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.

Why did it feel like the world turned upside down?

It felt like the world had turned upside down, and yet at the same time stayed the same.

For the May Linkup on A Chronic Voice  I'm attempting to describe my experience of being an Australian in Cambodia during Covid-19. Part of the experience was scrolling Facebook and incongruously laughing at all the memes, so I've included some here.
  

Prompts for this month: foreseeing, upbringing, accessing, panicking, soothing. Sorry, they're a bit hidden this month. 

Thud-thud-thud-thud-thud.

That was the sound of five heavy, rough stones falling into a small, thin, plastic bag in quick succession. It could really only fit two rocks, so the bag was painfully stretched. The weight and shape of the rocks was uncomfortable.  And the speed at which they were dropped in, almost all at the same time also caused distress.

......

It had already been sneaking into our lives, but in the third week of March 2020 the new virus really made its impact. We had been aware of it, but we didn’t foresee it turning our world upside down.

Only 1 confirmed case in Cambodia for the longest time, but in March they began to rise.  Schools in town were shut down in the first week of March, and the COVID-19 outbreak declared a pandemic. 

In hindsight I see these as heralding the changes to come. That Sunday, 15^th in church Soeun explained hand washing and distancing. It turned out to be the last Sunday church service to date.

I felt like that thin, small, plastic bag the week beginning 16^th March. By the next Monday I was so tense, anxious and confused, not even sure why it felt like everything was different. Because it also felt like everything was the same. 

So what was going on that week?  My husband being extra busy in new ways; his role as Christian leader morphed from teacher to a million other roles. Humid weather arrived, its stickiness slowing my brain and body down. People all over the world panicking, things in China seemed to be easing while in many other countries things sped up. While also slowing down. 

Into this busy, humid panicky backdrop fell those five stones, landing one after the other. 

Thud- thud- thud- thud- thud. Without enough time between them to see what they were.  All I knew is they were heavy and uncomfortable. It wasn’t until later that I was able to pull them all out and have a look at each one. Somehow it was soothing to examine each one.

1. Uneasy about accessing medical care in this country.

Confronted with a friend’s hospital experience reminded us health care in Cambodia was not pandemic ready.  When a fractured bone is left untreated, and yet still sends people into debt, you don’t like to think what would happen if many people were sick at the same time.

2. Undone?

Like a newborn baby our church community was only just starting to form. After about half a year of intentional bonding with church members and the leadership team suddenly religious meetings were banned. Making the abrupt change with a brand new group wasn’t exactly plain sailing. We are happy to stay apart to prevent the virus spreading faster and thankful for online connections, but wondering what all the newly formed relationships will be like when the dust settles.

3. Unexpected.

Air travel changed quickly, flights cancelled, extra travel restrictions and bans came into effect and borders threatening to close. The Australian government urged Aussies to get back while they still could, especially if they were in countries with questionable healthcare.  

I had not even considered this option before and suddenly I had to decide immediately. 

Amidst the humidity I tried to weigh up the dangers of travel verses the danger of getting stuck in South East Asia during a worldwide health crisis. I would have to start packing for the kids and I right away, if I was to get out before it all shut down. What kind of upbringing did we want to give them? If we left,  when would we get back to Soeun and our house where they are used to playing and learning?  

I saw the government message on Wednesday 17^th, by the 19^th two Aussie families I know had announced they were leaving. By the weekend they were on the plane. One, traumatically actually had to pack up her whole life in a day as they had to leave permanently.   

4. Economic uncertainty.

The sharp decline in tourism was being felt by a town full of people already just getting by. That was only a blurry background for me until seeing the desperation of a family known to us.  Suddenly, in that third week of March it was brought into sharp focus.  I felt like we were living in a town of hospitality workers who had not earned enough for a few months, and the months ahead looked like things would get even worse.

5. Unprecedented.

Like a giant game of musical chairs everyone suddenly jumped up and started racing around the world, hoping to end up in the right place before the music stopped. I saw (via Facebook) fellow expats around the world making a quick exit from their host countries. Often without goodbyes, and not knowing when they would be back. Some knowing they wouldn't be back.

While others who were meant to make an international move stayed put.  Also via Facebook I saw friends who were about to move overseas, or about to move back to their passport country having to cancel the long planned for transition. 

And still others got caught in a third country where they neither lived, nor were from. 

...............

After I had looked at each "rock", and had time to get used to it all I felt much better. Uneasy, undone, unexpected, uncertainty, unprecedented. No wonder I felt overwhelmed and exhausted!

Although my daily life was almost identical to pre March 16th, the changes in our street, town and the world were filling the windscreen. 

I noticed on the Linkup Sheryl mentioned this is Mental Health month in America.

