It’s Monday again – a week since I last blogged. So much for the every single day goal. Oh well.
This past week has been a lesson in learning to cope. Small things, really, but adding up to one tired me. I’ve been having issues with the CPAP mask. If it sits properly on my face, it’s brilliant. I sleep well. I breathe well. All is good. Only, it doesn’t sit properly on my face, it slides. Up, down, whichever direction doesn’t matter. Only a tiny bit, but that bit is enough to break the mask seal and cause eye leaks. (Air blowing up into my eyes).
On Thursday morning, I went in for my 2-week check-in with the sleep tech. She saw the problem immediately. The mask is a teensy bit too small. The medium size of the same mask is too big. (They measure from bridge of nose to mid-chin). When I described the problem, she noticed that even just sitting there in her office, the mask began to slide. Solution: try other kinds.
After some trial-and-error, we settled on the Mirage Quattro, an older style mask with a forehead band. It looks more uncomfortable than the Quattro FX (the mask I have), but it feels a ton better, more secure. Sadly, as with all this kind of equipment, it has to be ordered via the durable medical equipment company, who will then provide it to me. I’m hoping they call me today.
In the meantime, I’m still using the machine & the FX mask and spend a great deal of time fussing with it. I discovered that I can (and do!) adjust it in my sleep. It becomes part of whatever dream I’m having. Definitely weird.
I’m also hoping that once this mask situation gets settled, I’ll have better sleep–e.g., less fraught with worry about the leaks.
Coping with this type of situation is tougher than I thought. It’s the same realization as being diagnosed with sarcoid and trying to wrap my head around the understanding that this is forever. It’s not going to be cured. It’s not going away. I will always have to use a CPAP…every single night. Sure, I know intellectually that it will become force of habit, just like I got used to putting my night guard in my mouth when I go to bed. But now, it’s still new, different, odd. Just another thing that makes me feel not normal.
As I was watching episodes of Private Practice via streaming, I began to notice how, in this show, as with most others, though we see patients coming into the picture with illnesses, conditions – there’s no reflection of regular characters having something chronic – sure, Addison has fertility issues, but that doesn’t impact her day-to-day functioning. Gabriel Fife was in a wheelchair – but you never learned why. Plus, he wasn’t a regular character. When these people go to bed at night, they don’t put in a night guard. They don’t use a CPAP. Heck, not a one of them even take medication on a regular basis. I love the show, but as with most TV, even though they try to bring in the “different”, the characters we see in each episode are pretty much perfect physically.
I get it, I do. The prevailing opinion is that no one wants to watch people who aren’t pretty and physically perfect. Only thing is, that definition varies from person to person. Plus, wouldn’t it be nice for once to see someone who does have a chronic condition that doesn’t result in being in a wheelchair? Something that nearly 1 in 15 Americans suffer from? It doesn’t have to be the focus of a “very special” episode–how about just showing us one character that has to hook up to a CPAP when they go to bed? To deal with it as just a regular part of life?
Frankly, I think I (and others) might learn to deal a little easier if we could see those like us reflected in our popular culture.
What’s your take?