I found myself in A&E in the early hours of Saturday morning, and for the first time in more than two decades, that visit was not because of diabetes. I make it sound as though I am a frequent guest at local emergency departments, but that is not the case. I can’t remember the last time I was there, but I do know it was thanks to the unholy trio of diabetes, gastro and ketones. That would be the only reason I’ve visited in the last two decades.
But before that – back in my pre-diabetes days – the reason was something different. I used to have seizures in my sleep. And at 2am on Saturday morning, I woke up realising I’d just had a seizure.
The first thing I did as I was coming to was check my CGM trace. A neat line that had barely wavered between 4.2mmol/L and 5.6mmol/L. This wasn’t diabetes related.
The last time I’d had a seizure in my sleep was 16 years ago when I was pregnant with my daughter. But that one was because I was low. I knew what to do, I knew why it had happened, I knew that it was just one of those things, I knew it was a pregnancy low that I had read about.
This one had nothing to do with diabetes and that left me in a very confused space. I wasn’t sure what to do. Did I need to go to the hospital? That’s what used to happen. But was that still the drill? We made a few calls and we decided that it would be best for me to go into A&E and take it from there.
There is no good time to need to go to A&E. There are just bad times and worse times. Turns out this was a worse time. I arrived at 2.30am, exactly two hours and 31 minutes after Melbourne went into lockdown after a COVID-19 outbreak. Aaron wasn’t allowed to come in with me because new restrictions were in place, so he left me at the door. The waiting room was filed with people who appeared a little worse for wear after their last hurrah before lockdown went askew.
The triage nurse saw me straight away and I explained why I was there. She looked up after asking me if I had any other conditions and I said ‘Yes, I have type 1 diabetes.’ I waited for her next question, jumping in after it didn’t come for a couple of beats. ‘I wasn’t hypo. My glucose levels were steady and between 4 and 6 the whole night. I wear a CGM. It wasn’t from hypoglycaemia.’ She typed that into her computer and then told me to take a seat and someone would be with me. She smiled at me, ‘It’s foul tonight. You’ll be here for a while.’
This is where things diverged from my last A&E visits. I was sent back to sit down and wait. And wait, and wait. There are few upsides to living with diabetes, but one of them is that when it’s the reason for a visit to an emergency department, you are given the VIP treatment and seen straight away. At least, that’s been my experience. Ketones are not to be messed with and as soon as I’ve ever mentioned the word, I have been whisked away behind the locked door and seen straight away.
But not this time. This time I was with the ketone-typical people, and sat quietly until, about two hours later, it was my turn. Blood was drawn, a CT scan was ordered and done, a consult with a neurology registrar happened. I was asked by everyone I saw if I was having a hypo when I had the seizure, but other than that, no one paid any attention to my diabetes. Which was just fine, because Loop was taking care of that for me and I didn’t really feel like having to do a DIYAPS tutorial to explain why I didn’t want anyone managing my diabetes for me while I was there.
After a couple of hours of outstanding care and attention, I was able to leave the hospital and go home with instructions of what to do next, an appointment for an MRI and EEG scheduled for the next couple of weeks, and a subsequent consult with a neurologist. And with a slightly fuzzy head … and a heavy sense of dread forming in my chest.
It’s a couple of days later, and I’m feeling less fuzzy. The only physical remnants I have are achy ribs from the actual seizing. Emotionally I’m more than a little wrecked, and in a state of uncertainty which is never good. I’m terrified of going low and checking my CGM trace every 23 seconds, stupidly jumping at anything that hints that I could be heading into hypo territory – even though Loop is more than capable of taking care of it.
I’m scared that this is not a one off, and instead the start of something else that is chronic and going to take up energy. I’m worried that my usual scatterbrain and forgetting words is actually something more sinister. These are the thoughts that have been going through my head from the moment I woke after the seizure.
On Saturday morning I walked out of the hospital to meet Aaron, the sun was rising, and Melbourne was starting to wake up. I climbed into the car feeling grateful to be going home. And sad. I thought about how over the last three years I’ve managed to get my diabetes to a place that requires little effort and with that managed to claw back so much mental effort that I’d needed to dedicate to my broken body. Was that all about to be redirected to something else? Was I going to have to learn a whole new language for a whole new part of the health system that I am already sick of having to use? Was this my broken body reminding me that I don’t get to feel comfortable in it? That while I may have thought I’d found the magic key to putting diabetes in its place, other things could and would pop up. Not diabetes. But there could always be something else…
8 comments
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February 15, 2021 at 4:15 pm
Belinda Youell
Stay Strong Renza. You’ve got this!
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February 15, 2021 at 4:16 pm
Scott K. Johnson
Oh goodness, Renza. I’m so glad you’re alright. How unsettling, for sure. While it’s nerve wracking not to know the cause yet, I’m relieved to hear that your caregivers didn’t just write it off as a part of your diabetes. Please keep us posted as you’re able to and comfortable sharing. Sending you and your whole family lots of love and support in the meantime.
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February 15, 2021 at 6:31 pm
Min
Please keep us posted on this one Renza, I am a type 1 who has odd seizures, never been diagnosed. I really feel your words, I know it and I live it. I am perplexed by the medical system who has unwell people going from appointment to appointment to appointment in exhaustion trying to find help and answers. Surely we can make this more streamline for people with overlapping chronic illness that throws off 50 other complications? My entire life is spent chasing appointments and yes imagining adding another chronic problem to that almost sends one over the edge. Where and when are they going to provide a one stop shop for diabetics where every complication associated specialist is under the one roof and coordinated into your appointment day? When? I get into this user unfriendly head space when handed referrals and told off you go, work it out. its mind numbing and a very lonely feeling. “Please someone take over and help me” is a common feeling that runs through my head. I await the outcome with concern for you Renza.
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February 16, 2021 at 4:51 am
kelly2k
Renz – I’m so sorry you had to deal with all of the above and sending you boatloads of love, strength, and positive vibes. Xo
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February 16, 2021 at 11:25 am
Sally Nagle
Hope you are feeling stronger and take care. I love your posts.
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February 16, 2021 at 1:22 pm
Rick Phillips
I am so glad you are recovering. I know you will keep us advised. I also hope that you will feel stronger each day going forward.
However, one thing I know about diabetes is that if it isn’t one thing it it is 20 things.
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February 16, 2021 at 4:03 pm
Nicky Moffatt de Vries
Big hugs, Renza.
That’s all.
Big hugs
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February 18, 2021 at 11:59 pm
Jenny van Gemert
Sending love from a fellow t1 and neuro patient! I also have seizures. Hoping you are ok! xx
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