A Type 1 Diabetes Diagnosis and Our Journey so far!

This is my first personal post since our daughter’s type 1 diabetes diagnosis in 2020. This is very much from my perspective as a parent living with and caring for a child diagnosed with type 1 diabetes. It delves into our journey, from diagnosis to where we are a year later.


family picture back from hospital after T1D diagnosis
This photo was taken the evening we returned from our hospital stay

A type 1 diabetes diagnosis changes your world. It changes you as an individual, as a parent, as a sibling and as a family.

The photo above of my family is really special to me. It was taken on a whim with no posing, prompting or preening. This was taken on the evening we were discharged from the hospital after my daughter (in the yellow) was diagnosed with type 1 diabetes.

I can’t express how wonderful it felt to see my daughter full of genuine joy again after a period of feeling really poorly. We were all so relieved that she had started to feel better and that she was finally home again, However, little did I understand how this diagnosis and living with type 1 diabetes was just the start of our journey.


Pre-Diagnosis

For quite some time we knew that something wasn’t quite right with our daughter. We were in another covid lockdown in the early summer of 2020 and my daughter’s year group hadn’t returned to school. So she was with me at home every day, home-schooling.

At first, you notice little things like becoming a bit slimmer and a bit more lethargic. But she was about to enter her teens, she had a huge growth spurt over a short period of time and it was exceptionally warm. We just put it down to growth, hormones, and getting older. All normal stuff, well that’s what I kept telling myself!

But then it just didn’t add up and became even more noticeable. She was always in the loo, and couldn’t go to bed without taking a cup of water. She would even have to wake in the night to drink and refill her cup. On top of this, she was so lethargic and tired all the time that she would take herself off to sleep during the day.

We watched her disappear before our eyes, not only physically, but emotionally as well.


What are the symptoms of Type 1 Diabetes?

These are the four signs that you should look for in a child:

girl drinking a glass of water

Thirsty

girl wrapped in duvet

Tired

scales and tape measure

Thinness

toilet sign

Toilet


How is Type 1 Diabetes Diagnosed?

Our first port of call in the UK is the NHS, whether that is with your GP, calling 111 or going to A&E.

I still berate myself for how long it took me to call the doctors to have that first conversation, but I guess that comes with the territory, never-ending parental guilt. Initially, the doctors were going down the pathway of an eating disorder and some of the signs certainly point to that. However, that just didn’t sit right with me and I insisted on my daughter being seen in person.

Once we did manage to see a doctor, it was and still feels like a whirlwind. We went from a suspected eating disorder to finger prick and urine tests showing unusually high blood glucose levels and ketones. So the diagnosis changed and then the phrase type 1 diabetes kept being said, which at that point really didn’t mean much to me.

The GP then referred us to the children’s ward at the hospital, insisting we get there as quickly as possible.

At the hospital we were swarmed, it felt like, by so many people. My daughter was surrounded by numerous nurses and doctors taking samples, putting cannulas in, and asking lots of questions, which I struggled to answer. In the space of possibly an hour, it was confirmed, she had type 1 diabetes.

Finally, we were admitted to the children’s ward, to begin the slow process of recovery and understanding what our new reality was. And after only a few hours of amazing NHS care, an IV delivering much-needed fluid and insulin, I could finally see my daughter returning to us.


Receiving a type 1 Diabetes Diagnosis

Initially, the relief of getting the diagnosis outweighed the severity of the condition for me. Not that I honestly had any idea at that point what type 1 diabetes really was.

Doctors and nurses explained things, and we listened but I am not sure really how much we took in. I somehow managed to stop myself from googling everything under the sun and just focused on trying to make things as comfortable as possible for our stay.

I remember everyone keep asking us if we were OK and at that point we were. For both of us, it was just an enormous sense of relief. Finally, she was starting to feel better again. I think that the shock of it all just kept propelling us forwards, we couldn’t take it all in and really had no clue as to the long-term implications of this diagnosis.

Finally, after piles of information, listening, lots of learning, practising injections, very little sleep and a massive amount of “diabetes stuff”, you are told it’s time to go home. I don’t know if I have ever been so relieved and scared all at once. It’s a little similar to coming home with your child for the first time. The panic and worry set in, What do I do? How am I going to manage?


Living with type 1 diabetes

In the first week, I couldn’t quite work out what all the fuss was about, which feels awful to write now.

I felt like I was in this bubble. My daughter still had pretty high blood glucose levels, and we just did some injections with the meals as we were told, We would carb count according to the dietary plan and we would wake up in the night to check her blood glucose levels. This all seems doable, I kept telling myself. But the enormity and reality of trying to become a pancreas for your child hadn’t even begun to surface.

At this point, we still hadn’t quite figured out the whole management side of things from corrections to carb counting, experienced a hypo (low blood glucose levels), particularly at night, or really started living our lives by alarms or weeks without an interrupted night’s sleep.

I threw myself into the arena of chief organiser, medical officer and dietician, my husband took on the mind boggling tech side of things, and we both read a lot. We immersed ourselves in all the practicalities of what it’s like to live with type 1 diabetes including all the follow-up appointments with the amazing Diabetes Specialist Nursing Team (or DSN’s).

However, as a parent, it can become very easy to fall into solutions, organisation and planning, unknowingly pushing aside the other huge aspects of loss, feelings and emotions that are all part of the diagnosis process.

