Snapshot of life without a fully functional pancreas (T1D)

The year we had Type One Diabetes (T1D) join the family is closing. 

These word prompts lend themselves to a description of our new life.

Treating low blood sugar events are a strange new part of life. 

It makes us laugh to think it’s normal that I wake my child at 4am and force him to eat some honey. 

I shudder to think of what must be happening to his teeth. 

And wonder what the effects of sleep deprivation are on a child’s development. I know its been terrible for getting schoolwork done.

If blood glucose levels drop too low for too long it is acutely dangerous.  We must keep monitoring and keep them up. We do our best to balance insulin, amount of carbs, exercise, and other factors so he doesn’t go too low. Some days, some weeks it works out. Other times we misjudge or for some unknown reason, it doesn’t balance. 

This is what a T1D person has to do every day. No days off. 

3min funny video on treating lows

Some people need to ration insulin, so thankful that is not us. 

We can eat watermelon or oatmeal or anything we like and dose insulin to cover it. We also use exercise and water to help. But if we weren’t able to use the right amount of insulin his levels would be too high for too long. This contributes to bad health in the future. 

“Keep the monitor reader near you!”

Some days feels like I’m always reminding our T1D child to carry the phone so it’s close enough for the low alarm to sound. 

On other days I try to do as much as I can, so he can be a child and not have to think about it. On one hand, we’re training him to look after himself, on the other hand, he is too young to have the burden all by himself.  One day it will be totally up to him.

My husband has spent the year embracing his role as a “Dadcreas” (Dad who tries to be a pancreas).

Our future is caregiving around the clock. I’m not feeling all of this at the moment, but it is helpful to read this, I’m too tired to work out how to express this myself: 

“HELLO, we are working around the clock over here to keep my daughter ALIVE. By ourselves. With no medical degrees. With no daily help from a doctor. WE decide how much life-saving medicine to give her all day, every day. And by the way, too much of this said life-saving medicine could KILL her! Try to wrap your head around that!” But then people look at her and see this vibrant, healthy-looking girl and they think I’m exaggerating, or worse, using my child’s illness to get attention. 

This quote is from a website I've been enjoying and learning from this year called Beyond Type 1. The Isolated Caregiver was written by Stephanie Prince Alexander

 Thanks for reading and head over to A Chronic Voice to see what others have written for these prompts. 

Being sick is not a vacation

Things keep changing so quickly, it feels like there is always a lot going on. I'm using the word prompts from A Chronic Voice to capture some of our life at the moment. 

It is Water Festival/Boat rowing holiday here in Cambodia. The time of year when the river changes direction and people eat dried, pounded rice. The end of the rainy season is a great time to clean the mould off everything.

Soeun has taken a group camping for this holiday the last few years, but this year they are using our backyard for holiday fun. Lots of neighbors are busy getting ready to move, so he ended up cancelling the trip.

Finishing up an infection

It’s a relief, and kind of a surprise to say our child’s sickness is finishing. With chronic illnesses so much part of our family life, I forgot some pain could heal in a matter of days.

Our child has been in pain since Thursday. After a few days of painkillers, we went to the doctor and got some antibiotics. It's Tuesday now and the pain from the ear infection is gone. We haven’t given pain meds since Sunday.

We didn't do school last Thursday or Friday. I called in a holiday at the time, but now I'm renaming it sick days. We stopped doing school because health made it hard, not so we could be refreshed.

Easing back into homeschool after a forced medical break of many months

It's not like picking up where we left off from. That day in February when the doctors told us to rush our child to the hospital we dropped everything. We had no idea it would be over 6 months before we could get our school mornings back.

It has felt like starting from scratch again. We have not jumped into the maths program I was getting them started on at the end of 2021. In late August I had the children do half an hour each morning of a maths program we used in 2020- early 2021. It felt like going backward and forwards at the same time. On the one hand, at least we are in a daily deskwork maths routine now. On the other hand, we are not using the lessons I had planned we would be doing by now.

I was never trying to school them according to what grade they would be in if they went to school. I’m aiming to help them progress through maths and English skills, so we can't really get "behind" in school work.

