Most people love a big relaxing candlelit bath. Put your head back under the water and give your ears a good soak. Maybe even have a snooze. Well, its not so straightforward with the hypoventilation disorder of Ondine’s Curse.
Ondine’s Curse is usually congenital and effects around 1 in 250,000 children with a condition called Congenital Central Hypoventilation Syndrome. However rare CCHS, the acquired form occurs in only 10% of cases of Ondine’s Curse, so just as rare or probably more so.
In 2014 I tested negative for Late-Onset CCHS (LO-CCHS) and it was concluded that mine was an acquired central hypoventilation disorder (ACHS) that I’d most likely had since asphyxiation aged 2-3 years old (I had been suffocated and choked a number of times (which I still clearly remember) by the same alcoholic carer who had regularly given me gin and valium between age 2-4) but which only required bilevel ventilation since it worsened following a 7 month respiratory infection 2009-2010 then chemo and two operations in 2011-2012. So for me, a bath, however enticing, poses some challenges. I get in and as soon as I feel too relaxed my breathing progressively slows, and becomes more and more intermittent. Then that sends me quickly into snooze mode and I have to get straight out in order to stay awake and continue breathing.
I fell asleep laying down without my ventilation machine only once since 2012, which was two weeks ago. I was woken by my heart buzzing and vibrating because I had gone into atrial fibrillation. In other words, my heart lost its rhythm and started just vibrating. The next step, had this odd sensation not woken me, would likely have been a stroke. As a result of that episode I got a lot stricter about ever closing my eyes without my ventilation.
I can fall asleep within 1-3 mins. I can fall asleep sitting, have even done so standing up, so I really have to be on the case. But there’s not just the safety side to consider, there’s the emotional side.
I just MISS being able to REALLY RELAX laying down on a swing or in a bath. So this week I took my portable ventilation out to the swing and laid down with it enjoying the summer’s day out in the garden.
Tonight I went further. My portable ventilation runs on a 4 hr battery and is carried in a leather bag. The tubing to the machine is long enough to keep the bag well away from the water and for me to relax in the bath with my ventilation mask on. I even went under water with it, knowing the headgear will easily dry out again. It was awesome. I had the most wonderful bath ever since the old days before ventilation.
I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.