T1 Talk: Back to the Beginning- Part Two
Today’s post begins a series of conversations between myself and Frank of Type 1 Writes. We first connected through our blogs, and our mutual friend type 1 diabetes. Despite our three year age difference, we have discovered that we both have quite a lot in common. Starting with the fact that we were both diagnosed with type 1 diabetes in May 2010, only a couple of days apart. We’ve started these conversations with the aim of highlighting how type 1 diabetes impacts two people of a similar age, who were diagnosed at slightly different stages of life. Although this is our own unique series of Type 1 Talks, we would like to give credit to Laddie (Test Guess and Go) and Kate (Sweet Success) for the inspiration from their Type 1/Type 2 Conversations series.
Our first Type 1 Talk is titled Back to the Beginning. This isn’t your typical diagnosis story. We aren’t specifically revisiting diagnosis, DKA, or the signs and symptoms of type 1. I guess we’re focussing more on the people who were dealing with a type 1 diagnosis thrown into their lives, and some of the issues they faced.
There are two parts to this Type 1 Talk. The first part is over on Frank’s blog, which you can go back and read here. So far we’ve gotten to know each other (again), what was happening in our lives up until type 1 diabetes came along for the ride, and how we initially reacted to the diagnosis. Now, you’re ready for the second part, which follows right here in this blog post.
How did you manage your diabetes in the beginning?
Bec: I was relentless with my management. I checked my sugar so often it was bordering on obsessive. Back then I was on the 4 injections per day which I loathed so much because I had to go to sickbay at school every single day for my lunch time injection. This meant I had to throw out whatever poor soul was in there. It was just plain awkward, so sometimes I injected through my dress. In hindsight that was perhaps a bad idea…. the bacteria a school dress must carry? *shudder*
Frank: I can’t imagine what it would be like to ‘do’ diabetes at school. I was lucky that I had a bit more freedom as a uni student and casual employee. Yes, I found it rather inconvenient having to stop and inject insulin. I hated the days where I was at uni all day, because it meant that I had to eat lunch and give insulin in public. I would often find a bathroom to check my blood sugar and give an insulin dose. I couldn’t even sit in the garden and eat a peanut butter sandwich without worrying about when I would give my insulin dose and who could see me checking my blood sugar.
I used insulin pens, an Optimum Xceed Blood Glucose Meter and Glucogel Jellybeans. I feel like my diabetes tools were very ‘90s back then. I used to remark how lucky I was that I didn’t have to find veins or use big needles to inject insulin!
I checked my blood sugar every 4-5 hours, typically prior to a meal or bedtime. The numbers were always high, and that was quite frustrating. Back then, meters didn’t have USB ports that could upload the data to a computer. I hated having to keep a paper logbook of numbers. It was a pain to stop and fill out, and a reminder of how ‘imperfect’ my numbers were. I often found myself filling in the blanks prior to clinic day.
My educator taught me to count carbohydrates relatively quickly, but I feel like this made things more frustrating. I settled into a routine of guessing and checking my blood sugar after eating, which wasn’t a recipe for great numbers.
Bec: The feeling of needing to hide is tricky to deal with. I’m glad you don’t feel it as much these days.
I feel ya on the management tools being stuck in the ‘90s. My old Xceed could give you lower readings if you took your time putting the blood on the test strip (don’t try that at home).
And the log books! I still have my first one in all its blood stained glory.
Who was a part of your support network in the initial time after your diagnosis? How did they handle it?
Bec: My initial support network consisted of my Mum, Dad, and a few friends. Mum was pretty upset and used to take notes on everything. She annotated all her recipes to work out the carbs and would tell me ten minutes before dinner was ready so I could have my Apidra injection. I think my Dad might have been in a bit of denial about it, because he’s a fixer and he couldn’t fix it for me. He was always the one to come in and wake me up at 3am if my sugar needed to be checked, even though sometimes that meant he only got an hour or two of sleep after that. He has picked me up from places when I’ve been low.
He’s also tracked down my friend’s phone number when I was out later than I expected one night, having tried to call me ten times. Sorry Dad.
