Blood Sugar Trampoline

Living with Diabetes is like Parenting

My life is finally slowing down after a number of weeks of events, diabetes awareness “stuff” and children being off school for mid term break. I have so many blogs posts in my head and no time to write them. But soon…

In the meantime, while I was fast asleep, my husband had a moment of inspiration about living life with type 1 diabetes and what common human experience might come close to describing the type 1 diabetes experience? Yes, there are a lot of questions to ask about why I was asleep and he wasn’t but not for publishing online 😉

So here is a guest post from my hubby.

Gráinne was away at a conference recently, presenting the “patient experience” to a group of 100 almost entirely healthcare professionals. She came home the first evening very excited by not only how well her talk was received, but the general tone of the conference in general.

I’m sure she will fill in details about the conference in a separate post, but I wanted to write a quick blurb about something that struck me at 3am (don’t ask): how does anybody gain insight into the life of a person with type 1 diabetes in an effort to build empathy?
The intellectual approach of explaining all the things one does to manage type 1 is important but somehow inadequate.  Living with (and sleeping next to) a person with diabetes (PWD) can give you some insights, and loving a PWD to the extent where you have some of the same fears and worries they do at a very emotional level yields a whole new level of insights.
But such experiences are hard-earned and not wholly practical. To start with, I’ll take issue with others sleeping next to my wife on anything other than an exceptional basis 🙂
What struck me is there is a very common human experience that might come close to describing the type 1 diabetes experience: parenthood.  I may not have diabetes, but I live with somebody who does.  And…I am a parent of two pretty amazing kids.
What can parenthood do to help build empathy for those living with type 1?  Let me share a partial list:
1. Say goodbye to a reliable full night of uninterrupted sleep.
Even in her pre-CGM days, Gráinne would wake up in the middle of the night not feeling right. Her sugars could be high or they could be low, or she could just be coming down with something. Regardless she had to check her sugars and then decide how to react to the information.
I wouldn’t say it’s quite like having a newborn baby, but it’s pretty close to having a 6 month old baby who can’t reliably settle. But without the option of seeing if the baby will be able to settle herself…and without the possibility that the 6 month old baby will grow out of it.
2. There is no rulebook.
 
A new parent is often desperate for a manual on “how to be a good parent.”  What you learn as a parent is that every child is unique and has their own set of needs. You just need to figure out what works best for the child in front of you at the time. And of course what works for a two year old is not what works for a twelve year old: the “rulebook” for parenting is forever changing.
Type 1 seems to work in much the same way. There are so many variables in life that what worked for you last week may not work for you this week. You just take on whatever challenges type 1 throws at you, and deal with them in the best way your sleep-deprived, hypo-affected brain can manage.
3. Frequent guilt.
 
We’ve all as parents done things that we regretted. Maybe it was giving a punishment that was in retrospect overly harsh. Or maybe we’re worried that we’re being too lenient, or not helping our child learn lessons the hard way because we’re spoon-feeding them the answers.  Or maybe our child is struggling in school, or struggling socially, or trying really hard in a sport that they love but are lacking the skills to be really good at…and we feel somehow responsible for this and guilty that we’re failing them as parents.
If you have type 1, guilt about “not managing your diabetes” seems to be there. Always. That bit of extra chocolate you had because it looked nice? Unless you accounted for it perfectly (and see point 2: you probably didn’t account for it perfectly because there is no rulebook), you’re probably going to see the result of that “indiscretion” in your blood sugars. Not getting the HbA1c result you hoped for?  More guilt and self-loathing.
4. Low-grade worry.
As parents, we often worry about our children’s future. Some of these things are those over which we have control (and feel guilty about doing “wrong”). Others are longer-term things over which we have no real control: is the planet going to be habitable by the time my grandchildren are born? And every so often, we think about our own mortality: what would happen to our children if Gráinne and I were to die unexpectedly?
These aren’t necessarily things that keep us as parents up at night (those are more the “guilt” topics!), but they are the things that can weigh on the mind of a person with type 1. Mortality is a much more real presence in the life of someone with type 1: the very medication that is needed to keep you alive can also kill you (or worse).
5. Lots of “outside” advice
 
New parents (and experienced parents!) are often awash in advice, both solicited and unsolicited.  It is advice commonly wrapped in “you should” and “never” and “always”…very emotionally charged terms.
 
