it’s been a wholly hard time and that’s not something to be shared or remembered. no documentation needed when the walls cave in. but, it then dawned on me that maybe i should begin notching out the moments on my timeline of severe flames so that i can map out patterns or cycles.
i think sometimes we prepare without our conscious mind being privy to the information our subconscious holds. i cleared out my entire work space. i needed it clean and fresh. i needed to see no wips. i needed to let my mind rest.
we played, but stayed in. it was quiet with blinds drawn. the outside world was desert hot and desert dry and the garden laid to waste.
i had projects to finish and i raced to do it. i worked into the night and wee hours of the morning stitching and pinning and raving about completion.
i gobbled up time with my sister friend and drank as much iced chai as my stomach would hold.
it all came down - slowly like a leaf on the breeze - drifting back and forth, lower and lower until landing softly. quietly. my symptoms rose up from my shoulders and rolled down day by day. three full days of “rest” but mostly of writhing and whining. such a baby i can be sometimes.
i’m not usually one to be pulled by emotion - or bullied by it. i spent all of my tears when i was young and you’d be hard pressed to wring one out of me now, but this past week the damn broke and tears flowed easily - while i made dinner - or did dishes - or lazed around in bed - or talked to my mother - or did nothing at all. i hate to cry. my eyes burn and it gives me a headache. emotional hang over? feeling bad makes everything bad and having a chronic disease means facing this side of my life regularly. i hate asking for help. i hate waiting on others to take care of things for me. i hate being weak. i hate these flare-ups. i hate having to sheepishly admit that there is no cure which is almost like saying there is no hope, but that is the dark side of the pain whispering to me.
twice a year the pain comes for a visit. always. once in the summer and once in the winter. this time was the worst ever since my diagnosis. water balloons in my joints. nails piercing my hands and feet. skin burning. bones cracking. head pounding. muscles twisting. strength departing. hair coming out in clumps. arches falling. tendons slacking. speech scrambling. sadness rearing. joy dying… a little. but i’m a pheonix. every death brings life.
we’ve been pro-active this time around. i’ve been trying to edit my diet. i’ve been trying to keep the sun behind the shades. i’ve been trying to keep my body moving (yes, h - we started doing tai chi! the kids laugh and the dog barks at us). i’m trying to wait it out. i know the flares can last a month and i’m not at all happy about that. the timing is BAD. it’s our last month of summer! i had classes to cancel and trips to bow out on. it’s painful just typing this. i can’t knit.
i was talking to the boy about it because he knows, maybe better than even hubs what i went through when i was diagnosed. when i told him about the flare he knew what it meant. when i told him i couldn’t knit he said it was the worst part of all. yes! HA! so right. he’s so, so right. oh the sweet friends i have. sensing enough to call. checking in like clockwork. pitch and tone saying, “i feel you and it’s real”
now i’m spending my days like an old person… sipping tea and watching the pool fun from the shade venturing only into the lazy river and cursing those damn kids for bumping into me. every jerk makes my joints scream….
but also holding onto these last days before big baby girl is a SIXTH grader and little baby girl leaves me for kindergarten. trying to savor. trying to grip. trying to love.
knees bent. step forward, weight forward. weight back. turn.
systemic lupus sucks.
if you’re interested in more information about this crappy disease,