"It can be easy to get caught up in your emotions as you’re feeling them. Most people don’t think about what emotions they are dealing with, but taking the time to really identify what you’re feeling can help you to better cope with challenging situations."

For more about this see Owning your Feelings. 

Photo credit: Unsplash Fateme Alaie

Thankfulness? {fmf}

It looks like a flower but is it? pc unsplash

Seeing people post on Facebook what they are thankful for during the pandemic recently reminded me of how I feel something unpleasant (maybe cynical?) when I think about being thankful.

How did I end up here? And didn't I already think through this and came up with a new perspective back here? 

And then scrolling further I found some posts on "toxic positivity", forcing happiness. Maybe that's what I had actually been doing? I was calling it "being thankful" but another perspective one could call it toxic positivity.  During a difficult season I would try to find things to be thankful for- there were plenty I could list. I had food, shelter, friends. The Bible tells us to be thankful, wasn't that what I was supposed to do?

But this week as I've been doing the Velvet Ashes retreat and I'm wondering if what I was missing was focusing on the eternal. So I did have all those good things I listed, but I also had a lot of pain, which I didn't really know how to notice at the time. And there is always going to be pain this side of the new creation, but one day all will be restored. Maybe if that had been the one big thing on my thankful list I would have a better relationship with giving thanks now?

A Five Minute Friday write on the word PERSPECTIVE.

Returning, Riding out 'Rona and the great rescue

Remembering God's rescue with the help of grape flavoured re-hydration drink.

Returning...

So since November I haven't felt like reading blogs or writing here either, weird. It was the thing I did for fun, and to handle the stress of sickness. But just recently starting to feel a bit better and started thinking about the monthly link up on A Chronic Voice. Maybe I'm returning to blogging?

Stressing while riding out 'Rona in the Reap

As an Australian living in Cambodia, I've seen a few fellow foreigners make a quick exit . As the virus situation changed overnight, less and less flights available and borders closing. We are staying put here in Siem Reap. Two big stressors with that are that we feel cut off from good medical care, normally nearby Thailand would be our option for a big emergency, and the other one is that the whole town lives off an industry (tourism) which has sharply decline over the last few months with no end in sight. When will tourists come back? December this year? Not till next year?  This blog explains the institution here: Move to Cambodia, Staying in Siem Reap...


Celebrating Jesus' resurrection

In the weeks leading up to Easter we read out loud from an English translation of the Hebrew scriptures about how God saved his people out of slavery. We also read from the book of Matthew and Mark, the final chapters about the events leading up to Jesus' death and resurrection, also about how God saved his people. Our kids really got into drawing while we read out loud.

It felt like the whole world turned upside down in March, but also like we are still at home with our kids as normal.

October Symptoms

October Link up with A Chronic Voice- prompts Waiting, Parting, Persevering

WAITING

Waiting...for a year now I've been waiting to either feel better or find out why I feel unwell. Around October last year I found out it was my thyroid causing the issues...then a month or so later found out it wasn't. Then in July this year I found it I do have thyroid issues, but then this month found out its not thyroid....

This season of life feels a bit like a dream. Partly because I'm sleepy all the time, no matter how much sleep I get, and partly because things are easier now. 2011-2017 were really stressful years, but over the last year or so at least three big stressors have gone. I keep thinking about school teachers who are so busy during term, then when they have time off end up falling sick. I feel like that's what happening here. Previously I had to put a  lot of effort in to survive, now I need to lie down for many hours a day to survive.

So I haven't been blogging etc very much since early September, instead posting photos everyday on here, its public so you should be able to see them? And also in monthly Facebook albums, as well as noting some sickness stuff in a Facebook group called Katherine's Kronicle.

PARTING

Sometimes life in an expat community is like this:

You go to church and run into a friend you haven't seen since she said goodbye and moved out of Cambodia.

Actually today I saw 2 friends who left years ago and just moved back in recent months ( I knew one from playdates and one from Bible study group).

Also, you see another friend whose time in the country is coming to an end.

Actually today I saw 2 friends who will move back to their respective passport countries next year.

And if those reminders of goodbyes weren't enough there was someone at church wearing a recently departed friend's clothes.

Actually there were at least 2 of us there today who were wearing the departed friend's clothes.

(When people move back to their passport country they usually shed many of their belongings. We have furniture, clothes, books, kitchen stuff, toys etc etc from departed friends.)

Sunday October 20th

PERSEVERING 

Some bits of pieces of my symptom experience this month:

I suddenly feel disorientated. It can happen when I'm in the middle of doing something normal. Its alarming and confusing and its been happening for just over a month. I think it might be because I actually forget what I'm doing while I'm doing it. Such a bizarre sensation.

