There are many aspects of diabetes and diabetes care to be positive about, and many that the charity spends time campaigning about or working with people with diabetes to address and improve. All of these issues motivate me - but there is are two areas that are really important to me and this week they both converge.
Young people who have Type 1 diabetes and engagement with people to create a positive change are those two issues. Tonight I will be briefing the Scottish Parliament Diabetes Cross Party Group on our new children and young people's campaign. The four areas of the campaign are:
- The 4 Ts - the signs and symptoms of T1 diabetes [tired, thinner, thirsty, toilet]
- Standards and access to diabetes care
- Care in schools
- Transition - when children become young people and then move into adult NHS services
PDF link: http://bit.ly/Ykh7YE
Being diagnosed: Hi, I’m Dani. I am 23 years old and have lived with type 1 diabetes for 11 years now. Being diagnosed with diabetes can never come at a good time for anybody. For me, it struck me just as I was starting high school. Instead of making new friends and concentrating on my homework, I was faced with the constant urge for a drink and worrying where the nearest toilet was. My walk home from school became a sprint in order to reach the loo in time. I even got locked out the house on one occasion and had no other option than to pee in the woods behind my house! I then became really lethargic, sleeping at any opportunity. Now, I love a nap as much as the next person, but these were hours at a time. When I eventually got round to going to the doctor’s, I was told that I had tonsillitis and a urine infection at the same time which was causing both thirst and frequent urination. After my mum insisting that this was not the case and that friends/relatives had even suggested it could be diabetes, my doctor ensured us that there was no need to test for diabetes and I was sent home with antibiotics and told to rest.
A few weeks later, I returned to the doctor’s, this time barely able to function normally. I was seen by an experienced and thorough doctor who performed the basic finger prick blood test and tested my urine for ketones. Alarmed by the results (blood glucose reading off the scale and DKA) I was rushed into hospital and diagnosed with type 1 diabetes.
It was all a bit of a blur to be honest. One minute I was finishing school for the day, the next I was lying in a hospital bed surrounded by nurses, doctors, and very worried parents. At first I remember thinking it was quite ‘cool’ having all these people looking after me and feeling sorry for me. However, that feeling very quickly disappeared. I found myself crying at night when my parents went home. I had a horrible headache and was sick for hours as the insulin started doing its job. I still have a notebook which I used as a diary while I was in hospital which read: ‘Why did this have to happen to me, life is so unfair’. Talk about feeling sorry for yourself!!!
From then on, things started to improve and once my blood sugars had stabilised I was introduced to the diabetes team. They were brilliant and helped me and my parents learn all that we needed to know about type 1 diabetes and get started with managing the condition. I was discharged a week after being admitted to hospital, and was sent on my way into my new life with type 1 diabetes.
Living with diabetes:
For the first few years it was relatively easy actually. I was a 12 year old only child, living at home with my mum and dad, I had great friends and loved being active and playing football. Ok, it wasn’t all fun and games, I still had a lot to learn about diabetes, but I was happy and living a healthy life. But then, I turned into a teenager and cracks started to appear.
All I wanted to do was spend time with my friends, socialising and causing mischief – what most teenagers do! I started not to care about my diabetes and would shun it to the side and try to forget about it. Even though I was supposed to carry my insulin and tester everywhere with me, I would go out all weekend and stay at a friends without it. This was my ‘denial’ stage. I didn’t want to take responsibility for my diabetes and make the extra effort to look after myself. The real problems started when I left school and started university. I wanted to enjoy myself and party like every other first year. I would go out drinking and get myself into states that not even a non-diabetic should. I would go for days without doing a test and forget to take injections. I ended up in hospital 3 times, when I had gone on a night out without a proper meal and hadn’t taken my insulin (to make matters worse, I was dressed up as a smurf on one of these occasions, covered in blue paint!).
After the first time, I promised myself it wouldn’t happen again, but what I didn’t realise at the time is that I had to make a behavioural change in order to ensure it didn’t happen again. I was still in the stage of denial and wanting to put my diabetes to the back of my mind, and wanting to be like everybody else. Then, I left home and moved in with a friend from university. In retrospect, this is one of my lowest points. I was so caught up in the excitement of leaving home that I forgot about all the things my parents did to help me. Everyday things that you wouldn’t think twice about became major issues. For example, having some form of sugar in the house in case of a hypo. I was so unorganised and got myself in dangerous situations. Even forgetting to order prescriptions and running out of insulin. These are all things I learnt from and I would never make these mistakes again, but at the time I was faced with feelings of panic and despair. Although it was completely my own fault that I had not been organised and prepared, I still felt sorry for myself and kept wishing that I could forget about it all. This is how I overcame my ‘denial’ of having diabetes and I started to take control.
Turning my life around:
I was at a point in my life where I needed to make decisions, mainly on what career I would like to pursue. I was in my last year of my undergraduate degree in Sport and Exercise Science and needed to think about the next step. I have always had a passion for healthy living and had very quickly realised whilst doing my degree that instead of working with athletes in order to improve performance, I was interested in helping the general public live healthy lives through diet and lifestyle. I therefore applied to do a Masters in Public Health Nutrition.
This made me think about my own health and if I am going to be helping others look after their health, I should take control myself and that meant managing my diabetes effectively. Very quickly, I started making healthy changes to my diet and lifestyle. I made the effort to plan my weekly shops and buy healthy ingredients which I could cook with, instead of being a lazy student and buying ready meals and take aways. I realised that by doing this I was also getting better blood glucose control and managed to drastically reduce my Hba1c. I even noticed that I was getting better results at university and had more energy in general. I also make sure that I exercise regularly and try to keep as fit as possible – something that I do sometimes struggle with because of my diabetes (I would recommend the DAFNE course for anybody having problems with this). Most people are under the impression that having diabetes means that you ‘just have to’ take a few injections a day and do a couple of blood tests here and there. This is true if you are like my former teenage/student self who isn’t properly controlling their diabetes. Whereas for a diabetic to ensure they have optimal health (which I try my best to achieve now), it involves a huge amount of effort. They say that managing diabetes is an art, and it is true. Controlling my diabetes does takes effort but I have made the choice to do so and I am now living my life the way I want to, and my diabetes is damn sure not going to stop me doing anything.
Now: For the first time in my life I have met other young people living with diabetes and been able to share experiences and learn about how others overcome it. The best thing I have done since being diagnosed is volunteering with Diabetes UK Scotland, where I am involved in a young people’s project aiming to support young people living with type 1 diabetes across Scotland. This group has given me the opportunity to share the difficulties I have had with others who may have experienced similar problems, but it has encouraged me to face up to many aspects of my diabetes and take a positive look at living with diabetes. This group is full of bright young individuals and we all share a passion for helping each other and others live with our condition. I would highly encourage young people out there who have maybe struggled with any aspect of their diabetes to get involved, you won’t regret it! The future: I thought I knew everything about my diabetes and that nobody else understood what I was going through, but recently I have realised that I don’t know everything and I learn something new every day. I hope that I continue to learn from others and that others can also learn from my experiences. Lastly, I will never let diabetes get the better of me ever again.
Danni Cochrane, 2013