Today's guest blog is written by Shelley, who is sharing her personal journey with Type 1 Diabetes. I first met Shelley when we volunteered together at the Diabetes UK Family Weekender in Aviemore, however we connected more when we both signed up to be volunteers for Diabetes Edinburgh, and are now both Young Leaders for the Diabetes UK Together Type 1 project. Shelley is part of the ‘Diabetes Tech Can’t Wait’ campaign, run by Diabetes Scotland, and in this she has shared her story online, even reaching out to local newspapers and getting the campaign national recognition! She has also raised awareness of diabetes and the campaign in her workplace, making a massive difference to her peers. I am inspired by Shelley; she has lived with Type 1 Diabetes for so long and now is using her personal story to help other people! Keep reading to hear her lived experience journey with diabetes.
Until Next Time,
Hello! My name is Shelley, and I’m 24 years old. I live in Edinburgh currently, but originally I’m from Golspie up in the Scottish Highlands, and I work at Scottish Water as a Risk Technician, which I have done for over 3 years. I was diagnosed with type one diabetes at the age of 4, and I currently am on Omnipod Dash & Dexcom One, which has been a long wait to get access to - over 19 years with Type 1 before I had a pump due to being “too well controlled” & long waiting lists!
What age were you diagnosed, do you remember being diagnosed and how did it impact on your life?
I was diagnosed at age 4, so I don’t remember much at all from when I was younger. I do remember eating so many sweeties, crisps and fizzy juice and honestly have no idea how my HBA1C was always in range. My mum was always shocked at how I managed my Diabetes with the amount I ate, and not to mention the fact that I never carb counted! However, she managed to never give it away to the doctors by telling them how much sweeties I was eating and wasn’t carb counting and didn’t even attempt to (thanks mum :D). I feel I didn’t take my Diabetes control seriously enough until I moved out at the age of 17, as I knew I wouldn’t have my parents with me every day.
How has managing Type 1 Diabetes influenced your daily routines, including diet, exercise, and overall lifestyle choices?
I really used to hold back on doing things because I was worried I would have a hypo doing things I enjoy. I now live my life the way I want to and don’t let Diabetes get in the way. It is hard but I try not to let it get in the way. If I want cake, I’ll have cake, even if I’m high! When I exercise, if I’m hypo, I’ll have a carton of juice, wait 10 minutes and carry on! Don’t let diabetes stop you! I go to the gym and love to weight lift, especially barbell squats! It took me a while to find the pattern of why I was going high at the gym but soon realised lifting weights increases blood sugars because of adrenalin, so I soon had a temp basal set up for when I went to the gym to prevent the high spike. I also like to go running (only on nice sunny days haha), and for this I put a reduction of insulin on my insulin pump to prevent any hypo’s. When I was on injections, I would only go on runs when I didn’t have active insulin on from meals.
Were there any unexpected or surprising aspects of living with Type 1 Diabetes that you discovered along your journey?
MATHS. I hate maths, but when you have diabetes, you don’t have a choice in doing it. You need to make so many decisions and calculations to even have a small biscuit! A calculator is my best friend and I just have to make sure I calculate what I’m eating correctly.
How have your family, friends, or a diabetes community contributed to your ability to cope with and manage the condition?
My friends and family have helped me massively along the way, can’t thank them enough for the support. I got in contact with Diabetes Scotland and got put in touch with a young leader, Emma. Ever since meeting Emma through Diabetes Scotland, my confidence in managing my diabetes and confidence in general has grown a lot. I signed up to volunteer at the Diabetes UK Family Weekender in Aviemore and met so many amazing volunteers and lovely families who were attending the event. This is also where I met Alyssa! After volunteering for Diabetes UK, I attended my first Diabetes Edinburgh support group meetup and met so many amazing people, I now volunteer for Diabetes Edinburgh and love being involved in the group. After speaking with other people living with type 1 diabetes, I soon realised all the tech that was available and learnt a lot about the insulin pumps and what I could have. The diabetes community is unbeatable, they are always there to help you and they understand how you feel!
Can you recount a particularly challenging or rewarding experience related to your journey with Type 1 Diabetes?
Getting on the Omnipod dash insulin pump, this has changed my life. I have better control and so thankful of all the functions a pump has such as using temp basals. I need to increase my insulin by 40% when working due to stress levels and having this has helped my overall control. I can go out a walk / exercise and not have to stress because I’ve put on my temp basals to keep me in range. I just feel my overall stress levels have improved since going onto the pump. Volunteering for Diabetes UK/Scotland is so rewarding and fun! I get to meet so many amazing people and have made friends for life through volunteering. I get to help other people with just telling them about my life living with diabetes and tech I use, and I get to do this all whilst going out and doing fun activities!
How do you navigate the emotional and psychological aspects of living with a chronic condition, and what coping mechanisms have you found effective?
Everyday is so different, Diabetes can be so frustrating, and some days are tougher than others. No two days are ever the same, I can have the exact same food, drink and sleep, and I’ll have ‘perfect’ range one day, same routine next day and I’m way above 13. Random high blood sugars are my biggest frustration, I can just be sitting watching TV and I’m running really high, but I’ve not had or done anything to cause this. Truthfully my friends and family help me cope, especially my T1 friends. When speaking to others living with diabetes, they understand exactly how you feel. I am very open about my feelings and anything that is bothering me, I like to speak to my friends and family to get it out in the open, and it feels like a weight has been lifted from my shoulders just talking it out. Please don’t suffer alone.
Have you integrated any diabetes management technologies into your routine, such as insulin pumps or continuous glucose monitoring systems, and how have they impacted your life?
I currently use both the OmniPod Dash and Dexcom one to self-manage my diabetes. These have been a fantastic addition to my life as I have finally moved from injecting myself over 5x everyday to an insulin pump that continuously delivers insulin into my body, and this makes life so much easier! I’m now no longer covered in bruises from my injections and finger prick!
What words of wisdom or practical tips would you offer to someone who has recently been diagnosed with Type 1 Diabetes?
Type 1 Diabetes can be a lonely thing to live with. Reach out to people, speak to your family and friends. Join social media pages for type 1 diabetes, because it may feel like it, but you aren’t alone in your journey! You can still live a normal life.
What are your hopes and aspirations for the future, both in terms of managing Type 1 Diabetes and achieving personal goals?
I would love to get onto a closed loop system with the OmniPod 5 and Dexcom G6 as this is the latest technology that is available. I am currently on a waiting list for this, and I hope to be able to receive it soon. This system would allow me to be much more independent as I wouldn’t have to consistently input my blood levels and manually work the insulin dripping into me through my pump. In the future, I’d love to volunteer at more Diabetes UK events and also help Diabetes Edinburgh grow even bigger!