Explaining Type 1 Diabetes to Non Diabetics

I spend a lot of my time "hanging" and communicating with other people with diabetes. I realise that I'm very lucky to have that when I have come across so many people who have never met anyone else with diabetes.

So, when I find myself in a situation where I have to explain type 1 diabetes to someone who is not a member of that community, I actually find it extremely difficult. Even when I know it's coming!

Two such encounters have prompted me to try harder in this and I sat down to considered the following;
- when I want to share my diabetes story where is the best place to start (without turning it into a rambling, never-ending tale)?
- And, how do I connect with people who have no connection to diabetes? How do I explain it so that they ask me good questions?

Here is what I came up with! And I did decide to try to keep it simple and specific to my diabetes, which means I know a lot of you will have lots more to add to it. But this is my starting point.

What is type 1 diabetes?

Type 1 diabetes happened to me when my body, for no apparent reason, decided to destroy the part of me that makes insulin.

What the heck is insulin?

Everybody needs insulin to be able to turn the food they eat, namely carbohydrates, into energy. If I don't have insulin, I will die of malnutrition, even though I eat.

Type 1 diabetes is kindof like an allergy to carbohydrate. I cannot eat carbs without taking insulin. And if I don't take insulin, what the carbs become once I have digested them, the sugar/glucose builds up in my blood and starts to do bad things to my organs.

What if, every time you ate any of these foods you had stick a needle into yourself?

If I just didn't eat carbohydrate would that not make life easier?

A person without diabetes might respond to this with "What if you just didn't eat carbohydrate would that not make life easier?"

Not really, our liver, also, releases glucose and we can't turn that into fuel either. So, we actually have to take insulin to deal with that sugar/glucose that is being continuously released in the background.

So either way, we need to inject/infuse insulin or we die.

What if you just measure how many carbs you are eating against how much insulin you are taking?

One of the ways people manage their with type 1 diabetes is to measure how much insulin they take and measure how much carbohydrate they eat.

This is where I know I am going to lose you.

Type 1 diabetes is more complex than that. There are other factors that influence blood sugar/glucose (BS). Sure;

• Food brings BS up, but all foods raise BS differently. 
• Insulin brings it down.
• ANY physical activity has the potential to bring it up or down.

But there are things that influence BS that are not easy to measure.

• Hormones such as adrenaline, the stress hormone cortisol, menstrual hormones can raise or lower your BS. 
• Illness raises BS.

These are just a few, here's a list of 22 other factors that commonly influence BS.

Living with type 1 diabetes is tracking all of this and more. It's exhausting!

So all I need now is a guinea pig volunteer to try it out on? Oh and here's some more helpful tips to help explain type 1 diabetes to people.

The HbA1c and how does it fit into Diabetes Management.

Our HbA1c is just one piece of information in the picture of our diabetes management.

It is really important to our healthcare providers because that's how they measure how well THEY are doing in keeping people with diabetes healthy. It's a global measurement and so they can use it to compare their service to services in other countries.

For us, the individual with diabetes, it really doesn't have that much value. You might feel differently but for me, it's just another number, one of many that I use to manage my type 1 diabetes.

I have had a good HbA1c for a number of years now. But there was a period of time a couple of years ago when I had an excellent HbA1c of 48 mmol/mol (6.5% NGSP unit). However, both myself and my endo were confused because my blood glucose readings told a very different story. They were ALL OVER THE SHOP!!! Not one of my BG readings was within any of my targets!

They were so bad that while my meter was counting down from 5, I would close my eyes tight, cross my fingers and hope for a single digit, as in less than 10
mmols.

We figured out that I was having more than the occasional hypo during the night and not waking up (Flipping scary). These lows were offsetting the highs during the day, making my HbA1c appear excellent.

These days, I look up my average blood glucose reading over 30 and 90 days on my meter. Plus, I look at my "standard deviation". The Standard Deviation SD is a measure of how spread out my numbers are and it's measured in a percentage. 

