Thriveabetes; What is it? Why do I need it?

My children have been back to school for almost two full weeks now and since their first day back I've been spending a couple of hours most days planning Thriveabetes 2018. A month ago, at our fundraiser, I was asked to explain what Thriveabetes is, why people with diabetes need it and why I was asking people to give money to it.

After my nerve wrecking speech, several people commented on how they had no idea that living with diabetes was so involved and required so much work. Why I keep forgetting this when I talk about my diabetes I'll never know!

This post is to explain to people who don't have diabetes, what living with type 1 diabetes is actually like, to explain what our conference does for people with diabetes, why I'm passionate about it and why I need it.

Here's what I said;

What is Thriveabetes? And why do people with diabetes need it?

To answer these questions I have to, first, take you on a little journey. My journey.

I was diagnosed with type 1 diabetes 24 years ago as a young adult and It changed my entire life. I'd like to be able to say that living with type 1 becomes easier but it doesn't - it becomes habit.

I woke up this morning, a little groggy because my glucose alarm went off during the night telling that my levels were a little high. So I got up, checked them on my meter, worked out a correction dose of insulin, took it and went back to sleep.

Before breakfast, I checked my levels again; they were in target, so I took my insulin for my regular weekend breakfast of tea and toast also known as 40g of carbs and then ate it.

Two hours later with kids and car packed to travel across Ireland, I checked my levels again to see how close I came to getting it right. The answer was; not in target range, but close enough.

As I visited with my mother and family, I wondered what lunch was going to involve and when it was likely happen. It ended up being a sandwich at a Spar. I checked my glucose levels again. They were a little above my target, so I had to work out a correction dose of insulin plus working out an educated guess of how many grams of carbs were in this particular sandwich. Then I eat. My day, as with all other days, continued like this.

I do all of this out of habit. The numbers are very seldom perfect. But I get on with "close enough".

Now imagine, that the person with diabetes isn't you, but your child. So on top of all of those daily diabetes tasks that I do, you now have the added worry of “if I don't do this “close enough” my child is going to get sick. Again!”.

This kind of anxiety and stress goes on 24 hours a day, 7 days a week, etc. Diabetes NEVER takes time off. Ever.

This is why Thriveabetes is needed!

Thriveabetes is a place where you can relieve some of that stress and anxiety. The power and comfort of being in a room with so many people with diabetes, learning so much about managing daily life with it and knowing that every single person in that room knows diabetes like I do, lightens that load. There is no other place where we can get that.

It's a day that is organised completely by us; people with type 1 diabetes. We are all volunteers who are dedicated to and passionate about bring people with type 1 diabetes together to share what we deal with every day and to learn from world class speakers.

And that is Thriveabetes. And that is why I need it!

Social Media & Information Blindness

I'm beginning to feel like I am becoming blind to information if it's not being blasted at me on social media. If it's not a flashy click bait image. And I think it's making my brain die slowly.

Last week, my husband told me, (and I heard him tell me!!!, not the nod and yes response), that our broccoli in the garden was ready for picking and we shouldn't buy any for a number of weeks. Shortly after being told this, like an hour, I was doing the shopping and saw that broccoli was half price. What a bargain, I thought and bought it. What happened to my brain? Where did that piece of information go??

Is it that I'm so used to having instant information and that information is so easy to retrieve at any time on any device that my brain has forgotten how to retain information?

Ireland in the 80's it was so easy to inform people and be informed. We only had two tv channels (rural Ireland that is - No Sky channel for us), two national radio stations and maybe one weekly local newspaper, we did have a couple of daily national broadsheets too. this meant was it was extremely difficult to be unaware of anything newsworthy and if you needed to get a public information message to the people the telly and radio were both sure things.

These days though it’s extremely difficult to reach out to people with information. Unless, of course, you spend a large fortune in advertising and then there are still people who are unreachable.

When something changes in the diabetes health service how do we let people know?

In the last few years there have been at least three major changes that affect people with diabetes in Ireland. This is just off the top of my head.

