My Type 1 Diagnosis Story

I was 13, in Home Economics class, and I was being cheeky and angry towards my teacher, causing me to get sent out of class (which was unlike me). During the class, I asked to go to the toilet. I asked to go fill up my water bottle. I also asked to go to the medical room because I felt faint when I stood up. The teacher put all of these things down as typical teenager behaviour, me trying to skive class because I was being punished. She wasn't to know that I was being angry, constantly thirsty and needing the toilet, and feeling really tired and faint, because I had diagnosed Type 1 Diabetes.

I told my mum I felt unwell, and she told me that I should go home. Although I did feel slightly under the weather, I felt like I was faking it, and like I shouldn't be going home. While I was waiting in the medical room for my mum to collect me from school, there was a poster in the school by Diabetes UK. It was the 4 Ts campaign (Toilet, Thirsty, Tired, Thinner as the symptoms of Type 1 Diabetes) and at the back of my mind it registered that I had been experiencing these, but I never thought anything of it.

The 4 Ts campaign poster

It was a Friday Morning, I was at home after my mum dropped me off, and she called me to tell me she made a doctors appointment for me. I honestly thought this was a waste of time, because after sitting for a couple of hours, I felt fine. I told my mum this, and she told me that I was going to the doctors, because drinking about 4 litres of water in one morning and losing 2 stone in 3 months wasn't normal, and I agreed to go.

As it was last minute, we got an emergency appointment with the nurse at our GP. Atfer explaining to the nurse everything, she told me that she would take blood from me to test for things on Monday morning, but she didn't think it was anything. My mum prompted her that I had common symptoms of Type 1 Diabetes, and that a blood sugar test takes 10 seconds tops. The nurse looked doubtful that it could be Type 1 Diabetes, but agreed to give me a quick blood sugar test anyway. While she was setting up the test she told us that I would have to come back in on Monday to get blood taken and further tests done, because this test would be normal. My blood sugar was 28 moll/l (usual range is 4-7 moll/l), and the nurse told my mum to take me straight to A&E, because I definitely had Type 1 Diabetes. I could have ended up really ill over the weekend if my mum hadn't pushed the nurse to test me and I had just come in on Monday.

My dad and I, 6 days before I was diagnosed (notice how baggy the dress is)

In the hospital, I was told I wasn't in DKA (diabetic ketoacidosis) yet, so all I needed to do was learn how to inject myself with insulin, test my blood sugar and generally learn everything about Type 1 Diabetes. I remember a nurse asking me how I felt after my first insulin injection, and I told her I felt like I could go for a run as I was feeling so much better!

About 2 months before I was diagnosed, I was on a long bus journey with my brother. I only had fresh orange with me, and at every service station I had to run in, go to the toilet and get a litre of water. Afterwards, I told my mum about it, and she joked, "I wonder if you have diabetes". It was a complete joke, and she never thought it was true, but its hard to think that even though people know the signs, we don't believe the symptoms.

I remember me and my sister, Iona, going for a run at the park near my house, about a month before I was diagnosed. I had went to the toilet before I left, but I didn't bring any water with me. We had gotten to the park at a jog, and that took us 5 minutes, and I told Iona that I desperately needed to the toilet. She got mad at me because I had just gone, but in the end I had to go in the trees in the middle of the park, with Iona guarding me to make sure no one could see. We both went back after that, because I was too tired and thirsty to continue, and I just put it down to me being unfit. It frustrated me and Iona because all in all, we were out for about 15 minutes, and 5 of them was me trying to find somewhere to go to the toilet.

Iona and I shortly before I was diagnosed (I'm 3 years older than her)

So much happened that could have led me to think Type 1 Diabetes. I even saw a campaign with all the symptoms on it that I had, yet it never crossed my mind as a possibility, even when my mum was talking about it, until the nurse diagnosed me. I thought I was just a teenager feeling tired and going through puberty.

It is scary to think about what could have happened if my mum hadn't known the signs of Type 1 Diabetes. Doing a blood sugar test is so simple, and takes 10 seconds to do, yet the nurse didn't even consider doing one without prompting. My diagnosis isn't dramatic, I wasn't near death yet and I was only in the hospital for 2 days to learn the ropes, but it was the start of a lifelong journey. I didn't realise at the time how much of an impact Type 1 Diabetes would have in my life, but it is funny looking back to before I was diagnosed, and noticing the subtle signs.

It took one finger prick and one afternoon, to change the rest of my life, to discover that I will always be dependent on insulin to survive.

Until next time,

Alyssa x

Young Leaders Project - Weekend Residential

A group photo of the Young Leaders

Diabetes Scotland recently got funding to start a new project with young adults age 16-25 who are living with Type 1 Diabetes, with the aim of connecting young people and establishing a peer support network, building on their skill sets and give young people a chance to have a say and build on issues important to them, letting them be young leaders of diabetes in Scotland.

