Mum of Type One: Raising A Child With Diabetes

1. What is your connection to diabetes?

My middle son was diagnosed with Type 1 diabetes almost 2 years ago and celebrated his 13th birthday in hospital. We had noticed he was thirsty, tired and was going to the toilet a lot. Having seen a colleague’s child diagnosed, I was familiar with the symptoms and got him to the doctor quickly. I’ll never forget the drive home from the hospital: very reminiscent of bringing your baby home for the first time: wondering if you are up to the job and if you can really do it!

2. What is the most challenging part of having a loved one with diabetes?

Not allowing Type 1 diabetes to define my son, me or my family. I felt swallowed whole by this disease when my son was first diagnosed but reminding myself that it’s not me who has diabetes and using the years I have with my son, before he leaves home, to help him to learn to manage it as best he can has become my focus.

Allowing my son to be a normal teenager is really important. I do not expect perfection but I do expect honesty. If Blood Glucose levels have gone crazy, we look back over the day and try to figure out what may have caused it. I never, ever blame. So far this has worked well.

Not letting diabetes dictate what you do is also a challenge. Your instinct on diagnosis is to batten down the hatches and huddle together. I’m so thankful for the advice of our educator to fit diabetes into our lives and not vice versa. My son has played several sports to a high level, has sleepovers, goes on school camps and makes the most of life. As a family, we are really busy. We have camped, and travelled overseas. Next year my son and husband will go on a club rugby trip to Fiji.

Not letting diabetes overtake your normal parenting decisions can be hard too. Teenagers should and must push boundaries and take risks and then learn from the consequences. Even with Type 1 diabetes, and all the complications it brings, teenagers thrive knowing there are rules. We have all the usual situations in our house with the three boys. None of us are perfect.

Realising that you can follow all the diabetes rules and it still can go pear shaped, was a big learning curve. Hormones, stress, sport and many other factors can swing in from left of field and knock everything out of whack. Keeping calm and working with your team to try to figure out the way ahead is about all you can do.

3. Has diabetes coming into your lives changed your family dynamic?

I’d be lying if I said it hasn’t at times. It’s the first thing that comes into my head most mornings and the last thing I think of at night. It follows us around in what we do: sometimes it’s like a stroppy toddler, demanding and moody but at other times we almost forget it’s there.

In some ways, I think we are better people. I notice that we don’t stress the small stuff any more. I’ve always tried to have the approach of looking at any problems and then thinking of how we can fix them: friendship issues, problems at school. These things can generally be fixed, unlike a broken pancreas!

I really believe too that having someone in your life with a chronic illness makes you look at everyone else differently: you tend to look a bit deeper and see past the obvious. I try to be a kinder person since my son’s diagnosis and I see this too in how the rest of my family interacts with other people.

4. Have you adjusted the way you cook for the family at all?

We have access to a great dietitian who told me not to rush out and buy all the diabetes cookbooks. I ignored her, bought them and have hardly looked at them! We basically eat the same, but a healthier version. I bake and make lots of snacks and have found I can cut out so much of the sugar but cakes and biscuits still taste great.

My son has grown 10 cms in less than a year so he and his two,very tall, brothers take a lot of filling! I try to stock the cupboards with healthy options and we talk about how foods can be low or high GI and the impact of that.

In amongst all this, I am very mindful that my son is a normal teenager. There are times when he goes out with his friends to hang out or play sport and I don’t see him for the whole day. He manages really well and eats just like every other teenage boy on those days.

5. What is the best advice you would give to the family of a newly diagnosed person?

Be gentle on yourself and take it easy. Find a couple of people you can talk to and confide in. I’ve got less friends than I had but those I have were there for me through the early days and now I feel lucky, as I know who I can count on.

Avoid the people who like to tell you scary stories. Sometimes people have no filter between their brain and their mouth. I try not to blame them but I do not seek out their company.

Don’t get too excited every time a cure is announced. Staying positive for the future is important but I’ve lost count of how many cures have been announced in the last two years.

Exercise is a great stress reliever. I go for walks a few days a week and find I feel so much better.

