Holidays are so hard. Sasha used to ask me which one was my favorite until I kept answering that I hate them all, and I do. Today was a complete success by any standard of ours, Emily had bread, Sasha had hot chocolate of all things, and we accomplished present opening as a family that included their dad. There was no vomit, no pain meds. And the house isn't even completely torn up at the end of it all.
My face feels like melting. Sasha has struggled hard all day. Thank God no family invites us anywhere or comes over, because the day is overwhelming as it is. There was regular food prep to be done beside the extra stuff, and it's having any extra anything I think that blows it all up. Being so stretched to capacity at all times physically, mentally, it's no wonder this is what a successful day feels like, a nap and a half in.
I think what else makes it so hard is not having a frame of reference. In college everything is weighed and measured to the point where whether or not you even get to stay depends on how well you perform in the regimented details, migraine every day be damned. I'm so glad I didn't know then that would be the easy stuff. Jesus, I remember the first killer migraine I had in school, second semester in, my friends almost took me to the hospital because I was babbling somewhat deliriously in the back of their car. I remember getting to bed to sleep it off and waking up still in a lot of pain, wandering down the hall and asking someone for pain meds since I was so unprepared. *shudders* But the pain was all my own to manage, as well as the finances.
Clearly there are measures of success now, or the state would intervene! And I guess now I do feel successful in many ways, pulling library books and dog toys out of my bed regularly. It's just so hard to pull the wonder out of my head when I see pictures of people I know, doing things, getting together, smiling. How in the hell do they do that? I know we struggle but how do we struggle THIS much? And how have we struggle This much for This long? It doesn't help that seriously every medical person we ever see calls us a "tough case" and refers us elsewhere for further study. Not that I don't love our current team, but uh, we're our medical team's edge cases.
It's just hard to wrap my mind around sometimes. Or maybe it's just hard being tired. Or maybe it's just Christmas, a successful holiday. Lots of chronically ill folks have to redo everything, are homebound, and many are way worse off than we are. We are surrounded by some incredible friends and family. And seriously, no vomit cleanup OR pain meds? Incredible. I won't lie tho, my heart breaks for lack of wellness, that we measure success by lack of vomit cleanup or administration of pain meds, which we only missed by careful management. Merry Christmas anyway, and a Happy Fking New Year.
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