#IWishPeopleKnewThatDiabetes....

Some of you may have come across the Hashtag #IWishPeopleKnewThatDiabetes..... over the last year, which is the brainchild of Diabetesaliciouness blogger, Kelly Kunik.

I met the superwoman herself last July at the MasterLab Diabetes Advocates conference. On that first morning, as I took a deep breath and joined a table of strangers. I know, I'm a very grown-up woman but I still have to force strongly encourage myself to do these things because I know I'll regret it if I don't.

Anyway, I did not recognise anyone but as soon as the ladies started conversing and using their first names, I started to connect the "who" to the "blog" and figured out that the girl sitting right beside me was Kelly.

Kelly has lived with type 1 since she was 8 years old (that's 38 years), and comes from a long line of direct relatives with type 1 diabetes, including her sister who died in 1991 from complications at the age of 33. Kelly gave an indept interview in August to Diabetes Mine in which you can read lots more about her and why she does what she does.

The #IWishPeopleKnewThatDiabetes hashtag and the #IWishPeopleKnewThatDiabetes Day, (22nd April 2015), were inspired by 3rd grade teacher, Kyle Schwartz and her #Iwishmyteacherknewthat hashtag, which was heartbreaking.

Photo cortesy of DiabetesMine.com

Kelly says that "This day is about people living with diabetes taking to twitter and using the hashtag in unison for a 24 hours period to express the good, the bad and the diabetesalicious of it all."

The #hashtag and day took on a life of their own with over 16 countries participating and generating over 17 million twitter impressions to date.

The IWishPeopleKnewThatDiabetes hashtag has now become an initiative, a movement and a call to action where people can express themselves past the 140 character limit and in various multimedia formats. Kelly launched the "Iwishpeopleknewthatdiabetes.org" website last November. She (and I) encourages everybody to visit the website and submit your own "what you wished people knew about diabetes". You can also read some guest posts from rock stars in the Diabetes Community and some totally-not-a-rock-star-or-even-close people's guest posts (i.e. yours truly. I was so honoured that she asked!!!)

IWishPeopleKnewThatDiabetes.org is well worth a visit.

Diabetes Complications are Not a Sign of Failure

The complications of diabetes are real and people are living with them. People are also living in fear of them. Myself included. I am actively trying to overcome this fear because if I do end up with complications I don't want to feel like it is the end of my life. Or that I failed to manage my diabetes well enough. And I certainly don't want to be made to feel that it's my fault.

I don't believe just because I am doing everything in my power to manage my diabetes that I will be spared. I believe that if I have type 1 diabetes I still have the risk of developing complications. I strive to keep that percentage of risk low but it will never be zero.

I will not stop trying!

Image from http://www.coolnsmart.com/failure_quotes/

So, when a friend of mine, who has lived more than 50 years with type 1 diabetes and who lives with a number of the complications of diabetes, comes to our T1D meet ups and people imply she didn't take of herself, I get a little "upset"!

My friend has survived taking care of her diabetes when there was no such thing as a glucose meter! Imagine never know what your blood sugar was?!?

She has survived during a time when the phrase "carb counting" might as well have been a foreign language in Ireland. It didn't exist!

We also did not have Rapid Acting Insulins until the late 1990's. So, even if we did practice carb counting, it wouldn't have been much good to us. Sure, we could do a certain amount of carb counting on the insulins we took only twice a day but we couldn't fine tune it like we can today.

We also did not know that the tighter your diabetes control, the less likely you were to be at risk of getting diabetes complications. This research was only published in 1993 as the DCCT Trials.

93 years ago we died! Today, we have so many tools, technology and instant access to research that people with type 1 diabetes, who have been told for decades what they can't do are breaking all of those barriers.

So I ask you? Is surviving 50 years with type 1 diabetes and living with complications really not taking care of yourself?

My friends who live with diabetes complications may even say themselves, that they didn't do as much as they should have to take care of their diabetes. And I say you did the very best that you, and everybody else, knew how.

I am so lucky and proud to have friends like Deniabetic, who are helping me overcome my fears.

The Great "Sugar" Confusion

I thought I knew a lot about food and in particular carbohydrates and sugar. However, I attended a diabetes support group recently that sent my head spinning in confusion.  You see, I always thought that the word "carbohydrate" referred to the group of foods that have the most influence on blood sugars and that "sugary" foods would be part of that group. So when a gentleman remarked that white bread was full of sugar my head slowly exploded.

Inside my head I was asking so many questions; - do you mean sugar as in table sugar and that it's an ingredient of bread? - or do you mean in comparison to wheat/brown bread? - are you talking about carbohydrate and not sugar? - are people confusing those two words? - when dietitians talk about sugar; are they talking about sugary foods, table sugar or a subgroup of carbohydrates?

I started second guessing my knowledge and I couldn't respond to the comment which was then followed with other remarks about other foods, such as bananas that are also full of "sugar". Help! But of course none of us had the knowledge to sort all of this confusion out.

So off I went to Google university to try and figure out my confusion and find out once and for all what the word "sugar" actually means. I'm still not very wise but my opinion is that the word is being used in all sorts of contexts and that most of the other general public are confused too.