Be pro-active in getting your child’s school to do the right thing. I was afraid of being a ‘helicopter parent’ initially but now I am much more direct. It only takes one scary incident and you find your inner strength. Don’t mess with the mum of a child with Type 1 diabetes!

6. How has the Internet helped you?

I avoided the internet for most of the first year as there are so many scary stories out there. Once I had more of an understanding of how my son was doing and the basics of diabetes management, I jumped in again and found I was more drawn to blogs and more recently to twitter.

I made the decision to start my own blog in May 2015. It’s my therapy as, in my day to day life, I don’t talk about diabetes very much at all. I know there are people in the Diabetes Online Community who get what I’m saying and I get a lot of information and even a few laughs from this lovely group of individuals. I feel like I have found my tribe.

Learn more about raising a child with diabetes by following Mum of Type One’s fascinating blog or stay connected through twitter @mumoftype1

Frank: Diabetes Online

When were you diagnosed and with what type of diabetes?

I was diagnosed with type 1 at age 17. The doctor that I went to see failed to diagnose my initial symptoms, and a few days later I ended up in hospital with diabetic ketoacidosis. I’m glad it happened that way, because it connected me to the diabetes clinic at my hospital. I’m not sure if I would have received the same support otherwise. I was also really happy that all my symptoms were gone, so having diabetes didn’t feel like a huge setback. I’m not sure how well I would have reacted to the news if I was diagnosed in the doctor’s office and sent home.

What is your greatest daily struggle?

Food. I have a reasonably healthy diet, but I struggle with the snacks and temptations in between. I’m a terrible sweet tooth. I could easily eat a whole block of chocolate if it was acceptable, and I have become a bit obsessed over finding the perfect Cannoli. I grew up eating junk food every day after school, and it’s been a difficult habit to break since being diagnosed with diabetes.

Has diabetes ever affected your schooling or career?

I count myself very lucky that I was diagnosed after I had finished High School. Although having diabetes in school might have forced me to be a little more open about my condition than I am now. I have definitely drawn upon my Marketing and Communications degree in building my diabetes blog and online presence. I’ve become extremely passionate about diabetes advocacy through my blog, and I would love to make a career of it someday.

How has blogging affected your diabetes management? 

Before I started my blog, I knew nothing about diabetes beyond my own ability to live with and manage it. I never would have guessed that there was even such a thing as the Diabetes Online Community (DOC). Joining the blogosphere and the DOC really ignited my passion for blogging and diabetes advocacy. I love blogging because it makes me think about my diabetes management every day. It’s nice to have my own space to vent, and I find it therapeutic being able to reflect on a situation when I’m in a better headspace. I feel the best about my diabetes in 2015 than I have in any other year, and I credit that to blogging and interacting in the DOC. The people in the DOC provide a daily source of support, inspiration and motivation. I barely know anyone with diabetes in real life, so it’s nice to have somewhere to talk with people who just “get” it. And I really relate to these guys because they aren’t celebrities or athletes…they’re ordinary people living with diabetes, just like me.

What is the best advice you would give to a newly diagnosed person? 

I would tell them about the wonderful Diabetes Online Community. I would encourage them to create a Twitter account. Join in weekly support chats such as #OzDOC and #DSMA. They’re a great place to introduce yourself and make connections with other people with diabetes. Read diabetes blogs and take an interest in the diabetes world. There’s so much valuable information and support out there to gain. I really wish I had found the DOC a lot sooner than I did.

Has there been a moment in your life when you were grateful for having diabetes?

I don’t know if I would ever say I’m grateful for having diabetes, but I’m grateful for the opportunities that have come from it. I am finally living my dream of being a successful writer every day through my blog thanks to diabetes. I was really proud to be able to advocate for access to test strips in Australia through my column for Insulin Nation. It even resulted in a small policy change from Diabetes Australia. I also feel really fulfilled to have a purpose and passion beyond my day job.

Read more articles from Frank by following his blog Type 1 Writes and keep up to date on twitter @FrankSita. You can also learn more about Frank by liking his Facebook page!  

Joe: Joining the Diabetes Community

When were you diagnosed and with what type of diabetes?

“I was diagnosed in 1999 with Type 1 Diabetes.”

Has there been a moment in your life when you were grateful for having diabetes?

