Blood Sugar Trampoline

Weight and W-Exercise Woes

I’m sorry, I couldn’t resist the alliteration.

Over that last number of years, I’ve put on weight!!! I’m not overweight… Yet! I don’t feel overweight but my clothes are tight and I feel frumpy.

I’m frustrated because I’m eating less and less, still fairly active but I’m still gaining weight. I’ve cut down of a lot of my carbs. I’m not willing to go carb free. I exercise a bit – I know I could do more but there are things that I have to do during my day and there are things on the “could-do-unicorn-list”.

The weight loss principle might sound easy, and simple; eat less and move more.  But in reality it’s not. And for people with diabetes who use insulin, even more so.

How We Burn Fat
HOWSTUFFWORKS.COM

When we eat, the glucose and sugar harnessed from carbohydrates are the first fuel sources. The liver stores the glucose in the form of glycogen and releases it into the bloodstream as necessary to keep our body trucking along. Think of your bloodstream as an interconnected conveyor belt that takes necessary nutrients to the body parts that need them. Once that glucose runs out, fat takes over. Harnessing energy by burning fat is referred to as ketosis.”

 

When a person exercises they burn up the glucose in their blood first, which usually keeps you going for about 20 minutes. In a person who does not have type 1 diabetes, when that glucose is used up, the body looks for glucose else where and the liver starts to release its stores. In a person with type 1 diabetes the body goes into a hypoglycaemia (low blood glucose).

It is extremely difficult to get your body to burn fat, when your body goes into the shutdown mode of hypoglycaemia (low blood glucose).

The Vicious Circle in disguise

I’m also frustrated because what I’ve read recently about losing weight when you have type 1 diabetes seem like the are written in a foreign language.

I feel weight management is a common problem for people who use insulin. And actually it’s been proven as the biggest reason people with type 1 diabetes don’t exercise; finding the balance between insulin, glucose and all the other influences on our glucose levels.

So what’s my plan of action. Well, for now, my plan is to keep up with the research and try to find more ways to move while getting all the other stuff done.

I might come up with a better plan but this is all I have left to give for now.

Short Sleeves and Stares

It’s summer in Ireland. But summer in Ireland means wearing a rain jacket a lot of the time or a cardi. However, the weather has warmed up enough recently and has been a bit drier to go out in short sleeves. This feels a little uncomfortable for me.

Why? I wear a gadget thingy on the side of my upper arm. It looks odd and in short sleeves it’s hard to miss. Especially, when I’ve been wearing it for a couple of weeks when I’ve had to put extra tape on it to keep it stuck on and it looks a bit “ick”.

It’s a continuous glucose monitor and it measures my blood glucose levels every five minutes and transmits this information to a receiver screen. This device also alarms when my glucose levels are too high or too low, giving valuable information that helps me improve my diabetes management.

When I first started wearing my CGM two years ago, I was very self conscious of it and would actually wear a cardigan to collect the kids from school just to avoid talking about it. Everybody I met commented on it.

These days, I’m less aware and forget it’s there most of the time. Until I’m walking around the grocery and I suddenly sense that someone is looking at me. Then I do become slightly more conscious of it. But it’s difficult not too because I can feel the looks.

I got into a taxi last year and the driver asked me if it was a bomb? So I’m always wondering if that’s what other people are thinking, especially going through airport security. Most people don’t say anything though. The strangers don’t approach me they just look.

I can live with the looks now and I’ve worn short sleeves more that I did last year. I’ve gotten over how self conscious I was of it at the beginning. Because it’s fricking awesome in what it does for me and my type 1 diabetes.

And maybe some day it will be the reason that another person with diabetes comes up to me and says “Hi”.

2016-09-09 img

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.

Photo credit Pixaby.com

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!

Spring is in the air.. and here come the hypos

Spring in my garden

Has anyone noticed their blood sugar/glucose numbers dropping lately as the Spring temperatures tease us?

Welcome to Spring, where it’s hot, it’s cold, it’s summer one day and winter the next.

We are having our first spell of warm weather this year. It is gloriously sunny and warm… and no rain. This little bit of sunshine gives everybody all sorts of excuses to be outdoors because we have been hiding away from the rain and greyness for months.

