My World Diabetes Day

For the last three years, I have used the first fourteen days in November, to give a little insight into my life with diabetes and try to dispel some of the myths around the public perception of diabetes on my Facebook and Twitter profiles with my friends, family and followers. Why the first fourteen days in November?

I do it for only 14 days because I'm only human and just can’t do it for the whole month.

But I also bring it to a close on World Diabetes Day, which is November 14th, if you didn’t already know (because of my blasting it in your face;-D). The reason  World Diabetes Day is November 14 is because that is the birthday of one of the creators of my miracle drug Insulin, Frederick Banting.

I make my posts are public so that anyone who is moved can share them and maybe extend diabetes awareness outside of my bubble.

By the way, the symbol for World Diabetes Day is the blue circle in the photo below.

So, in case you missed it, here’s what I posted for those fourteen days.

Day 1 of Diabetes Awareness - Why do I bang on and on about diabetes awareness?

Because it could happen to you! Diabetes can happen to anyone.

I don't want anyone to be diagnosed with diabetes but I also don't want you to die from a missed diagnosis. I would like if all of my nearest and dearest would know 2 things and share it with their nearest and dearest:

1. The risk factors for type 2 diabetes Because many people don’t get diagnosed until they have developed a life altering diabetes complication that may have been prevented.
2. The symptoms of type 1 diabetes are the 4 T’s (Tired, Thirsty, Toilet, Thin) It may prevent someone from ending up in ICU or even save someone’s life. Mine was.

You can read a more detailed post on why exactly I choose those two topics and who I target here.

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Day 2 of Diabetes Awareness - What is Diabetes?

Diabetes is when you have too much glucose in your blood because it can’t go where it’s suppose to.

- The food you eat is broken down into glucose or sometimes called sugar. - The glucose is then absorbed into your blood. - Then, it should move into each of your body's cells and become the energy we need to live. - Insulin is the key to opening the door to those cells and allowing the glucose to enter.

In diabetes:

• If insulin doesn't work properly all the doors are locked or don’t always open when they should and the glucose is trapped in your blood.
• Type 1 diabetes your body doesn’t make insulin, so the doors are locked.
• Type 2 diabetes your body cannot properly use the insulin it produces and so the doors have faulty hinges.
• If your body can’t get energy from the glucose it looks to the fat stores for energy and when this happens in large amounts it produces a toxin/poison called Ketones.
• Too much ketones cause your organs to shut down.

There are more types of diabetes out there and you can find out more here.

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Day 3 of Diabetes Awareness - Who can get diabetes?

Anyone!!! Any age! Any lifestyle!

The most common diabetes in childhood is type 1 but that does NOT mean adults don't get it too. In fact, 50% of all diagnosis of type 1 diabetes happen to people over the age of 30!!!

The most common diabetes in adults is type 2 but that doesn't mean that children don't get it too. 40% of people who are diagnosed with type 2 diabetes are fit and healthy.

Again please know the risk factors for type 2 and know the symptoms of type 1 diabetes.

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Day 4 of Diabetes Awareness - The diabetes jokes aren’t funny.

They’re insensitive and hurtful.

It’s not that we don’t have a sense of humour. We do! Seriously, We do!!! We joke about pricks all the time... finger pricks. We joke about getting high on Lucozade or Fanta.

Jokes about ""eating cake that gives you diabetes"" show that you have limited knowledge about diabetes. So just don't repeat the joke.

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Day 5 of Diabetes Awareness - Did you know that; ALL types of diabetes are bad!

There is not a "good kind" or a "bad kind": all types of diabetes can make life unbearable and can kill you.

All types can cause diabetes complications. Needles really are not the worst thing about diabetes.

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Day 6 of Diabetes Awareness - Did you know that; Managing diabetes is a lot harder than it looks or that some people would have you believe.

Taking care of my diabetes is a lot of work and it takes up a lot of space in my brain.

Balancing food, medication, activity, hormones, and all the other factors that influence glucose levels is not easy. I can only measure/control some of those factors some of the time which means no two days are going to be the same with diabetes.

And it makes me crazy when healthy foods have a crazy effect on my glucose levels!!! It's enough to drive me to cake:-)

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Day 7 of Diabetes Awareness - Did you know that; There are NO stereotypes for diabetes.

