaching forty, so we decided to do something about it. Alongside this regime had come the news of the Abbott Freestyle Libre FGM system, and the two items together encouraged me to dig more deeply into the physiology of T1D and various aspects of how complications and other things really worked.
With the training regime and reduction in body fat came a rather unpleasant side effect. Sudden, dramatic hypos, almost certainly caused by Lantus. That’s a blog post for another day, but on investigating, I found that I wasn’t the only one. On the second occasion this happened I actually collapsed walking from the station to work and badly sprained my ankle. I was fortunate that I was low carb at the time as it allowed me to keep going at an incredibly low blood glucose level, and I was able to maintain myself. I had treated enough beforehand for it not to be assisted. But my ankle was very panful, and as far as I can tell, I sustained some nerve damage to the anterior nerves in my foot as a result. Fortunately, when it happened a further couple of times I had the Libre on hand to recognise the issue and was able to handle it in a more effective way. As a result I yellow carded it to the MHRA. Lantus is one of my rather less salubrious characters. I’ve got it down as a bad guy, thanks to my experience with it. But that’s for a different blog post.
At this point, and after repeated acts where this happened, I realised that I need to intervene and asked my GP to change insulin. He put his hands up and said this was beyond his experience, so referred me to Guy’s. And this was the point of true re-engagement.
With the Libre I at last had the blood glucose compass I had been looking for for years, and with the discussion of a pump at the clinic, I checked back in to what was available in the Diabetes world. It had moved on a lot since the last time I truly looked. Progress was and is still slow, but technology is now playing the part it should have been playing long ago.
The clinic moved me on to Levemir and I started to investigate absorption rates, insulin timings, etc, doing my experiments on me. I started Dynamic Diabetes Management, which I would later discover was being promoted as Sugar Surfing by Dr Stephen Ponder. Then I started to look on Facebook, and found many interest groups that were worth joining and could start to answer my questions. I investigated pumping and uncovered injection ports as a result of this process.
In many ways, 2015 became my Diabetes Epiphany.
Up until then, it was something I had brought with me as part of life. As I approached forty, I realised that participation was something I could do, I had time to do and I thought I could bring a lot to the party. I had a lot of life experience and the big D had never been something that I allowed to stop me, so getting this across to people seemed to me to be important.
For the first time in my life I went to a meeting where I met up with a room full of T1Ds. More than I had met in my life, in fact. I attended JDRF events and threw myself in. I no longer left the diabetes out in the cold. I welcomed it in and started to work alongside it. This might be my mid-life crisis, and if it is, it’s an incredibly constructive one!
But where is Diabetes in general now, and for me specifically? In general, it’s an exciting time. The ongoing research into treatment methods still focuses on use of islet cell transplants and containers, and this still looks to be a long way off. Technology wise, we are moving in the direction of the Artificial Pancreas. The technologies for monitoring and management are improving. The spread of the smartphone and apps provides both a brain and a recording mechanism. And most importantly, #wearenotwaiting. The people have had enough of waiting for Pharma and regulatory approval for ways to manage T1D. There is a ground swell of motivated and clever people out there, looking for solutions and working out ways to do new things. And I want to join in and be part of that.
To quote from a very famous song:
“It ain’t much I’m asking, if you want the truth
Here’s to the future
Hear the cry of youth”