"Say your average blood glucose reading is made up from a 13.9mmol (250mg/dl) and a 2.8mmol (50mg/dl) giving you an average of 8.3mmol (150mg/dl). The 8.3mmol (150mg/dl) average is not bad, but the 2.8mmol (50mg/dl) is too low and the 13.9mmol (250mg/dl) is too high. So if you only look at the average, you might think you are doing well, when in fact you are not doing so well.Source; Diabetes Daily

The SD from the example above is +/-7 which is quite a spread.

Ultimately, I want to smooth out the peaks and troughs of my blood sugars and that's why I would like my average blood glucose reading to be between 8 and 9 mmols and my standard deviation to be a small as possible.

I was always tempted to brag a little about having reasonable HbA1c results. But once I learned about SD it removed all temptation.

Diabetes Interruptus

Let me count the ways that diabetes interrupt my life.

Wednesday evening I attended a business women's network event. I know I eventually have to leave my career of stay at home mother because, well, they grow up, don't they! So I'm trying to get my head around the fact that I NEED to go back to work in the next year or two!!!

Anyway, half way through this event we had a much valued break where we could, you know, network. We had moved around the room and I had left my bag at another table. Once I assessed that the finger food was worthy of insulin and filled my plate, a very nice lady started a conversation as I was filling my cup with tea. I had to excuse myself to return to my bag because I needed to test my blood sugars and work out a SWAG (Scientific, Wild Assed Guess Bolus).

When I'd finished she was surrounded by 4 others ladies, clearly, she was a person that I would have liked the opportunity to talk to. But the opportunity was lost because of my diabetes.

Thursday evening, I over estimated my carb count at dinner and about one hour after dinner I began to descend into a low when my phone rang. I didn't recognise the number but I still had a hard time deciding that I should not answer it and deal with my hypo instead.

Turns out it was the Mum of one of my children's new friends wanting to arrange a play date. I didn't get to call her back for a couple of days.

I try to make sure that diabetes doesn't interrupt our family life or my life by planning ahead as much as possible.

But sometimes, it just doesn't work.

The Big Blue Test for World Diabetes Day

This year, for World Diabetes Day, I am piggy backing on someone else's idea and taking part in the Big Blue Test. Why?

Because it's simple, it's easy, it doesn't cost me anything to participate, and it's giving to those who don't have access to insulin. Hell, it's just a good idea and I'm hoping that some of you will think so too and join me?

What is the Big Blue Test BBT?

The Big Blue Test is a diabetes awareness initiative that was started 7 years ago by an American non-profit organisation, called the Diabetes Hands Foundation (amazing organization worthy of another post). The BBT is about how one small change can have a huge impact on your health; if you have diabetes or not.

And every BBT logged raises money for those with diabetes who are less fortunate than us.

Results gathered over the lifetime of the program demonstrate that just 14 minutes of exercise has the potential to decrease participants’ blood glucose levels, in some instances as much as 20% (Type 1's should pack a Snickers;-D).

Not only is The Big Blue Test encouraging people who don't have diabetes to exercise and creating awareness about diabetes, but it's creating awareness in our own community about how effective even a little bit of exercise is as a diabetes management tool.

And, by participating in the Big Blue Test, we get to help people living with diabetes who are in need with grants for life-saving diabetes supplies, treatments and patient education, usually in developing countries.

How do I take the test?

Taking the Big Blue Test is easy:

1. If you have diabetes you test their blood sugar, if you don't have diabetes, don't check your blood sugar.
2. You exercise for at least 14-20 minutes.
3. You test again (if you have diabetes), and
4. You share their experience on BigBlueTest.org or through the app for iPhone or Android.

Log in, take the test. Do a little good today for yourself – and someone else.

From Diabetes Mine

What happens after MasterLab Advocacy Conference?

What happened after I attended the Diabetes Hands Foundation's MasterLab advocacy conference?

And thank you to Christelle Aprigliano from MyPerfectD, who inspired me to write this post in gratitude for being chosen as a scholarship winner to attend MasterLab last July.

The timing of which is significant because we just had our very first Thriveabetes conference in Ireland.

Before I go into what happened after MasterLab, let me first explain where I was before I attended.