In other news it might not be a coincidence that brain fog began about a month after I started on Vitamin D supplements (following doctors orders after a blood test). (October 22)

By the time I noticed it was already too late. I was only standing one pace away from the fry pan yesterday but the food burnt anyway. Perhaps its a memory issue, or perhaps my brain can't process very many things at once these days. I must have been able to smell smoke, but it didn't register because of everything else going on. I think I'm just going to call it brain fog. Its been getting worse over the last couple weeks, so we 're wondering what the next step is for my health. My last check up was 3 months ago and I was given somethings to try, hopefully to help with fatigue but so far it feels like it hasn't helped.

While its been distressing and frustrating for me to not be able to do things like I used to, at least I haven't had to explain it to Soeun. He already knows what its like from his own experience, the onset of his fatigue etc back in 2011. We've done this before (experienced onset of invisible symptoms) second time doing anything is generally easier. And this time we are in a stable stage of life, not hitting all the big stressors like moving house, job, country etc. MUCH less stress! (October 14)

"But that's normal for me."

Earlier this year when a doctor told me I might be anemic and have Hashimoto's, I joined some relevant Facebook groups. Some things that group members called "symptoms' I was familiar with but I had never thought to call a symptom, as they have been part of my life as long as I can remember. Hair fall, bruising easily, feeling dizzy and seeing black when standing up to name a few. (October 24)

Thanks for reading, hopefully it made some sense. Since early September I have been burning food, dropping things (including my phone, which broke and cost a lot to fix) and spending a lot of time lying down doing nothing, to recover to prep for the essentials. Due to conflicting medical advice I'm not sure what is next.

Photo credit: Facebook, I couldn't find where exactly it was from though, must have been a chronic illness page I follow, get in touch if its yours.

What does a successful day look like?

“Well, that was a successful day,” I thought to myself as the kids and I headed home in a tuk tuk. 

At 5pm in Cambodia the sun is already setting. With the spectacular rainy season clouds and the tall palm trees there is enough to distract me from all the motorbikes that are zooming and weaving around us. 

My big achievement for the day had been lying down for 2.5 hours. 

Yes, congratulations to me for resting from 12.30 until 3pm. Having time to do that meant that I had a bit more energy and concentration for the one hour visit with friends in the late afternoon. 

Although my iron levels are in normal range now I feel like my brain fog is getting worse, it is so frustrating trying to interact with people when take so long to think. Hence, a long nap time to ensure I was feeling well enough to take the kids out.

It is one year since I started noticing fatigue. And since its my fatigue- iversary as I mentioned here I guess I’ve been noticing these things. I probably would not have called a two and a half hour rest a successful day before I was sick!

Today's Five Minute Friday writing prompt is success.

Photo by twinsfisch on Unsplash

My Fatigue-iversary: The tiredness I've blogged about in the last 12 months

Doctor: Have you had any loss of concentration, brain fog?
Me: Umm, er....what? Do you mean...ummm..like is it...err...ummm...

I've enjoyed using the A Chronic Voice link up to describe/ share/record our health experience and this months prompts fit exactly what I'm thinking about as I mark one year of being tired.

A Chronic Voice Link up for September -Prompts this month include: recounting, finding and researching

Finding out why and researching the next step

So my iron, Vit D and B12 were all low, so that could be the cause of fatigue and the first next step for remedying  that is supplements. My thyroid function is within normal range but some other tests showed high antibodies. Thyroids are tricky and researching the next step is probably going to be confusing. At first my doctor mentioned gluten free dairy free, even AIP, but then after another round of tests said I didn't need to try those diets.

Within days of finding out I have high antibodies I heard from a few people who have Hashimoto's. One swears by a gluten free diet, one had never heard of it for Hashi's , another had tried it and said it didn't help her, another sounded like she knew about it but didn't follow it strictly...


Recounting a year of fatigue 

So last October I felt unusually tired. As I mentioned back here  I went for some blood tests and I felt like I'd found out the reasons why and worked out the next step to deal with it. And then over the holiday in November I was still feeling tired so as I mentioned back here I just rested while all the relatives did the cooking, cleaning and looked after the kids.

I think in early December I felt a bit better after I'd been taking iron supplements for a month or so, but in late December I was still feeling frustrated with energy levels as I mentioned in my December  A Chronic Voice link up .

Then I started off the year thinking that eating enough iron would be the way to health as I mentioned in my A Chronic Voice link up for January. 

I was feeling tired in March and April too, but I always do as it is hot season. Everyone is tired and grumpy. So as I mentioned in my A Chronic Voice link up for April it wasn't the time to work out if my ongoing tiredness did have a medical reason.

