Story

I moved to Honduras on my own at 17 to volunteer in a school there.

And I am Type 1 Diabetic!

Here's my story

My Diagnosis

I was diagnosed with type 1 diabetes in 2022, 3 days after my 14th birthday.

I was drinking sooo much water and apple juice and going to pee like 50 times a day. But I just kept putting it off, and thinking I was fine.

At the time, my dad knew someone who's daughter got diagnosed with t1d just a few months before, and she had the same symptoms as me. So he really wanted me to see a doctor.

Eventually, I agreed, and they did some tests at the GP clinic, but my blood sugar levels couldn't be read by the tester they had, so they said I needed to go to the hospital that same day.

I just thought that the meter was broken or something... I didn't think that my blood sugar levels were so high that they were off the scale! And that's why the glucometer at the GP couldn't read what level they were at!

So we didn't know how urgent it was, to be honest. So we went home, made some pasta for dinner (knowing that you can sometimes be waiting in the A&E for like 4 hours!)

But... eating pasta as a not yet diagnosed type 1 diabetic probably wasn't the best idea, in hind sight!

I remember that day very clearly, because when I was making that pasta, I remember I accidentally dropped the whole entire jar of salt in the pot and that was probably the saltiest pasta ever!!!

After dinner, we rocked on up to the hospital, expecting to be told I was fine and carry on with life.

Well... we all know that's not exactly what happened!

I got some more tests done, given a glucometer, and taken to a ward. But I still had no idea what was going on. I think everyone just assumed I already knew I was being diagnosed with type 1 diabetes, or that I would be told by someone else. But no one had actually told me.

Until one of the nurses sat down next to me and said something like

"I also have type 1 diabetes. We're going to inject you with some insulin, and you're going to be fine. Diabetes doesn't have to stop you from doing anything."

Now, when she said that, I was still confused. I still didn't know what was going on, I didn't really know what t1d was at the time. I had heard about it, and there was a girl who I went to school with that had it, but I didn't really understand it that much.

So I just thought I was getting one injection, and then I'd be back home...

And then they told me I was going to be staying in the hospital and getting my dinner (again).

Obviously I wasn't hungry, I just had a bunch of salty pasta, so I had half a slice of warm bread with an unnoticable layre of jam on top.

I just remember lying there, getting poked with needles left right and centre, and thinking that I was glad I was going to be okay, and they were going to fix whatever was wrong with me.

I still didn't know that this would be a forever thing.

That night was the first night in a long time where I didn't wake up 5+ times to go to the bathroom.

I felt a lot better than I had been feeling, and I didn't even believe I was sick before diagnosis.

The next days, I was flooded with messages. People were telling me that they were sorry, and that I'll be okay, and all of that. And I truly appreciated every single text, call, visit and gift.

But although I was in the hospital, I didn't feel unwell, I just felt myself again!
And I was very grateful that those messages weren't because I had been diagnosed with something that couldn't be managed.

I know that I can't be cured, but I am so thankful that I can continue living my life as before (more or less).

Everyone who worked in the hospital that helped me with my diagnosis were absoloutley lovely, and I was (and am) so lucky to have such an amazing diabetic team.

I stayed in the hospital for 4 nights. We had some training sessions with the dietitions about carbohydrates, and also how to do insulin injections, blood glucose monitoring, correction factors for high blood sugar, hypo treatment for low blood sugar, exercise and sick day diabetes management.

There was a lot to learn, but I picked it up, and wanted to be able to manage this by myself.

I was diagnosed on a Friday, and I was dissapointed that I couldn't see the horse I shared at the time called George. Or go riding with my friends that weekend.

And yes, not seeing the horses was a bigger concern to me that weekend than the life changing diagnosis!!!!

It was the same with school. I didn't want to be missing out on seeing my friends. And I didn't even want to think about all the work I would be missing at school that I had to catch up on.

But I got home on the Tuesday, and was told to stay off school that week, wait to get a CGM and get taught how to use one, and then I could go back to my routine.

However...

That didn't go quite to plan, because just after getting home, I tested positive for COVID. And so did my parents.

So we had to stay at home for even longer!

By then, I hadn't seen my friends in ages! I had loads of school work to catch up on, and I hadn't seen the horses either!

I couldn't wait to go back to school (I was one of those kids!) but I was also nervous. How would I manage t1d at school?

That would be a whole other thing.

The complications I had after diagnosis

I just seemed to take everything as it came at that point. I was just plodding along, and getting used to managing type 1 diabetes.

I was slowly getting introduced more and more into exercise, and how to make sure I wouldn't have really low blood sugar when I was exercising.

But I was starting to get into the honeymoon period (when you start needing less insulin after diagnosis). And I was having lots of hypos (low blood sugar episodes) which can be dangerous.

I remember one particular time, when I had PE at school and a different teacher than normal.

So, like before all exerice, I checked my blood sugar levels before, and needed to have a snack before so that I wouldn't hypo.