My friends varied. I had a friend in highschool who was very supportive and even made me a diaversary card signed by people in our year, including diabetic socks as a joke. I’ll always be grateful for that. Other friends informed me in later years that I talked about my diabetes too much when I was diagnosed. Ouch.
I don’t see any of those friends in my initial support network these days, but I’m thankful for the support I got.
Frank: I wish more people around me knew that I had diabetes. Your diaversary card made me laugh. I think it’s great that your friends think you talked about your diabetes too much, because at least you were able to feel a bit more comfortable with it around others. I found it difficult because I didn’t simply return to school or work after an absence, with everybody knowing I had just been diagnosed with diabetes. Nobody knew. I hated having to try and explain it, and in some ways it was easier for me to keep it that way.
My initial support network was my immediate family - Mum, Dad, my brother and sister. Mum and Dad are very practical, realistic kind of people. There’s nothing that sets them back. In every situation life has thrown at them, they are always focussed on moving forward and not dwelling too much on what’s happened. That’s not to say they don’t get vocal about things! I continually heard things like “you’ll be able to live a normal life” or “there’ll definitely be a cure in your lifetime!” If they were ever worried or distressed about me, they certainly didn’t show it.
Mum came along with me to all of my sessions with my diabetes educator, and said educator did a great job at including her in our sessions as well. Obviously being a little older than you were Bec, my parents weren’t as hands on in helping me to manage. It was more like how are you going, which frustrated me because there’s no easy answer! But it was my choice to be independent with my d-management.
Bec: I think that can be hard for parents, regardless of your age. I actually took a very independent stance toward my management and being that little bit younger my parents were very uncomfortable. The only help I would accept was a carb count from Mum for dinner and my Dad coming in at 3am to make sure I was awake and testing. They’d often ask what my sugar was and say “Why? What happened?” which came from a place of wanting to help but made it feel like they were saying it was my fault.
I always wonder how siblings go with it. I’m an only child myself. What role did your brother and sister play in that support network?
Frank: They hear me talk about diabetes at the dinner table often, but they’ve never really been ones to ask many questions. My brother is a very vocal person, and he often makes blanket comments about diabetes that I’ve had to correct. Last night, he made the comment that a long time athlete playing sport with type 1 isn’t a big deal, because that’s who they are (athletes). I told him it’s hard enough for me to manage my blood sugar while I’m at work, let alone run a marathon!
What were some of the initial challenges that you faced after your diagnosis?
Bec: My main challenge wasn’t so much the diabetes itself. Well, I mean yes I was hypo unaware for a bit and had some bad lows, but that’s not what springs to mind. Other people were my main challenge. Teenagers are idiots sometimes.
Every single day someone at school would say something stupid. I went to an all girls school, and girls can have a particular nastiness about them at 14. Different isn’t embraced very much and I wanted to just blend in as much as possible. I had been given the title of “the smart one” which I was happy to quietly accept. It didn’t help when the week after I was diagnosed I got called up prior to an exam to stand to the side. I was going to be seated separately. Everyone naturally asked why. I’d check my sugar and someone would comment that I shouldn’t eat sweets. They’d say I brought it on myself and so on. That’s a lot of attention on someone who was used to just being asked about the homework. I started this blog to deal with some of the stupid things I’d been told and eventually I got better at handling it.
Frank: I’m so sorry to hear this Bec, but I know exactly what you mean. I’m almost certain that I would have experienced similar if I were your age. I guess in my case, being surrounded by more mature people was helpful. I was able to be more selective about who I was around and who to share diabetes with.
For me, there was a lot of imperfection. I wondered if I’d ever see a day in that paper logbook without a hypo. Or without a number over 10. My diabetes educator taught me to count carbohydrates. That frustrated me even more, because every kind of food had a different effect on blood sugar levels, of course. There were lots of highs and lows. I didn’t seem to have an answer to manage my diabetes, and the motivation simply wasn’t there.
I also felt very isolated. I didn’t know anyone with diabetes. The trade off to being independent with my management was that I shut my family out a lot, telling myself that they didn’t understand. I was very conscious of my diabetes, and often hid from it. I remember even treating hypos in the bathroom! My diabetes clinic, although excellent, had limited time for me. There were lots of patients, long waiting times for appointments and I was pushed towards self management within a year of being diagnosed.
