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. 

Rob: “Diabetes Gave Me Drive and Made Life’s Rewards Sweeter”

This week we got to interview Rob, writer of Diabetic Dad Runs for our Humans of Diabetes blog. Be inspired by reading Rob’s thoughts below! 

HoD: When were you diagnosed and with what type of diabetes?

DDR: I was diagnosed with type-one diabetes in January 1991, aged 12. I’d spent weeks with a raging thirst and constant need to pee. I had a few days in hospital being monitored and trying to get my head around the news I’d need daily injections for the rest of my life. Then I was packed off home with a box of syringes, phials of insulin and a glucose monitor. I was told I’d still be able to live a normal life, even with diabetes. I took ‘normal’ to mean ordinary. And, like most 12-year-olds, I didn’t want an ordinary life; I wanted it to be extraordinary.

 HoD: How did your diagnosis affect you?

DDR: I buried my head in the sand. I spent my teens and early 20s generally doings things that are no good for anyone, let alone a diabetic. I shunned my parents’ efforts for me to meet other diabetics (no one in my family has diabetes). I ignored diabetes; I rarely tested my blood and ate what I wanted.  When I was 20, I travelled in Africa for two months and didn’t even pack my glucose monitor. Unsurprisingly, this lifestyle led to no end of highs and lows. It was dangerous and irresponsible. I shudder to think how much damage I did to my body and worry I caused my loved ones.

 HoD: How does diabetes affect your ability to exercise?  

DDR: I wish I could say it has no impact, but that wouldn’t be true. In my late 20s I quit smoking and began taking my diabetes and general health more seriously. I began going to the gym and running. At 30, I completed my first (and so far only) marathon, testing my blood and refuelling on carbs on the go. The training process involved a few hypos and a lot of trial and error in terms of sugar control, but it taught me how to manage my diabetes more effectively.

A few years ago I started doing Crossfit, which involved keeping a really close eye on sugar levels and food and insulin intake on training days. I became fitter than I’d ever been. Then injury struck: frozen shoulder, a condition diabetics are far more likely to develop than non-diabetics, probably because of an imbalance in the proteins the body needs to break down scar tissue in joints. The injury wasn’t necessarily caused by diabetes, but my recovery has been delayed by it.

I expect to return to Crossfit in the next few months, after nearly two years of recovery. During this time (apart from a six-month hiatus when the pain in my shoulder got too bad), I’ve run to keep fit (and sane). After reading about the inspirational Roddy Riddle (a truly incredible type-one) I hatched a plan: to run the Marathon des Sables, a 150-mile, six-day race across the Sahara Desert in 2018. My blog, Diabetic Dad Runs, is the story of my preparation for this race.

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

DDR: My initial answer was a resounding no. The ceaseless injections and blood tests, the threat of hypos and the trail of test strips I seem to leave behind me everywhere I go get me down. But then I thought about it a while. In recent years diabetes has given me the drive to push myself and get fit. Now it’s pushing me to attempt something extraordinary (if a bit nuts). I’m not sure if I would have that drive if I wasn’t diabetic.

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

DDR: Avoid carbohydrates. When I was diagnosed the advice was to eat plenty of carbs to maintain sugar levels and avoid hypos. Eating too many carbs as a diabetic is like sitting on a seesaw with an overweight child: every meal sends sugar levels soaring skyward; hefty insulin doses bring them crashing back down to earth again. And so you’re always lurching from peak and trough. Since I began a low carb diet a few years ago, my insulin dose has fallen by two thirds; hypos and highs are fewer and farther between.

The nurse who told me diabetes wouldn’t stop me from living a normal life was right. Diabetes has caused a few problems along the way (for example, the impact of fluctuating blood sugar levels on mood should not be underestimated) but it hasn’t stopped me from doing anything. If you want to do something extraordinary, diabetes shouldn’t stop you. You might have to work harder than others would to achieve your goal, but that will make the rewards even sweeter.

Follow the Diabetic Dad Runs blog by clicking here; DDR is also on Facebook, Twitter and Instagram. Get in touch if you would like to share any thoughts on diabetes, nutrition, exercise or anything else! 

Jakob: Pursuing Dreams Despite Diabetes

When were you diagnosed and with what type of diabetes?

When I was 16 years old I got diagnosed with Type 1 Diabetes.

Has diabetes effected your schooling or career?

First, it has effected me negatively. I did not want to realize that this is a serious disease I constantly have to take care of. That’s why I did not do much sports, did not check my blood sugar regularly etc.

However, I still finished High School with good grades and I went to university afterwards. I studied Business Informatics and I also went on an Exchange Year in Sweden. When I was in Sweden I realized that I have to accept Diabetes as a part of my life. Only then, I can use my Diabetes to become the person I wanted to be. Generally speaking, I can only recommend everybody to spend at least a few month abroad in a different country or (even better) in a different continent. It is very mind opening and you will come home with a complete different view on life.

However, when I started to accept Diabetes as a part of my life, I also started to realize that Diabetes actually helps you in many fields. It can help you to be more organized, more disciplined etc.

After Sweden, I went back to Austria and started to work on my own start-up QGo. Right now, I am working hard to get QGo successful and in my free-time I also work on my blog www.diabetesandbusiness.com

So far, I am doing well and I don’t think that Diabetes is effecting my career. In contrast, I believe that Diabetes can help me to become an extraordinary person.

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

That is hard to say if there is a moment when you are grateful to have a disease. I would say that there is no moment where I was happy to have Diabetes, but I am never really sad that I have it. I try to see it as an opportunity to make something great out of it! 

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

My advice is to always stay positive and optimistic. Even if you get diagnosed with a life-long disease, current treatments allow you to live an almost normal life. Moreover, if you stay positive and optimistic, you will still be able to achieve everything you want to achieve. There is always something you can be happy about!

What is your greatest accomplishment? 

My greatest accomplishment is a pitch in the national TV Show of Austria: 2 minutes, 2 million where I could successfully pitch my startup in front of investors.

Check out the link! http://www.puls4.com/video/2-minuten-2-millionen/play/2737425

Learn more about how Jakob has conquered his diabetes and created a remarkable business , QGo, by following his blog Diabetes Business. You can also follow him on twitter at  @DT1andBusiness.