Why I tell people about hypos – by Amy Black
Following the amazing news that drivers with diabetes will no longer lose their licenses “unnecessarily” due to night-time severe hypos by 2018, I thought it would be appropriate to “steer” my way through this subject
What is night-time severe hypoglycaemia anyway? If you asked me that when I was 11 – 17 years old… I couldn’t tell you either.
My experience of hypos was always the usual symptoms of feeling irritable, confused, tired, shaky, sweaty and numb, all while fully awake, alert and conscious.
- The thought of experiencing this in my sleep however, never even occurred to me and I never knew just how dangerously far it could go.
At 18 I was a freshman at Queen’s University, Belfast, so it goes without saying that there was a lot of partying and drinking involved. After one night of hitting the tiles and drinking copious amounts of alcohol with friends, I went back to my parents’ home at around 3am and curled up in bed as usual. It was a really good night up to that point, but pretty soon after everything changed.
At about 4am my parents woke up to the sound of me screaming. They ran into my bedroom where they saw me lying on the floor violently convulsing in a pool of my own sweat, with bruises all over my body. This was no “ordinary” hypo.
The thing that freaked me out most, was that I was conscious the entire time – albeit not fully alert as brain function dramatically reduces during hypoglycaemia – but I was aware that I had absolutely no control over my body.
It was like my mind and body were going in completely opposite directions, with my brain just willing my body to stop “jerking around” – quite literally.
It was like I was being electrocuted all over and the involuntary convulsions were throwing me in every direction imaginable – causing me to hit my head violently off the solid wood frame of my bed and land awkwardly on the floor. There my back continued to arch back and forth, while my lungs felt like the air was being punched out of them and my heart was pounding uncontrollably inside my chest. I could do nothing except scream. I was terrified.
I wanted to stand up… but couldn’t. Each time I grabbed onto the edge of my bed to pull myself up, another convulsion would hit and I would either lunge forward and hurt myself, or get thrown back to where I was before.
When my parents saw what was happening, dad bolted out the door to go downstairs to the kitchen and grab Gluco gel while mum was trying to comfort me with her words, which trust me, make a hell of a difference when you’re thinking to yourself “this is it”.
Dad then rubbed the Gluco gel in my gums. I vividly remember feeling the glucose just immediately flow through my depleted system – finally restoring my brain of energy and connecting it up to my body again.
Gradually, the intervals between each convulsion became longer until finally, they stopped. I sat up with my hair drenched in sweat and face flushed. We remained silent as we all sat in complete shock, “what just happened?” my parents asked. I couldn’t answer – for I had no idea either. I just focused on trying to catch my breath and think clearly again.
Was it stupid not having anything on my bedside in case of an emergency? Yes. Did I know something like that could ever happen? Absolutely not. None of us did. It was a major piece of information that was never communicated to us in all my consultations during the last eight years and to this day, I dread to think what could have happened if I was on my own in the house that night. I wasn’t the only one that didn’t have a clue that you could experience convulsions.
When I attended a DAFNE course four years later, it became more apparent that I wasn’t the only one that didn’t have a clue that you could experience convulsions with severe night-time hypoglycaemia. I was in a group of eight people with Type One discussing our experience of hypos, when I told them a few stories about my night-time fits (they are very rare, but I have had more than one) and my friend Conor turned round and said “I never knew you could fit,” echoed by a few others.
Shortly after this, I started working for Diabetes UK. During my time there, again it became clear that the more volunteers I spoke with the more apparent it was that many of them didn’t know about the severity of night-time hypos. More than that, one lady who I became really good friends with, never even knew she could have mild hypos with Type 2, never mind all the other crap that goes with it.
So this of course sparked a personal campaign of mine – to mention to as many people as possible about the actual severity of diabetes and why preparation is key to control and survival.
One of my biggest frustrations as someone with diabetes, is that people tend to look at it as a non-life threatening “self-inflicted” illness. Yes, the long-term complications of poorly managed diabetes can be hugely debilitating both on the individual and the NHS, but by focusing so much on that side of things I sometimes feel that the short-term traumas of the illness have been left by the wayside.
It’s a fact that around 300,000 people in the UK live with Type 1 diabetes, nearly half of which will experience a severe hypoglycaemic episode every year. Speaking from personal experience, I can tell you it’s the single most frightening thing about the illness and more needs to be done to raise awareness among the population about it – that includes people with diabetes, carers, employers and medical professionals.
Now that I’ve got that rant out of the way (apologies!) here are some tips I can provide to help prevent and combat night time hypoglycaemia:
- Test your blood sugar before going to sleep – If it’s too low, or you fear it might go low, eat long acting carbohydrates such as a bowl of cereal or toast
- Have an alarm by your bedside in cause you need to alert anyone during the night (I now wear an assistance alarm around my neck for this)
- Have as many gluco gels by your bedside as possible, just in case you need them (like I did!)
- Make sure all your medication is in date, including gluco gels and glycogen
- If you have been drinking alcohol, set an alarm for every hour and test your blood sugar. Even if it is higher than usual, I would avoid taking insulin as alcohol can rapidly lower your blood sugar over a 24 hour period.