The temperature increased by more than a couple of degrees. And then … So did the number of low blood glucose events/hypos I’ve been having.

Not only that but I took a figary to spring clean during this warmness. I didn’t planned it, of course, and on this rare occasion, I didn’t think about my diabetes. It needed to be done and I had the motivation, so I just did it.

I don’t know how many glucose sweets I topped up by or how much chocolate I ate to prevent hypos. Or how many extra centimeters I added to my hips:-(

Temperatures go Up, so insulin doses should come Down.

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.

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.

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.

How I got a CGM

The end of May marked six months since I got CGM’d. WOW! It just flew by. 

Bouncing on the Blood Sugar Trampoline

After two years of persistence, I finally got my CGM on November 27th 2015. When I announced this on social media I has a number of queries about how I managed to get approved and how difficult others were finding their quest.

As always, the one thing that the diabetes community is brilliant at, is sharing knowledge through our personal experiences for the benefit of others. So, here is the story of how I came to have a CGM.

How did this quest begin? Well, it began with an insulin pump (and that was another long drawn out “quest”) in June 2010. I wrote about that journey here on 29th March 2011.

I use the Animas Insulin Pump and as soon as Animas announced that they were rolling out the Animas Vibe with CGM integration in the UK and Ireland, I was on it like sticky on a toddler.

My pump was due for an upgrade in 2014 as the warranty runs out at 4 years and because the pump software would not continue past January 2016. I called my Animas rep to find out how, or if there was a chance that I would get a Vibe as part of this upgrade and she said yes! Great! But wait!

Hiccup no. 1. However, between hearing this information and my next appointment at my endo’s office, my Animas rep, the only Animas employee in Ireland at that time,  took a 12 month sabbatical. That combined with having only 3 visits per year to my endo doesn’t give me much of a chance to get things done. I did get my Vibe in June 2014 and immediately started chasing down how to get the CGM component.

Hiccup no. 2. My Animas rep returned from her sabbatical the following August BUT then my fabulous endocrinologist left her position at the hospital I attend! I decided to use this opportunity to migrate back into public health care for my diabetes. My children were both in primary school and it was doable to fit clinic visits during school hours. I had also heard of a clinic that was only a one hour drive away that had an insulin pump clinic and DAFNE

CGM 9.1

Hiccup no. 3. Fifteen month waiting list!!!!!!!!!!!!!!!! Not kidding! By the time I got my referral sorted out to my new clinic and waited I had been without medical care for 11 months. I was doing fine but I was starting to get a wee bit unsettled. Thankfully, when I called to chase up my referral they squeezed me into the Type 2 diabetes clinic in April 2015 but at least I was in and on the books.

June 2015 – I set up a trial before purchase with a Dexcom CGM for two weeks and I was hooked. And now I had data, with the help of my mathematical husband, to strengthen my case for getting one permanently.

October 2015 – I presented my case and there were a couple of breakdowns in communication but the paperwork was put through to apply for funding approval from the HSE and on the 27th November I was live on a CGM permanently.

It took 17 months to complete this quest, that in the end when I had convinced my diabetes team why I wanted one took 6 weeks. Unlike an insulin pump, the training and education required before a patient goes live on a CGM is minimum. 

In February 2016, an additional piece of this quest was completed and that was the reimbursement of the monthly supply of sensors which comes not from the Core List F of diabetes supplies and medications included in the Long Term Illness Scheme but on the Special Product List. See here for more information.

And that is the complicated story of how I got a CGM. My next post will focus on what I have learn about managing my diabetes by using it and how I will be taking it to the grave with me.

If you want to find out more about what is a CGM (Continuous Glucose Monitoring) device is, watch here. There are two available in Ireland at the moment; the aforementioned Dexcom (with or without the Vibe insulin pump) and the Medtronic RealTime Guardian CGM. The newer Medtronic pumps all come with CGM compatibility but you can get the CGM component without getting an insulin pump.

Being “Diabetic”

I am very privileged to know lots of people in the diabetes community. I also know a lot of people who aren’t particularly bothered about being called “Diabetic”. I respect their choice on that.