I was a quiet, well-behaved student at the back of the class who just sort of blended in when I was that time. I wasn't overly loud, but I was extremely sensitive.

So when my teacher asked me to go 'empty my mouth' in front of all of my classmates, and there were 30+ faces that turned around to stare at me... well, let's just say that was an unpleasant experience, and my tomato-coloured face said it all.

I just had to say "no, sorry." and he asked to speak to me after he finished explaining the activity.

By that point, I burst into tears and two of my friends were comforting me whilst we listened.

I didn't even give him a chance to try to get me into trouble when he spoke to me. I was just angry, upset and humiliated. So between sobs, I told him that I was diabetic, and he shouldn't have drawn attention to that infront of the whole class.

I don't actually remember what happened during the actual PE lesson, but I do remember the next day, I went to apologise to him for shouting at him. Even though he shouldn't have done that, it wasn't his fault no one told him I was diabetic.

He did also apologise for embarasing me in front of everyone, and I could tell he did genuinley feel really bad.

Over the next few years of school, he was being very considerate and a few times asked if I needed to leave early to take my insulin and get lunch before the queue got really long. So I did apreciate that.

Since becoming a teacher, I have reflected on that situation before, and I do understand that sometimes, we do accidentally pick on the well behaved students when the class is a bit chaotic and then feel bad after. And no one is perfect. But I do know that he learned from that situation, I did too, and I know that when another type 1 diabetic student is eating in his class, he will act differently. So as much as it wasn't the best experience for me, I am glad that no one else will have the same experience with that teacher.

But it's safe to say that after that, I can only remember positive experiences with my teachers and t1d. I was allowed to leave class early to take insulin before lunch without a problem, and I didn't feel like I was given special treatment either, which I was grateful for.

Overall in high school, I did have good relationships with my teachers, which did make it a positive experience for me.

My experience with the Honeymoon Period

If you're unfamiliar with the term, the honeymoon period happens shortly after t1d diagnosis, and you don't need as much insulin as before because the pancreas can temporarily produce some insulin.

So, like I said earlier, I was just entering the honeymoon period and was having a lot of hypos. So my insulin kept having to get reduced and reduced.

This was about 2 months after diagnosis. And I wasn't too bothered at the time because the insulin was keeping me alive, and I was (and still am) very grateful for that.

I think it was easier for me when I first got diagnosed because I didn't know what was happening. I just took one step at a time, and before I knew it, I was managing my diabetes fine on my own.

But things took a turn.

I was having hypo after hypo after hypo.

It felt like I was living off dextro tablets and lift drinks!

So my insulin dosages had to be redused so much, until they couldn't be lowered any more. So I had to be taken off both bolus and basal insulin (bolus is fast-acting for eating and correcting high blood sugar, and basal is background insulin) because it was just too much for me.

I knew all of the doctors and nurses were saying that it would only be a matter of time before I would need to go back on insulin again sometime soon. Maybe after a few days, weeks or months.

But those days, weeks and months passed... and I still didn't need any insulin.

A small part of me was thinking that I had beat the system! I was cured, somehow, even though I was told that would me impossible.

But in the back of my mind, I was starting to dread of going back on insulin injections one day.

As much as the name 'honeymoon period' makes it sound like a blissful experience, it wasn't really like that for me.

Yes, I didn't need injections, but I was still diagnosed as a type 1 diabetic. And every meal I ate, I wondered if that would be the last one before having to go back on insulin.

There was so much unknown, because the hopeful part of me wished this would last forever, but I didn't want to be dreading going back to injecting myself 4+ times a day.

A part of me wished I had never been off of insulin in the first place, because I wouldn't be in that unknown.

I felt like I was constantly battling both the optimistic and pesimistic thoughts in my mind. And the longer it went on, the more intense the dread of my next injection became. 

Let's fast forward to about a year and a half of being off insulin...

My blood glucose levels rose more whenever I ate something, but then came the denial stage.

I didn't want to go back on insulin.

I had avoided it for so long that it was so much harder to face than pre-diagnosis because I had developed over a year of worrying for this time to come.

I only spent about 2 months injecting insulin, but I spent over 12 months dodging the needles!

I wouldn't say that I had a problem with the needles, I don't really know what the issue was, but I think it was just the unknown of when it was going to happen.

 

The pure denial stage lasted about 6 months in itself! I ate foods with less and less carbs. I spent countless hours each day in my room, jogging on the spot (I got a lot fitter in that time!) I forced so much water down my throat to compensate for the food I ate. I became so unhealthy, and lost a lot of weight. But for an insecure 16 year old girl, I was happy going at the rate I was going, still avoiding insulin.

I didn't really see the problem with lowering my blood sugar levels through exercise, no carbs, and drinking water instead of injectind insulin.

I lived off of saying "I'm fine" even when I knew I wasn't anymore. But I couldn't face the alternative.

Eventually though, it reached a limit where I couldn't resist insulin it any longer. My body was crying out for help. I was feeling even worse than how I was pre-diagnosis because this time, mentally I wasn't ready for it.

