that’s what the universe was asking me on monday.

sunday night i did what normal people do an i made a plan. on tuesday morning a friend and i would drive our kids to a local bouncy-castle type place for some fun and a little break in the, “why is summer so boring at our house?” conversation. seems simple and straightforward, right?

not so much.

sunday night i went to bed with a fairly bad headache, but that’s nothing that should make headlines. by late sunday night, it was bad enough that i took some pretty serious painkillers. and i took 2 of them. not a good sign, but i still hoped to nip it in the bud. wrong.

monday morning i woke up throwing up from the kind of screaming stabbing smashing pain you never want to have. but really never first thing in the morning. i clawed my way over to the phone and cancelled a doctor’s appointment for later in the day and poured myself back into bed. when my youngest came to wake me up i just gasped, “…bad headache…can’t get up… get a big kid…” and put a pillow over my head so she wouldn’t hear me whimpering.

sadly, the bigger kids know the drill, so they mostly left me alone in the dark. every once in a while they would check to see if i needed anything, but since i’d planned ahead and dragged the trash can next to the bed (easier to throw up when you don’t have to move), i was about as ok as i was gonna get. each of their questions was met with, “unnh”, which is about all i can say when i hurt that much. and my kids know that translates to, “i’m alive, i’m coping, and that’s about all we can hope for right now.”

and i know this is not the correct approach at all, but i just couldn’t help feeling, all day monday and tuesday, that the universe was like, “ha! you think you’re miss thing! you want to go making plans and having a normal life? well i’ll just show you little miss chronic illness! you done got too big for your britches now, dintcha?” and the universe spit in my face.

took me down a notch.

slapped the smug right outta me.

dang. lesson learned.

the day after a horror show like that is always unreal. i told *h it’s like crawling out of a grave. i have no energy and i’m tentative about everything. my confidence is zero, my calm is zero, and my risk aversion is 100 percent. i don’t know why it works that way; i just know that it pretty reliably does.

i wish i could bounce out of bed, stronger and more resilient. i wish i could use the time under the covers like a caterpillar uses its time in the cocoon; i could emerge a glorious and breathtaking butterfly rather than a ghost-like moth.

but the pain just does something to me, and after all of these years of fighting, i feel more like a P.O.W. than a HERO.


for the zillionth time we are adjusting my meds. one of my team of doctors (wish i could say that only for dramatic effect and not cuz it’s true) asked me when i’d last had a pain-free day. “ummmmmm… 2002? yes- early 2002!” i was kind of excited that i’d gotten the right answer, even though i hadn’t studied  for the test. but he looked rather miffed, like i’d disappointed him in some way. he made me wonder if maybe i’d misunderstood the question. how else could i have gotten it wrong?

but that wasn’t the point, was it? he was looking at me because, in his mind, i’d just crossed over.

no, not  ‘crossed over’, as in living to dead– crossed over as in formerly sane, normal, workable patient with pain, but now to be treated as a hated/detested/despised Pain Patient. one who is probably drug seeking. one who probably fabricates symptoms to get attention. one who probably makes things up to scam her employer or worker’s comp or whoever. one who can never again be trusted. one who should never again be truly listened to and one who should hopefully be passed off onto a different unsuspecting doctor ASAP.

and perhaps that’s why coming out of an especially bad pain day is as wrenching emotionally as it is physically. because perhaps a small part of my psyche, somewhere deep within the recesses of my brain, i’ve bought into that BS too.maybe i believe that i am that drama queen nightmare pain patient who just needs to get a grip.

but in my heart i know i’m not, and maybe that’s why i just hide under my pillow and whimper.