Tag Archives: bipap

Saving Face

I’m having a hate–hate relationship with my Trilogy, which is the BiPAP machine I use to breathe at night. Except, do I actually use it to breathe at night? The fact that I’m unclear about this is the biggest part of the problem.

Back in June, I was in the ER and then the ICU for a case of pneumonia. I had already been told that my breathing levels were on the decline, and the illness didn’t help. I left the hospital with both a cough assist and the Trilogy, and I was told to use the latter every night.

Friends with ALS told me to try the nasal pillow mask, because it was the smallest and most manageable. Little plastic “pillows” fit into your nose and a single strap wraps around your head. Air blows directly into your nostrils all night. But it didn’t work for me, at least not at first, because my mouth kept popping open, shifting the air around and waking me up. So I opted for a full face mask, not unlike an imprisoned serial killer who eats his victims. That’s right, I said his. It was not a good look for me. Read More>

Just Monday

I woke up early this morning, my hair matted down under my breathing mask, so thirsty I could feel the dry pockets in my mouth eviscerating all the moisture in the room. Sleeping is uncomfortable now, so that sometimes, when I find myself in the perfect position (usually on my side, with my legs tucked up in psychic regression) I feel that I have never been happier. Take something away, take it away again and again, and then return it, even just partially. It’s either the definition of bliss or the definition of torture. I can’t decide.

Otto woke up at 5:30 AM, crying in his crate next to Rob’s side of the bed. He’s been sleeping pretty well, but it’s still something like having a new baby, and Rob mutters his displeasure at these early risings. It’s not just the dog. When I’m thirsty in the middle of the night, I need Rob’s help to wrestle the mask up above my lips, to hold my water bottle up so I can drink. When my legs are so leaden under blankets that used to feel like air, I have to ask him to roll me over. Then the dog cries, then Scarlett appears. Then it’s breakfast time, the day has begun, and we feel that we didn’t get quite enough night.

The nighttime difficulties make me feel the most helpless. I lie there for as long as I can, not wanting anyone else to be disturbed, and still, eventually, I throw the sleep grenade. I have to. Read More>