Blood Sugar Trampoline

The Hard Diabetes Changes

I’ve been using an insulin pump for almost seven years and it’s unlikely that I will go back to injection pens. However, I know that things change over time and how I feel about things also change, so I will never say that I will never go back to injection pens because the future is unpredictable.

This week, I have been thinking a lot about all the times I’ve changed the way I manage my diabetes and how difficult some of those changes were. 

I remember when I was transitioning from pens to my pump and that period where I was “practicing” with it. I swear I just wanted to throw it against a wall it was so annoying. But I was also doing twice the work; I was injecting the real insulin with my pens and calculating pretend insulin doses with saline in the pump. It took twice the time for no extra gain. I did that for three days.

I sat in my kitchen one of those three days and thought to myself what if, after all I went through to get this pump, I actually hate it? What if it drives me batty? Why am I changing everything? And the horrifying thought of what if it doesn’t help me?

Then I reminded myself that very few people around the world give their pumps back – they continue to use them and are happy with it. I had seen this research on the internet. I also reminded myself that if I didn’t like it that I could go back to pens. I reminded myself that change is always hard.

I remember when, after living with type 1 diabetes for 6 years, I changed from two injections per day to four! I remember thinking “how is this better?” when it was suggested. I didn’t want to do it but my research told me it was a better way and it was worth trying.But it was better.

I remember when my first blood glucose meter became obsolete. I think I used it for 5 years!!! I know, it was crazy! It was a pain to try a new one. Not to mention changing to new test strips. But it was a good change.

I remember when I went from checking my blood glucose twice per day to four and then to seven. That was a pain but, again, worth it. I learned so much about managing my insulin doses to match the needs of my body from all of those tests. Now, it’s simply out of habit that I still maintain those 7 tests.

I remember when I tackled proper carb counting and not just guessing – that was a lot of extra work for a couple of weeks. Again worth it.

I was not happy with the results I was getting in my life with diabetes and even though change is always going to be difficult at first, it’s worth remembering that some changes are worth it. Some were not worth the effort and I didn’t continue with them. But doing nothing was not an option. If I didn’t try I would never know if it was better.

Diabetes Discrimination in Career Choices

Lucky for me, or maybe for the world :-O, I never aspired to be an astronaut or an airline pilot for my career. But I have met just a few people with diabetes who did. In particular, a couple who all they wanted in life was to fly airplanes. But when they were diagnosed with type 1 diabetes they ruled it out.

At the Diabetes Hands Foundation MasterLab 2016 conference there was a fantastic presentation on “Diabetes Discrimination in the Workplace”  that prompted me to feature this issue. I’ve divided it into two posts though as it was getting a bit long.

The first of which is how diabetes may affect your career choice. The second post will feature discrimination in your workplace and what your rights are.

Did you know that it’s only since 2015 that a person with type 1 diabetes can apply for An Garda Siochana in Ireland? But there are still difficulties for people with type 1 diabetes who want to join the defense forces, emergency services, railway workers and some careers at sea? What this probably means is that no one with type 1 diabetes has succeeded in passing the fitness tests to qualify for any of these careers. (source; Diabetes Ireland). But other countries don’t have these restrictions. Why can a person with diabetes be a member of the police force in the US and not be in Ireland? Well, it’s because these rules are being challenged in those countries and winning!

In the UK, some NHS Ambulance Trusts, still have restrictions in place on people with diabetes who wish to be ambulance crew. But these restrictions are being challenged.

In the US a person with diabetes CAN be a firefighter or a police officer! You CAN be a commercial pilot in the UK and Canada but not in the US. This is being challenged also.

My point is if you have a dream, if you know what you want to do with your life, don’t let people put you off. If you feel that you are right for any of those careers, then go for it! Where there is a will there is a way!

Here’s the video from MasterLab 2016 – well worth a watch!!

I had hoped to publish part 2 of Diabetes Discrimination along with this post but Ha! Intentions were good but time did not cooperate. Part 2 next week!

Blood Glucose Diary Faker

Renza from Diabetogenic wrote this piece on “fudging” our bg numbers in our blood glucose diaries and it fuelled my fire. It’s such a coincidence that we both attended conferences where the “Fake” blood glucose diary of a person with diabetes was held as an example of a “bad” patient! Renza’s piece is well worth a read on how she handled the situation and spoke up for all of us. She rocks!!

