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.


Tuesday, July 12, 2016

Lemon juice, cream cheese, flour, butter, powedered sugar... Vanilla syrup..yellow food colouring
trigger june


Wednesday, June 29, 2016

2011

At the start of the year he got sick, we were hanging out for it to be over.
Saw some doctors, had some tests done, nothing.

June was an eventful month- lots of blog posts about health.
Getting sicker. And waiting between each doctor.

At the end of October we added the words chronic and debilitating.
Having words to describe it was helpful.

December- Balance clinic finally.

Some health related posts from our main blog are here.

Links to other people stories

Here is another article about someone elses experience,

“Coming Out” With Vestibular Migraine

Jessica JonesMy Migraine Blog3 Comments
I’ve unknowingly been suffering from migraines that have been damaging my balance system. I’ve been living with constant unsteady vision since 2011, and become increasingly prone to vertigo and motion sickness since I can remember. This condition has effected my entire physiology.




And another one here in the NY times.

Dizzy and Disoriented, With No Cure in Sight

The dizzy spells that are migraines

This article  explains a lot of what Soeun has , although some parts I'm still confused about.

The dizzy spells that are actually migraines - without the headache



Read more: http://www.dailymail.co.uk/health/article-2164600/The-dizzy-spells-actually-migraines--headache.html#ixzz4CyuLt09q
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September 2012: good days are bad, breaking out of the cycle

breaking out of the cycle! a link to my blog at the time


Soeun is spending some time in Cambodia. It wasn't a planned trip, but the side effects of chronic illness got too much for us, the disappointments and frustrations. It felt like it was useless- even destructive to go on how we were. So we are feeling relieved he can have some time getting healthy, and that we are making new plans.


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?"

being absent means it feels like he is more present

in August 2012 i wrote:

Over the last year and half Soeun has been sick most of the time, often feels like he's not really here. He doesn't seem like the person used to know. A friend asked me the other day how I was coping with him being away. He said something like his wife would find it hard if he was away for so long.

I actually feel like I don't cope very well with his absence, but him being in Cambodia actually means he feels more present as he is healthy and can do stuff like laugh, ride motos and he is even preaching tomorrow.

So these weeks while he is away I'm feeling ok, it was the 1.5 years before that when it was hard, when he was really absent.