So I think in May with the cooler weather I felt a bit better, but then in June both the kids needed medical attention and it felt chaotic as I mentioned in A Sandwich of Sickness stories and 4 Surprises in June.

So then in July it was time for a healthcation. I'm not really a fan of travelling but it turned out to be a useful time as I described here. Being away from normal life to focus on health meant I had time to think about my thyroid as I mentioned here.

So here we are in September, almost a year later. I've been taking supplements but no medications, according to doctor's advice.

Thanks for reading! I feel like there was something else I was going to include, but can't remember it at this time, maybe I'll edit later when I think of it. Sorry if it doesn't make sense I can't think clearly...So tired...

Photo Credit: Someone on facebook? I can't remember where I got it from, I did google it but no luck.

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

Is it a holiday? Is it a conference? No, it's a...

It’s not like any other travel I’d organised before. 

It’s not a mission trip to a host country. 

It’s not a visit to a passport country. 

It’s not a holiday. 

It’s not a conference. 

It’s not going away for study.

It's a tailor-made international health trip.

Emails flying between 3 countries. Collecting the correct documents for medical matters and crossing international borders. Trying to write a budget with 3 or 4 different currencies. Scheduling doctor's appointments not knowing how long it would take to get there from my accommodation, or how I would do that with no local language or knowledge or sense of direction. Trying to choose the cheaper flights that also matched up with when counsellors and guesthouse beds would be available...   

It felt like such a hassle to have to organise it, and it was annoying that we would all need to put our lives on hold for the duration. Going away cost so much money and I needed many people’s help to make it happen. If only I didn’t live somewhere without these services, there would be no need for a trip like this. I could just slot it into our normal everyday activities.

These were my thoughts as I prepared to have our babies overseas, and more recently as I got ready for two weeks of counselling and medical appointments in a country we have no connections to.  I resented having to travel for fairly run-of-the-mill health events. 

So what was this trip like?

It was a little like a holiday, in that I was in a relaxing environment away from normal life. 

And a little like a conference in that I learnt a lot of exciting things that I’m eager to take back to my real life. 

I was in a country that was neither my passport country nor host country. Daily activities included catching taxis from my accommodation to meetings. They weren’t big group meeting though, rather individual counselling sessions or doctor’s appointments. It was great to finally be able to investigate the mental and physical health issues I had been trying to work on over the last six months.

And the accommodation wasn’t just a place to sleep. It’s a little like a guesthouse, but specifically for cross-cultural workers. People often stay and rest when they visit the town for a holiday, health care, between conferences and while in transition between countries. 

This means I was instantly part of a community of others who have similar (but very different) life experiences and who are also there for counselling, or having babies and a variety of other reasons. Joining feels so easy and enjoyable; it makes the whole experience of a health trip even more valuable. I don’t know how to describe just how amazing it is to be briefly immersed in relationships that start and end quickly but with a connection that feels so unique and deep.

And it means it felt slightly reminiscent of living on Bible college campus, each family or individual has their own place to sleep but we all eat together. Perfect balance of personal space and community life. The big difference being that instead of classes to attend there is a pool, gardens and playgrounds. Other differences are that people often arrive and depart via the international airport, and stays are usually measured in weeks rather than years. 

It also means that I could really focus on my health as food and laundry is all taken care of onsite. Counselling and getting blood tests results back is exhausting, so I didn’t have energy for much else.  The only “housework” I needed to do while there was collect drinking water from the dining room, and drop my clothes off at the laundry.

Being away from both my passport and host country meant that I was free from any distractions and obligations. I could use all my brain space and energy on the specific things I needed help with.  Instead of resenting that I had to travel for health care, I’m actually really glad now. It worked really well. I feel like it was more helpful doing it like this than doing things from home, slotted in around normal life.

I remember the same feeling when we were away to have our first baby. It had been so hard to get there, and I was annoyed I couldn’t just do things from home like pregnant friends in my passport country. But when we were there, it felt so beneficial to have that family time away while going through such a big transition.

Yes, it was expensive, time consuming, and I needed a lot of help to make it happen; especially from my poor husband who basically had to put things on hold for a couple of weeks. But it turned out to be really effective in the ways we were hoping, as well as enjoyable. In fact so enjoyable I almost didn't want to come home!  It's a strange thing to have such meaningful memories in a country we aren't connected to in any other way. 

My clean laundry waiting for me! Boring photo but exciting moment.

I was excited to see Velvet Ashes this week is all about TRAVEL. I wanted some way to remember this whole experience of a two week counselling intensive while staying in a missionary retreat, so this blog post is what I came up with. 

I enjoyed being driven around by drivers who know where to go, on smooth roads, in closed vehicles with suspension. 

Photo by Owen Beard on Unsplash