However, I am not one of those people. I may have been once when I felt so uncomfortable talking about my diabetes that I felt it was easier and quicker to say “I’m diabetic” rather than say “I have diabetes”.

These days though, the harsh sound of the ‘ic” at the end of the word makes me cringe. It’s like hearing nails scrape across a chalkboard. But I feel the soft “es” at the end of the word diabetes lessens the punch in the guts for me.

The very famous and very talented Kerri Sparling uses the tagline of “Diabetes doesn’t define me but it helps explain me” on her blog Sixuntilme.

I am a wife, mother, daughter, sister, former graphic designer, former payroll clerk, I’m Irish… etc. These are all things that define who I am.

I’m not going to give that kind of power to my diabetes.

I have blue eyes, fair sometimes blonde hair, fair skin, lots of freckles and I have type 1 diabetes. These are things that describe me and they are not all that important. What difference does it make if I have blue or purple eyes. Not much.

So for those who know me, I’m not a diabetic. I have diabetes. And for those who don’t know me I ask that when you are talking to people with diabetes or about people with diabetes, please be aware that some don’t like it. Thanks and appreciate it:-)

Here’s what the American Diabetes Association has to say on the use of this term;

There’s a reason the American Diabetes Association, Diabetes Forecast, and most scientific journals avoid using the term “diabetic” as a noun: People with the disease are diverse individuals, not a single entity. Some people identify themselves as “diabetics” and find that the term provides a useful narrative framework in which they manage the realities of living with the condition. But not everyone feels that way.

Many people with diabetes see the term as stigmatizing. They advocate that the language used to describe the condition and the person living with the condition be carefully distinguished. Another reason “diabetic” should be scrapped? Defining a group of individuals with a similar disease by their condition may prevent others, including family members and health care providers, from thinking about their experiences and needs as individuals.

Ketone – Scary or Not Scary?

**** I am not a health care professional nor do I have anything that looks remotely like a medical degree. So take anything I say with a pinch of salt.

For this piece I have combined information I found on;  Diabetes Daily written By Ginger Vieira on January 4th, 2016, from Beyond Type 1 WRITTEN BY: Kyla Schmieg, BSN, RN and from The Type 1 Diabetes Network Australia Type 1 Diabetes Starter Kit

When I was diagnosed in 1993, I don’t remember hearing the word ketone back then. In fact, I don’t think I hear it until the early 2,000’s. Remember, diabetes education didn’t exist in Ireland before then – not to my recollection anyway.

In my 23 years with type 1 diabetes I have never tested for ketones. Firstly I don’t often get sick. And secondly, when I’m sick I take all the recommended actions that deal with both being sick and flushing out ketones.

Ketone StixHowever, I hear a lot of talk about ketones and began to think that, maybe, I’m a bit too relaxed about them and need to know a bit more.

So, first, what is a ketone?

When our body can’t access glucose, it looks to burn fat for energy. Burning fat results in ketones.   

“Ketones build up can lead to Diabetic Ketoacidosis (DKA). Signs of DKA include nausea, vomiting, abdominal pain, fruity or acetone (think nail polish remover) breath, rapid breathing, flushed skin, and lack of energy.“ http://beyondtype1.org/ketones-the-6-must-knows/

Why are they so scary?

Ketones usually build up in a person with diabetes if they do not have enough insulin taken and can be fatal.

If ketones happen “too much too fast, it is not natural and it’s important to understand that ‘normally’ produced ketones are very different from ketones that develop due to insulin deficiency.

Moderate or large amounts of ketones in your body are very dangerous. They upset the chemical balance of the blood and lead to a condition called diabetic ketoacidosis or DKA. Some people also experience fast and heavy breathing and exaggerated beating of their heart. It is scary! If you experience DKA, you need to go to hospital to be rehydrated and monitored while the ketones in your body reduce to a safe level.

Many people with type 1 diabetes have never had an episode of ketoacidosis, but you may have already experienced DKA during diagnosis. Unfortunately, DKA is life threatening, so you need to understand what it is and what to look out for.” (from the Type 1 Diabetes Network’s Starter Kit page 37)

OK, I’ve got it so far.