The first part of this project was a weekend residential with all the young people, and the intention of this residential was to build connections within the team, and to plan the first stages of the project. As everyone has different experiences with type 1 diabetes, everyone has different things they are knowledgeable and passionate about. That's why the focus of the project is to have every individual plan their own projects, which are supported by Diabetes Scotland and the other young leaders. This allows projects to be ran by people who are truly passionate about making a change.

Team challenges was the first part of the weekend. The first exercise we needed to do was get a tube over everybody, which required teamwork and communication in order to complete the task as quickly as possible.

The next part was trying to cross a "lava river" with only 6 blocks, and this required problem solving and again, team work.

Next we had to all safely get through a spider web, which meant we all had to rely on each other to be carried through!

Next we were all blindfolded and tasked with guiding each other along a rope and making sure everyone got through safely.

Finally we were tasked with carrying a mug of water through an assault course under time constraints, which definitely taught us that we need to communicate and help each other when one of us found it difficult.

All of these exercises taught us that we all have different strengths, and we can use those strengths everyone else. They were really good exercises in demonstrating how important it is to use the resources available to us, and that it is good to get a different perspective of every issue.

Over the weekend, we learned about TED talks, we brainstormed on issues that affect people living with Type 1 Diabetes. We talked about the different ways we could make an impact, including how to organise and run campaigns (a session I helped facilitate)

Me helping to facilitate a campaigning session

We came away with action plans on what we want to do, and every single person left the weekend excited about the year and the projects we want to do. We are receiving so much support from Diabetes Scotland, it's hard to believe that the project can be anything but successful.

Brainstorming / discussing ideas

When this project was announced, I was skeptical as with university and my other commitments, I didn't believe I would have enough time to make the most of this opportunity. I spoke to Katie, who is the leader of this project, and she said that if it is too much of a time commitment, I can take a step back for a while, and be as involved as I wanted.

You don't have to have any experience to be a part of this project, just be aged 16-25 and living with Type 1 Diabetes. The project is still recruiting, so if you want to get involved, follow the link below:

https://www.diabetes.org.uk/In_Your_Area/Scotland/16-25/

Low Blood Sugar Seizures and Epilepsy

Although I have Type 1 Diabetes, I often feel like I have more anxiety than most about having low blood sugar. This is because when my blood sugar goes low, I often have seizures. My first major seizure happened when I went low (called a hypo) on a flume, and had to get fished out of the water at the botto. This has meant that the NHS has funded a CGM (continuous glucose monitor, which gives me a reading of my blood sugar every 5 minutes and sends the reading to my pump) for me to prevent my blood sugar going low, but this hasn't stopped them completely.

When I say I have seizures, I mean full Tonic Clonic seizures. I become unconscious, shake and am in and out of consciousness for a good half hour before I wake up with a very sore tongue from biting it, and feel like I am very hungover for the next day. I hate letting my diabetes hold me back, so I became so anxious of my blood sugar dropping, that I often used to let my blood sugar sit higher to prevent myself going low, which meant I was unwell a lot.

In April of this year, I woke up one morning, tested my blood sugar and it was 9 mmol/l. The next thing I know, I had a seizure. This was strange for me, because I had never had a seizure without my blood sugar being low, so this triggered a thought. Maybe low blood sugar was a trigger for seizures, and not the cause. I went to my GP with this, and after examining me to make sure there wasn't another cause, she agreed this was a possibility, and she referred me to a neurologist.

This is such a personal issue for me, as it causes me so much anxiety about day to day tasks. I have had seizures on the bus (3 times) and walking home, so it's hard for me to think about the possibility of me having seizures that are near impossible to prevent. I still sometimes get upset about the fact that I can't get my driver's licence because of these seizures, and the fact that if I have a seizure, I have to put the people around me at an inconvenience (which did happen at my flat at university).

I had my appointment at the neurologist, I explained everything that has happened with my low blood sugar seizures, and the one I had when my blood sugar wasn't low. She called my mum, who had seen me have the seizures, and could explain  what they looked like, and how I reacted. The neurologist then went on to tell me that I had epilepsy and that,  as I had predicted, low blood sugar was just a trigger to the seizures, rather than the cause. She put me on tablets to hopefully control these seizures, and said I had to go for a EEG and an MRI of my brain to find out more about my epilepsy.

I was really upset about having another thing to deal with, another label put on my head. I already have Type 1 Diabetes, now I have to declare on forms that I also have epilepsy. After the neurologist told me, I just walked around the city where I live, trying to process things, and get my head clear, before I could tell anyone. 

My tweets about the situation shortly after it happened

I have been on the tablets prescribed to me for over a month now, with no visible side effects, and I haven't had a seizure since April. I still don't know whether this is because I haven't had any bad hypos or because of my new tablets, but I am trying to control my Type 1 Diabetes better, as I don't like feeling unwell all the time. I am hopeful that in the future I won't have any anxiety about living my life, or going on the bus myself, and that maybe one day I can get my drivers licence.

Until next time,

Alyssa x