Have you ever talked to a mother who wants to breastfeed but wasn’t able to make it work for whatever reason?  Feeding her baby with a bottle can bring on a whole world of emotions with that simple act of providing nourishment to her child, and that’s before the very “helpful” commentary from some well-meaning individual: “breast is best!”
The world of diabetes management is awash in advice, much of it from medical experts and some of it from crackpot experts who read an article about “how cinnamon can cure diabetes” or some other such thing. But much with parenting, what a PWD must do is learn to figure out what advice is helpful to them and use that, whilst figuring out how to deflect and ignore advice that does not.
There are more parallels between “parenting” and “managing type 1 diabetes,” but this has hopefully given a taster based on my perspectives as a “diabetes insider-but-outsider.”
There’s one thing, however, that is DRAMATICALLY DIFFERENT FROM BEING A PARENT.  Parents do not have any sort of scorecard. I mean okay, if you have killed your child violently are severely neglecting them to the point their health is in danger, you’ve clearly failed as a parent…but beyond that parenting is pretty much a “pass” sort of proposition…our children grow up, leave the home, and succeed (or fail) largely on their own effort, merits and socioeconomic position.
But in the world of diabetes…there are all sorts of numbers. The most notable one has been mentioned here a few times: HbA1c, or the “time-weighted average blood sugar over the past three months.” Doctors have historically focused on this number which is about as useful for an individual as the Body Mass Index (which is to say: not terribly useful).
With the advent of CGM and FGM technologies, they’re now starting to focus on “time in range” which is arguably a better indicator of overall diabetes management and overall health, but it also somehow fails to account for the fact that there are just so many factors over which a PWD has no control.
That’s the thing: most PWD who are armed with the best of knowledge, tools, and medicines will struggle to achieve their target HbA1c or time in range.
Imagine if we were to devise a “parenting index” for each and every parent, as a value between 0 and 100, and we set it up in such a way that it’s pretty much impossible to get a 100, or even an 80. Why? Because your children have a mind of their own, you can’t control them 100% of the time, there are people other than you influencing their lives, and you’re human so will make mistakes.
But you as a parent know that “100” is the best possible score, and so you try really really hard to get 100…you’re trying to do everything the experts say you should be doing, you’re spending lots of money and time to achieve perfection and love your child like no parent has ever loved their child.  But year in and year out, you struggle to get a score over 60. Your best ever score was a 77.
And now ask yourself: Are you a failure as a parent?

Learning about the Diabetes Technology Space

Two weeks ago, I went to the DiabetesSisters Weekend for Women conference Alexandria, Virginia. See disclaimer at the end.

One of the outstanding presentations I attended was Melissa Lee’s “Diabetes and Technology”. Melissa is a respected blogger @SweetlyVoiced, patient advocate, former acting CEO of the Diabetes Hands Foundation and tech editor of ASweetLife online magazine. Qualified – YEP!!

Some people might assume that the word “Technology” means the discussion would be around Apps, Smartphones and computers. But in reality, people with diabetes have been using “technology” since insulin was first discovered. I would consider the topic of Diabetes Technology to include every device we use from the humble BG meter, insulin pens all the way to the DIY closed loop.

I met Melissa In 2015, when I was a scholarship winner at the MasterLab DHF conference and she was their acting CEO. She was diagnosed with type 1 diabetes in 1990 at aged 10 and is well known as a diabetes device diva.