1. In 2014, the HSE rule which prevented people with diabetes from holding both a medical card and a Long Term Illness book was changed to allow it. This meant that thousands of people with diabetes had to be informed that they now needed to apply for the LTI and should not be paying a prescription charge for the diabetes supplies and medications. I’m still coming across people in the diabetes online community who haven’t been informed of this!!!
2. In April 2016, Restrictions were placed on blood glucose meter test strips for people who do NOT use insulin. See here.
3. Most recently, April 2017, the change in the sugar content of Lucozade in both UK and Ireland. Every diabetes organisation and group carried this news and it even made it into mainstream media in both countries. There were posters in diabetes clinics (however, we are all looking down at our phones) all over the country. And there are still people who have not received this information, even though they are actively engaging in social media for their diabetes information. There are also people living in this world who even if you put the information right under their noses they still won't see it. And given my broccoli evidence above this could be me!?! Aaaahhh!

This makes me hugely worried for the all of those people with diabetes who do not engage online for diabetes information. We tend to forget that a very large portion of the diabetes community is not engaged online at all. We can't rely on the diabetes medical teams to reach every single person who attends their clinics with new information - it's just not feasible or even possible. Someone will always slip through.

I think this is why offline diabetes peer support can play a huge role. We can help make sure noone falls through!

Volunteering helped me find my Vocation

May 15 to 21 is National Volunteering Week. The focus of this year's campaign is to showcase the benefits that volunteering can have on a person's health and wellbeing. Volunteers often say that while people think that volunteers are helping them, it's often them who help the volunteers.I’ve been volunteering for 10 years! And the most important thing I have learned from volunteering is that it’s more than just the reward for doing good; the benefits, for me have been tenfold.

Volunteering has enabled me to create a local diabetes support community when I desperately needed it, it has helped me become an empowered person with diabetes and fostered a diabetes advocate. This has lead to numerous volunteering opportunities which allowed me to grow and develop as a person. And ultimately find my calling! But I could not have done any of that without the help of training from my local volunteer centre in Clare (Dolores & Sharon) and Diabetes Ireland.

A LITTLE BACKGROUND I was diagnosed with Type 1 diabetes when I was 20 years old. It’s a lifelong chronic condition where the food I eat does not become nourishment for my body. If I did not take insulin through my insulin pump I would die of malnutrition.

Type 1 diabetes didn’t stop me from doing anything in my life but, until I met my husband, living with diabetes was very lonely and I felt very isolated.

Living with type 1 diabetes requires a great deal of concentration and mental energy. It’s not just about taking insulin and healthy eating. It requires calculating the amount of that medication based on what my blood sugar is at that point, how much carbohydrate (yes, I weigh carbs) I am about to eat and how physically active I’m likely to be in the next 4 to 6 hours and more. It’s a lot of work.

In 2007, I had moved back to Ireland after a four year stint living in the US. I was thirty, a stay at home parent with two very small children and didn’t know very many people in my new town in my old country.

I was receiving support from my medical team but it just wasn’t enough for me. I needed to hear that “me too” response from peers.

Fostered the Peer Support Facilitator So with the help of the Clare branch of Diabetes Ireland we needed to get started Clare Diabetes Support and they have been growing from strength to strength for almost 10 years. We became a community that helped each other live with the daily challenges of living with diabetes through sharing our own experiences.

Enhanced the Graphic Designer In 2010, I came across the Australian Type 1 Diabetes Network’s version of the “Type 1 Diabetes Starter Kit; A Guide for Newly Diagnosed Adults” and I knew it was something that could be adapted easily for people with type 1 diabetes in Ireland. I approached Anna Clarke in Diabetes Ireland about it but the time and resources that would be involved they just didn’t have. So, when she told me to “Go for it!” I thought why not! I’m very proud of it and very grateful for Diabetes Ireland’s support. What I learned during the process of adapting this booklet what most of what I needed to organise a national type 1 diabetes conference called Thriveabetes.

During the time I was working on the Starter Kit, Diabetes Ireland decided to shorten their name from the Diabetes Federation of Ireland and they needed a new logo. As a graphic designer, they approached me to take on this task. I still have to remind myself wherever I see it that I helped do that. It’s kind of awesome!

Both of these volunteering opportunities earned me the 2012 Diabetes Ireland Volunteer of the Year Award.