There's sugar as in table sugar, complex sugar or carb which is a type of carb (obviously) and the other one which is simple sugar/carb, sugars as in my blood sugars.

We have invited a dietitian to our next support group meeting and I think it's going to make for a very interesting evening and hopefully be enlightening.

Starter Kit; A Guide for Adults with Type 1 Diabetes

Starter Kit; A Guide for Adults with Type 1 Diabetes.

This is a little project I had been working on since 2010 and I'm thrilled to announce that it's finally HERE! I came across the Starter Kit on an Australian website and thought it was a very valuable and informative document. I showed it to a few of my friends with type 1 who agreed. At this point I realised that there was a lack of educational booklets for people with type 1 diabetes living in Ireland. So I approached Diabetes Ireland, the only organisation for people with diabetes in Ireland and they encouraged me to undertake the project as they have limited resources.

 

I believed that the book would make a big difference to supporting people with type 1 diabetes and I delved in.

 

I, with the help of many Irish health professionals, especially Dr. Anna Clarke, Diabetes Ireland adapted this book from its original format, which was written by the Type 1 Diabetes Network; a group of young adults with type 1 diabetes in Australia. We sincerely thank them for giving their permission to adapt it for Ireland.

 

The Starter Kit is for newly diagnosed adults and contains lots of useful information on how to adjust to life as a person with diabetes, such as a “checklist of stuff to do within the first month after diagnosis” and “10 things we wish someone told us the day we were diagnosed”.

 

Established adults with type 1 diabetes and adolescents who have recently transitioned into the adult world of diabetes will find the Starter Kit useful too.  It includes information about where to find peer support, recommendations for books and websites, and links to all public resources available to a person with diabetes.

 

Everybody will appreciate the Cheat Sheet: this is a two-sided page of information aimed at those without type 1 diabetes.  It is there for you to copy and share with your family and friends and can help you get on with living your life rather than feeling compelled to be the “font of all diabetes knowledge.”

 

I hope that this book will help guide you on the right path to managing your diabetes successfully and open a world of support to you.

 

The Starter Kit is available to download from Diabetes Ireland’s website, however, you can get yourself a hard copy of this book also by contacting them on LoCall 1850 909 909 or by emailing your request to info@diabetes.ie

Diabetes and Pregnancy

This season of RTE’s OperationTransformation  has been focusing on type 2 diabetes in a big way. This is my first time to watch Operation Transformation and I find it a very interesting programme though not why you would think.

I was extremely interested in the piece about how unfit our school aged teenagers are, especially the girls. That was eye opening but when I thought about it not surprising.

However, it’s the feature on Petrice, which aired on Wednesday, 8th February, that inspired be to write this blog entry. Petrice was overweight and always figured that when she decided to start a family she would get in shape first. However, the best laid plans….. And got pregnant un-expectantly. During her pregnancy she developed gestational diabetes.

I have type 1 diabetes and had it before I started my family. My diabetes played a huge factor in deciding if I was going to have a family and really made me focus on what I had to do to prepare my body for developing a healthy baby. I had 10 years to learn as much as I could about diabetes before I started my family – imagine finding out all the scary things about diabetes and pregnancy after the fact! I felt for Petrice and how she was trying to cope with having diabetes and then think about how it was affecting her baby.

I started to think back to how I felt during both of my pregnancies. My first pregnancy went smoothly and resulted in a healthy baby (TG). It was really hard work; constant testing of blood sugars, lots of doctor’s appointments, faxing in by blood glucose diary weekly, accounting for every morsel of carbohydrate, feeding lows all the time and living in fear of the highs.

My second pregnancy happened just after our transatlantic move and my body was stressed, I was a little overweight and I had a two year old to take care of. I still put in all of the work and thankfully the result was another healthy (if not very large) baby (TG again).

Each time I was pregnant I had the same anxiety but tried to push it to the back of my mind and focus on nurturing a healthy baby. It’s amazing how this growing life makes you take better care of yourself and work twice as hard at managing your diabetes well without grumbling.

It’s like competing in a long distance race; you just want to get over the finish line. Your first question in the delivery room is not “Is it a boy or a girl?” but “Is everything where it should be and does s/he look healthy?”

Diabetes never lets you take a healthy baby for granted.

Horror Stories vs. Happy Endings

Media attention is a good way to create more awareness about diabetes in the general public. So when I learned that RTE 1 was airing a programme dedicated to the disease I thought “great!”

I quickly changed my mind when I read the programme synopsis in advance of viewing it. We were going to hear the stories of 3 people, one of whom had passed away since filming from diabetes complications, the second was visually impaired and had limb amputations and the third was only a couple of years diagnosed.

I thought to myself “it’s going to be grim and depressing” and decided I was going to be disappointed with the programme. I really didn’t want to watch other peoples’ misery and think that it could one day be me.

Now that I have watched it and heard all of the stories, I heard the message. To me it was loud and clear, “take care of your diabetes or else you will end up like those in the programme”.

I asked myself would I have heard that message from someone who seems to have good management of their diabetes, who didn’t have any of the long term complications, or was young, fit and vibrant?

I think the answer is no.

So, yes we would like to see more inspirational people with diabetes who have good stories to tell us but we also need reminders of what can happen if we choose to ignore our diabetes.