She started her presentation with the basic Finger Pricker. I never thought about it before but there is so much more out there now in terms of what a glucose meter can do. For instance;

 

GLUCOSE METERS (The Finger pricker ones)

We have meters that are Bluetooth capabilities, connected to apps, built in bolus calculators , maybe even synced to an insulin pump, as well as the strips housed in the meter. I was actually late for Melissa’s presentation as I was talking too much with my breakfast companion 🙂 and only came in at the end of this slide so I can’t say anymore about it.

However, In Ireland, we have lots of choices when it comes to meters;
Ascensia Contour, Glucomen, Abbott Freestyle, Lifescan OneTouch range, Roche Accu Chek range for starters. All have websites that you can google for more information.

 

Next up; CHOOSING YOUR THERAPY

What are our choices in how we treat our diabetes? If we didn’t consider accessibility it would be this;

Download (DOCX, 14KB)

More on all of these below.

 

INJECTION PENS

The traditional injection pen is about to get a complete overhaul. We already have pens such as the NovoPen Echo and NovoPen 5 with memory function which has the ability to record hours since the last dose and amount of units. We also have caps that a fix to insulin pens to give you this information such as Insulcheck and Timesulin.

However, CONNECTED PENS will become a new standard in the not too distant future.

Companies such as Timesulin and Irish company Innovation Zed’s Insulcheck realized early on that the majority of the insulin dependent population uses pens and that there is a huge potential for innovation here.

In the next couple of years we are going to see Smart Insulin Pens which are connected to an electronic logbook app and will record the timing of insulin doses, how much and carb intake, etc. I really think this is going to make a difference in so many people’s lives.

On July 12, both Novo Nordisk US and Glooko announced the first jointly developed product from the two companies since announcing their collaboration in January 2017.

See more information on the progress of these devices here;

 

INSULIN PUMPS

I spotted some research funded by the Health Research Board that estimates that only 14% of adults with type 1 diabetes in Ireland are using an insulin pump. This is not surprising but it’s nice to have a number. At the moment there are two pump companies available here as per HSE Contracts.

They are;

  • Medtronic
    • MiniMed® 640G
    • MiniMed® Paradigm VEO
    • There are older models available but not widely.
  • Animas
    • Vibe.

In the UK there are also the Roche Accuchek and the Omnipod. In the US there are only three insulin pumps companies on the market; Medtronic, Omnipod and Tandem.

With the foreseeable closure of Animas UK and Ireland I would consider the Irish insulin pump market to be an open one.

 

GLUCOSE SENSING (CONTINUOUS AND FLASH)

SENSING NOW

Melissa shared that only 10% of type 1 diabetes population in US using a CGM. The Freestyle Libre just got FDA approval but it’s not on the market yet. I would estimate that this is much, much smaller in Ireland, even with the Libre.

Here’s what we seem to have in Ireland;

From Medtronic

Pump with CGM

  • Guardian™ 2 Link transmitter is only compatible with MiniMed® 640G insulin pump
  • MiniLink™ transmitter is compatible with MiniMed Paradigm® Veo™ system and Guardian® REAL-Time CGM
  • Stand-alone CGM Guardian® REAL-Time CGM system

 

From Dexcom

  • G4
  • G5 with Clarity app,
  • both integrated with the Animas Vibe

 

Abbott FreeStyle Libre

  • not integrated with any pumps or pens…. Yet and no app integration yet.

 

SENSING FUTURE

Dexcom G6

Medtronic 670G sensor more accurate and reliable than their current

Roche CGM Senseonics Eversense

  • accurate
  • implantable in doctors office.
  • Transmitter worn over the sensor.
  • Not waterproof.

 

APPS

There are a tonne of apps out there for diabetes. You will find one that meets your needs but it will take time and effort. There are apps where you manually do all the logging and there are apps that are synced to your devices.

There are also Apps such as Tidepool and Glooko, where you can upload all your devices too – neither are synced to my knowledge but I’m still researching this. This is a useful blog post on Tidepool from Test, Guess and Go.

