All change at the next stop - Type 1 diabetes has another plan for you.

Photo by Nick Fewings on Unsplash

It’s no secret: 2020 has been a year that has stopped most, if not all of us in our tracks. It’s been a time of reflection and taking stock of how strong our emotional and physical foundations are. As the music stopped, did we find a chair? Are we eating well? Are we living in a place where we want to be? Crucially are we with people / cats / dogs we want to be with? These are questions that we might have glanced at before and not fully answered because there has always been something else to do to distract us. This latest piece is to share with you what we’ve done since we faced similar questions back in 2018 and how it’s refocussed my writing journey. I previously wrote about that experience in Appraisals, hidden disabilities and meTwo years later I want to share our journey and where we have landed in the year that has put the world on pause and had many getting off at a station that they didn’t expect. It’s not a blueprint of how to get through challenging times, but it might help you to not feel so alone, or indeed to make that change in life that you’ve been daydreaming about for a while.

Back in July 2018 our then two year old toddler was admitted to hospital with diabetic ketoacidosis (DKA). It is life threatening and life changing — it’s like an earthquake in your life that starts by shaking the foundations of your immediate family, but then ripples out.

This was the start of our type 1 diabetic journey.

Photo by Mark Autumns on Unsplash

Before this type 1 journey began, my partner and I were getting back into the swing of being working parents with two children: it felt like we were back on track. However whatever destination we thought we were heading towards was not to be. We had to get off at the next stop whether we liked it or not. We got off and it was a cold scary stop that would change our lives.

When we first went to the doctors that fateful balmy afternoon, we had our suspicions that things weren’t right. Our lady had all the classic signs of diabetes that we now know are called the 4Ts. They are:

1. Toilet — She’d been soaking her bed every night for a couple of weeks, but I thought we had the wrong size nappy, so I ordered a bigger size. The problem didn’t go away.

2. Thirsty — she had been drinking loads, but it was a hot summer, so we put it down to the heat.

3. Tired — she quite often wanted naps in the day but that’s what toddlers do, except her naps were longer and more frequent.

4. Thinner — We didn’t notice the weight loss. It happened so quickly, we focussed on the fact she was a really good eater because she was always eating! What we hadn’t realised is that she wasn’t absorbing any of that energy that you get from food. Her body was starving and starting to shut down and that’s when you find yourself in the position of DKA.

We headed over to have a blood glucose check. It’s an incredibly simple, fast test. Little did I know it would be the first of many glucose tests. The reading was high. It was 37 when you should be between 4–7. We were instructed to drive straight to the paediatrics ward in A&E. It was a thirty minute drive that was both the quietest and noisiest drive I’ve ever known. Whilst our little lady struggled to muster energy in her car seat in the back, both my partner and I had a million and one thoughts going through our minds. How much will diabetes change our lives? Can we still go to work, or do we need to be full time carers? Can we afford to quit our jobs? Will she be allowed to go to nursery?… You could have heard a pin drop if you’d been sitting in the car with us. But our minds were anything but quiet as we processed all the questions that were screaming in our heads.

Fast forward a few months. We did our best to carry on as normal. Initially we were told that our little one would probably be back at nursery within a couple of weeks, the carers just needed to be trained on how to do glucose readings and how to inject insulin before meals. The reality was very different. It was more like two months before we had a hope of getting our lady back to nursery. Like the nursery, we too needed to get our heads around all the training. And then there was her body weight. Her weight had plummeted before she was diagnosed. Regaining the lost ground took time. Mind you, she was up for the challenge. Have you ever seen a two year old eat a portion of dinner that even a grown man would struggle to finish? It’s an impressive sight to behold.

Photo by nikko macaspac on Unsplash

My partner worked throughout this time. I went back to work after a couple of months of parental leave. But, try as we might, there was no getting away from the fact that we could not carry on like before. We needed more flexibility at work, as we would get calls about her having either a hypoglycaemia (hypo) or hyperglycaemia (hyper) episode on a regular basis throughout the week. Even when you didn’t get calls you were always worrying if she was okay and when the next call would come. Sometimes I would be sitting in a meeting at work talking about topics that were far removed from diabetes, when out of the blue, an image of my toddler lying helpless on the bed and wired to the moon would cripple me. To put it bluntly, trying to carry on as before was mentally and physically exhausting. We were both burning ourselves out. I can’t tell you the number of times I burst into tears at work by the coffee machine on wonderful colleagues who got me coffee and just listened. Or the lovely mum’s in the playground that asked me how I was, and I would just tear up. I’ve since found out it’s called caregiver burnout.

What was the solution? We both needed a break and I mean a proper break. The answer came down to acknowledging that our lives had changed and trying to carry on as we were in order to cover up those changes was disingenuous to ourselves.

My partner took a step back and resigned from his job and took a couple of months off. That proved to be the best decision for both of us. It was the start of us really processing what had happened, and what we needed to do. He found another job after his break, but we couldn’t escape the fact that, whilst our little lady was so young, she needed more help than the average toddler and that, as no two days are the same, we needed to be close by for whatever came up.

And so I took the decision to resign from my job and take some time out. I’d worked for a huge corporation for twelve years. It was a big part of my life. So it wasn’t a decision that was taken lightly, but it was a decision that needed to be taken. Once I’d taken that step there was one piece of advice that a few different colleagues and clients gave me that really stuck with me and that was to avoid jumping straight into the next project. “Take the time to pause and get used to being Michelle again”. And that’s what I planned to do.

The day after my last official day, the UK announced that we would be going into lockdown and we’d have to home school. So that didn’t quite give me the time to be Michelle again. But I can’t tell you how fortunate I felt at making the decision to resign when I did. If we had to juggle jobs, home school and manage type 1 diabetes, one or both of us would be a heap on the floor right now. I had planned to take a short break, do some writing and then look for a job closer to the school that our little one would be starting. The pandemic and lockdown sharpened our decision-making process. We decided that having one of us as a full time carer was the best for the coming months and it just so happened that I was already on hand to fill this new role. What about the finances, I hear you cry? That’s a key factor in any decision. We spoke with our diabetes team to understand the condition more and they let us know what help was out there. We wanted to know whether there was some form of safety net that we could use. You may not know (I didn’t), but type 1 diabetes is classed as a disability, more specifically, as a hidden disability, and as a result we’ve been able to get disability living allowance. Also, due to her young age, once we made the decision for one of us to be a full time carer, we were eligible for carers allowance. This has taken some of the financial burden away and has helped us to focus on being there for our little one as she starts her school journey.

Photo by lauren lulu taylor on Unsplash

It’s now been two months since our little one started school and she is thriving. But also, just as importantly, we as a family are now thriving too. We’ve given ourselves permission to change focus from career to family. I’ve found my voice through writing monthly blogs and have been able to focus my writing on raising awareness about type 1 diabetes. There will always be worries, but we’ve somehow managed to accept this diabetes diagnosis into our lives. Diabetes doesn’t define what we are as a family, but it has opened a new chapter in our lives. Who knows, now that we have boarded a new train it feels the next station is going to be a little warmer and brighter.

I write about caring for an amazing child who is type 1 diabetic as well as writing children’s fiction. This article is also featured on Medium

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