Comforting

Reading this book is comforting (and confronting).  If you are involved in Christian ministry, either yourself or as a supporter this is a great read, but not for the faint of heart. 

Wishing this was more obvious

Taking a medical break from school/work is not the same as a vacation/ holiday!

It sounds simple when I put it like this but I keep bumping up against this in the wrong way.

For example, we were in the hospital in February so we didn’t do homeschool that month. I was told the first little while with Type 1 in the family is intense so I thought a few months break from school was in order. March/April is our long school break/summer holiday, so we never do any school then anyway.

I tried to get started with school again in May, as that’s when I was going to start a new year anyway. But, it felt too hard. Not only were we still struggling nightly and daily with diabetes we also hadn’t had a break. While we had had a 3-month break from school, it was a time of high stress and not much sleep. I didn’t consider this when I tried to start school in May. We were exhausted, and not refreshed from our break.

I remembered back a decade ago when we were in the first years of my husband's sickness. Every break I had from work was super exhausting both physically and emotionally. For example, when I took a week of annual leave one June we had sickness all week. We spent the entire final day in the hospital, from dawn to dusk. It was a super scary day, which still impacts me even now. We got home late that night, and I turned around the next morning and went back to work. Ideally, I should have taken a break after that, but I didn’t realise that, and I don’t know if I could have organized it anyway. But I turned up for work drained. Walking straight from what I now recognise as a traumatic experience into a new term at work.

Being sick is not a vacation. I wish this was more obvious to sick people and society generally.

Thanks for reading!

My grab and go anxiety management tools

Disabling- Enabling- Communicating - this month's word prompts. 

Disabling-Anxiety

A bit of stress occasionally might not need too much thought to live with. But what if the stress bursts in suddenly and looks like it won’t leave anytime soon?  How can you keep getting through each day when every day is overwhelming?

Recently we entered a time that seems like it will be one of prolonged stress. 

Cue anxiety. It is hard to focus and breathe. 

It's pretty intense and looks like it might go on for a while. It's been 2 months already. What tools do I have that I can just grab straight away and start using? What has been helping?

Enabling- On Anxiety Management

Exercise

In normal times I wait until I have a good amount of time to go for a bike ride. I need half an hour or more to make it worth it, enough time to ride to the other side of the park.

But with anxiety threatening to overwhelm I've been taking any bits of time I can. Even if it means only 5km, and even if it’s in a hot part of the day. Even a little bit of movement makes a difference.

On intense days it means I can feel it right away. On not-so-intense days I know it’s still important. If I’m exercising regularly anxiety spikes are less fierce.

And I'm riding through trees and past lakes/moats of water so the scenery is beautiful which helps too.

Breathing

What if you could calm your nervous system for free, (almost) anytime and anywhere?

At first, breathing exercises made me dizzy, but now that I know how to do them, it feels like a superpower.

Deep breathing exercises centre your nervous system. In counselling, I learnt triangle breathing and another similar one. Box breathing is another well-known method.

I felt how much I had come to rely on breathing when I found myself in the hospital earlier this year.

After rushing our child to the hospital I started to feel anxiety building up in my body. Time to breathe! But, it didn’t work with a mask on and it wasn't an option to take it off. (It was the pandemic, and we were in the ICU of a children’s hospital in Cambodia. There were at least 10 very sick, very small children in the room.)

In that situation, all I could do was notice how I felt and deal with it later.

However, in our current season, I'm able to use breathing exercises to manage anxiety. 

Other tools that have been helping include:

Sleep, nutrition, guided imagery, and books.

More on how books have helped:

Reading Narnia out loud has given me a chance to focus on a magical fictional world. While reading I’m holding the physical book in my hands and having to articulate each word. My children and I really enjoyed it. We read all 7 Narnia books over the last few months. Coincidently we just started before this anxiety began. I wrote more about our experience in these 2 posts:
We are deep in Narnia
From the Dawn of Time until the Last Battle.