The most used app in the diabetes community seems to be MySugr and in Ireland, both the “Carbs and Cals” and the “MyFitnessPal” apps are used widely.

Ideally, I would like a one4all app that syncs all devices. Still looking.

 

DIY SYSTEMS closed loop

What is closed loop? We have insulin pumps where we manually tell it how much insulin to give us and we have CGM’s that tell us what our glucose levels are at at any time. Closed Loop is creating the missing piece that allows the CGM to talk to the Insulin pump and tell it what to do.

Diabetes companies are working really hard to package a complete Closed Loop System, however, a couple of talented people have already done it by hacking the devices and creating a computer programme which they have shared online. In effect, people are creating their own DIY Closed Loop Artificial Pancreas. #Wearenotwaiting

There are two Automated insulin delivery systems;

  • Loop
  • OpenAPS

One of the benefits of automated DIY over smart pumps is that it gives you More control over your own perimeters.

Melissa has been using the Loop version for two years and showed us how the system changed her basal rates automatically 100 times the previous day. How can a human possible even try to do that manually????

I’ve been following Diabetogenic’s journey with The Loop to find out more.

 

THE FUTURE

The best thing about moving forward in diabetes tech is that so many companies are doing stuff here.

  • Tandem, Dexcom and TypeZero are working together on the integration of their technologies into the NIH-funded International Diabetes Closed Loop (IDCL) Trial.
  • Tandem is working on development of an insulin pump that integrates the data from a Dexcom G6 sensor and Type Zero’s inControl algorithm directly into the pump’s touchscreen interface.
  • Omnipod Dash coming to US in 2018 and integrates Bluetooth into the body-worn, tubeless pod, and use a transformed, locked down Android smartphone for functions currently performed on the personal diabetes manager (PDM) handheld device.
  • Omnipod Horizon Automated Glucose Control System (to automate insulin delivery with Dexcom CGM) is slated for a “late 2019” launch.
  • Beta bionics plans to launch it’s iLet artificial pancreas in 2019 but just insulin only followed soon after by dual hormone (insulin + glucagon) version.
  • Bigfoot Biomedical automatic basal adjustments system completed clinical trials last year and is launching the next phase clinical trial in 2018.

In a nutshell, there is A LOT to watch!!! This makes me happy because there is a lot of research happening in this industry and a lot of investment.

 

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;-)

How did I end up there?

Diabetes Sisters There’s nothing like a Diabetes Conference

Last weekend, I went to the DiabetesSisters Weekend for Women conference Alexandria, Virginia.

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;-)

There’s nothing like a diabetes conference! Seriously, diabetes conferences are like walking into a warm hug. A zone in which being a pwd is normal and your diabetes jokes get laughed at. It’s the, nobody bats an eye when there beeps sound off in the room because everybody knows what the beep is and no explanations or apologies are expected/offered/needed.

We speak the same language. You are surrounded by so many people with diabetes, there is so very much to talk about and for me, it’s very, very, very difficult to leave when the conference ends. But then once I’m home with my family it’s all good again.

 

Ignore the typo

How did I end up there?

Well a couple of months ago I saw that The diabetes sisters organization was offering scholarships to attend. I also knew that this was a joint conference with the Diabetes Collective DUnconfernce. I have been following both of these events/organizations since they began. I applied! I really wanted to go! I’d figure out the rest later (Shawn Sheppard 🙂

Then, a month later I bought tickets for a show at home that I was dying to see for that very weekend. Either way I was going to have fun that weekend! I won the scholarship and found a new home for the tickets to a sold out show.

The idea of traveling across an ocean just to spend a weekend with people with diabetes might seem a lot crazy to some but when you know for certain that you will come away with so much more in your brain and heart it’s not.

It’s always a good sign when you register for a conference the first person you met you know. Then I met my roommate who googled how to pronounce my name :-O The loveliest room mate ever.

What was it like?