My experience was more of the sitting quietly at the back in disbelief that this was how this conference was beginning. The conference I attended focused on changing the way care is delivered to young adults with diabetes.

I was diagnosed as a young adult – age 20. The instant I saw that photo and heard those words I had vivid flashbacks. I remember doing that! I even remember why! I remember that every out of range blood glucose number in my diary was questioned, I felt interrogated and I never knew the answer. Back then, there was no carb counting and no one told me that if I ate more food but still took the same amount of insulin that my blood glucose levels would be higher. It wasn’t bad behaviour or poor choices – it was ignorance. I remembered being lost, feeling so isolated and not knowing anything about diabetes, let alone how to manage it. I remember that I never felt I could ask for help with my diabetes from my health care team.

I did it because I didn’t want to be judged or reprimanded for something I thought had no control over. I was letting my diabetes team down.

This conference, supposedly, about health care professionals finding a better way to deliver care but this made me feel like the reason young people with diabetes were not doing well was their own fault.

What should have been said, and said clearly, was that if a person with diabetes feels they have to hide their blood glucose numbers from their diabetes team the patient is the one being failed. That the diabetes team are to ones letting the patient down. That your reaction to people’s blood glucose diarys need some work. That the fact that a patient has actually written down their blood glucose numbers at all is an achievement to be celebrated. That you, despite your best intentions, are being judgemental.

Thankfully, these days, I am much older and wiser and more assertive these days. And of course, there’s the fact that I don’t care very much what other people think of me. I do ask for help – it’s not always available but I keep asking. I also have a team that seem to be a bit more open to conversation about what I need. But I am a little perturbed that 20+ years later, young people with diabetes STILL feel that they have to cheat to pass their diabetes test?

Oh and BTW, I ALWAYS use the same pen to write down my BG numbers cos I keep the same pen in the case with my bg meter!! So this is not an effective way to flush out or prove a diary is being faked.

Pen stored inside Blood Glucose meter case. Photo credit Blood Sugar Trampoline
Pen stored inside Blood Glucose meter case. Photo credit Blood Sugar Trampoline

How many people actually use a written diary these days not anyway? Aren’t we all uploading to software programmes or using Apps?

Empowerment and Diabetes – My Journey

Last May, I was asked by the organisers of the Future Health Summit to give a presentation on how I became an empowered person with diabetes. Some friends asked if I could blog about it.

The reason for my topic choice was because the theme of the conference was Empowering the Patient, Information, Choice & Accountability and I decided to focus on Empowering the Patient element for my presentation. I feel like I am one, that diabetes does not have power over me, I have a lot of power over it.

The journey towards being an empowered patient didn’t happen overnight, for me. I would like to think that a person with diabetes diagnosed today would find empowerment much quicker than I did. But the two core elements that were pivotal in my journey didn’t really exist when I was diagnosed. Those elements were Diabetes Education & Support.

Obviously my Journey Began with diagnosis 23 years ago – 1993. Diabetes Education was extremely basic in Ireland back then, if it existed at all!

My diabetes management involved;

  • – Injecting a fixed amount of insulin twice every day
  • – Eating the same amount of food at the same time every day
  • – Checking Blood Glucose levels just twice every day
  • – And I was taught How to recognise & treat a hypo

For those first 6 years I felt like I blindly coasted through my diabetes care. I did what I was asked to but I had no idea why I was doing any of it, except to stay alive.

So what changed? What prompted me to get on the bus to empowerment?

This is going to sound corny but it was love. In 1999, I met this bloke.

Phil

This is Phil. We weren’t going out very long but he already had notions about our relationship and we weren’t going out for very long when he asked me for books or leaflets where he could learn more about helping me manage my diabetes. I was stunned! And for three reasons;

  • – He was the first person I met who didn’t expect me to educate him on something I barely knew myself.
  • – That the relationship was moving a bit faster than I had thought and
  • – that I had nothing, absolutely nothing to give him when it came to information.

