I have a very romantic weekend planned. While everyone is eating expensive dinners and watching 50 Shades of Sexual Assault this Valentine’s Day, I will be having my second sleep study. We’re going to try me on CPAP as I’ve said before, and it’s likely I’ll get one of my very own. It’s better than chocolates and roses any day!
…I should note that Valentine’s Day means nothing to me at all. Lest you think I’m actually bitter.
I will call the pulmonologist and make an appointment today, they’ll want to know the results of the study before we get started with equipment and everything. I’m hoping it all helps with the exhaustion and whatnot, I’ve been having a REALLY hard time waking up this last week or so. It might be the med change; we’ve upped the dose of Adderall from 10mg to 20. I don’t know that it’s doing a better job than the Nuvigil did, honestly. But we’ll see.
Sleep’s been kind of elusive these days, but that can be written ENTIRELY off to stress. I’m packing for real, now, and going through things to give up for the garage sale. It’s three times as difficult as it should be – I have to fight my inherent laziness, the high cost of physical exertion that ALS brings, and it’s just..SAD. It’s depressing as hell to go through my things with this air of finality. It’s moreso than the usual “Meh, I don’t need this” when you move, it’s “I will probably never have another use for this at ALL and I don’t want someone else to have to deal with it when I’m dead.” So it makes me tired and maudlin and my brain won’t stop even if I’m physically tired. I have a ton of people on standby who will help me pack if I ask, but they can’t go through my things for me. That’s my sad and lonely duty.
Also, I’ll be honest, the thing with the news article about my work and ALS has stressed me right the fuck out. And that conversation continues on my work’s internal news site.
Work stress, too, was about ALS recently.
Life seems entirely about the stupid disease lately, and it’s all stressful, and it’s really hard sometimes to not just curl up and sleep and avoid it all for awhile. I just don’t have the time to indulge in that. It hasn’t beaten me, not by a long shot, I still know everything’s going to be just FINE, goddammit, but it’s harder right now. It’ll calm down and be okay in a bit, but all I see for awhile is deadlines and packing and expenses and pressure. And while I’d like to just sidestep all that, and play Skyrim instead, I know I can’t, and it will be so much worse for me if I even try.
And so I will continue to work, and pack, and sort, and not sleep very well, and spend too long in the mornings lying in bed and snuzzling my cats instead of getting up and getting dressed for work. For now. For awhile. Not forever. There will eventually be an end to the work, and most of this stress, and I’ll be allowed to properly sleep.
Bloop bloop bloop bleep bleep.