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!

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"

Looking back at (non) recovery of trauma (graded exposure)

Avoiding it for ages only makes it worse.

Jumping in too far too fast makes it worse too. 

So what to do? 

Graded exposure therapy or desensitization is something I learnt about recently in relation to coping with my PTW (post trauma weirdness). Looking back over the years I can see the times I tried to just get over and rip the Band Aid off probably retraumatized me. And the fact that I've lived with it for so many years also kind of feels like it is getting harder.

So graded exposure makes a lot of sense. Dipping into it in a small way, until that gets comfortable, then moving on to the next step, or the next rung up the ladder. Staying there until that feels comfortable etc etc. Maybe like if you were afraid of dogs so you got a toy dog to play with, and then moved on to playing with a puppy, and eventually you could work your way up to a full grown dog.

For more on this see the 3 books I listed here that have been useful in recent months.  

Five Minute Friday free write. Word prompt: BACK

3 books- related to counselling

I have not read any of these books in their entirety, but they have all been useful in the last few months. (As mentioned here and on this trip.)

The Body Keeps the Score,  (Kolk) chapter 3 helped me to understand in a bit more depth what my counselor explained to me about post trauma. It describes what happens in the brain when a traumatic memory is triggered. Its as if it is actually happening in the present, with the left brain activity decreasing while danger signals are being sent from the amygdala.  (That is my current layman's understanding anyway, feel free to leave a comment if you want to clarify it.)
"Dr. Bessel van der Kolk, one of the world’s foremost experts on trauma, has spent over three decades working with survivors. In The Body Keeps the Score, he uses recent scientific advances to show how trauma literally reshapes both body and brain, compromising sufferers’ capacities for pleasure, engagement, self-control, and trust." (Amazon)



Trauma and Resilience: A handbook,  (Schaefer) section 5 has some ways to manage traumatic stress.

"Are you looking for resources to come alongside people who are suffering
as they serve God? This book brings together theological perspectives;
personal stories; and spiritual, psychological, community, and medical
resources. It is research-based and at the same time practical. This is
a handbook for church and mission leaders, peer supporters, counselors,
those in personnel and member care roles, as well as those who suffer. It is also an excellent resource for training courses about this topic." (Amazon)


The Anxiety and Phobia workbook  (Bourne) has a chapter on graded exposure/desensitization

"...unparalleled, essential resource for people struggling with anxiety and phobias for almost thirty years.

Living with anxiety, panic disorders, or phobias can make you feel like you aren’t in control of your life. If you’re ready to tackle the fears that hold you back, this book is your go-to guide..." 

4 surprises in June

"Give him 4.5ml once a day."

I couldn't understand what the nurse was telling me, although I knew I should be able to, and I knew it was important. My son had a scary looking infection, with a weird red line growing out of it. Why couldn't I understand the instructions? And what would happen to my son if he didn't take the antibiotics correctly? What if his blood got infected?

It felt like there wasn't much action in the logical part of my brain, the fear response was taking over. My brain was tricking me into reliving the emotion I had when my husband was sick. Even though it was more than seven years ago it felt like it just happening in the present. The counsellor had explained it to me almost 12 months before, and the book I happened to be reading in the waiting room explained it to me on the spot. ( A Sandwich of Sickness Stories) That's what can happen after a "big T trauma".

I memorised the instructions (still without understanding) and repeated them to Soeun when I got home, and he gave our son the medicine. Part of it was written down in Khmer language but not in full detail.   

Just popped out the front gate to take this while cooking dinner.

Surprise 1
Dealing with my health was more urgent than I had thought! The last few months I have just been dealt with my post trauma stuff mostly by avoiding triggers, like thinking about going to Australia. But right at the start of June both our kids needed medical attention and I realised I wasn't really well enough to take care of them. Seeing a family member in pain can also be a trigger. Now I get why they tell you to put on your own oxygen mask first, before helping others. 

Surprise 2
It was too hard to arrange things for me to get help- that was our position over the last few months. But in the first week of June it switched to- it would be too hard to keep going without getting help. 
The surprise was that when we actually started planning things fell into place. And it will give us a chance to deal with a couple of other things too.