What I did have was access to the internet at work. So the next day, during my lunch break, I “AltaVista’d” type 1 diabetes. If you don’t know what AltaVista is, google it! 😀

I couldn’t believe what I found – the list of websites containing information was so long. I found all of these organisations with websites that had tonnes of practical information such as the Joslin Diabetes Centre and the world’s leading research organisation, the JRDF. I had never heard of these places before.

I started reading all of this information before handing it over to Phil and it got me thinking that there might be a better way to live with diabetes. But that thinking got shelved for a while as this journey is not an express route and it required a couple of transfers to reach my destination.

1st Transfer–Diabetes Education

You’ll be happy to know that I, very quickly, realised Phil was a keeper and by 2003, we had been married a couple of years, had moved to US and we were thinking about starting a family. As soon as my endocrinologist heard this he marched me off to a dietitian to learn about counting carbohydrates, insulin dose adjustment and sliding scales.
Family 1family 2

I had been diagnosed 10 years by the time I found diabetes education which now seems too long. But this knowledge gave me some of the control over this thing called diabetes for the first time. And I felt supported; supported by my diabetes team and supported with knowledge. I didn’t realised it then but my diabetes team in the US was the first I experience of patient centred care.

2nd Transfer–Diabetes Peer Support

The 2nd transfer on my journey towards empowerment was finding peer support.

By 2007, we had moved back to Ireland, had our second baby and I was increasingly frustrated and unhappy with the diabetes care I was receiving. In June of that year I found myself at my lowest point after leaving the most humiliating diabetes appointment I’ve ever experienced. But it propelled me into action. I knew there had to be someone out there who would make me feel listened to.

I went home and remembered a recent newspaper article about a new branch of Diabetes Ireland being set up in Clare. I called the number in the piece and the lady who answered was a fellow person with type 1 diabetes. What are the odds? She had had her second baby around the same time as I had and we were both new to Clare. We instantly connected and during the course of that conversation we realised that we both wanted to meet more people like us and to do this was to set up diabetes support groups.

By the end of 2007, we had diabetes support groups and they continue to be a source of information, motivation and inspiration for me. And they, with some information from Diabetes Ireland helped me find a diabetes team that works amazing for me.

support group

Destination Reached – Person Empowered

This is where I feel my journey towards empowerment was completed. I had reached my destination.

Yes, I took the scenic route to being an empowered person with diabetes. An empowered person with diabetes who can drive her own diabetes. And I became that by finding two very simple, very basic diabetes resources but yet they are not accessible to everyone with diabetes in Ireland.

The first necessity is Diabetes education is as important as giving someone who wants to drive a car lesson and some theory. Would you really put a beginner in the driving seat of a car without it? And not just structured diabetes Education, like the university style of lectures. This education has to be an ongoing 2-way conversational style of learning, where a person with diabetes can grow in confidence, drive their own diabetes and the instructor takes more of a back seat each time.

The second is Diabetes Support and for me that comes from three sources;

  • At home – I may be the person with diabetes but my whole family lives with it. The more supported I am at home the more successful I will be in my diabetes management.
  • My Diabetes team – My journey has taught me that I need a health care team who listens to me, acknowledges all that I do to manage my care and doesn’t just focus my failings. A team that continues to teach me and a team that continues to learn.
  • My diabetes Peers – the most undervalued, underused resource available for people with diabetes today. Who else knows what it’s like to live with diabetes than other people with it. We learn so much from sharing our experiences, so much that can’t be taught in a hospital appointment.

So while my journey towards empowerment has been completed, my life with diabetes journey still continues. And I hope to continue that journey for many, many decades.

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.

Download (PDF, 692KB)

Treasures from the Diabetes Online Community

Every now and again the DOC sends you something wonderful in real life, or in this case someone wonderful, who you would never have met otherwise. And I feel lucky that I’ve had a couple of those opportunities already this year.

On Saturday last, I met one such person; Gina Gaudefroy. I don’t know how Gina found me last year but she did and sent me an email. We exchanged some of our stories in a couple more emails. Gina shared that she is originally from Limerick but now lives in California. She is very involved in her diabetes community and in participating in many clinical trials. Her diabetes clinic is one of the few participating in the Bigfoot Biomedical Open APS trial and the ViaCyte transplant trials.