“There’s never been a single moment where I’ve thought ‘Thank God, I’m diabetic,’ but I think having the disease has made a huge, and mostly positive difference to my life. For example, I think it was thanks to the discipline I had to develop when managing my glucose that helped me work hard and get in to Oxford University. And I’m pretty certain that if I wasn’t diabetic I wouldn’t have run the London Marathon, having to marshal the disease as well as condition my body gave me the extra motivation to even begin training. I wanted to prove to myself that diabetes wasn’t going to stand in my way.”

Have you done anything to benefit the diabetes community?

“When I was 18 I wrote “Joe’s Rough Guide to Diabetes” to help people learn how to take control of their glucose while living a normal life. It was published by Wiley and 20,000 copies were bought and distributed by Sanofi. Since then I’ve re-written the book for a second edition, and designed “Joe’s Small-in-one”, a carry case designed to take all you need for 24 hours. Together, these products mean that you can learn how to manage your diabetes and very conveniently put that knowledge into practice.

I give talks about diabetes to lay and professional audiences, telling people what it’s like to live with a long-term condition, myth-busting and helping to improve the relationship between healthcare providers and their patients.

I chair the project management group of a joint King’s College, London – Warwick Medical School study looking at the impact of digital communication on the treatment of long-term conditions in the NHS. And I encourage all diabetics to get involved with research if they can – it’s a fantastic feeling to be helping to shape the discussion of what future healthcare should look like.

I am also now working with Sanofi to create an innovative patient event for World Diabetes Day. It will be the first of its kind in the UK, bringing together people with both types of diabetes to talk about the issues that really matter to us.”

Does diabetes define who you are?

“In some ways, it does, yes. It’s impossible to be involved in trying to improve the treatment of the disease without being defined by it in some way. On a deeper level, I think it defines me in that the major achievement of my teenage years was learning to take control of my diabetes and overcoming the stigma of disability I felt upon diagnosis. But there’s definitely more to my life than just diabetes. I’m lucky enough to be in a loving relationship, I have great family and friends, I have a penchant for bad jokes, I laugh loudly and (I’m told) I talk a lot. On top of that, I’m writing a Tudor novel! Of course, all those things will be tinged with diabetes if you think enough about them, but mostly I think of myself as ‘Joe’, not ‘Joe the diabetic’.”

What is the best advice you would give to a newly diagnosed person? 

“I think the fundamental thing if you’re newly diagnosed, is to take responsibility for your diabetes. It’s a nasty shock and it’s hard to take sometimes that you’ve lost a bit of your freedom. I know I found it difficult. But once you have the mind-set that says ‘this is my problem and I am going to find a way to solve it’ everything flows from there. After that, look to get educated, learn to carb count, and discover how exercise and alcohol and illness effect you. Don’t be afraid to experiment, one high blood sugar may feel a bit horrible but if you learn from it, it can give you a lifetime of understanding and improved control.

Oh, and get on a pump! They don’t work out for everyone, but mine’s been a blessing. It restores almost all the feeling of independence you can lose on diagnosis. And it doesn’t feel weird, honest!”

What is your greatest accomplishment? 

“There are a few things I’ve done that I’m proud of: getting in to Oxford, getting a Distinction in my first year (I’m a geek, sorry!), writing the book and then having it published, giving a talk to about a thousand people at the Diabetes UK Professional Conference, designing the Small-in-one and seeing it sell, appearing in the Times to give an interview about diabetes, running the London Marathon, and (fingers crossed) writing a novel before 30. But I think my greatest accomplishment has been much less obvious than any of those; overcoming the depression I felt after diagnosis and taking control of my life. Without that, none of the other achievements would have been possible.”

Thank you Joe for sharing your story. Learn more about Joe, his book, and any of his adventures by following his twitter @joesdiabetes. You can also purchase the small-in-one by clicking here! 

Michael: “Data save lives and limbs”

When were you diagnosed and with what type of diabetes? 

2002, diabetes mellitus type 2

What are your greatest daily struggles?

