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 Mother need support not hate!

I've just written a letter to the Editor of the Irish Times in response to the public reaction to the article linked below. I can't stop thinking about this woman and here's why;

"Sir,

I read "Diabetic girl must be given insulin despite mother’s stance" (2nd October) late last night and I thought about this woman going to bed. I awakened early and she was the first thought that entered my head.

Isn't it conceivable that this woman is so desperate, so exhausted and so depleted of hope that there could be any positive outcome from a type 1 diabetes diagnosis that it has rendered her paralyzed to help herself or her daughter?  Isn't it conceivable that while she "knew very well the importance of insulin" her personal experiences have coloured her view of insulin to the point of apparent ignorance?

Maybe we should see this woman as somebody who needs support and is every bit as much of a patient affected by type 1 diabetes as her daughter is.  Studies have shown that the more supported and informed a mother feels the better the outcomes of the child with type 1 diabetes. It seems to me that this woman is in desperate need of support - peer, emotional, and psychological.

I'm asking the Irish type 1 diabetes community to do what I know you do best. I'm asking you to reach out to a fellow parent at their time of diagnosis. Do you remember what you needed at that time? Can we offer that help to her?

Lets offer her shoulders to cry on, offer to stand with her shoulder to shoulder, holding her up and guiding towards hope for a better future for her daughter. Let's share our diabetes stories with her and show her it's possible.  Lets share our challenges and triumphs of living with type 1 diabetes.  Let's tell her that we know living with type 1 diabetes is difficult and sometimes unbearable but that it's not always like that.

Lets not shame her because we ALL know that shaming and blaming does NOT accomplish anything, especially in life with type 1 diabetes.

Sincerely,
Gráinne Flynn"

Surviving Jet Lag with Type 1 Diabetes

Living with type 1 diabetes is annoying enough but when you add jet lag on top of it - I just want to curl up in a ball somewhere and sleep. And that won't help in the least!

Myself and my family travelled to Northern Minnesota in America to holiday with family. I always find the jet lag travelling west easier to manage. We had travelled 22 hours to get to our destination. We arrived very late at night and so fell into bed.

I, usually, fall asleep immediately because of absolute exhaustion and I feel that with some sleep already in the sleep bank the crazy early morning isn't so bad. I do my best to stay awake all day and only give in again to the exhaustion at a reasonable bedtime hour.

It takes maybe 3 to 4 days for me to transition from waking at 4am in my US time zone to 8am. Done!

Thanks to SkyPro for image.

However, travelling east to get home proves more difficult.

Usually, my travelling east jet lag doesn't kick in until the second night home. The first night home, I fall into bed early and passed out. Again exhaustion prevails because I've had 2 hours uncomfortable sleep the previous night on the airplane.

The second night, I go to bed as normal, maybe even a little later because I know I'm going to have trouble getting to sleep. It's more frustrating because I'm just becoming more and more tired but unable to fall asleep. Eventually, at 2 or 3 am I will fall asleep but awake not fully rested the next morning. My feet will drag most of the day, and for every day that this continues.

On this occasion, though, I'm up drafting this post at 3am on the first night I have arrive home from said holiday. I did fall into bed at 10pm and pass out.

However, my son was woken up at midnight because a new toy with an alarm was continuously beeping and came into our room for help! I had deposited two hours in the sleep bank and now my body was starving for it's Minnesotan dinner because that's what time it was there. I can't get back to sleep. I was so looking forward to feeling somewhat human tomorrow and to be able to put sentences together again.

It's probably going to take about a week to work the travelling east jet lag off. It's frustrating because I know that lack of sleep has an effect on my blood glucose numbers. It also has an effect on my ability to resist temptation.

Addendum: Sure enough, my blood sugars have been crazy numbers for the past few days. My body is so confused; it obviously thinks I should be sleeping when I'm eating!! And I can't make any adjustments because I don't know when my internal body clock will WAKE UP and get with the Atlantic programme.