Last week, she messaged me saying she was going to be in Ireland, staying in Co. Offaly and could we meet? Hold up! My first question was what the hell are you doing in Offaly, very close to where I grew up? My Irish nosiness kicked in. It turns out that Gina’s father comes from there.

I waited until she arrived to quiz her more about her ancestors, in true Irish tradition. And gave her some of my family history to return with so that she could determine if anyone in any of our families knew each other. And yes! Not only do we have diabetes in common but her father’s people know my people!

Our paths may never have crossed or a connection made if it had not been for social media in particular the DOC. Our diabetes prompted us to connect personally but now we have lots more reasons to stay in touch. 😀

Gina & Me
Gina & Me

Diabetes gone Wild on Holiday

Diabetes on Holiday

It’s summer, which means for a lot of people it’s holiday time. “They” say that diabetes never takes a holiday but what “they” don’t tell you is that when you take a holiday you should be warned that your diabetes will behave as if it’s gone wild in Ibiza and partying like it’s 1999.

I took a holiday for the last couple of weeks. I didn’t go anywhere though. My brother in law and his family were visiting from America, hubby took ten days off work and the kids are on their summer break, so I decided it was a good idea to take a break too. No emails, no posting, very little facebook and twitter (let’s be honest – zero facebook while FFL was going on in Florida was just out of the question:-)

We did lots of day trips, lots of sightseeing, lots of driving, lots of eating out and almost no downtime. One day there could be lots of walking, the next was lots of time in the car. This is my diabetes worst nightmare!

Diabetes gone Wild on Holiday
Diabetes gone Wild on Holiday

My high and low blood glucose alarms went off a lot! Food that I thought might be low carb turned out not to be. Trying to schedule bathroom breaks around optimal blood glucose checking times was challenging. It was all exhausting. My diabetes broke all of the rules, even the ones that I had it well trained in. It decided that all bets were off.

For the biggest part, the holiday was soo much fun with fun people. But I’m ever so glad to be chillin’ at home with the kids for the rest of the summer.

What is Diabetes

Chances are that if you found my website you already know a little something about diabetes. But, you might be like me and always want to learn more. And there’s ALWAYS is more to learn about diabetes. In this page/post I will attempt to give you my interpretation of diabetes. But I will also refer to medical people who can get more technical. I will also talk about the symptoms of diabetes, the risk factors and different types of diabetes.

Diabetes is not easy to explain and it usually requires more than a short sentence, which means people’s eyes glaze over and you lose them before you get to the “good” stuff. But you still have to try right.

It’s important for all of us, people with diabetes, to not only explain our type correctly but when we are asked about other types that we support those people well too.

Let’s start with the basics. Most of the medical definitions I’ve used here came from the Canadian Diabetes Association’s website.diabetes What is-1270346

Diabetes is;

Diabetes is a lifelong, chronic, and sometimes fatal disease about the struggle to manage glucose levels in your bloodstream. The body either cannot produce insulin or cannot properly use the insulin it produces.

What do we need insulin?

Insulin is a hormone that turns the glucose (sugar) in our blood into energy for all of our cells to function. The glucose comes from a couple of sources, mostly from foods known as carbohydrates and a stored supply in our liver. Diabetes leads to high blood sugar levels, which can damage organs, blood vessels and nerves – every where our blood goes means that’s an area excess sugar can damage. – See more here.

There are a bunch of different types of diabetes.

Type 1 Diabetes

My (non scientific, non-medical) description; Type 1 diabetes happens when, for some unknown reason, our immune system goes “terminator” on our insulin making cells and wipes them all out. My body now has no way to convert the food I eat, in particular the good stuff that comes in the form of carbohydrates, into fuel for my body to exist. Or the glucose that is constantly being released from my liver to keep energy levels up in between meals.

About five to 10% of people with diabetes have type 1 diabetes and it can happen at any age. Type 1 diabetes generally develops in childhood or adolescence, but can develop in adulthood. And type 1 diabetes is always treated with insulin.”

For the more medical explanation of type 1 diabetes click here. “The risk factors for type 1 diabetes are still being researched. However, having a family member with type 1 diabetes slightly increases the risk of developing the disease. Environmental factors and exposure to some viral infections have also been linked to the risk of developing type 1 diabetes.” Source – International Diabetes Federation (IDF)

Symptoms of Type 1 Diabetes:

The symptoms of type 1 diabetes can develop very quickly (over a few days or weeks), particularly in children.