This much is easy to follow but when I started hearing about the different type of ketones that were I got a bit lost. Especially when I heard that you can have ketone when you are not sick and have normal blood sugar levels. Until I did this research, I didn’t know if that was a “freak-out” or “not-to-freaky-out” situation.

Different types of ketones.

Illness-Induced Ketones

Illness-induced ketones can be very dangerous for a person with any type of diabetes. People with diabetes who are sick, especially with an infection, a stomach bug, or the flu should always test their ketones while they are sick.

A mild illness can cause low level ketones that are usually not life-threatening or severely serious. If ketones are at low levels, the general suggestion is to consume plenty of fluids and talk to your healthcare team about increasing your background insulin doses.

Even if your blood sugars appear in-range but you are producing ketones when sick, an increase in background insulin can help eliminate the ketones without dropping one’s blood sugar.

On the other hand, a person with diabetes, who is vomiting repeatedly will almost always need to get to the ER as quickly as possible. Vomiting, no matter the cause of the vomiting, will likely induce large ketones and can be life-threatening. Vomiting leads to severe dehydration which will escalate ketones further to a state of DKA.

Since severe ketosis will likely make a person extremely nauseas in addition to their illness-induced nausea, it can be nearly impossible to consume enough fluids at home to re-hydrate the body. An IV drip of saline at the hospital is essential to rehydrating the body, reducing or eliminating ketones, and stabilizing blood sugar levels.

Consult your healthcare team if you have concerns about your state of ketosis.

Starvation Ketones

Starvation ketones are simply the result of not eating enough food over the course of several hours. Both diabetics and non-diabetics can easily produce very low levels of ketones overnight, seeing a faint pink color on a urine ketone strip first thing in the morning. These are not dangerous unless, of course, this person continues to starve themselves.

Nutritional Ketones

Nutritional Ketosis is a state where the body is using ketones as a fuel source efficiently and safely. In individuals without diabetes or in those with controlled diabetes, having insulin on board to maintain healthy blood sugar levels keeps ketone production in the safe range.

This is achieved by reducing carbohydrate-intake to below 50 grams, because when glucose from food is limited, but blood sugars are still in a healthy range and enough insulin is present, the body will begin to burn body fat for fuel instead, producing low levels of ketones in the bloodstream.”

As long as blood sugars are maintained in the normal safe range with insulin, someone with diabetes can very safely be in Nutritional Ketosis.

When you’ve been in Nutritional Ketosis and not even known it:

  • when you skip breakfast and don’t eat until lunch or later, your body is burning body fat for fuel and likely producing low-levels of ketones
  • when babies are born, they are often in a state of nutritional ketosis for the first few days or week of life because they are consuming very little breast milk until the mother’s breast milk production ramps up
  • when you eat a low-carb meal (eggs and bacon) for breakfast and don’t eat again until late lunch or afternoon…or…when you eat a low-carb breakfast followed by a low-carb lunch, your body is producing a low level of ketones until you eat a more significant serving of carbohydrates at dinner, etc.

Can you get ketones with a high blood sugar?

Ketones typically accompany high blood sugar. Ketones indicate your body needs more insulin. Most often if your body needs more insulin, it means your probably have a high blood sugar. Also, when an illness is present, your body releases hormones in response to the stress. These hormones lead to elevated blood glucose. That is why it’s recommended to test ketone levels during illness.

Can you get ketones with a normal or low blood sugar?

Ketones can also be present when your blood sugar is normal or low. These are sometimes referred to as “starvation ketones” or “nutritional ketosis.” During an illness or extreme diet change, if you have a significant decrease in carb intake, this can lead to the body using fat for energy because there are not enough carbs present to burn. Your blood sugar could remain normal or even be low in this case but your body could still be producing ketones.

From; http://beyondtype1.org/ketones-the-6-must-knows/

Conclusion

My conclusion is that, like diabetes, ketones need to be treated seriously. They are not always scary but you need to know why, when and how. And remember, if in doubt call your D-team. A quick phone call equals peace of mind.

Sources of information about ketones;

 

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