Sleep where are you?

The Little Purse

I know this is a first world problem but I wanted to mention it.

My mother in law is THE best mother in law in the whole world, she buys me flowers for mother's day every year! And I love that she does that.

She visited us in Ireland last April from Vietnam (in a nutshell, she is splitting the next two years between Vietnam and America, waiting patiently for my father in law to retire). And as you do when visiting from an exotic country, you bring presents.

She brought a collection of lovely items which were to be passed along to my family members if I didn't think I would use them.

I try to be the opposite of a pack rat because I like to leave room in my house for people and not fill it with lots of stuff that I never use.

I had passed on three items at this point, and we came to a lovely, hand made, perfectly sized zip purse, big enough to fit a phone, keys and a little loose cash. I've seen these purses and in fact my mother in law uses one regularly.

She didn't understand how I didn't use one! Of course it has taken me several months to figure out why it is I've never used one. Although, you probably figured it straight away?? Especially if you are a woman with type 1 diabetes.

I do however, just grab my keys, stick my phone in my pocket and carry my blood glucose meter in my hand when I do the school runs.

I'm a different species; the kind that needs to grab my blood glucose meter and glucose in addition to the phone, keys and cash. At that point, I might as well go the whole hog and bring a bag!

This tote was a freebie from the Friends For Life 2015 conference I recently attended. I was reluctant to take it at first because it's a very bright yellow but my "Loot" forced me to take it. It is a great bag - no matter how much I put into it, it never felt heavy! It has been tested:-D This is for you Kim Hislop!

Diabetes Burnout

Living with type 1 diabetes, actually any diabetes, is a commitment to lifelong learning. My diabetes changes all the time and I need to learn all the time to keep up with those changes and adapt.

I don't remember the first time I heard the words "Diabetes Burnout" so I think it was at least 5-10 years ago. I do remember that while at that time that I had no experience of diabetes burnout. 

However, knowing about something and realising that it was happening to me were two different things. I still don't know if I've ever really experience diabetes burnout, or not.

I experienced some mild postnatal depression after I had my second baby. I was living in a new town, didn't know many people, I had two children under the age of 3 and was totally exhausted and felt alone.

My son's spent the first 7 days of his life in the NeoNatal ward and the Irish health system being as dysfunctional as it is I felt we were not treated very well, causing a distressing situation to be almost unbearable.

There was so much going on in my life that was consuming my mind and I didn't have any time, energy or thought space left for diabetes. I still did my blood glucose tests and injected my insulin but beyond correcting in the moment I didn't step back to see the overall diabetes picture. I couldn't!

I was just treading the water to keep my head above it. If I stopped treading, even for a minute, then I would sink.

This period of time made me seek out other people with diabetes for the first time! And with our new support group and the help of a new endocrinologist I came through it. It was slow but I was saved from drowning in my diabetes.

The second time I experienced diabetes burnout, it was a symptom of grief. Again, my whole being was consumed with trying to function in the basics of daily life that my brain could not see through the fog of sadness and grief.

It took all of my energy to complete mindless tasks never mind the tasks that required thought.

I have a fantastic husband but my concern for protecting him from how I was really feeling and my willingness to be sensitive to his grief also meant that the person who I always turn to was not going to be able to help me in this situation. This time I had to get help from a counsellor to find my way out of the fog.

Once I made that first phone call to make my first appointment the fog started to clear. I suppose the prospect that help was coming allowed me to breath a little easier.

People have talked about people with diabetes suffering from depression and maybe that's what I had both times with diabetes burnout being a symptom.

"Diabetes burnout" is not the same thing as depression, instead it is something that takes place when a person is either unwilling to change, or simply tired of the endless attention diabetes care requires. (from http://www.joslin.org/info/avoid_diabetes_burnout.html)

Diabetes burnout is very real and there is lots of information out there to arm yourself against it. Knowledge is power as they say.

