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?

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/

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.

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).

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