a post from 2011- helpful words

debilitating

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.

(Yesterday we were explaining to a friend all the ways it has impacted out life and he said- it sounds debilitating. And i thought of chronic a few days ago when I realised it had been about 8 months.) 

timeline 2011-2012, part 4, doctor 6- the long awaited ENT appointment

After a long wait it was finally the day when we could see an ENT doctor.

By this stage Soeun had been in pain for about half a year. Although he couldn't totally explain it I could see the impact that it had on him.

He was really excited to finally be able to come to Australia and do some study we had been talking about for the past 5 years. It was easy to see how relevant the subjects were to his work back in Cambodia.
But frustratingly the tinnitus, ear fullness, dizziness was too overwhelming for him to think clearly. These also brought on nausea and fatigue.

Half a year of debilitating symptoms  and so far all we had was a pile of negative test results. I was hoping the visit to the ENT would be a breakthrough.

But I don't even remember what he did now, apart from telling us he was referring us to another doctor. Oh and charged us a lot of money.

Chronic. Invisible. Debilitating. and hard to diagnose

Chronic.  Invisible.  Debilitating.  and hard to diagnose

Three words to describe Soeun’s physical discomfort when he is in Australia.

In 2011 he started having symptoms of a vestibular disorder. We began searching for a diagnosis and treatment, trying to pinpoint possible triggers.  Five years later we still don’t really know much except that his symptoms begin after being in Aus for a month.  He still sometimes gets sick here but it’s not 24/7 debilitation that it is in Aus.

Our feeling is that visiting Aus for more than a month would be useless and even detrimental to us. So we will probably have to make more frequent and shorter visits. We have at least 3 places we need to visit.  Each trip is a big disruption and expense so previously we have tried to see everyone in the same trip.