I was diagnosed at age 52. A conventional analysis would say I had developed sedentary and overeating habits in childhood that drove the expression of a genetic predisposition to T2DM. An alternative analysis would suggest that undiagnosed childhood insulin resistance and neuropathy drove the development of those habits, and precipitated a vicious cycle. In either case, I have half a century’s habits that make me “more diabetic” unless I counter them with more-than-habitual activity and more strategic eating. For me, glucose data are a much better motivator of this discipline than are weight or even belt-notch data—which brings us to the struggle to obtain adequate testing supplies in the face of a government-insurance establishment that rations them to essentially useless levels. And by the way, when I manage glucose levels, the weight and waist-size numbers fall with them.

Have you found any good things about having diabetes?

I’m healthier now than when I was diagnosed. Had I continued along the behavioral path I was on before diagnosis, I might well be dead by now. Also, the research I started reading and evaluating to save my life contributed to my current career as a clinical research editor and interpreter.

What is the best advice you would give a newly diagnosed person? 

Data save lives and limbs. Learn how diet and exercise affect your glucose levels, and develop habits that nurture good levels. Nag, beg, wheedle, plead, demand, and save your pennies for adequate testing supplies to manage your condition. Accept additional medical help if your particular diabetes cannot be managed with diet and activity alone.

Does diabetes define who you are?

No.  It’s defined certain choices and possibilities in my life. That includes both limitations and opportunities.

Thank you Michael for the brave and inspirational responses. To learn more about Michael and keep up to date on his battle with diabetes follow his blog diabetes2remission.blogspot.com! You can also follow him on twitter for daily updates @T2DRemission. 

Caitlin: Teen Diabetes

When were you diagnosed and with what type of diabetes?

I was diagnosed when I was 7 years old on November 13, 2004 with type one diabetes

Does diabetes define who you are?

Diabetes defiantly plays a big part of how I am but does not define me. Diabetes helps me view things differently than other people

How has diabetes affected your high school experience?

Honestly diabetes hasn’t affected my high school experience. Of course I’ve had to sit out for a little bit participating in activities while I chug back a juice box or two, but other than that it hasn’t really affected me. Although all my friends love that I had juice boxes in my locker always

Why did you start blogging?

I started blogging because in my small city of Sault Ste Marie Ontario,Canada there was not any type one diabetics in my age group,let alone many type one diabetics, so I decided to turn to the internet and got loads of positive feedback.

How has getting involved in the diabetic community helped you deal with your diagnosis?

It has helped me know that I am not the only one that struggles with being a diabetic. People see you as a healthy person, then you tell them that you are diabetic they automatically assume type two; that you just have to watch what you eat and take your blood sugar. When in reality it taking your sugar at least 3 times daily, eating, taking care of lows and highs, being tired, waking up through the night to check your sugar. There is a lot to diabetes that doesn’t meet the eye

What is the best advice you would give to a newly diagnosed person?

I would tell them “Relax. Your life is not over. It will be tricky at the beginning but eventually it will work itself out. I’ve been diabetic for 11 years and I’m learning new things each day and I still struggle.

Keep up with new stories about Caitlin by following her blog. You can also get to know Caitlin better by liking her Facebook, twitter, and Instagram!

Kris: Type 1 Is Not Going To Hold Me Back

1. When were you diagnosed and with what type of diabetes?

I was diagnosed with type 1 diabetes later than most at 25 years old in 2012. So I’m still quite new, however it already feels like a lifetime!

2. Has there been a moment in your life when you were grateful for having diabetes?

My diagnosis was devastating at first but it led to a new career that I love, living in a new city that I love, where I met my girlfriend who I love! I’m a strong believer in things happen for a reason and something good always comes from something bad in life. I’m happier with life post-diagnosis, even though I need to live with this disease for the rest of my life.

3. Why did you start blogging? 

I started blogging fresh out of hospital as I’ve always found writing a therapeutic way to get things out. I have also been fortunate enough to take part in a few research projects that were really interesting and fun to take part in so wanted to tell the world and spread awareness of taking part in research.

Online diabetes communities are huge and very active, especially on social media. I get a lot of comfort and support from people in the same position as me, but they can be anywhere in the world.

4. Has diabetes affected your ability to exercise? 

For the first year, exercise was avoided. It was just too much to deal with on top on everything else, plus my job at the time was extremely active so that keep the blood pumping.