The main symptoms of type 1 diabetes are the 4T’s :

  • Excessive  Thirst
  • Excessive trips to the Toilet
  • Excessive Tiredness
  • Thin; losing an excessive amount of weight

Other symptoms can be vomiting or heavy, deep breathing can also occur at a later stage. This is a dangerous sign and requires immediate admission to hospital for treatment. For more information on the symptoms of type 1 diabetes, click here.

LADA (latent autoimmune diabetes in adults) or Type 1.5

My (non scientific, non-medical) description; LADA is very much like type 1 diabetes but it tends to occur in older adults. It is very often mistaken for type 2 diabetes. It’s a slower destruction of the insulin making cells. Maybe it’s something to do with the “Terminator” being older and slower moving!?! So the symptoms present over a longer period than they would for a person with type 1 diabetes.

LADA is also known as slow-onset type 1 diabetes and type 1.5 diabetes. Like other forms of type 1 diabetes, people with LADA require insulin injections to normalise their blood glucose levels.

For the more medical explanation of LADA click hereSymptoms are very similar to those of type 1 diabetes.

Type 2 Diabetes

My (non scientific, non-medical) description; Type 2 diabetes happens when your insulin has developed a dementia. It’s old and tired and not quite sure what it’s suppose to do. So, sometimes it works and sometimes it has to put twice as much effort in to work. To me, it’s like the insulin has dementia – sometimes it’s sharp and works well and other times it just can’t figure out what to do.

In general, people who develop type 2 diabetes are older but this isn’t always the case. it’s the most common type of diabetes.

The treatment options for type 2 diabetes include managing physical activity and meal planning, or may also require medications and/or insulin to control blood sugar more effectively. It can be a series of trial and error to find the right treatment plan for a person with type 2 diabetes.

For the more medical explanation of type 2 diabetes click here.

Symptoms of Type 2 Diabetes:

The symptoms of type 2 diabetes can be very slow to present and often you can have type 2 diabetes for a number of years before it is picked up.

The most common symptoms of type 2 diabetes include:

  • excessive thirst
  • frequent or increased urination, especially at night
  • excessive hunger
  • fatigue
  • blurry vision
  • sores or cuts that won’t heal

Risk Factors for Type 2 Diabetes (from IDF):

There are 10, that’s TEN risk factors for type 2 diabetes. Not just the two/three that we ALWAYS hear about.

  • Family history of diabetes
  • Increasing age
  • High blood pressure
  • Ethnicity
  • Impaired glucose tolerance (IGT)*
  • Overweight
  • Unhealthy diet
  • Physical inactivity
  • History of gestational diabetes
  • Poor nutrition during pregnancy

Impaired glucose tolerance (IGT) is a category of higher than normal blood glucose, but below the threshold for diagnosing diabetes.

Gestational Diabetes

The other description from IDFis a form of diabetes consisting of high blood glucose levels during pregnancy. It develops in one in 25 pregnancies worldwide and is associated with complications to both mother and baby. GDM usually disappears after pregnancy but women with GDM and their children are at an increased risk of developing type 2 diabetes later in life.

Approximately half of women with a history of GDM go on to develop type 2 diabetes within five to ten years after delivery.

Other Types.

There are other, much rarer forms of diabetes that are monogenic, meaning a change in only one gene is responsible for the condition. There are two types of conditions in this category: Maturity Onset Diabetes of the Young  (MODY) and Neonatal Diabetes Mellitus (NDM).

For these types of diabetes I have to call on the words of experts because I’m not very familiar with them and don’t feel comfortable giving a description of something I don’t know much about.

MODY Maturity Onset Diabetes of the Young

I would love to take credit for this explanation of MODY but I couldn’t do any better than Morag (Twitter: @SparklyRedShoes) on GBDOC MODY happens when there is a mutation of a gene and is most often hereditary. It very often is confused as type 2 diabetes in a young person.