Surprise 3
Back in January we finished up with our Khmer church. We decided for 6 months we would just go to House Church (English speaking). It was nice for me, but weird for Soeun. We didn't have a plan for when the period of time was over, but just at the right time a new church popped up in our commune. Soeun has already been visiting and now it seems like its going to work.

Surprise 4
On the last day of the month Soeun started getting messages from his neighbourhood football team. A farming accident was in progress and ended up being fatal. Such a shock.

So here we are at the start of July, with the mournful music and monk chanting sounds all across the neighbourhood  from around 5 or 6 am. And it seems like mostly our days are filled with errands and admin, which are mostly health related.  Tomorrow is the funeral of the boy who was killed. Also its  our daughters 5th and final post exposure needle from her dog bite last month.  It feels a bit like a full stop of all surprises. Not sure what the next bit will look like! 

I didn't really think through this blog post as much as usual, feels like there is a lot going on and wanted to record it as it happens. Hopefully it made sense!

A Sandwich of Sickness Stories

A Chronic Voice prompts for June 2019- Wondering, Repeating, Getting

Hot season is over and the rains are here.  They say it never rains but it pours, and we recently had a week that felt like everything thing happened.  Let’s call it our Sick Week.

In the beginning...

How does a biracial family access health care?  The lack of trustworthy medical care in Cambodia was terrifying when I first arrived back in 2006.  I was told there was one specific clinic I could go to if I got sick. Seeing a doctor cost about a month’s worth of rent. That was the information given to foreigners at the time. There was no way the average local could afford that. There were other clinics for them. 

If I was going to marry a Cambodian and look after our babies here, how was that going to work? And what of our extended family? Those were my thoughts about 13 years ago, and I had cause to reflect on them this month during our Sick Week.  

It felt ordinary like bread on the first and final days; while the central day was more intense, like meat seasoned for a sandwich filling.

Wondering why he was contradicting himself

First Day of Sick Week

“Your son has chicken pox, he will be contagious for 7 days.”

“So I should keep him home from play dates and parties?”

“No, no need.”

“But those spots are from chicken pox? Is he contagious?”

“Yes”

“So I might not take him to visit friends this afternoon.”

“No need to stay home.”

I was wondering why the doctor was contradicting himself, when he was usually so helpful.  

Four years of respect and trust for him was the only thing that prevented me from getting angry and leaving in frustration. We tried to communicate about this but I was just left wondering. 

It wasn’t until later I realised what was going on as I interacted with parents of various nationalities over the next few hours. I was equating “contagious” with “stay away from other kids”. I stayed home from school when I had chicken pox, because it was contagious.  But for Khmer parents, those two things don’t seem to go together. Of course their kids will get chicken pox at some stage, no need to stay away from sick people.

My brain repeating that emotion from years ago

Central Day of Sick Week

                                                                                                                           

My fear response was taking over my logic.  I was at the medical clinic with my son and his scary looking infection.  Over 7 years ago I felt like my husband was moments from death and that feeling keeps getting replayed. When it is triggered by things such as seeing family members in pain it doesn’t matter that I know things are probably OK, my brain tricks me into re-living that old emotion.

Spookily (but in a comforting kind of way) I happened to be reading about trauma as I sat in the waiting room with my son. It was as if Someone was with me, explaining what was going on. A woman called Marsha has her brain scanned while she re-lives her trauma. The Body Keeps the Score (chapter 3) explains what happens in her brain. It was similar to what my counsellor had explained to me about my own brain only in more detail.

It wasn’t only my 8 year old emotion that was being repeated.

Last July I was at the medical clinic with my husband and his scary abdominal pain.  Over 6 years ago I felt like my husband was moments from death and that feeling keeps getting replayed. When it is triggered by things such as seeing family members in pain it doesn’t matter that I know things are probably OK, my brain tricks me into re-living that old emotion.

Spookily (but in a comforting kind of way) I happened to be reading about trauma as I sat in the waiting room with my husband. It was as if Someone was with me, explaining what was going on. A friend had just messaged me a link to this blog post about trauma. It was similar to what my counsellor had explained to me about my own brain only in more detail.

Getting the post exposure rabies shots

Final Day of our Sick Week

“Whaaa!”