Here are a few of the thoughts that were whirling around my head at that time

  • Why? Why has this happened?
    • Like a bolt out of the blue, this thing has intruded into our lives.
    • I never asked for this, why has this happened to us?

But yet no one can explain why.

  • I can’t stop thinking about diabetes
    • It takes up such a huge amount of time in my day.
    • How will we learn to live a “normal” life
    • How will my daughter be able to do all the things a child without diabetes can do?
  • This will never go away, How do you learn to live with it?
  • Will our family life ever be the same again?

And you worry all the time!


But family life does go on

Over time you do adapt and learn how to manage the many aspects of the condition. Diabetes just becomes part of your new “normal”. What starts off as insurmountable and scary becomes just another aspect of daily life to do your best with.

Within this huge journey of education and understanding, you gain confidence again as a parent. There are, so many aspects you would have never thought you would have to think about for your child; food, carb counting, exercise, insulin ratios, basal levels, illness and even the weather. But you learn and you do figure it out

Suddenly you become more comfortable. OK, maybe that’s not the right word but certainly are more accepting of your role as a full-time medical carer.

Living your life by an alarm becomes second nature and you in fact depend heavily on them. And even the inevitable lack of sleep becomes normality (although it is still probably the part I hate the most)

There are fewer complications that throw you a curveball and you learn to respond a bit more calmly as you have more understanding and knowledge. You learn to adapt to a world of constant monitoring and endless discussions around diabetes.

The worry is still there, but maybe it shifts and looks a little different.


One year later

I would broadly say that we are in a positive place living with type 1 diabetes now. We have a much greater understanding of what does and doesn’t work for our daughter. But also as parents and carers, we feel more confident in our decision-making. But I’m not sure that we would feel quite this way without all the tech.

Diabetes Technology

Early in 2021, my daughter made the decision to move away from daily injections. This was mostly prompted by the fact that she just couldn’t bear it. So as of April 2021, she has moved on to using a very smart insulin pump, the T-slim X2. This pump connects to another wonderful piece of tech called a Continuous Glucose Monitor (CGM). We use the Dexcom G6. This closed-loop system means that the pump can read her blood glucose levels and automatically adjust her insulin requirements. It also means that background insulin can be adjusted through predictive technology (control IQ).

Now I appreciate just how lucky we are. We are lucky to:

  • Have access to lifesaving medical supplies and such an amazing NHS team. The PDSN team have supported and helped us every step of the way.
  • Be surrounded by wonderful family and friends who are always there with love and support
  • Have all this amazing tech that monitors blood glucose levels and delivers insulin. All of which helps my daughter to tolerate her daily responsibilities. But it also helps us as parents manage type 1 as best we can.

Our type 1 diabetes diagnosis changed us as individuals and as a family. We have had some really tough days but I feel that we are emerging from this experience with greater positivity. This experience has made us a stronger family unit, shaped some of our paths and highlighted the sheer resilience we can have.

So, to all of you living with any form of diabetes, and to all the incredible parents who have to become full-time medical carers, YOU ARE ALL AMAZING!


If you enjoyed reading this then you may find these other posts of interest too:


Helpful Resources

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Michelle Rorke avatar

AUTHOR

14 responses to “A Type 1 Diabetes Diagnosis and Our Journey so far!”

  1. Rachael avatar

    Hi. I cried reading this. Very moving. Must be tough as a parent of a cgild with T1. Very moving. Rachael. X

    1. Michelle avatar

      Hi Rachael. Thank you so much for taking the time to read this and for your lovely comment. It really is appreciated. Michelle x

  2. Lisa avatar

    Beautifully written Michelle, what a wonderful family you are and well done for coming so far and being brave enough to share your journey xx

    1. Michelle avatar

      Thank you Lisa that means a lot xx

  3. John Oliver avatar

    That was a really powerful article Michelle and so accurately conveyed your journey so far. As parents and grandparents we will always be there to give you all the support we can, even in the early hours of the morning. You are both amazing parents who have coped far better than you have credited yourselves under such difficult and stressful circumstances.
    Love xxx

    1. Michelle avatar

      Thank you so much for your thoughtful words. Its this love and support from our family that makes this all so much more endurable Mx

  4. Sue avatar

    Brilliant write up of your 1st year coping with type 1 diabetes Michelle. Love to you all 💙💙💙💙

  5. Suzanne avatar

    It’s been so heartbreaking to watch one of my beautiful nieces and the rest of your family unit go through this truly difficult period of time and has brought ears to my eyes reading this post. I cannot believe how far you have all come in nearly a year. You know we are all here for you to support you along the way. I’m so proud of how you are willing to share your story and hopefully help and support others going though the same. Love you guys lots xxx

    1. Michelle avatar

      Thank you Sis, we couldn’t do it without all the love and support our family have given us. We really are lucky to have you all. Mxx

  6. Anna Shaw avatar

    This is amazing Michelle, I just saw it on Insta- well done to you and your fam xxxx

    1. Michelle avatar

      Thank you Anna and thank you for taking the time to read this. Love to you and your family xx

  7. Claire Rorke avatar

    Wow! Such a powerful post, honest and hope giving to those going through the same. Well done Michelle, proud of you xx

    1. Michelle avatar

      Thank you so much Claire xx

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