Injecting insulin is a necessary part of many diabetics lives. For type 1 diabetics and a growing number of type 2s, insulin is needed to keep blood sugar levels controlled, which helps to stop diabetic people suffering from horrible complications. But not all injectable insulins are the same and for those using them it is important to be happy with the medicine you are taking. But what happens when the insulin you are taking is doing you more harm than good?
The Right Choice?
After my horrible experience with that first analogue insulin I was prescribed, the doctors gave me a new version instead. This new long-acting insulin (a different brand to the previous one), along with a short acting analogue were both newly invented analogue insulins and promised to be the solution that I needed to get my blood sugars back on track. To make sure that I would be more independent on the new insulins I was invited to go on a course which was happening in a London hospital. DAFNE, short for Dose Adjustment For Normal Eating, was a brilliant week-long event and by the end of it I felt confident that I could adjust my insulin easily and I finally ‘got’ the whole multiple injections thing and started to agree with my doctor that more injections a day was better for my health.
The course had been very thorough and I not only remembered everything I had been taught but I also had lots of information in booklets and leaflets, plus my diabetic team back at my local hospital were newly trained in the regime too, so I could always contact them for any advice if I needed it. I felt so confident for the first couple of weeks of taking the new insulin. I hadn’t had the shaking reaction of the previous insulin, and I finally had good blood sugar control for the first time in years! But it wasn’t going to last, and just over two weeks after I’d been on the life-changing DAFNE course, my blood sugars had started to deteriorate and my mood changed dramatically too.
Loss of Hypo Warnings
I received help from the staff at my local hospital but it was soon clear to me that they knew as much as I did about how to adjust my insulin to keep my blood sugars under control. Eventually I stopped asking for their help and instead tried to manage for myself, which worked about half of the time. I had no idea why my blood sugars were out of control, but I began to get used to the way things went from okay to not over the course of a day and managed relatively well to control everything, but a new symptom emerged which I hadn’t anticipated and I was scared that I couldn’t feel what was really happening in my body.
The first time I had a hypoglycemic attack (where the blood sugar drops dangerously low) without feeling it was surreal. So surreal that I didn’t believe it. I wasted six different test strips and tested three different fingers on my hand, just because I couldn’t believe I was in a hypo. The usual symptoms of hypo in me were pretty severe: shaking, sweating, unable to think clearly, a headache, hunger – especially the hunger and feeling I needed to eat EVERYTHING I could find! But I didn’t feel any of these, I felt completely normal, I was functioning and I wasn’t hungry, I just felt…nothing.
I dutifully ate just enough to fix the hypo – something I’d learned while on the DAFNE course, but the event had freaked me out and I was scared of it happening again. Although I’d dismissed it as a one-off, it did keep happening, I began testing my blood sugar only to find I was often in a hypo without knowing it. I also found myself often having high blood sugar and not knowing it either. In fact I often mixed the two up, believing I needed to eat when I had high blood sugars, and thinking I needed to exercise or inject insulin when in fact I was in a hypo (which could have had terrible consequeces if I hadn’t become obsessed with testing my blood shgars all the time)! I couldn’t get a grip on how I felt anymore. I just couldn’t feel anything at all.
A Change in My Mind
A more terrifying thing began happening to me too. I began to feel strange inside, like I was living in a dream and the real world wasn’t real at all. Everywhere I looked around, things took on a grey hue. It wasn’t that I saw everything grey, but I didn’t really see the colour either. I couldn’t see things with reflections, I could see them ,but reflections looked dull. Shiny things looked dull and nothing looked like it used to. Things looked like they were unreal, the way you remember things from your dreams. I started to question whether I was really living, or whether this really was a dream world I was in.
The way I felt about things changed too. I’ve always been a sensitive person (I could easily get upset by something sad) but I loved to laugh too. I always believed that it was important to smile and laugh (especially after the life of bullying I’d had growing up). Because of this I’d always kept movies and video games that could cheer me up right away whenever I hit a bad patch – something about certain games like Worms or slapstick old films from decades ago could leave me in a fit of laughter and happy tears. But this joy I’d felt all my life when watching these films or playing these games had begun to disappear. I would watch my favourite movies, play my favourite games – get to the part that was funny and…nothing. I knew it was funny, I’d even half-smile, but inside I just didn’t feel I cared anymore. I felt numb, like I was on some strong anti-depressant drugs. Like I was taking something which stabilized my mood so I wouldn’t feel too sad, but not too happy either. When I thought about how I felt only one thing came to mind: Blank, numb, nothing. I felt…nothing.
I started to think differently too. Questioning whether I was in a dream world made me want to feel and prove to myself that I was real, that the world was real. And so I started to have disturbing thoughts, especially when I went outdoors. I wanted to feel something, I couldn’t feel hypos, I couldn’t see the beauty or colour in the world, I couldn’t feel happy or even care about anything anymore. I couldn’t feel anything so I wanted to feel pain, and I began to imagine what it would be like to step in front of a car and get hit. I didn’t really want to feel pain, but I wanted to feel something so I began wondering what would happen if I stopped in the middle of the road while crossing it, or if I jumped in front of a bus that was leaving the kerb. I even wondered if I’d feel a knife if I decided to cut my own skin. I just didn’t seem to feel or think anything was real. I know it sounds disturbing, and it was at the time, but I didn’t believe I’d actually feel anything – because part of me was convinced that this world wasn’t real, and part of me kept being convinced/wondered if the cars and the buses would just float right through me.
I finally couldn’t take it anymore, after a year and a half of being in pain, not physical pain – I didn’t seem to feel that anymore. No, the mental pain of feeling like there was something wrong with me, that I was crazy for feeling like I wasn’t here, that the world was a dream, I finally couldn’t cope and I broke down completely to my mum. I told her everything, the fact I couldn’t feel my blood sugars or hypos anymore. I told her I couldn’t feel joy and happiness anymore, that everything looked dull, that I couldn’t see proper colours anymore. I told her I couldn’t feel anything anymore, that I felt numb and like I was in a dream. I told her everything and I cried…a lot.
Mum listened to everything, she’s always been very supportive and caring, and at the end she said just one thing: “Maybe it’s the insulin”. I didn’t know what to think, but mum had already researched it, she’d known about some of my problems, my lack of hypo warnings and my general less happy mood for a while and she’d started looking into it. She’d found details of other people suffering the same symptoms both now and in the past: loss of hypo warnings, mood changes and even whole personality changes too. And they all had one thing in common – they felt worse when changing to newer insulins (from animal insulin to human or even worse from human to analogue – what I had done). All of these people also had something else in common: they all recovered after taking animal insulin – the first type of insulin ever created for human use.
I could finally see a way out of the hell I was in, but I was about to find out just how hard it is to get the medicine you really need, and just how influenced some doctors can be by the very companies that produce the medicine that’s ruining your life…