“MODY is diagnosed by genetic testing. It may be worth testing for MODY when a person with diabetes doesn’t fit the profile of the more usual types. For example, somebody who actually has MODY may not require as much insulin as most people with Type 1 (and will have measurable C-peptide), even long after the honeymoon period, but they will generally not be of the age and weight you might expect to see for Type 2. In fact, at diagnosis, people with MODY are often young, slim and active. ”

Being genetic, it runs strongly in families; if one parent has it, then the chances of a child inheriting the gene are 50/50. People with a MODY gene generally develop diabetes as young adults, and most are diagnosed by age 45.

For the more medical explanation of type 2 diabetes click here.

The key features of MODY are;

  • Being diagnosed with diabetes under the age of 25.
  • Having a parent with diabetes, with diabetes in two or more generations.
  • Not necessarily needing insulin.

NDM Neonatal Diabetes Mellitus

baby1-499976_1920From Diabetes UK; Neonatal diabetes is a form of diabetes that is diagnosed under the age of nine months. It’s a different type of diabetes than the more common Type 1 diabetes as it’s not an autoimmune condition (where the body has destroyed its insulin producing cells). Like MODY it’s a genetic mutation.

 The key features of neonatal diabetes are:

  • Neonatal diabetes is caused by a change in a gene which affects insulin production. This means that levels of blood glucose (sugar) in the body rise very high.
  • The main feature of neonatal diabetes is being diagnosed with diabetes under the age of 6 months, and this is where it’s different from Type 1, as Type 1 doesn’t affect anyone under 6 months.
  • As well as this, about 20 per cent of people with neonatal diabetes also have some developmental delay (eg muscle weakness, learning difficulties) and epilepsy.
  • Neonatal diabetes is very rare, currently there are less than 100 people diagnosed with it in the UK.
  • There are two types of neonatal diabetes – transient and permanent. As the name suggests, transient neonatal diabetes doesn’t last forever and usually resolves before the age of 12 months. But it usually recurs later on in life, generally during the teenage years.  It accounts for 50-60 per cent of all cases. Permanent neonatal diabetes as you might expect, lasts forever and accounts for 40-50 per cent of all cases.
  • Around 50 % of people with neonatal diabetes don’t need insulin and can be treated with a tablet called Glibenclamide instead. These people have a change in the KCNJ11 or ABCC8 gene and need higher doses of Glibenclamide than would be used to treat type 2 diabetes. As well as controlling blood glucose levels, Glibenclamide can also improve the symptoms of developmental delay. It’s important to know if you have/your child has neonatal diabetes to make sure you’re/they’re getting the right treatment and advice (eg stopping insulin).
  • Genetic testing for neonatal diabetes is offered free of charge for all people diagnosed with diabetes before 9 months of age. Confirming the diagnosis by molecular genetic testing is essential before considering any change to treatment.
  • More information about neonatal diabetes can be found here.

So if you were/your child was diagnosed with diabetes before you/they were 6 months old, ask your diabetes team for a test for neonatal diabetes. Your team can take a blood sample and send it to the Peninsula Medical School based at the Royal Devon and Exeter Hospital for analysis. The test is free. Go to www.diabetesgenes.org. This site will also tell your doctor how to take your blood and send it to the team at Exeter.

Diabetes 1 Now Study

Diabetes Educators?

Last week was completely mental for me. Definitely not the life of a stay at home parent and way too  exciting.

Wednesday, a bunch of us diabetes advocates went to Leinster House to meet with our TD’s and Senators. This is the equivalent of meeting with congress in the US, kindof. I won’t go into detail here but if you’re interested in what happened I posted about it here on Thriveabetes last Tuesday.

Thursday was the complete opposite, live moving from a developing country to a developed one. One day, I was asking government to approve the funding needed to improve our diabetes services, the next, I was in the world of research and science. Not a world I’m very comfortable in but I learned a lot about peer support and specifically this research project that Prof Sean Dinneen is leading on how to create a programme for young adults living with type 1 diabetes called D1 Now Study.

“This event was to provide a forum, lead by a diverse group of keynote speakers including Young Adult with T1D, for sharing experiences and developing ideas around the management of t1d during the challenging years of young adulthood.”

It was a jam-packed day with lots of international studies talked about from around the world about type 1 diabetes and their findings.

From The Role of Family in Supporting the Young Adult with Diabetes by Clea DeBrun Johansen from Denmark Diabetes Academy.