Our daughter came in crying.  She was bleeding from a dog bite. I’d seen other expat friends rush to get the rabies post exposure shot so I knew that’s what we needed to do. Even though there was a really small chance she was infected, it was such a serious thing. I began urgently asking on Facebook which clinics in town had the vaccines in stock.

Soeun drove our daughter straight to a clinic and got her first of five shots done. Phew! I breathed a sigh of relief and so did the friends on Facebook.

In sharp contrast, a local woman in the waiting room told Soeun he was being ridiculous. He was advised by his fellow Khmer that washing the wound was all you need to do. The shots are just so the doctors can make money. I guess she hadn’t seen all my expat friends running to the doctor, but I’m sure she’s seen people getting bitten.

Conclusion

You can experience the exotic by eating in a Chinese restaurant or watching an Indian movie. Relying on doctors in Asia for my children’s health has given me another way to gain insight.

War is part of this country’s recent history so I’d read about post trauma issues before I came to Cambodia; but having a personal taste of it feels like the beginning of a different level of understanding.

Hopefully I’ve been able to share some of that insight and understanding with you here. Stories like the chicken pox and rabies shots are our usual way, using the Khmer doctors’ expertise but sometimes in a different way to their other patients. Whereas the central story of re-living emotions feel like the start of something new.

 Photo by Jonathan Pielmayer on Unsplash

Counselling is like trying to photograph a gecko skeleton

I wasn't sure what to expect when I became a counselling client. Here is how it worked out for me.

Regrouping after realising something was wrong

Living in the tropics we have geckos flitting all over our house. My son was fascinated when he discovered a gecko skeleton on the floor and asked for my phone to take a photo. At first he was frustrated. He couldn’t see anything on the phone screen.  Taking a photo up close with auto focus was harder than he thought. After some playing around he found the gecko on the screen and eventually we got it clear enough to take a photo.

It reminded me of how a year and a half ago I came to realise that annoying blur on the edge of my life was actually something. I wasn’t just going to get over the weird feeling I had when I thought about the start of my husband’s chronic illness.  Even though it had been more than 5 years it was still an issue. I felt like I had been defeated by my emotions and needed to regroup although I didn't even know what the blur was.  

The word prompts for A Chronic Voice blog link for this month help describe the last 18 months.

Regrouping. Investigating. Boosting. Setting. Reviving . 

Read on to find out more and visit over here to see what other chronic illness bloggers up to in May. 

Investigating the issue

Counselling sessions gave me a chance to say what I was actually feeling, not what I thought I should be feeling. All those years ago when my husband was debilitated by dizziness, it didn’t seem like the problem was that big. People who I asked for help told me I would probably be fine soon.

But early 2018 I realised what happened in 2011-12 was still impacting me. I spend two years feeling like my husband was dying or dead. I only came to realise was a big deal after having to articulate the emotions I had during those years. The first counsellor (TFC) called this unresolved grief.

To help process this grief TFC suggested journaling. In theory it sounded good but I didn’t really feel like I had anything to write about. Even though I journal and blog I came up blank at that suggestion. Where would I start?

At last the blur had a name, it became a shape, something I could talk about.

Boosting my understanding

After the second counsellor (TSC) heard my frustrations of not being able to get over it she said it had probably changed my brain. TSC called it “big T trauma”.

Despite planning a “fail proof” trip back to the place where it happened (Australia) I still had that weird horrible feeling. I had been calling it anxiety.  I thought I was scared of something that might happen in the future. But that weird feeling I had when I was forced to think about the events was not anxiety about the future.

I was actually re-living a feeling I had had in the past! My brain was tricking me.

This clarity relieved a lot of frustration.

The blur that became a shape now had a more defined outline.

Our son took a blurry photo of his watermelon drink

Setting out to learn more

So there I was realising finally that I had suffered grief and trauma back when my husband was first sick then I read about a type of traumatic unresolved grief.  

I was excited to find a more specific way to describe it: Ambiguous loss.

This concept popped up on my screen thanks to Marilyn Gardner (the third counsellor?).

From The Frozen Sadness of Ambiguous Loss

 “  "I move on and find out there are two types of ambiguous loss: One is that the person/place/family is physically absent, but psychologically present, in that they may reappear. This can be loss from divorce, moving, boarding school, migration. The other is that the person is physically present, but the core of who they are is absent. Examples of this are people with dementia or alzheimers." 