I was a bit sceptical when I heard about a Christian book on anxiety, was it going to quote "Do not be anxious" at me?

I was proved wrong when I heard the author interviewed on The Pastor's Heart. In fact, the blurb did quote Philippines 4 but in a way that attracted rather than repelled me.

‘Do not be anxious about anything' says the Apostle Paul. But Paul Grimmond says saying that to an anxious person is a bit like telling an ice-cream not to melt in summer.

NB- I haven't actually read this book yet, hoping to one day. It's helping me just by its very existence.  

When the Noise won't stop

A Christian guide to dealing with anxiety 

by Paul Grimmond

Communicating

There is so much hype around the issue that is triggering my anxiety. I don't want to expose myself to unnecessary triggering. I’ve been trying to take in all the relevant information and bypass the rest. Not possible to do it perfectly but a balance to strive for.

I also have to be careful about the time of day I take in information. I know it will stress me out more if it’s later in the day. If there is some big news I need to hear, my husband knows to share it with me at lunchtime rather than in the evening.

 

Thanks for reading. What's on your grab-and-go list? 

Head over here to read what other chronic illness bloggers wrote for these prompts: A Chronic Voice October Linkup

Photo by Jason Leung on Unsplash

Half a year since hospital

Here we are half a year since the hospital visit. Some things are still suspended in time, stopped  on the day hospital started. Other things are starting again. 

For me,  I haven't been able to ride as much as before hospital. But I'm able to ride more than in the first few months of diagnosis. (Hence these photos. My 12 month pandemic card runs out next month.)

And my school mornings with the children aren't (yet?) what they were, but the last week or so we have regularly done some maths each morning. I tried to start that at the 3 month mark but it was too hard. Since we moved long acting insulin time we have been able to make use of mornings again. Big relief.

At the start of the pandemic the entry to the Angkor Thom wall tracks was unmarked. I think it was sometime in 2021 they put up these signs and barricade. I hardly see motos up there now.

Current scafolding near Victory Gate, Angkor Thom

Corner Temple on the Angkor Thom wall. (NE)

 

Not vacation time, not school days.

Homeschool family life is mostly about coping with sickness this year. I feel it would be better recorded in a poem or a collection of photos than in my homeschool record book.

The maths and English routine we had during 2020-2021 disappeared the day of diagnosis. I thought I could revive it after hot season but it was not to be. T1D is still too new. And that routine doesn't suit us at the moment..or anymore? It was great having those distraction free days during the pandemic. Both children learnt the basics of reading and writing. And now maths and reading is part of their everyday life. But we are probably lacking in other areas.

Nothing like a good downpour to run around in, screaming and getting muddy!

We recently reached the end of our box of Magic Tree house books we were reading. We didn't want it to end. Luckily an English family in town has started selling books, so we went to visit the day after we read the last one.

Airport bike ride. Rainy season afternoon.

So thankful for medical equipment that keeps us alive. 

Novorapid insulin pen bought at pharmacy in town, with 4mm needle ordered in from Thailand.

Went to the circus for the first time, while they still have the pandemic special. It normally starts at 8pm which is too late for us, but these days main show is 7pm.

For about a year now they have been working on Angkor Thom's western gate. The road and gate area look totally different. Used to be dirt road all the way from main rd to Bayon. Used to be more trees.

 

Type 1 Diabetes books part 2

 Some other books and a video I consumed in the first few months. Recording here mainly for my own benefit I guess. 

Coming To Terms With Type 1 Diabetes: One Family's Story of Life After Diagnosis

Debbie Young

Personal essays from a wife/mother of T1Ds. 

A Ted talk on Type 1

Around the 2 min mark: 

It used to be a fatal disease now a chronic disease. (Since insulin injections became a thing 100 years ago.)

Around 2:40:

It changed from a death sentence to a life sentence.

Around 4:30

"Its a fatal disease. Spending your life not dying"

Rosie Becomes a Warrior: A Story to Empower Children with Type 1 Diabetes to Live Their Happiest Lives 

Julia Flaherty

This was fun to read to the kids! 