Among this study’s findings were that “The influence of the family continues to be very prominent during emerging adulthood, especially the college years.”
Her study also concluded that;
– Parents play an important, yet complex, role for emerging adults with type 1 diabetes.
– Parents can contribute positively to diabetes self-care and psychological well being.
– Parents can also negatively influence life with diabetes for emerging adults (absence, disinterest in diabetes, acting in a controlling manner).Interview Findings
Emerging adults do not want to be too dependent on their parents – they want parents to be available when needed.

Clea ended with this quote but I would argue that you can do diabetes alone but nobody wants to.

You can't do diabetes alone
You can’t do diabetes alone

Next up was Barbara Johnson who discussed WICKED, a new diabetes education programme in Sheffield. This has to be the coolest name for diabetes education. EVER!

Workin with Insulin, Carbs, Ketones and Exercise to manage Diabetes.

Prior to developing WICKED, Sheffield realised that young adults were taking responsibility for their diabetes often when changes are happening – starting work, moving away to uni, drinking alcohol, having sex and that they may not have received education targeted at them before.
They asked for education that was relevant to them.

Will Hadfield from King’s College Hospital, London, told us about their Transition Clinics for adolescents with diabetes.

His description sounded very much like an afterschool club with peer activities organised by the patients. He also mentioned that a large number of young adults don’t want to received anything diabetes related in their social media feeds. I can understand that they want to keep at least one zone or area of their lives free of diabetes. I have some of those too.

Sarah Simkin from Jigsaw Galway gave a very enlightening talk about how their

A Service Designed by Service Users.

From the design and layout of the building to how the service would be delivered. They really adopted the “Nothing about us, without us” motto that has been circulating for a couple of years and they owned it.

Young Adults with Diabetes Panel (YAP)

Then we heard from the first of two young adults with diabetes who are involved in the D1 Now study. Monica Mullins, a student in Galway, told of how she became a member of the Young Adult Panel (YAP) and the training they received to become researchers. There was a lot of training and it does make them more effective in the research but now I feel that they have altered their typical YA with diabetes demographic, making them not so typical now. Maybe an an additional YAP is needed so that they research team learn to communicate with them.

Our second voice of diabetes, Liam McMorrow designed a survey on “Understanding Young Adults preferences for Diabetes Clinic care”. It was really interesting and I had a couple of questions about his fantastic questionnaire but there wasn’t enough time to answer many questions.

CHOICE

Last but not least was David Chaney who is the National Director of Diabetes UK Northern Ireland and the only other Irish person I met at the Friend for Life Diabetes Conference in America last summer.
David, with diabetes teams across Northern Ireland, developed CHOICE, (carbohydrate and insulin collaborative education). CHOICE is a structured education programme for children and young people with diabetes (aged 0-19 years) and their parents / carers.

I don’t think there is a parent of a child with diabetes in Ireland who does not know about CHOICE. David took us on the journey of how CHOICE came to be and how it has developed and adapted to meet the needs of children and young people with diabetes.

He told us that when a child is diagnosed with diabetes all the education is directed towards the parents, so when a child transitions into the adolescent and young adult service we expect them to have absorbed all that information by osmosis. Barbara Johnson earlier reinforced this point. David believes, as many of us do, that diabetes education is the cornerstone to good diabetes management.

We are kind of putting our young adults with diabetes into the driving seat of their diabetes without giving them a few lessons and a bit of theory. But, you wouldn’t put a person in the driving seat without giving them a few lessons and a bit of theory first. Then as their confidence grows the diabetes team backs away but if there whenever they are needed. CHOICE is teaching adolescents and young adults to drive their own diabetes.
David also provide The Best Slide of the conference in my opinion. “If HCPs don’t provide diabetes education, others will” Diabetes Educators?

I did get a little frustrated and “irked” about half way through the conference because it was starting to feel like I was being talked about while in the room but not being included in the conversation. Maybe I needed some YAP training to fully participate? Again, it’s not a world I’m very familiar with so maybe that was it? I also wasn’t able to attend the Hackathon that followed the Conference. And I am looking forward to seeing where the research goes and how it develops.

On a personal note the stress of travelling across the country, plus trying to find “volunteers” to look after my children had left the building, along with the high blood glucose numbers:-)

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.

Breakfast Blood Glucose

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.

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