Insulin Pump - What is it like to wear one?

In March 2011, I wrote about taking the leap to an Insulin Pump. I decided to revamp and update this old post because I've been asked more questions about what it's like to use one and be attached to one.(If you are not sure about how an insulin pump works or what it even is, go to this link.) I have been using an insulin pump for 5 years. The first one I had was the Animas 2020. In 2014, I upgraded to the Animas Vibe, which can be used with a Continuous Glucose Monitoring (CGM) System.

At the present time, I don't use the CGM bit because my team decided to keep things simple and apply for the upgrade first. I am in the process of applying for it through the Long Term Illness Scheme now.

Life before the Pump.

Before pumping, I was on a rapid-acting insulin called NovoRapid which I took with my meals and snacks or if I needed to correct a high blood sugar. I also took a long acting insulin, Lantus which I initially took once daily at bedtime but then for a while I took it twice daily; both morning and evening. I used the Insulin Pens which meant this added up to at least 5 injections daily or Multiple Daily Injections (MDI).

I measured my carb intake and I tested my blood sugars before meals and two hours afterwards to make sure that I was taking the correct amount of insulin for that meal.

I was frustrated about not being as in control of my diabetes as I should be for the amount of effort I was putting in.

Living with an Insulin Pump.

I did a trial period on the insulin pump before going “live”. This means that I would practice attaching it but not using insulin just yet. I used a saline and water solution instead of insulin. The purpose of this was to become less afraid of it and to become familiar with the button pressing and more importantly to figure out where and how I was going to wear it.

During the trial period, I wanted to fling the thing at the nearest wall – the tubing was always in the way. I had some doubts about whether or not I would be able to do this.

But I knew that if it didn't work out I could go back to MDI. I adopted a “if you never try, you never know” attitude. Plus, there were so many pump users in the world raving about its benefits that I had to believe the pros were going to outweigh the cons.

Once I went “live” this all changed. I adapted to the button pushing in about a week, in about two weeks I was comfortable with the infusion set change every three days and within six months it all clicked together.

The tubing hardly ever gets in the way and when it does it's an easy problem to solve. I have accidentally ripped out a cannula (the plastic needle bit that stays under the skin delivering the insulin) only once in six years. That's not bad going.

The highlights for me are;

- Convenience. I never realised how uncomfortable I was injecting insulin in public until I didn't have to any more. Now when I take my insulin, people think I'm checking my text messages. I don't have to flash flesh to do an injection either, removing any chance there may be of an awkward glance from some stranger across the room!

If I need to take extra insulin to correct high blood sugars, my insulin pump is always on my hip to do so, I don't have to move from my comfy spot on the couch in the evening. And I don't have to stick myself either.

- Pump memory The pump has a "history" feature so if I'm not sure if or when I took my last bolus dose and when I last changed my needle set.

- Adapt to unforeseen situations. I can be a bit more spontaneous without the fear of the subsequent hypos. I can chose to reduce my background (basal) insulin if my day becomes insane and I end up running around like a headless chicken. Or I can chose to increase my basal if I'm sick or having a very lazy day (AS IF!!!).

- Manage exercise. Exercise is definitely more manageable and I don't have to stuff my face so much afterwards. When I used background insulin once I had taken it I had to live with the effects of it for 12 to 24 hours. My only option to avoid hypos for those hours was to eat to feed that insulin. The insulin pump allows me to reprogramme my background insulin hourly if needed or temporarily.

No one ever sees my insulin pump. And not because I have it hidden - they just don't notice it. When they do they just assume it's a mobile phone and pay no attention to it.

And life with diabetes became just a little bit simpler by using only one type of insulin. I feel like my insulin pump gives me more of the control of my diabetes, instead of being a slave to insulin.

Using an insulin pump is not for everybody. It is a serious commitment to figure out background insulin rates and to constantly adapt to how your diabetes evolves and changes.

But in my case, I hope to never go back to injections.