T1D books

The Insulin Express

by Oren Liebermann

 

Even if I wasn’t interested in the subject matter, The Insulin express would still have me page-turning just from the way words are put together. Part travel memoir, part T1D diagnosis story.  

 

The World’s Worst Diabetes Mom: Real Life Stories of Parenting a Child with Type 1

by Stacey Simms

It felt like a light fun memoir read while at the same time helped me learn about T1 life, which is anything but light and fun. It feels heavy, and I’ve had to think about maths and death more often and more intensely than ever before.

 

Think Like a Pancreas

by Gary Scheiner

So far we enjoyed/ were horrified at how diabetes was managed over the last few decades. It feels shard now, but we were shocked to learn how hard it was in the 1980s.

It also gives us the why of managing blood sugar, something we do every day as we know we have to, but this goes more in-depth , both how it helps us now, and also explains the long-term complications in more detail. I think we are only in chapter 2!

Lola in the Middle

by Cecily Paterson

Fun to read, but not all about diabetes so her highs and lows didn’t seem that intense to us. But the lead up to diagnosis was really great for us. “that happened to me!” And while reading it we felt like we had a friend who had T1D which was valuable for a newly diagnosed who hasn't met anyone in real life with the same disease. 

Why couldn’t I let go of the past?

 

PC

Before

Why couldn’t I let go of the past?

I tried to get over it by waiting; expecting time would dissolve it.

I tried to get over it by facing it. I re-engaged with places and people. I expected that creating new happy memories would dispel the old unhappy ones.

I tried to get over it by seeing a counselor. Counseling hadn’t seemed helpful before, but what did I have to lose? If only I could get myself to see it was OK, I get back to normal life soon.

---

The Moment

“You probably experienced big T trauma. It changed your brain.”

Trauma? Me? I hadn’t been violently attacked or in an earthquake or war. It was a bizarre left-field thing for me to hear my counselor say. How was it connected to me?

And yet at the same time, it made so much sense. I needed to hear more. It was only a few minutes until our session was going to end. Should I mention to her time is up?

I stayed quiet. My desire to know more obliterated my need to follow the clock.

A dramatic and unfamiliar word. Yet strangely, it made me feel lighter and energized.

My journal from that day just says TRAUMA!!! I was too excited to write anymore.

When you have good news, you can’t help but share it. I ran to tell my husband, and I emailed a few friends.

“I’m traumatized! Yay!”

I wrote about it in our newsletter:

The emotional response doesn’t come from what might happen in the future. (Before I heard the word Trauma I thought my bad feelings were anxiety about the future).

It comes from what already happened in the past. My brain is tricking me into reliving the worst moments. This is why knowing things are safe now does not change my feelings at all.

My Fear response is not listening to my Logic.

The brain acts as if it is happening now, the same as it was then. And it doesn’t exist in the rational part of my brain, which explains why I can’t talk myself out of it. I’m not failing at getting over it, it is not over. It is still happening now.

---

After

I noticed when I felt I was in danger.

I noticed I knew I wasn’t in danger, but I felt I was.

I noticed her and gave her a name. Now I could see her and explain her to other people. Mrs. Logic Blocker (Mrs. LB) is a mean woman in my brain. She sometimes disrupts the communication between Logic and Fear response.

I noticed friends could feel like attackers by using the wrong phrase. They triggered Mrs. LB.

I noticed too, these same friends could care for me in that attack. Instead of trying to calm me down or reason with me, they let my irrational outburst run its course.

I noticed nothing in my anxiety tool kit made any impact on Mrs. LB. It wasn’t that I wasn’t trying hard enough — they were the wrong tools. Awareness of her gave me relief overall, but I still had to ride out hours, days of fear.

I noticed Mrs. LB ran away and hid when I spent time with friends who made me feel protected and known.

These friends let me experience God’s presence through them, rather than quoting Bible verses at me. It felt like they were God’s stunt- doubles, although we usually call them Christian pastors.

Mrs. LB had no power against the safety I felt with them. Time with God’s stunt-doubles can dispel an acute attack and leave me feeling safe for days.