Exactly as described in my opening paragraph. Good for the heart, good for the head and good for the soul. The speakers are all people who are doing amazing things, not all had diabetes and not all were health care professionals. The information and the sharing of experiences in the room was so valuable. I will write more posts about what I learned in some of sessions in the following weeks.

However, the stand out sessions for me were;

And of course, the very best part of a diabetes conference is hanging out with the 150 other people there who had diabetes.

The Death of the Animas Insulin Pump

Last week, Johnson & Johnson Diabetes, who own Animas, announced that it was “exiting” out of the insulin pump business, effective immediately in the US and Canada. And eventually in the rest of the world.

Once I read all the way down the press release to realise that it was just USA and Canada for now, I was relieved.

Then I was seriously miffed, but not completely surprised. Since the Vibe insulin pump was introduced, a number of years ago, innovation seemed to have stalled within the company. Johnson & Johnson own both Animas and the glucose meter company LifeScan/OneTouch but they didn’t even innovate between these products, not even to do what all others were doing and that was to sync products via Bluetooth or whatever internet cloud magic they choose. One might even say they really checked out of the diabetes industry a long time ago by their lack of interest.

So, what does this mean for us in Ireland? And what does this mean for me an Animas Pump user?

I have been using an Animas pump since my pumping beginnings in 2010. Then in 2014, I upgraded to the Vibe and in 2015 I added the Dexcom Continuous Glucose Monitoring System (CGM) to it. I didn’t choose which insulin pump I would have, it was chosen for me, but I didn’t have any complaints. In fact, it’s been a great relationship!

Now I’m trying to think ahead and I realised that in the not too distant future I’m going to have to find a replacement for my insulin pump.

What are my choices in pumps? Do I actually have a choice, when the only other insulin pump my health service has a contract with is Medtronic? Yes it’s probably a good pump but I don’t want to be forced into it.

BUT it’s not just my pump I need to consider!

This also effects my CGM device. How will my new pump interact with my current CGM, if at all? My Dexcom receiver IS my insulin pump, meaning that my glucose sensor transmits the information straight to my pump. So I need to either get a new receiver device or change CGM’s.

And then, there’s my glucose meter which I was also able to upload to my insulin pump software programme which allows me to create useful graphs that help me make better decisions about my daily care. All of my information, from all of my devices is uploaded to the same place where I can see it all and it was easy!

Will I need to change both of these devices to make life easier?
What will the overall software platform be that I use?

I want to be able to upload/Bluetooth/cloud sync all my devices to the same place!

I want to use whatever d*** device I like best. And I really don’t like that I have to research all of this when managing diabetes is enough work already.

The Flu Vaccine what to do?

Photo credit Pixabay.com

Every year, around this time, I have a conversation with myself about whether or not I should get the flu vaccine. And every year I make a different decision. Two signs of insanity right there; talking to myself and complete indecision. Whose worried? Not me! Oops, there I go again, talking to myself.  😆

Should everyone with diabetes get the flu vaccines? Well that is completely totally up to you.

So far, I’ve only gotten it once and that was the winter I was pregnant with my now 13 year old daughter. Since then, I maintained that if it’s not broke don’t fix it and I never get flu so I didn’t bother.

Except last year, I had clocked up one or two flus that knocked me out for a week at a time, I decided that I was going to get it. However, when I went to my GP, I already had a cold and decided to wait but then never got around to it. I’m not sick very often so I figure the odds are still on my side. I do know as I approach 65 I will decide that I’m better off vaccinated.

This year I’m still undecided but maybe swaying towards the “I will” side.

If you are like me and still thinking will I, won’t I, here’s some additional information for about it

IS THE FLU VACCINE FREE FOR PEOPLE WITH DIABETES?

“Yes” and “No” because nothing is ever straight forward in our health system.

Yes, the flu vaccine itself is free to everyone in the “At Risk” groups which includes people with diabetes.

