sleep apnea and keeping the hope

bottle of yellow Joy dish detergentI remember when the film Dances With Wolves was a thing. People jokingly, or not, gave themselves “Indian” names. Mine was Mops Walls With Joy, because when the topic first came up, I was mopping the walls of my apartment. With Joy.

More recently, when I watch Game of Thrones, I find myself envious of Daenerys Targaryen, not for her dragons, but for her extensive list of cool titles: Daenerys Stormborn of the House of Targaryen, second of her name, Queen of the Andals, the Rhoynar and the First Men, Lady of the Seven Kingdoms, Protector of the Realm, Khaleesi of the Great Grass Sea, Breaker of Chains, the Unburnt, and Mother of Dragons. I may have forgotten some.

Me, I’m Mops Walls With Joy. Maybe I could also be Mother of Meatloaf.


In another conversation with a friend (same who inspired Mops Walls With Joy), well, she is going through some tough stuff. The kind of stuff where it is hard to hope, because hope will get you hurt. And I told her I would hope for her. And I have been doing that, relentlessly. I may not believe in much, and my spiritual beliefs are hazy at best, but I thoroughly believe in hope. No matter what, everything is going to work out. Bad things will happen, yes. But the bad things will end, and good things will happen again.

So I posted on Facebook that hope is my superpower, and in my head, gave myself the sobriquet Keeper of Hope.

Sounds nice and all, but yeah. Lately, it’s been hard.

My health has just been UGH. My team seems to be in agreement, after over a year of very expensive testing, that the severe apnea is the thing. It’s causing all my symptoms. At over 72 AHI (that means I stop breathing over 72 times per hour, more than once per minute, and for over ten seconds each time), and with my blood oxygen dipping to OMG 40%, it causes the crushing fatigue and extreme weakness–sometimes I can barely raise my foot high enough to step up on a curb, and forget climbing stairs; I simply can’t.

When your brain (my brain) realizes it is starving for oxygen, it screams for help. “Wake up dumbass, I’m dying up here!” And you do, I do, wake up, breathe, and then fall back asleep. Chances are you don’t even know you woke up. You’re too exhausted to remember, and also, everyone who is sleep deprived is prone to memory problems.

Going a step further, severe apnea causes actual brain damage. There are these little structures in the brain, called mammillary bodies (because they look like breasts) that process memories while you sleep, and in cases of severe apnea, these structures shrink by as much as 20%. Hang on, it’s taking me a minute to find some documentation on this that’s both credible and readable…here we go. Good ol’ UCLA. (This article also explains why this damage didn’t show up in the brain scan I endured.)

I didn’t really start out to write a post about sleep apnea, but the thing is, after all these months (over a year) of testing and decline, and thinking–hoping!–that this time we’ve found the problem, or that this next test will find the problem, I find myself in the same position as my friend, afraid to hope.

Watch as the blogger rambles all over half a dozen topics. Welcome to my brain off oxygen. Scattered. Please accept my apologies for that.

I am a blue collar housewife with a medical team. There’s a heart guy, a lung guy, and my regular Primary Care Provider. They seem convinced that this is it! This is the problem. It probably underlies my “original” medical issues as well as the more recent things, because apnea contributes to diabetes, unregulatable blood pressure, and pretty much anything else you can think of, because it breaks your brain, both grey matter and white. I didn’t even know we had white matter. Brain damaged though I may be, I learned something new.

Still afraid to hope, though.

The articles don’t quite seem to agree whether treatment (CPAP therapy) will completely restore my brain function. Most seem hopeful that there will be at least partial improvement. (Sorry, I’m too tired to chase links on this.)

If it happens, it may take a year.

The Keeper of Hope needs a bucket to carry hope in, because it is bleeding away through her fingers.

Which brings me to this very small idea I have had, that there is a fine line between hope and things to look forward to. I think I need things to look forward to, to hope for. Not so long term, either, although I do retain hope that there will be a long term. I’m just not sure what my capabilities will be, either physically or cognitively.

So stay tuned for the Hope Bucket:  things to look forward to, things to hope for. May be, or may not be, the same things as One Good Thing, or Thankful Thursday things. I’m not going to overburden myself with technicalities that will make this harder than it has to be. Life makes things difficult enough at times already. Not that I won’t post about those types of things, because I will. But the worry bucket needs balancing out.

Seems to me, it can’t be good to set down the good stuff so you can lug around more bad stuff.

woman carrying buckets of water near leningrad

No more mopping walls, with Joy or otherwise.  I have a new use for my buckets.  I am now Holly, first of many names, Mother of Meatloaf, Protector of Puppies, and Keeper of the Hope.

One thought on “sleep apnea and keeping the hope

  1. I will never stop hoping for you, Holly, Keeper of Hope, Protector of Puppies, (and hamsters;), Mother of Meatloaf. <3

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