Fostered the Blogger and Advocate I created my first blog post in May 2010 as a way to pass on the information I learned about local health services and as a way to connect with more people with diabetes. I tell people that I blogged from inside of a closet for many years because I didn’t have the confidence to say “I write a blog”. Until my volunteering lead me to receive a scholarship to attend an Advocacy MasterLab in Florida in July 2015. Yes! FLORIDA!!! And this was A-Mazing. I learned so much from this experience and six months later I came out of that closet and told people I actually write two blogs! The blogs have lead to me engaging more with social media and that in turn lead me to be nominated by Diabetes Ireland for the International Diabetes Federation’s Social Media Award for which I was shortlisted. http://www.idf.org/idf-europe-prizes

The IDF selected me as their representative to attend the Medtronic Community Exchange Event in Barcelona in November 2016. www.bloodsugartrampoline.com www.thriveabetes.ie

Fostered the Thriveabetes Founder & Event Organiser Thriveabetes: The Thrive with Type 1 Diabetes conference is probably what I spend most of my volunteer time on these days. This event uses every skill I have learned though all of those years of volunteering from financing to volunteer management.

Volunteering Make Us Stronger And there you have it! What started out as a cry for help over time became a “what can I do to help you.” I now spent all of my free time writing, connecting with my diabetes community (online and offline) and advocating for all the things we need for people with diabetes.

I have found something I am passionate about. I can’t wait to see where volunteering brings me next!

Irish Blog Awards Long list

Aaaageees ago you may remember that I ask for you to nominate this blog and the Thriveabetes blog for an Irish Blog Award. Well, guess what!!!! We all made the long list!!! Both Thriveabetes and Blood Sugar Trampoline are in the Best Health & Wellbeing Blog category. And Blood Sugar Trampoline is also in the Best Blog Post category. I'm afraid I could not pick from all the amazing blog posts from all of you to nominate one for Thriveabetes.

So what's next in this award process.

Well, now I have to wait and see if we make it onto the short list and the judging criteria for this is;

• Is the blog regularly updated (at least once a month on average)? Yes
• Does the design support or interfere with the reading experience? Yes & No, I think?
• Is the blogger passionate about and knowledgeable about the subject? YES! YES!!!! and YES!
• How easy is the blog to navigate? Uuumm yees?
• Is the blog responsive to PC, mobile and tablet browsing? Yes

If we make the short list the next stage will be some of the dreaded Public Voting. And I suck at it!!!

"The shortlisted blogs will be opened up to a Public Vote so the more you promote your entry the better. The Public Vote is worth 20% of the overall mark (the other 80% is decided by our judging panel). To help you out we will send you “vote now” buttons which you can use on your blog and social media." from the Littlewoods Ireland Blog Awards webpage.

While awards don't make the blog it would be nice to create more awareness of diabetes and the support available for people living with diabetes. You can never have enough awareness, and that is for sure.

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Things I've Learned about My Diabetes with a CGM

I have been using a Continuous Glucose Monitoring device (CGM) for six months and I feel that I have enough information now to share what I have learned about my diabetes management in those short months. A couple of weeks ago I shared how I came to get my hands on this little golden nugget and you can read about that here.

So here it goes, in no particular order, what I have learned.

Rapid acting insulin is not that rapid at all!

If my blood sugar levels dare to go ⇑ and beyond, it could take up to 4 - 6 hours for the insulin to bring them back to normal. It is a major exercise in patience!!! And can lead to rage bolusing (i.e. getting extremely frustrated and bolusing more that reason dictates).

Before CGM, I would take a correction dose of insulin, go to bed, only to wake up in the morning to realise that it hadn’t lowered my levels as much as I had hoped and I had spent at least 8 hours with elevated blood glucoses levels.

Hypo treatments don’t work fast either.

Glucose, even in its purest, most rapid form doesn't work fast enough. This can lead to over treating but thankfully the CGM can help curb the overtreatment.

Angle of Arrow Interpretation ⇑⇒⇓⇖⇗⇘⇙

Interpreting what the angle of the arrow next to my blood glucose reading, means in terms of where my blood sugar levels are heading is not that easy but after a bit of trial and error can be achieved.

The alarms can be annoying.

The alarms! The alarms, in the beginning, were, can be annoying and did interrupt many nights of sleep. But they are there for a reason. And very good reasons at that.

The alarms are very useful learning tools.

I tried not to get frustrated with the alarms, especially the low glucose one, which I have set at 4.4mmols. This give me enough time to prevent an actual hypo and I’m still rational enough to decide how to deal with the impending train wreck.

