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! :-D

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.

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.

Family 1

family 2

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.

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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. :-D

Diabetes gone Wild 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!

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 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 here. Symptoms 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 IDF; is 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

From 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.

Dangerologist meets Diabetes

My son and I are reading a book called “Danger is Everywhere” at bedtime at the moment. It’s a very cute and funny book about… well about Danger being ABSOLUTELY everywhere and a huge thank you to David O’Doherty, the author, for writing it and the sequel “Danger is still everywhere”.

As my son was reading the bits he thought were too hilarious for me to read because, obviously I would not do it justice. I was thinking about what would happen if Dr. Noel Zone, the level 5 dangerologist met a person with diabetes. How would he react, if I wouldn’t let him wrap all the sharp things I use in bubble wrap so they were less dangerous? If they were wrapped in bubblewrap then the would be dangerous to me - as in put my life in danger because I couldn’t use them.

It’s a good thing Dr. Noel is a fictional character. And I hope he doesn’t meet a person with diabetes and all those sharp objects. I don’t think he would cope:-)