---

Conclusion

The most significant point on my healing journey so far has been calling my issue “trauma”. I didn’t know naming something could be healing.

Finding out my brain was tricking me into feeling scared when I knew I was safe was a big “aha” moment.

Now I call it my trauma response, or Mrs. Logic Blocker. I’m less frustrated with myself now that I know the reason and anxiety tools are impotent.

I thought I had to try harder and I would get over it. Freedom replaces frustration when I notice my feelings of safety and danger.

It is not that I can’t let go of the past, it’s like the past won’t let go of me.

---

Written in July 2021 for the prompt "Defining moment"

What A Sudden Diagnosis Feels Like

 

Image by PublicDomainPictures from Pixabay 

BOOM!

A new diagnosis blew our normal week apart.

There had been a bomb ticking but we didn’t know about it until it went off.

The threat of death suddenly joined us.

This new chronic condition in our family began with a swift diagnosis and treatment. Our other conditions have taken a year or more to work out, but this happened within 24 hours. There was no time for unsolicited medical advice this time around! We are so thankful for the local doctors here in Cambodia who saw the problem and took action.

I can’t quite write about it properly yet even though the situation isn't as acute as a month ago. I’m still tired and adjusting but on the path to long-term management.

This month’s A Chronic Voice linkup seemed like a good way to note down a few things from this season. It is still fresh but I can't yet zoom out and describe the whole picture. Having these 5 words lets me narrow it down: Processing, Relying, Retreating, Cancelling and Reframing.

Processing

Being in hospital with a family member was easier this time around. After being a counseling client for a few years I was more equipped this time. I didn’t know it would be like that so it was a nice surprise. I was noticing feelings as they were happening.

Relying

My husband is my favourite person to go through a traumatic medical transition with. We all rely on him at the moment to get through each day.

A few medical and pastoral friends have generously made themselves available to us. It's not an exaggeration to say they are saving our lives with their specific skill set and relationship to us and others.

Retreating and Cancelling

Since day one we had to cancel pretty much everything.

We haven’t done homeschool since then.

We didn’t say goodbye to a family who moved back to their country, we never got to have that last playdate.

We were getting ready to welcome a family moving back to Cambodia after two years but we also had to pull out of helping them. Hope we can catch up with them later on.

Just to survive I haven’t been really checking email or trying to keep up with friends overseas. I’ve been only messaging friends in Cambodia and family.

The first week we could only think hour by hour and were not aware of anything else other than our health. It was hard even to know what day it was or what we would eat. Our extended family shopped, cooked, looked after children. A few ex-pat friends dropped off food and books. I wore the same clothes for days. I only noticed when a friend dropping off food asked if she could wash our clothes.

I had been going to join a homeschool summit online. And I was in the midst of reading some books and on a roll with blog writing (link to my guest posts). All on pause, hope to return one day. (I guess writing this count as a return to writing?!)

We probably won’t do school or meet up with people too much for another couple of months. Although my husband has started back with some Bible and sports activities but not the other classes. I have taken our children out once to a friend’s house, they had so much fun. But I was so tired to the point of forgetting some medical things for about a day or so after that. It freaked me out.

The shock plus the learning curve and the physical tiredness are all-consuming for now. We’re told it will get easier with time and that this is just how things are for now.

Reframing

Finding others with the same diagnosis often helps, but in our case made me feel more isolated for a time.

Others were either dead or managing it with high-tech stuff we don’t have. So it felt like we were doing something dangerous. It doesn’t feel like that anymore, but when it did reframing helped me. I remembered that what is often good for us as a Cambodian/Aus family is different to what is good for anyone else. We don’t fit neatly into either Cambodian or Australian or ex-pats. So of course we are doing this differently. Our current situation suits us; we are in the best possible place to go through this.

One month down, a few more to go?

Now that the bomb blast has settled, the noise is only a ringing in our ears. The shock is present with us but not overpowering. Much of our old normal is gone, maybe only for a time. Some things we will have to work out a new normal.

Head over to the link-up to see how others used this month’s word prompts.