Mostly I use the alarm as learning tool on how to adjust my insulin dose to avoid them. And it’s worked. Six months ago my high blood glucose alarm was set at 16.6 and now I’ve gradually brought that down to 13.3, it only very occasionally goes off (touch wood). They are especially helpful for dealing with days out of my routine and for food that I don’t have very often.

I’m self conscious about my gadgets and gizmos.

Since the weather warmed up I’ve been wearing short sleeves and my sensor, which is placed on my upper arm, attracts a bit of attention. This does make me think about wardrobe choices a bit more and if I really want to talk diabetes.

I sleep less.

This is both good and bad. Bad because I might be woken several times a night because of the alarms and good because I know that I will never have a hypo again without being aware of it. Sleeping through hypos was a huge concern of mine and the reassurance that my CGM gives me is invaluable.

Sometimes my CGM is not reliable.

Just like any other piece of technology I have noticed that there are times where I should double check my CGM reading with a finger prick check. The times this most often happens is usually the first day of a new sensor and when my blood glucose levels are rising quickly or falling quickly. So I still do 7 finger prick tests a day.

My blood glucose levels are within their targets 65% of the time.

Finger prick blood glucose tests give you a snapshot of where your levels are at that point. The CGM tells you where your blood glucose levels are ALL of the time. It’s the difference between having a photo or seeing the whole movie/book. Now that I have a starting point I can try to increase that percentage and spend more time within a healthier blood glucose range. I also appreciate knowing that number is over 50%.

My CGM does influence my behaviour.

That little graph display does influence my behaviour around food and it also helps me stem the spike in my post meal blood glucose levels. It influences decisions about my treats, such as helping me determine should I choose a full bar of chocolate, just 2 squares of the good dark stuff or on warm sunny days the ice cream. My cgm really helps me spend more time within my blood glucose target range.

It has helped reduce my HbA1c!!!

Yes! I had my lab work done at the end of May and I have had the lowest HbA1c that I have had in four years and the time before that I maintained close to this level while I was pregnant with my first child 12 years ago. I have not been able to stabilize this level at any other time. I have been using an insulin pump for 6 years and hadn’t achieved a lower number. Insulin pumps should be available to those who want them and it should be very much about a personal choice. But CGM’s, in my opinion, are way more valuable a tool for managing diabetes and should be strongly encouraged. Even if it’s just for a couple of months. I know they are expensive but in the long run they would reduce the number of hospital admissions for both hyper and hypoglycemia.

All in all, I am never giving this device up! Knowing where my blood sugars are at any given time has been so reassuring and relieved so much anxiety.

On a promotional note, I attended a presentation by Thriveabetes 2016 keynote speaker, Gary Scheiner on "Making the Most of Your CGM" where I learned lots of useful information and he has published a book on it, "Practical CGM". You can register for Thriveabetes 2016 here.

The Blood Sugar Train Wreck

This train wreck started with a decision to skip the spud at dinner, in my opinion. We were having Chicken Maryland and so there was enough carb on the breading to double my usual dinner carb count and I decided to forego the mash potato. This middle/2nd dip below the blue line in my photo opposite shows the low blood sugar after dinner.

I, mostly, eat low to moderate carbs to help maintain good blood glucose management. It’s a decision that I made for myself and I would never try to make it for anyone else.

Having said that, the real, real reason I skipped the spud was to have an ice cream. :-S It was a Saturday and I like to have a special treat on the weekends. Being a stay at home mum, it kind of lets me know there is something different between weekdays and the weekends.

I feel like I’m digging a bigger hole for myself here!

Anyway, here comes the second questionable decision. My blood sugars plummeted after dinner and I was so SICK TO DEATH of eating glucose tablets that I opted for chocolate and jellies instead. I know! I know! Not the smartest idea. (Another big hole) I can’t even use the fact that my hypo was affecting rational decision making because it didn’t.

Lots of jellies!

Ok, now the predictable happen. ↑↑ Yep, blood sugars doing the opposite of plummeting, which eventually lead to rage bolusing because insulin does NOT work as fast as I would like it too.

Next up, the rocket train down again. At this point, I took 5 glucose tablets, I usually only take 2-3, to make sure it was well and truly taken care of and that I would not wake up again before I was suppose to.

There is no lesson in this post. I'm just frustrated!!!

But I survived! I learned! And I shall not beat myself up over it:-)