I didn’t seem to have an answer to manage my diabetes. I didn’t have the network, or the information that I do now, and the motivation simply wasn’t there for a long time.
Bec: The isolation I absolutely get. I was the only person in my school with it, and I didn’t know anyone outside of school either. The first time I met another t1 was at a diabetes camp I went on at 15. Well worth it, it’s quite amusing having two low t1s in the same room at the same time.
Until I went on that camp I didn’t feel like anyone “got it”. My parents would try but they can’t completely know what it’s like to have the constant chatter of “what’s my sugar doing” going on in your head. I think blogging helped that a bit and I eventually “met” other people in similar circumstances to my own.
Briefly, tell us how diabetes has influenced the course of your life?
Bec: This is a big question. I think my diagnosis got me to get out of my shell. I was very passive at 14. I was happy to hold that smart girl label. I had opinions and ideas but couldn’t voice them outside of public speaking competitions and drama classes (which I adored). Having diabetes has made me assertive. I had to tell other people I had it to ensure my own safety. This meant I got better at talking to people I wouldn’t normally talk to. I am an entirely different person to the one I was back then. Now, I’m able to speak at events, mingle with anyone, and voice my opinions. When I got to uni I found I was actually able to be myself. I’m definitely not “the smart one” these days. I’m made up of lots of different qualities and life experiences that give me a unique set of skills and traits. Put simply, I’m Bec! Without the diabetes I don’t think I would have gained the experiences I have now. I wouldn’t be as assertive or willing to try frankly terrifying things like speaking at conferences or climbing mountains in Tasmania.
Frank: Diabetes has consumed a lot of my time and energy. It affects my mood. It invokes feelings of failure and guilt. A bad day is so much harder to deal with, just for the fact that I still have diabetes to manage at the end of it. I often wonder what my life would be like if I didn’t have it...
Diabetes has also made me a more confident person. It’s taught me to speak up for what I want. It’s taught me to take my health seriously, and to stay on top of all of my check ups. It’s made me more conscious of my food and activity choices (coffee and cannoli included).
Obviously I’m also fulfilling my dream of being a writer and digital marketer through my blog Type 1 Writes, and that definitely fills a space where my career never took off. I feel passionate about the condition that I live with. Diabetes is starting to have more of a presence in my offline life and activities, as well. I’ve got a hunch that it might influence the course of my professional life, sometime down the track as well...
Bec: Somehow I think you’re never giving up the coffee and cannoli :)
Don’t give up on the writing and digital marking yet! You might find a way to combine that with the diabetes as a career too.
I considered being a diabetes nurse educator for a while, or an endocrinologist. I suppose for me I thought that my life already felt consumed by this disease. Should that be my 9-5 as well? I decided no, but stuck with health. I wonder how a career in the area would impact your own management/outlook.
If you could go back in time, what advice would you give to your newly diagnosed self?
Bec: I think I’d tell 14 year old Bec that it’s ok not to be perfect at this, because you can’t be. You never will be. I’d also encourage myself to just stop for a second and take some time to comprehend what’s happened. To actively think about it and process it so that 7 years later I wouldn’t suddenly be hit with “Oh. That’s a bit shit isn’t it.”
Finally, enjoy the honeymoon period, kid. You’ll miss it in a few years.
Frank: I’d love to go back and tell myself to jump online. Create a Twitter account, read diabetes blogs and websites, and jump into Twitter chats. All of these really sparked an interest in diabetes. I feel inspired and empowered to better manage my condition. I’d also tell myself to learn to lean on the people around me. I think if I was a little more open even just at home, I might not have been so conscious of my condition for so long. Oh, and it definitely gets better with time. You learn from experience. You pick up all of these little tips and tricks, that make navigating your next scenario a little easier.
We hope you enjoyed reading this Type 1 Talk as much as we did writing it for you. We’d love to hear any of your thoughts or questions in the comments below.
We’re hoping that this is the start of a series of conversations, so stay tuned for our next Type 1 Talk!