Adults get type 1 diabetes, not just children. In fact 50% of all the type 1 diabetes diagnosis are OVER the age of 30 years.

Young, fit and healthy people get type 2 diabetes. In fact, 30% of people who are diagnosed with type 2 diabetes do not fit the stereotype. Know ALL the risk factors!

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Day 8 of Diabetes Awareness - Did you know that;  Insulin has been available for almost 100 years and people STILL die from diabetes!

WHY?

• People with diabetes die because in some countries they can't afford their medication. #Insulin4All. In some countries, children with type 1 diabetes don't expect to become adults.
• They die because a diagnosis has been missed and thought to be the flu.
• They die because they haven't been taught to manage their condition at all and develop life threatening complications.
• They die from Dead in Bed syndrome.
• They die because they have been ill and developed life threatening DKA while ill.

Insulin is not a cure, it's a treatment that allows me to have a life. But it doesn’t beat having a working pancreas.

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Day 9 of Diabetes Awareness - Diabetes is not something that a person did to themselves.

There are a number of risk factors that play a bigger part than the lifestyle choices you make. Yet, people with diabetes are made to feel that they are to blame. And that should not happen!

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Day 10 of Diabetes Awareness - If someone you know is diagnosed with diabetes, please offer them support not judgement.

Ask us what we need. Don't lecture or nag. It’s not helpful. Don't ask if our glucose numbers are good or bad. It is what it is. Don’t focus on what we are not doing, instead see what we are.

Find more tips on how to support someone with diabetes here.

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Day 11 of Diabetes Awareness - Did you know that; Yes, You can live a normal life with diabetes BUT!!!!!

It requires extra planning and thought.

See image below. Nothing can be spontaneous!

Image source from a book called One Lump or Two - Haidee Soule Merritt is the artist ❤

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Day 12 of Diabetes Awareness - Did you know that; About ⅓ of all people with type 2 diabetes do not know they have it.

And that Type 2 diabetes often does not have any symptoms.

Find out here if you are at risk from this online assessment.

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Day 13 of Diabetes Awareness - A lot of times I eat sweets/candy because I have to.

Not because I want to, or would like to. And a lot of times I hate that I have to!

Sometimes I hate food because the math I have to do to eat is mentally exhausting! Last night, my glucose levels dropped and I knew I would have to eat something sweet. It’s happening a lot lately and I’m still trying to adjust my medication to avoid it. But as a result I am so sick of glucose tabs, skittles, jelly beans and jellies.

It was long after dinner and I was full. I hoped for a delayed rise in glucose from dinner. It didn’t happen. I had to eat the jellies even though my stomach just wanted to spew them back out.

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Day 14 of Diabetes Awareness - IT’S HERE!!!!

Happy birthday Fred!

Today, November 14 is World Diabetes Day. #WorldDiabetesDay.

I have been posting some diabetes information for the last 14 days to spread more awareness about the symptoms, risk factors and living life with diabetes.

And Today I celebrate;

• One of the men who is responsible for me being alive, Frederick Banting, whose birthday falls today.
• Being alive. I celebrate the advances there have been in diabetes technology and care, even since my diagnosis 24 years ago.
• And I remember why I will continue to advocate for better health services for all people with diabetes.
  • In 2016 there were over 500 amputations related to diabetes complications. This is not acceptable and can be prevented with more podiatrists.
  • 50% of all vision loss in Ireland is due to complications of diabetes and the same with kidney disease.

And now I take a nap until December:-)

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?

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.

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;

• “Sex, Pods & Rock n Roll”, a panel discussion with lots of audience participation. The panel was made up of Diabetes Sister; Cindy Campaniello, Thriveabetes 2016 Speaker; Gary Scheiner, Karen Graffeo and Christel Marchand Aprigliano
• Anxiety, Depression and Diabetes and a second session by the same speaker, Be the CEO of your Healthcare by person with type 1 diabetes and clinical psychologist, Nicole Bereolo.
• Charting your own patient journey by Sara Wyen founder of Blood Clot Recovery Network.
• Making use of the glycemic index by Gary Scheiner. I still have so much to learn!!!
• Diabetes and Technology by Melissa Lee
• Life is sweet by Shawn Shepheard Sugar Free Shawn Show

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?

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

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/