Last month I had what I call a Fucking Flare. The kind of “flare up” where my husband had to leave work to care for not only me, but our toddler because I could not. The kind that fills your entire body with nauseating levels of pain. The kind where all you can do for “self care” is lie there and pray to the Universe that your pain meds kick in soon.
The day started like any other: My husbands alarm goes off at 6:15am, he gets up and gets himself ready for work while I stay in bed and start my RA day. I gently maneuvered under our beautiful but heavy duvet to lie on my back and start assessing the days stiffness and pain. I can feel already as I slowly roll over that my spine is on FIRE. That folks is Ankylosing Spondylitis at it’s finest.
I always start my assessment at my toes. Can the left big toe move? Yes? Success! That would put me off to a good start, but not today. It refuses to move. Attempting motion in that big toe sends screaming pain through my foot causing me to slightly jerk my knee – which I can now feel is also extra swollen and stiff.
“Great – one of those days.” I think to myself trying not to spiral down into a party of self pity and why-me’s.
This realization makes me give up hope quickly and abort my pain assessment mission. I have lived with this disease long enough to know my body. If the toes, knees, back, and hips (the knee jerk also caused stabbing pain in my hips) are feeling rough, every other RA participating joint isn’t feeling well today either.
Quickly my mind races, “What did I do yesterday?” “What did I eat yesterday?” I must solve this mystery of my random RA flare. As I pull my mind back to fixing this problem – so I can get out of bed today – I reach to my nightstand, adding my right shoulder, wrist, and fingers to the list of ailments. I haphazardly move my stiff, painful arm to grab my cellphone and tug. As the whole cable rips from the wall I shudder – I am still an AV tech at heart you know. (I heart cables.)
After this battle with the cable, I set my phone on my chest and rest my arms like I’m in a casket over the phone. And I let a few tears fall. So. Much. Widespread. Inflamation. And. Pain. I take a few lamaze like breaths, open my teary eyes, and lift the phone to text my husband.
Now realizing my thumbs are too stiff for texting, I use my nose to push the little itty-bitty microphone button on the bottom left and wait for the “ding!” before whispering “help” into it. I could’ve just screamed “HELP!” when I first felt the pain and he’d probably be here by now, but the children would also wake up. A flare doesn’t stop for kids… and kids don’t stop for a flare. So, I gently maneuver my thumb to press send. And go back to my casket position – exasperated. I think to myself, “Fuck – there goes all my spoons” and giggle in my mind. Not out loud. I can’t waste these spoons.
At this point my eyes are closed and I’m trying to just focus on breathing so that the pain doesn’t make me vomit. It feels like forever, but when my love arrives I can see my phone says 6:30. 15 minutes!? I’ve only endured this for 15 minutes!? I try not to cry as I tell him what’s happening. Channeling Strength. *deep breathes*
Corey knows when I’m lamazing it up, I really need him. He quickly gets my pain meds, turns on the heating pad and puts the switch in my hand before going to get my icepacks. After returning (I love this part:) He kisses my forehead (awe) and then goes to finish getting ready for work and get the boys up and going.
Some days that start like this get better quickly. But considering this flare has already been disclosed as a Fucking Flare, you can bet today wasn’t one of those days. As I listen to the boys head downstairs to eat with their daddy, I lay silently in tears that I simply cannot hold back which are running into my ears. “Where mommy go?” I can hear my babe say. Now I can add my Heart to the pain list…
Eight icepacks are freezing my body, but the duvet is too heavy for me to move them. At some point Corey comes back up and moves them around for me as requested. Kisses me again and asks if he should call in. I say no. I’m fine. We both know it’s a lie but I still am hoping a few more minutes and the meds will be enough to get me upright and on the couch.
By 8:10am he’s gotten both boys fed, dressed, and entertained until the oldest ones bus arrives at 8:50. I have laid in bed for two hours and 5 minutes trying to gently move anything that will budge just waiting for pain meds to kick in. Please please please kick in.
It’s time for Corey to leave now; he helps me out of bed in the most gentle, slow, assisted motions we can manage. (Have I mentioned how grateful I am he’s chose to be a nurse when he finishes school? Nurses for the win!!) As we limp past our 7 year-old’s room I see him quietly reading on his bed. I try to hold back my tears and fake a smile, “Good morning, Love” is what I can weakly muster up. “Good Morning, Mommy!” he says with such enthusiasm. Man, I envy that enthusiasm.
And down the stairs we go. All 13 of those asshole steps. When we moved here I wondered if they would be a problem but it had been eons – ok, a few months – since I’d had a Fucking Flare. A few little flare ups, but nothing major like today. So, I thought it would be ok. Let me tell you this: In that moment, right there, as my husband and I tried to figure out how I could get down the stairs with knees so inflamed they couldn’t bend far enough to reach the next step, I decided it was NOT ok.
Stairs = Not Okay.