In 2014 I climbed Kilimanjaro, which involved lots of training. Preparing for this challenge opened my eyes to the power of exercise to manage your levels. I’d always thought exercise would make things more complicated but over the long term it stabilises the fluctuations, mostly.

Occasionally, when I want to exercise and my diabetes isn’t behaving, it stops me but this is rare and is not an excuse to never exercise.

5. What is the best advice you would give to a newly diagnosed person? 

As much as this disease is a burden on your daily life and frustrating as hell, it’s a condition that can be managed. Your future is in your hands and not your doctors, unlike most other chronic conditions. You will become an expert at nutrition, maths and understanding your body. You will become more disciplined and organised. Type 1 turns ordinary people into super heroes.

My best advice is find others with type 1 and make an effort to connect with them from time to time. Type 1 can make you feel lonely so there’s nothing better for your outlook than using others in the same position to bounce off. Whether that’s online, your local hospital, charity support group or your school or work place.

6. What is your greatest accomplishment? 

I mentioned it earlier but my biggest achievement is climbing Kilimanjaro with type 1 diabetes. I never thought I could do something like this before I was diagnosed with type 1 but to do it with a condition that’s so demanding was a real achievement for me and built my confidence up a lot. Having the condition has made me more determined and I push harder with everything I do in life now. Climbing Kili hard, painful, frustrating at times, mentally and physically draining but by far the most rewarding things I’ve ever done. I showed myself that type 1 is not going to hold me back.

Continue reading about Kris’s adventures and challenges with type 1 diabetes by following his blog www.diabeticbanana.org or twitter @diabeticbanana.

Ashley: A Dietitian with Diabetes

When were you diagnosed and with what type of diabetes?

“My diagnosis is a long story. I was diagnosed with type 2 diabetes when I was 19, but was told from the start I didn’t fit neatly into the type 1 or type 2 categories. It didn’t matter at first until I was told about the insulin pump. I realized then that our government only subsidized insulin pump consumables for people with type 1 diabetes and gestational diabetes, I kept asking to be reclassified as a type 1 but was told I was in denial about my diabetes. Like what even? Eventually I found an endo who reclassified me based on a technicality that I am insulin deficient not resistant. So that was a major win. I’m currently looking into genetic testing to see if it’s MODY.”

Has diabetes ever affected your schooling or career?

“Diabetes hasn’t affected my schooling or career but it has definitely influenced it. Going through the health care system inspired me to get into diabetes education. I was diagnosed in my second year at university doing my undergraduate degree. I went on to explore research with an honours year, became a dietitian after my master’s degree and am now further pursuing research through a PhD in diabetes education for young adults.”

Why did you start blogging?

“I started blogging as way to de-stress and unwind. I like to write my thoughts and observations down. After becoming more involved in the diabetes community through volunteering, I started to write more about diabetes. Through there I found the Diabetes Online Community. I write to share my experiences of living with diabetes because it’s such an invisible thing to live with. Diabetes affects much more than blood glucose numbers and that’s important for people to understand.”

As a dietician have you mastered controlling highs and lows?

“Being a healthcare professional doesn’t exempt me from the rollercoaster that comes with diabetes. I still guess my carbs if I’m unsure of certain foods. I’m not perfect, I’m only human! And just because I’m a dietitian, doesn’t mean I survive on salads. It surprises people to know that I’m not a big fruit eater. It’s all about moderation.”

What is the best advice you would give to a newly diagnosed person? 

“Breathe. It’s not the end of the world. You can do this. You got this. And most importantly, you don’t have to get everything perfect. You are still allowed to make mistakes.”

What is your greatest accomplishment? 

“So many things on so many levels. Some days getting out of bed would be an achievement in itself. I guess doing developing my PhD topic and being able to work on it is one of my proudest achievements. I am extremely passionate in providing each person with diabetes appropriate education and resources to better cope with diabetes. I hope that my project will help to raise awareness of the different types of diabetes and integrate the type 1 and type 2 diabetes community as a whole a little bit better in terms of providing peer support.”

Read more by Ashley by following her blog bittersweetdiagnosis.com. You can also learn more about her on twitter @Health4Diabetes. If you are interested in guest blogging, contact us on twitter or read the contact info on the “About” page.