No, because if you do not have a medical card, a GP services card or a HAA card, you will have to pay for someone to jab it in.

A lot of pharmacy chains offer the flu vaccine so you do have the option to walk into one of those and have it done there and then without making an appointment. Next time you are collecting your diabetes supplies you can ask.

 

Pneumococcal Vaccine

Photo credit HSE and Diabetes Ireland, MSD

It’s also worth mentioning that the HSE have also launched a Pneumococcal Vaccine campaign which shouldn’t be confused with the Flu vaccine. I would like to thank our guest speaker, Paul, from our last diabetes support group meeting for clarifying this information for us.
WHAT IS THE Pneumococcal Vaccine?

“Pneumococcal disease is an umbrella term for a range of illnesses caused by a type of bacteria called Streptococcus pneumoniae (also known as the pneumo bug). It is a major cause of serious infection that can lead to death, particularly amongst the elderly, the very young, those who have an absent or non-functioning spleen, those with long term medical conditions*, or those with weakened immunity.”
SOURCE

However, the pneumococcal vaccination is USUALLY A SINGLE VACCINATION (ie once in your lifetime dose) for those at-risk. The most at risk group are children under age 2 years and adults over 65. Once you get it once you should be protected for the rest of your life. There are exceptions to this guideline so if you would like to know more ask your GP or visit http://pneumo.ie/

The CGM Conversation is Changing

The general consensus around the availability of continuous glucose monitoring (CGM) systems in Ireland among patients and health professionals is that they are only for the select few. And while this may be somewhat true I believe that this conversation will change very soon.

By the way, do not be put off by what I just said about them not being available right now; if a CGM is something you feel would make a difference in your diabetes management then go for it! Here‘s a post I did soon after I got mine on how I got it.

** Another by the way I would like to mention is that nobody pays me, in any way, to say what I say in my blog posts. All opinions are completely my own.

Why do I think that the conversation around CGM’s is changing?

Well three reasons and I’m starting with the most powerful but least heard reason;

1.The conversation is changing because of our (people with diabetes) voices!

More people with diabetes are using CGM’s. Not many more. But more! More people with diabetes know that such devices exist. More newly diagnosed people with diabetes are hearing about it sooner and from outside the healthcare environment. More people with diabetes are talking to each other about the benefits they find using a CGM. And we are bringing all of that information back to our health care providers where they will get tired of saying “no”.

2. The conversation is changing because of the Abbott Freestyle Libre!

Since the Libre Flash glucose monitor came onto the scene, even more people with diabetes have access to their 24-hour glucose profile and a lot more front line health care professionals are seeing the benefits to their patients in having this information. Up until the launch of the Libre, only a few of us could share how much having a 24-hour glucose profile helped us manage our diabetes better. I feel we were considered exceptional patients but the reality is that we were just making better informed decisions. With more and more people having access to 24-hour glucose profile, be it via a CGM or the Libre, the exception is now becoming the rule. 😉

3. The conversation is changing because of new research from the medical community!

Our health care providers are starting to listen to us. There are many, many more clinical trials proving that CGM improves our lives with diabetes and there are more clinical trials and studies are using CGM’s to get a more complete picture of their results.

Just last month, there were two Clinical research papers on CGM’s were published;
– One from JDRF states CGM use during pregnancy lead to healthier babies and healthier mothers.

– The other research paper came from the EASD in Lisbon, Portugal — “Use of real-time continuous glucose monitoring (CGM) produces significant long-term improvement in HbA1c among adult patients with type 1 diabetes, regardless of whether they use insulin pumps or multiple daily insulin injections (MDI)

– February 2017 – Clinical Study Confirms Continuous Glucose Monitoring is as Safe and Effective as Blood Glucose Monitoring

– September 2016 – The Future of Diabetes Clinical Trials; Continuous Glucose Monitoring

– Have a look at DiaTribe’s Beyond A1C video.