It had  felt like my husband was absent but he was actually physically present so it didn’t look like a loss. Reading more from Pauline Boss, who coined the term, things makes a lot of sense. It explains why the magnitude of my loss wasn’t acknowledged. The loss was unclear.

I feel like I could write much more about this but for now I’ll just say it is such a relief to have someone else explain what happened and why it is so painful after not being able to explain it for so long.  

I wrote about this feeling of clarity the week I first came across it. You can read it here: Frozen Sadness.  Interestingly at the time I did note here that he felt more present when he was away in Cambodia while I was still back in Australia.

The shape on the screen had even more than a clear outline now, I could see some details.

Reviving my going forward strategy  

I’ve found some clues to help me go forward. Looking at my timeline of post trauma events I can see what helps and what doesn't.

Where I felt forced to be in certain situations it just made me feel worse. “Rip the Bandaid off” was my method at one point when I thought it was something I would just have to get over; but so far that seems ineffective. Ignoring it for years also didn’t help.

Writing about it is one thing that helps. I think I’m going to call my blog the fourth counsellor. Perhaps it’s because I’m recalling the memories myself without the presence of the weird feeling.  I think TSC mentioned this would help separate the memory from the stress hormone reaction. And TFC also mentioned writing. An example 5 ways living with an undiagnosed illness in the family is stressful. Also this has more about writing.

The blur, became a shape, with an outline, then a few details and now with writing feel clearly defined.

So there you have it. Its only the tip of the iceberg but hopefully this gave you an idea of how counselling for me has been like focusing in on what it is going on and finally seeing the details. 

  

Photo by Jamie Street on Unsplash

4 reasons I hate going to church {fmf}

I feel like I never get anything out of it, or put anything into it.
Plus it throws off my kids sleep so we all get extra tired and grumpy on Sundays.
The practical side of taking 2 kids to church is hard.

But while all this is going on- the getting there, and finally being there, but not involved in the main meeting, there is a fourth reason I hate going to church. I'm also dealing with a broken brain. Whenever my husband has to miss church due to his chronic illnesss, my brain tricks me into re-living the feeling I had when he was first sick. It was a long time ago but it was traumatic.

So with all this as the norm, it makes it really hard to get there each Sunday. Why do we do this? What is the point of the practice of going to church if  I can't hear a Bible talk or pray with people? If I'm never going to be able to sign myself up on any rosters? (Our church fellowship is run by others like me, we don't have a pastor.)

With feelings of exhaustion and without answers, but still feeling like I need to be at church (am I just being graceless, legalistic?), Sunday just feels like an insurmountable mountain.

I was particularly overwhelmed this Sunday just gone. It was potluck week. Eating dinner together is such a great practice for a group of Christians. But getting food for myself and 2 little people after playing in the hot sun for two hours? Not so great. The table of food looked inviting, but the people chaos was too much, I stepped out of the line with my 3 plates and 2 kids.

Why hadn't I gone home earlier as planned? I knew this was going to be too hard. The tears that had been trying to escape for the last couple of hours were almost having success.

But then two kind people grabbed a plate each and started getting food for the kids.

Suddenly things felt much easier, and I had an answer to my question. Why do I go to church when I end up exhausted with nothing to show for it?

Community. I'm part of the church.

Maybe for now all I need to be doing is being there.

Turn up and hand the plate over.

(End of 5 minutes.)

This week’s Five Minute Friday writing prompt is: PRACTICE

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I'm sharing my story with you for the same reason as Fruitful Today. 

"My prayer is that your church relationships will be strengthened through this series (of interviews), whether you’re living with an invisible illness, or seeking to better support those in your church family who live with ongoing health conditions." 

"I hope you enjoy these glimpses inside the minds of your chronically ill brothers and sisters in Christ!" 

You can read them here:Interviews about church and invisible illness

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While brutal at the time, the issues with kids feels a bit easier than the chronic illness one for me. Many other people have done it, or a doing it. Plus its a temporary situation. In 5 years time the kids will be 5 years older!  

For more on going to church with kids The Gospel Coalition has this : 5 reasons to keep going to church with baby brain.

Photo by Charles Etoroma on Unsplash