I had an idea, that we, in Ireland, were entitled to experience the type of conference that people with diabetes in the UK and the US we're enjoying. A peer support conference. Turns out some other people had that same idea too. So, we came up with a plan, raised some money and were busy executing that plan to make Thriveabetes happen. And everything was going to plan.

However, until MasterLab I was wandering around aimlessly on the diabetes advocacy path. I really didn't know what I was doing or how to verbalise what I wanted to do.

On the very first morning of ML, we did the all-important ice breaker and introductions. I took a deep breath and tried to figure out why I was there in my head before it was my turn.

I introduced myself with "Hello, I'm Grainne, I'm from....", followed by my volunteer bit and then, added that really, the main reason I was there was to learn if I could organise Thriveabetes better. The response I got was that I should lead with the bit I ended with:-S Lesson #1 learned.

From that moment on, I was one of the organisers of Thriveabetes and I realised that every moment since 2007, when I helped set up our local diabetes support group, was leading up to this.

Every time I introduced myself I did it a little bit better and with more confidence. Without meaning to, I networked! But for me, it was an opportunity to meet the most interesting people and hear their diabetes stories; networking never seemed so easy! I had more Facebook friend requests in that week, than I had since I set up my Facebook profile.

At ML, I realised that I had found a path I wanted to travel, that I had been on that path; rambling unintentionally, for a long time. I found focus and I found my purpose.

Little did I know that in 2007 when I was at my lowest. I had been struggling to find decent diabetes healthcare for 18 months and I had just had a clinic visit where I sat in a Digital Chair Weighing Scales, used in nursing homes, retirement homes and rehabilitation centres.

I was desperate to find decent health care and I was desperate to find other people with type 1 diabetes to share with. That's when I set about starting our support group.

At the Thriveabetes Conference, we found that sense of community, of strength. We have found a way to connect with each other and a way to help each other.

Today, we are planning Thriveabetes 2016!

Would you like to volunteer abroad and help people with diabetes?

I came across this group at a diabetes conference and not only do they have an interesting story but they also offer people with diabetes an interesting opportunity to volunteer abroad with people with diabetes.

I've checked with the organisation and they have said that you do not need to be living in the US to volunteer and in the past people from Ireland have volunteered with them. :-)

They are called AYUDA; American Youth Understanding Diabetes Abroad. The organisation was created in 1996, by two teenagers, Nick Cuttriss and his friend Jesse Fuchs-Simon. They were 14, when they met José Gabriel, an eight year old boy who lived in Quito, Ecuador.

José Gabriel, was six-months-old when he was diagnosed with type 1 diabetes in 1984. Eight years later, despite spending most of the family's income on his diabetes supplies, José's parents saw his health decline again. In an effort to understand what had gone wrong, José's family raised money for him to travel to see a diabetes specialist.

They discovered José and his parents had never received guidance regarding the management of the boy's condition and that José's blood sugar levels were not being managed correctly. For José and his parents, and for many other young people with diabetes, particularly in developing countries, the lack of diabetes education is as dangerous as a lack of insulin.

Nick and Jesse envisioned a youth-led organization that would educate young people with diabetes about diabetes issues, and help empower them to work effectively for positive change.

AYUDA's initial objective was to help with the need for basic diabetes education in Ecuador.Volunteers set up diabetes support groups in the corridors of a public hospital in Quito. These groups offered educational workshops and provided a forum for knowledge sharing. 

Since 1996, they have also recognised that the cost of diabetes supplies was making it impossible for many children in developing countries to manage their condition optimally and so they set about creating and managing diabetes supply banks. It costs approximately 3000 USD per year to care for a child with diabetes; the average income for a family of four in many Latin American countries is less than 1000 USD per year.

With the help of partners such as Insulin for Life, AYUDA works to ensure that families with limited resources receive essential daily supplies, such as insulin, syringes, and test strips at subsidized prices or free of charge. 

For more information on AYUDA and volunteering opportunities, visit the website at www.ayudainc.net or email info@ayudainc.net. They are now accepting applications for their 2016 projects in the Dominican Republic.