Mastodon Keskiviikko —


Much to report!

Slept in the guest room last night. I woke up many times from pain, nausea, and headache but there were NO FALSE ALARMS from my medication pump. So my overall quality of sleep was ok-ish and I felt human again today, if fatigued. I also had the great relief of thinking, ok, well, if we can’t figure it out I can just sleep in the guest room forever. Sigh.

When I gave this status update in our group chat, wondering what on earth is different about our bedroom at night, Henry asked if it could be Dave’s CPAP machine. I said no, ‘cause he hasn’t used it in months. But then Dave said AH HA! The CPAP machine is still plugged in and it phones home to Kaiser in the night to transmit diagnostics over cellular, which is a strong RF signal (stronger than Bluetooth or wifi).

This would explain everything. Why the false alarms only happen in the bedroom. Why they only happen at night. I almost don’t dare to hope, because if this is not the solution then… yeah well let’s not think about that. The CPAP machine is now unplugged. I’ve moved all my sleeping equipment back into our bedroom. My fingers are crossed.

I thought very hard about baking cookies today and set out the butter and eggs but then I ran out of steam and decided I’d be better off not pushing myself too hard on only a semi-decent night of sleep. Butter and eggs can sit on the counter overnight. It’s encouraging that the thought of baking even crossed my mind. It’s been since before Christmas that such a thing even seemed possible.

My wonderful palliative care nurse, Adam, called yesterday to check on me and set up an appointment for a visit. I told him I’m really worried about how out-of-condition I am now after lying in bed for a month, but that it makes me really nervous to do my stupid boring little exercises in case my heart rate elevates and doesn’t go back down. It’s SCARY to be this weak and fragile. I can barely lift anything. I can barely walk. I’m sure if I could do a little bit of safe exercise and strengthen my muscles I’d feel stronger and better.

Adam said he should be able to get a home healthcare person to come over and help me with my exercises, and suggest others, and monitor me while I do them so I don’t feel so fearful! He’ll be here next week for our appointment and then he can set me up with that service.

Still eating like a horse. Oatmeal for breakfast today, and then an absolutely JUMBO quesadilla for lunch. A month ago it would have taken me two days to eat that much. Not sure about dinner. It’s 6pm now and I’m still full from lunch, so I’ll probably fix an apple and cheese to munch on while I get sleepy, and then snack on mini pretzels and peanut M&Ms (which is an amazing combo, btw. Sweet and salty and nutty and crunchy)

Discovered that I had totally missed the second season of the Killer Psyche podcast, thanks to Amazon Music’s abysmal app design, with the result that I’ve had lots of new-to-me episodes to binge over the last couple of days. As of now, though, I truly have only one unplayed episode. I’ll switch back over to the Something Was Wrong podcast next. Have also been enjoying old episodes of The Taskmaster Podcast. That one soothed me back to sleep several times last night.

I stopped having any luck with the “Nothing Much Happens” bedtime stories podcast. I think I need to be at an exact level of sleepiness before I put it on or it just bores me to tears and irritates me. It makes me think about sleeping, too, which is counterproductive for me. I need to sneak up on sleep from behind and pop a bag over its head by listening to something of the exact right interestingness so that I can tell myself, “it doesn’t matter if I fall asleep, I’ll just listen to this lecture about the history of English or this silly moment-by-moment analysis of a Taskmaster episode until morning”. And that can help me get to sleep.

Another trick I use to settle my mind is to type out a mental transcript of whatever I’m listening to. So I actually see the words printing out on a sort of ticker tape in my imagination. When my mind wanders, I bring it back to its transcription task. This has been working pretty well lately.

Category: Blog 3 comments »

3 Responses to “Keskiviikko”

  1. Kathy

    Thank you for sharing so much detail. I care about all of it. So happy to know you have an Adam to help with strategies and sometimes eat like a horse. Your sleep listening sensibility is similar to my own. I have to have words in my ears all night but the trick is they have to be interesting enough to distract me from worrying but just inconsequential enough to let me lose the thread and fall asleep. That’s a very fine line! And they can’t ruin it by having jarring intro and outro music!

  2. Tya

    I think it was you who mentioned this book called (The fortnight in september)

    It is a great read before bedtime and its different than the nothing much happens audiobook.

  3. kara

    Oh yes, excellent book in which nothing much happens but it’s not boring! :)

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