Ok – Focus. Stairs. Must get down. I lean gently against our wall opposite the railing, put my arm around Corey’s shoulders and sort of half step/half fall onto each of those 13 freakin’ stairs. Each one takes what seems like a minute. Each landing sends pain rippling up from my feet into my ankles, shooting through my knees and landing ripely in my hips, SI, spine. Each time I land my shoulder is jarred which sends blinding pain from my wrist to my elbow, through that shoulder up into my neck. The noises I am making have made both kids come to the stairwell to see what on EARTH is happening.
“Go do your thing, guys.” Corey says sort of shooing them away with a hand motion.
“Only 10 left, Stephenie.” I think and Channeling Strength once again as we make it to the landing and turn the corner. Breathe. 6 left. Eventually we’ve made it, but without my phone, heating pad, and icepacks. Corey gently sits me onto our love seat with pillows propping my tender, stiff joints, and returns to get my aids.
When Corey finally goes (20 minutes later than he normally does), he puts the baby gate up to keep the toddler confined into the living room with me, puts food rests around me to keep the toddler off of me, makes sure I have my phone in reach. He leaves diapers and wipes next to me, and lastly kisses me before disappearing for the day. “Call me if you’re not better in an hour,” he says. “I love you.”
8:40am rolls up shortly after he’s left. I take the deepest breath my weak body can manage and yell up to Xavier “Bus Time!” I listen for the thumps of his feet putting away his book to make sure he’s heard me. Thump thump thump, and a whole lotta rumble as he bounces down the stairs.
“Are your owies bad today, mommy?”
Channeling more Strength… “Yeah babe, I don’t feel well today.” don’t cry… don’t cry… Streeeeeennnnngggggth.
“Oh,” he says then makes his pensive thought face before saying “I’m glad Quenten gets to stay here and take care of you!” and off he bounces to pack his backpack.
“Mommy? Where is my lunch?”
…oops. I forgot to make his lunch last night. He has a special diet to aid in his ADHD, so “hot lunch” are not words he’s used to hearing. But right now, getting up and making that cold lunch sounds FAR more painful then dealing with him in his own sort of ADHD flare up later today.
“How about you have hot lunch today?” I try to say with upbeat enthusiasm. It is received with even more enthusiasm (and more 7 year old chatter) as he gets his back pack, snow pants, and other winter gear ready. Chattering about something the whole time. Honesty Time: I’m in too much pain to actually understand – or even care – what he’s rambling on about in a nonsensical giddy manner in the other room. As long as he sounds happy…
“BUS! Bye mom!” “Love you sweetie!” and he’s gone. There is a moment of silence where I close my eyes and slowly exhale, reveling in the fact I’m down to one kid now. One on One. Maybe I can make it without calling Corey home from work. (We can’t exactly afford him to miss work with me not able to work in general.) I close my eyes to recuperate as the toddler watches Bob the Builder.
I try to avoid thinking about the pain and instead focus on the nice warm heat of the heating pad, listen to Bob and friends, try to think of happy things, put a little smile on my face (I’ve heard it helps with pain… so why not!), and try desperately to “relax” through the pain.
“MOMMY! MOMMY PLAY QUENTEN! NOWWWW! Peez?” Quenten yells into my face. He climbed the foot rests barricading him from me and smacks me in the face before falling onto me. I gasp, resist screaming, and open my eyes to meet his beautiful blues staring right back at me with a big ole smile on his face. I smile and gently ask him to get down because I don’t feel good. Then watch as he responds by hugging me and sliding down.
He sits on the floor next to my propped up love seat spot and reaches up his hand to tenderly touch my foot. He is barely resting his hand on me, making a short petting motion, and it hurts. He is too darn cute for me to tell him it hurts.
Ok Pain meds… ANY time now would be great. Time. What time is it? iPhone says 10:05am. And now I have to pee, my stomach is starting to growl… it’s now or never I decide.
I try to use my hands to lift myself off the cushion to scoot my butt, but my wrists are unable to bend far enough, so I try to reach with my elbow to the arm of the love seat, but my back won’t turn far enough for that to work either. I decide to try rolling a little and maybe my legs will bend now. Success… I am sitting with my feet on the ground. I have never been so glad my father rebuilt the legs on this love seat to make it taller for me and my silly knees as I was right then. I lean my head back on the pillow behind my head, and take a few reassuring moments and prepping breaths before leaning forward, with my arms as straight out at my chest as they go, into sort of a half squat position and try to gain balance before standing “up”. Which, today, is sort of a half hunched over, barely balancing, version of standing today.
Cane! Did my husband leave me my cane? Yes. Right next to me. Oh god bless that man!!! I delicately grasp my cane and try to straighten my legs out as much as they can so that maybe I can walk to the bathroom. Slowly: Tiny restricted-step by tiny-restricted step, I make it. I bring my phone and call him after I’ve landed on the toilet.
“I can’t do it, honey” I blubber into the phone when I hear his voice.
Soon he is home. (Thank freaking god.) He gets me back into bed, propped up, feeds me prednisone and more pain meds, brings me lunch, and goes to take care of Quenten.
“So much for existing today, I guess.” I think feeling fucking useless as I drift off into a pain med induced sleep.