Appraisals hidden disabilities and me

Photo by me

Only two years ago, work goals and objectives were being set; it was time to take my career to the next level after returning from a year’s maternity leave. It was a good opportunity to set goals around what I wanted to achieve at work for the next year. But you know what they say about the best laid plans… for me they got completely obliterated around July 2018 (update from author: The year 2020 has also given many of us a reality check on what goals are important). Type 1 diabetes had other ideas and took a head long charge into my life as our two year old daughter was admitted to A&E with diabetic ketoacidosis (DKA for short). I won’t go into detail here on what this is, but if you’ve reached this stage of illness you really need to buckle in for one hell of a ride. As a parent you can do nothing except wait and watch as amazing NHS doctors and nurses bring your child back from the brink. And they did. And then you remember to breathe again.

Before my family could process what had happened, a whole new list of objectives was given to us whether we liked it or not:

Objective 1: Learn new skills

Have you ever considered training in injecting your child? No, me neither, but when the doctors tell you that injecting insulin is as important to your child as oxygen, you understand how important this new skill is.

Without insulin, our little lady would not be able to unlock the crucial energy source from her food that we so often take for granted. So we began a crash course and left the hospital a few days later dazed and confused holding the biggest bag of prescriptions I’ve ever seen. We learnt to do finger pricks to test sugar levels and injecting insulin around five times a day.

There were tears and tantrums (that was just me) as we tried to incorporate this new routine into our daily lives. At first you are so busy firefighting that you just take it one injection at a time, but then you start wondering — how will we ever be able to sit at a restaurant and have nice meals together when so much planning is involved? You then remind yourself that you would be crazy thinking you’d be sitting having a relaxed meal in a restaurant with a two and four year old at the best of times anyway.

Progress against objective: ninja status in the injecting arena.

Objective 2: Manage and maintain

A sentence that you will often hear with diabetes is “the good thing is that it can be managed”. What I’ve since realised is that there is an awful lot of work that goes on in the background to manage and maintain sugar levels, particularly with young children. Our little lady can be hyper (high sugar levels) one hour, then drop like a stone to hypo (low sugar levels) in the next couple of hours, due to how quickly she reacts to food and insulin. We now have to carb count all the food (if you see a family out and about with scales measuring the bread for a sandwich you now know why). You then need to punch in a number into the meter that works out how much insulin is needed. I’ve found it’s a great way to brush up on your maths.

Just to give you more of an idea of what is involved in the managing process, our medicine cupboard used to consist of a couple of half used calpol bottles, a tube of savlon cream, and plasters that were of varying sizes (and never the size you needed). These days we use up a few more shelves then previous and the photo here is an example of what you need at the very bare minimum — and this doesn’t even include the insulin cartridges in the fridge.

Progress against objective: I have built an excellent relationship with the local pharmacist, who always tells us how great we’re doing and keeps us encouraged.

Objective 3: Research new technologies

This is the only objective I had on my list at the start of the year. ‘Research the benefits of new technology and understand where the pitfalls lie’. This objective has taken on a new lens as I’ve been researching the benefits of technology and its impact on health. We’ve been looking at glucose monitors — one of the features of some of these amazing devices is to alarm the person if they drop too much in their sleep. Just one simple step forward in diabetes-related technology can be a game changer.

Of course, I am now even more of a technology groupie than before. So I’m currently learning about the closed loop technology that’s becoming available. I’m reading all the fantastic research that’s going on, and discovering a whole other world about bio hacks (which, by the way, is fascinating).

Current status: continuing to research and implement new technologies, albeit different to those identified in original objectives.

And as for my little lady, well she has sort of become quite similar to the queen, in that she now has two birthdays a year. Her real birthday and her diaversary (I promise you this is a real thing). When we approached that first milestone we commissioned the wonderful illustrator Ste (Ste illustrates) to show how incredible she is and how incredible her supportive big brother has been during this journey. This is what type 1 diabetes looks like for us :

Monkey insulin bag — model’s own

So as another year begins I’ve looked back and realised what an amazing network of family, friends, work colleagues, nursery carers and a dedicated diabetes team has done to help us get through these changes. Having the support of work and having policies in place such as parental leave and flexible working to give us time to process these changes was a huge benefit and helped to give us the space and time we needed to adjust to our new lifestyle. I also made use of the employee assistant programme where I could talk through the changes and learn how to process it all.

They say you need a village to help bring up a family but sometimes you might just need a mini city of people to help you along the way.

So if you find yourself reflecting on a year that didn’t quite turn out how you expected — be kind to yourself and see what nuggets you can learn from it to keep you moving forward. And for those of you that notice a friend or colleague who’s struggling, then why not ask them for a cup of tea and offer a kind word or two, you will be amazed at how far kindness can get you and others.

I write about caring for an amazing child who is type 1 diabetic as well as writing children’s fiction. This article was originally posted in 2019 on LinkedIN and Medium

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