I'll never forget that day in the consultant's office when she told me that the time had come for me to go back on insulin again.

I had a meltdown in her office.

I knew it was coming, but I didn't want to hear it. I think I may have put the blame on myself, because when I was off of insulin, everyone was saying "well done" and "you're doing amazing", which came from lovely and supportive place, but when the time came for me to start on insulin again, I felt like it was my fault.

Like I should have done more, and I wasn't doing well anymore if I had to be back on insulin.

I was ill, and this time, I could never go back to what life was like before. I knew that you can't control whether or not you have type 1 diabetes, I knew that it wasn't my fault and there was nothing I could have done to prolong this, but I still felt like I should have done better.

I felt like I was letting everyone down, because people around me were trying to be supportive and celebrate because they truly believed that I "wasn't diabetic anymore" (which was obviously not the case). But that was just people not understanding, and they had good intentions, but it just put a lot more pressure on me, and on something I had no control over anyway.

This time around, it was 10 times harder. I had to leave class early again to take insulin. But this time, I felt all the eyes on me, more than before. I felt every needle sting more than before, and every comment about my diabetes hurt more than before.

But I coped.

I managed.

What else could I do?

The time just passed, and it began to feel more normal again. Eventually, I felt relief because I didn't have to keep thinking about the possibility of going back on insulin again.

But by that time, I had my pump to look forward to, which I would be getting in only a few months time from then.

When I on the insulin pump, it was so much easier. I felt free again, I felt like myself. I felt so much better than when I was off insulin altogether because there was no dread or denial.

I knew that my future will always have insulin in it, but I'd found peace with that, knowing it was keeping me alive, and that that would never change.

Now there wasn't going to be a sudden, unpredictable moment where everything would change anymore, and that was so much easier for me to deal with. 

The insulin pump did really give me so much freedom.

I didn't have to leave class early to inject insulin before lunch, because I could just bolus in class on my pump.

I didn't have to leave class in front of everyone anymore.

And it did allow me to feel soooo much better! I could actually live my life and think about things other than diabetes.

I started planning a gap year, and I volunteered in Honduras for a year! I could do so many amazing things despite having type 1 diabetes.

My experience travelling with T1D

I spent a year volunteering in a school in Honduras.

I left the UK when I was 17 with two massive suitcases full of medical supplies to last me the full time.

I brought my scales for weighing my food, and some keep-cool containers to keep my insulin cold on the 36 hour journey to get there!

I had to figure out a lot. There wasn't much carb information about, and there were very frequent power cuts! So my insulin needed to be kept cool when we had no electricity.

There were so many things to plan and think about, and my mum helped me so much with all of that.

We have videos on our youtube channel.

Things were definitly NOT all sunshine and rainbows though!

I made loads of mistakes and had to learn as I went.

There were times when my blood sugar levels went all over the place, times when students at the school I volunteered pointed at my pump or CGM and asked me what it was. There were times when I over-bolused. Times when I got given the wrong food (a lot of times I got given meat and I'm vegetarian!)

But it was a lot of learning, and I am so happy that I had the chance to experience it all!

Being on the other side of the world from home at 17, living a completely different life than the one I was used to really made me realise that I could do anything. I didn't have to let diabetes determine what I could or couldn't do.

And there's nothing special or different about me that means that I more capable of doing that than anyone else. I'm genuinly just 'normal'.

I'm NOT saying you have to live in Honduras for a year teaching children! I'm just saying that if there is something you really want to do, don't let diabetes stop you from living your amazing life.

So if I can do it, so can you!

How The Carbculator came along

The whole time I have had type 1 diabetes my parents have been really supportive.

When I was first diagnosed, my dad suggested that we wrote down everything that I ate in this little notebook, to keep track of everything.

The notebooks were definitly a lot easier than having loose pieces of paper scattered around the kitchen!

So over time, we just kept on filling out this notebook with the same structure.

We did refine the way we recorded my carb info as we went, and got faster at it. Each new notebook we used, we would have a new idea for how we could make it better and easier to count carbs.

When I was in Honduras, and I didn't have the physical notebook with me, it made it a bit harder, and it was more challenging to manage my blood sugar levels. But I was able to follow the same system I was used to using in the notebooks.

Especially for breakfasts. I would have the same porrige or overnight oats most mornings, and it was just so simple.

When I came back from Honduras, I realised that it wasn't just what I wrote in the notebook, what foods I ate, what method I used to deliver insulin., it was everything. The whole entire system I had been following without even realising it that gave me the freedom to do what I loved, the confidence to do it independently, and what gave my parents the trust in me to go off and do it myself.

So, that's how The Carbculator began. From years of refinement through lived experience being a teenager with type 1 diabetes, both in the UK and living abroad.

I truly believe that the whole system is what made the transformation for me. To go from dreading taking insulin injections to being a confident type 1 diabetic who isn't afraid to give anything a go.

The Carbculator gives me confidence, my parents peace of mind, where we don't have to think about my condition every minute of every day, and live lives we all enjoy.