All the voices in favour of the benefits or CGM are growing louder and louder and coming from more than just the patient community. They cannot be ignored for very much longer. The governments of the world will see it as wise to invest in cgms and save on treating diabetes complications later. And we, the people living with diabetes, are driving that conversation. 🙂

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

My children have been back to school for almost two full weeks now and since their first day back I’ve been spending a couple of hours most days planning Thriveabetes 2018.

A month ago, at our fundraiser, I was asked to explain what Thriveabetes is, why people with diabetes need it and why I was asking people to give money to it.

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

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

Here’s what I said;

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

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

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

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

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

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

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

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

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

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

This is why Thriveabetes is needed!

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

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

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

Parenting and Adult-ing with type 1 diabetes

When my children were younger, I was asked a couple of times about how I balance life as a mum and life as a person with type 1 diabetes. It was definitely a challenge to juggle parenting with anything but that’s not news to any parent.

Now that my children are older (13 & 11) I can look back on what were the tough parts and what were the “advantages” of being a mum with type 1 diabetes.

I still can’t believe that my dysfunctional and broken body created two healthy and outstanding humans. I never forget how lucky I am and always remember that not every one who decides they want to be a parent gets what they want and sometimes it doesn’t happen the way you thought it would.

Being a mum is a challenge and it’s wonderful! I love it!!! I can say that now because I don’t lose as much sleep these days as I did when they were younger. 😉 In fact, there has been an occasion or two where I’m asleep before they are.

Being a person with type 1 diabetes is a challenge too! Actually at times, it’s a nightmare, completely exhausting but mostly it’s a giant pain in the backside.

So what’s it like to combine the challenges of being a mother AND having type 1 diabetes?

Well it’s doable. And hopefully, you have adjusted to life with diabetes before motherhood is thrown in there or vice versa.

I had type 1 diabetes before I became a mother. So while diabetes didn’t effect my decision to become one, it did make me hesitate and come up with a plan for how it would happen and how I/we would try to manage my pregnancy. Once, myself and my husband decided that we were in a good place to start a family, we didn’t jump straight into trying. Instead, I made an appointment with my endocrinologist to talk about how we would get my body ready for it and how my dysfunctional body was going to grow a healthy human successfully.

I’ve written a couple of posts over the years about what pregnancy was like with type 1 so I won’t bore you again. You can find one here, one here and another here.

 

How does type 1 diabetes affect motherhood?

There may be an element of “the grass is greener on the other side” here. So, I could be wrong about this but I feel that mums with type 1 diabetes don’t think quite the same as mums who don’t. Mums who don’t have diabetes seem to forget that they need to take care of themselves, as well as their baby. They seem to neglect their well being without life threatening consequences.

As a mother with type 1 diabetes, the first time I had a hypo while my baby was simultaneously screaming crying, it made me realise that diabetes has to stay high up on my list of priorities. It was well up there when I was growing this tiny human, but then I was so exhausted from it and new baby life I thought I could let it slip down the list a bit. But no, that was not to be.

Type 1 diabetes and being a mum is an all hands, whatever hands are available, condition. It means realising that when my diabetes needs attention it needs to get my attention first.

It means that family fun days out may get interrupted by low blood sugars despite elaborate planning. It means that dinner might get delayed because of low blood glucose levels.

It means that I can’t answer 300 toddler questions right now because I have to treat a low. It means considering if you want or should teach your child to use a phone and dial 999. In my house, it meant that my preschoolers taught their class mates about carbohydrate while the teachers taught healthy eating. That was kind of a Mum-Pride moment though!

It means that at dinner time, we wait for everyone to sit at the table before we eat but we don’t wait for mum because she has to check her glucose levels and work out her insulin.

It means that there is always, ALWAYS, a concern that I won’t get to see my children grow up. It means that I will alway feel I owe it to my children to look after my diabetes as best as I can so that it never takes any more of me from you. It means that I worry that you will be burdened with looking after me and my diabetes when if I am unable to do it as I get older.

