About this blog

Chronic. Invisible. Debilitating. (and hard to diagnose.)

These 3 words describe Soeun’s physical discomfort when he is in Australia.

The actual blog part of this blog (Scrapbook) is partly things I wrote in June 2016 during Migraine Awareness month reflecting back on 2011-12, trying to understand things, as well as links to relevant articles I'm reading these days. And bits and pieces of other things about life with the Dizzy Monster.


What happened in those 2 blurry years (label timeline.)
To find out more about each doctor's visit click on the link.


I left Cambodia and moved into our on campus accommodation in Australia. Started a new job.

Soeun finished up teaching semester 1 in Cambodia. Arrived in Australia to start study

March- May
A month after he arrived he woke up one morning with pain, dizziness and vomited.

doctor 1 and 2:
 After a few weeks of dizziness etc we saw, a nearby bulk billing doctor, helpfully he did lots of tests , all negative but said his red blood cells were a funny shape and we should go to a blood doctor
a friends dad who is a doctor saw Soeun and said it looks like an ear issue, said we should see an ENT

doctor 3:
the 3rd doctor took a look at the pile of negative test results and heard soeun say he was dizzy. from that it seems like he thought nothing was wrong , but after a few visits wrote us a referral to and ENT

At some point we learnt about Meniere's disease, it seems Soeun's symptoms were very similar. But I think we were waiting to see an Ear doctor to talk about it.


doctors 4&5
After a week long headache we went back to doc 3 and he prescribed some  migraine meds. After some more scary acute pain we went to hospital. The pain was increasing each day.
He saw first the ER doctor and also a Swiss neurologist. They scanned his brain and did a million other things over the course of the day. Found nothing interesting, said it was probably a migraine.


doctor 6  
Finally the long awaited ENT appointment day arrived! anti climax , he just referred us to another doctor (well he said he did...)

All the way along we have been wondering "are things too hard, should we change, or keep persevering?"

We were highly motivated to stay and try to make things better, we had been looking forward to this time in Aus for years. There were opportunities for both of us that we really wanted to pursue and it had been so hard to get to Aus. If we left now we would lose so much.  


Soeun visited Cambodia. We were planning any trips but he made one out of desperation! His symptoms eased while there, sleeping outside in a hammock near a rice paddy. Got sick again when he had been back in Aus for a few weeks.

At some point we tried a few things as described here. It seemed like something in Aus was making him sick, so the food was a big suspect. He tried to eat just what he would eat in Cambodia. We thought about preservatives in food, learnt about chemicals that build up over time. Discussed the difference between the two diets- such as wheat and dairy are not common in Khmerland.

From my blog:
Just in the last few days I've started describing Soeun's undiagnosed sickness as chronic and debilitating. It's helped to have words to describe it. Other than that we don't really have a name for it. This makes  it hard to explain it to people, and we need to explain it as it impacts our life here so much.

So we need to start planning in the light of that, not going against the flow thinking, next week will be better, next week.. next week, we'll start XYZ when he gets better.

doctor 7
Went to a different GP. She went over the whole history with us and followed up in the ENTs referral. (Discovered we were waiting in vain, fixed it up.)

From my blog:
sick of sickness- we had been waiting for him to get better for 9 months


doctor 8
Finally we got to see a doctor at the Balance clinic (had been waiting since July 8th).
After some tests and follow up appointments the doctor said he does NOT have Meniere's Disease. Started him on some different meds.

On Monday 19th Dec 2011 I blogged:

is it an inner problem?...is it a migraine?...no!..its an inner ear migraine!!


We had been thinking it would be better to leave Australia and move back to Cambodia, after an unproductive and destructive year.  But over summer Soeun's health seemed much better. Not sure if it was the drugs or the changes or just random.

But things got bad again. Felt like his symptoms worse than before. And so unpredictable it made it so stressful. 

Soeun visited Cambodia again. He felt better when he was there. I missed him, but because it was so painful seeing him sick in Aus I actually preferred him away in Cambodia where he was healthy.

September- November

From my blog at the time :
good days are bad

Good days in the middle of chronic illness remind me of people who smile at you but don't mean it. At the time it seems good and nice but looking back you realise you've been deceived.

Soeun feels long overdue to leave Aust, we're only still here because sometimes things seem ok, so we think maybe it will get better around the corner. But now it feels like being in this situation for so long is making things worse. All the way along we have been wondering "are things too hard, should we change, or keep persevering?"

Started to wrap things up in Aus. This time was really hard. I think we had already decided to leave for sure back in July, but we couldn't just run to the airport, there was so much to do. When we found out we were pregnant things became more urgent. We could barely look after ourselves let alone someone else. Had to get back to Cambodia and set up a place to live and work out which country to have the baby in.

During this period at least 4 people we knew of died. Three in Cambodia and one in Australia. 

November 2012- January 2013

Moving overseas always takes a lot of energy. When you are pregnant its really hard..and with the sickness and stress of the 2 years as well. But Soeun's health improved! Like night and day. I think we were always a bit confused about the diagnosis and I think when he was suddenly so much better we didn't really think about what he had or didn't have but just went forward starting our new life. 


Since then we have had 2 babies (going overseas both times) and moved house a few times. So thankful we have been able to do all that. I could not have imagined that back in 2011-12.

Learning to live with the Dizzy Monster. SOme months we hardly think about it, sometimes  Reading about it online. Found out there are other people who have the same diagnosis and who are also confused. Some of them actually have Lyme or toxic mould sickness. Noticing triggers. 

Still feel confused and stressed when we think about those years. 

Tried to visit Sydney last year- wanted to visit as soon as possible. Rip the bandaid off. Such strong bad memories, so I feel anxious thinking about going there. 

But I'm pretty sure when we're there it will be ok as long as we don't stay more than 4 weeks. And as long as we do things the easy way, as the practicalities of travelling with young kids and a sick husband will be hard. Some days at home its hard, and travelling just within the country is hard, so changing time zones is going to be super hard. 

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