There are lots of people on social media doing their bit for diabetes awareness, and this is fantastic. However, raising awareness seems to be a big buzzword these days, but what does that really mean, and how do we raise awareness of something effectively? Should I do it by sharing a random image on my Facebook feed that doesn’t tell any of my friends anything at all? Or should I use my social media to share information?
In this post, I will provide a short summary of the information revealed from parliamentary question responses on how many people in Ireland use insulin pumps, what clinics provide them as a treatment option and how many new pump starts are done each year.
My diabetes diagnosis shattered my confidence in my ability to take care of myself, and my plan quickly became to just get through the rest of the term, move home for the summer to my previous summer job and figure the rest out over the summer. Adjusting to my new normal of living with diabetes began while I was still in hospital, or did it?
I realised last year that in all the blog posts I’d done these last 13 years, I have never shared my diagnosis story, so here it goes. My diabetes diagnosis is not unique; many of my friends with diabetes share similar experiences; however, some people end up very ill and may have spent time in intensive care units in hospitals. Thankfully this was not the case for me, but I did feel like I was dying.
The purpose of the document is to provide an estimate of the number of people who are using HSE-funded Flash and CGMs in Ireland and to prompt a discussion around access equality. I believe we need to talk about how fair it is that so many are approved for HSE funding and why some people are still being made to pay.
Mid October, I went to the DiabetesSisters Weekend for Women conference Alexandria, Virginia. See disclaimer at the end. One of the outstanding presentations I attended was by Thriveabetes 2016 speaker, Gary Scheiner’s presentation on “Making use of the Glycaemic Index”. This should not be a surprise to anyone has read Gary’s book “Think Like a Pancreas”. I will be honest here; when I heard the words “Glycaemic Index” I pretended I didn’t. And the reason is that several years ago, when it became a thing that was relevant to diabetes management, I tried to learn but I found it completely and utterly confusing. So I went to Gary’s talk as a skeptic.
BUT! As always Gary puts the information together well. See his blog posts here.
He started by saying that the glycemic index is the speed glucose enters the blood in the first two hours. It does not measure how fast foods enter the blood as glucose beyond that or how long it takes at all. A-ha! Ok so glycemic index is useful information for first two hours. I feel exonerated now.
This is hugely relevant to my diabetes management because I know that my rapid acting insulin peaks in approx 2 hours and that I might need additional insulin doses after that to cover the glucose released into my blood after the two hours.
The glycemic index is measured from 0 to 100. The closer to 100 a Food is, the higher its glycemic index is and the quicker the glucose hits your blood.
Here is a snapshot of the other things I learned;
Some additional pieces of information not related to glycemic index but valuable.
In summary, glycemic index important to people with diabetes because:
So, I’m glad that I learned all of this and I’m glad that I don’t have to waste any more of my time trying to figure it out because it makes more sense to me now. And It may help me to know the glycemic index of a Food I’ve never tried before so that I can figure how to deliver my insulin (pre-meal, at meal or extended Bolus).
Disclaimer: Diabetes Sisters paid for my conference registration and accommodation but also gave me a contribution towards my travel costs. All they asked for in return was that I would write a blog post about the conference which I had to do anyway because I learned so much that needs to be shared;-) And I wrote here about how I was selected.
Back in October, I had a steroid injection in my hip. And yes, it drove my glucose levels bananas! For those of you who may not be aware of it, steroids are one of the medications that truly mess up glucose numbers for lots and lots of people. The ultimate craziness only lasted two to three days but the residual crazy lingered a couple of weeks.
I have been complaining about my right hip for some time and I finally did something about it in September 2016. I went to my GP. He referred me to my physiotherapist and we did some “process of elimination” exercises. They didn't work. So then I went for an MRI and was referred to a rheumatologist.
At least now, we think I know what is wrong with my hip! It would seem both my physiotherapist and my rheumatologist agree that I have bursitis. And my rheumatologist injected steroids to reduce the swelling. If you have diabetes and you have steroids that plays absolute havoc with blood glucose.
However, no one could tell me how many days, weeks, months the glucose madness would go on for and how severe it would be.
Prior to my injection my diabetes management was going fairly well with just the usual ups and downs. I had the shot mid morning and my glucose levels didn’t feel the effect of the injection until after lunch. But after lunch my numbers remained in the high teens until the early hours of the next morning. On day two, I noticed that if I increase my mealtime insulin significantly more than usual it would keep them in check. However, if I forgot to make the increase then I struggled to bring my numbers back down for hours.
Then the effect of the steroid started to wane slowly over the next two weeks and I had the opposite problem: trying to keep my glucose levels above hypo level. I adjusted insulin doses slowly and only making one or two changes at a time to bring them back to my normal diabetes levels (?!?!).
I was grateful that not only was I aware that this would more than likely happen but that both my endocrinologist, rheumatologist and physiotherapist reminded me it would. I'm probably going to have another dose in January but now, at least, I have a good idea of what to expect.
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.
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!
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.
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.
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
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
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.
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.
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 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.
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)
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 :
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.
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.
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.
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:
There are 10, that's TEN risk factors for type 2 diabetes. Not just the two/three that we ALWAYS hear about.
Impaired glucose tolerance (IGT) is a category of higher than normal blood glucose, but below the threshold for diagnosing 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.
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.
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.
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.
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.