However, I feel that being a mother with type 1 diabetes means that I have taught my children about the value of health, that being good to yourself means eating nutritious food and being active. Being a mum with T1D means that I know a little more about nutrition than the average person. In my warped sense of thinking I feel that my diabetes has made me a better parents and my children healthier.

Blood Glucose Darkness

I’ve been using a continuous glucose monitor (CGM) since November 2015 and it has made a huge difference in my diabetes management. It has narrowed the glucose swings so much and it has been a huge relief in my anxiety relating to trying to avoid hypos. And I have worn it 24/7 since I got it.

Last Friday, I had an MRI on my stupid 83 year old hip (another story) and I had to take my sensor off. So I decided to go the whole weekend cgm-free. I thought it would be nice to have a break from the alarms and just see how I got on.

I felt completely blind! I had no idea what my glucose levels were between finger prick checking and it was a huge loss of information. I felt I was making decisions with my insulin without all of the information.

That evening, I went to bed with a respectable glucose 8.8 mmols/L to be woken at 3am by perspiration steaming off my body of a glucose level of 2.8 mmol/L. I tried not to consume the entire kitchen and lay across the couch willing cold air to descend on me and cool me down.

Twenty minutes later, with glucose levels at 4.8 mmols/L and probably shooting for the sky in a rebound high, I had recovered enough to go back to bed. I woke with a glucose level of 11.5 mmols/L which was lower than I expected but still too high. At least, I was spared the high alarm during the rest of the night.

 

I can’t believe that I used to think that I was doing fine on the information provided by 7 finger prick glucose checks per day! Using a cgm has taught me so much about how to manage my diabetes, it has taught me about creating more effective insulin doses and it has given me more power over my life with type 1 diabetes.

This piece of technology is really valuable for people with type 1 diabetes. However, I do realise that it isn’t something that everybody would want or can get. I believe that availability will change in the near future though as more and more health care professionals realise its value in providing information beyond HbA1c’s also.

Even The Best Laid Plans Go Awry – Insulin Pump Site Failure

I wrote a post a couple of months back about traveling through multiple airports and how I fared with my insulin pump and my cgm (continuous glucose monitor) at each one. You can read it here.

It was a good practice run for our trip to the US in July. I had everything ready.

But, as the whole world knows, the best laid plans can sometimes go awry. Type 1 diabetes it is no different.

The night before our flight to America I did a set change on my pump. This means I change to a new cannula site and fill up a new insulin reservoir. I know I really shouldn’t do set changes at night because of the risk of pump site failure but my mornings are usually rushed and it makes more sense for me to do it at night.

Plus I have the added security of wearing a CGM. I was definitely glad for it on this occasion.  My cgm (continuous glucose monitor) alerted me to high glucose levels so I did not wake up in DKA (Diabetic ketoacidosis) and miss my flight.

When The first alarm went off, I figured it was travel related stress. And it’s not unusual for my glucose levels from dinner to linger into the night. The second time, I thought that’s odd, my glucose levels have gone up. I did a second correction bolus of insulin. But when it went off a third time at 5am and my glucose levels weren’t going down at all, I wasn’t taking any more chances. I inserted a new pump site and did a new correction bolus of insulin and, thankfully, an hour later when it was time to get up and get out to the airport my glucose levels were coming down.

I dread to think how I would have felt if I hadn’t been using my cgm. I had a pump site failure once before from a bent cannula before I my days of using a cgm. I woke with a glucose of 25!!! And I felt so sick for most of the day, even though I had figured out the problem by lunch and started using my emergency Novo pens. I can’t bear to think how I would have dealt with that if it happened the morning of our flight. In Short, I don’t think I would have been on my flight that day!

Thankfully, I’ve only had two insulin pump site failures in the seven years that I have been pumping. The most recent one could have put a real damper on my holidays if it wasn’t for the cgm (continuous glucose monitor). The “what if” makes me shudder.

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