Some days I think the only thing I truly know is pain. CRPS has been the the biggest thing in my life for the nearly 8 years that I have known what it was. It is the thing that forces me to overcome hurdles that are normal people Thursdays. In honor of Rare Disease Day‘s campaign to show your rare this year, I thought I would write about an ordinary day, a day whose only remarkable feature is that it is a day, seen through the lens of CRPS.
This is my reality
7am. Alarm goes off. I roll over and am relieved that the night is over. I was fretting about sleep and pain all night – acutely aware of the moments as they taunted me. Sometime around when the sky started to lighten my body gave in to exhaustion. But fitfully at best. It can’t be more than an hour later.
I debate taking a shower. Can I handle the feeling of the stream of water today? Will I be able to use soap? Maybe I can get by with one of those fancy body wipes designed for use at the gym. I’m sure I can get one more day out of this hair with enough dry shampoo. Or maybe I can just cover it with a scarf and pretend I’m that kind of cool.
I look in the mirror, my eyes sunken from exhaustion. The dark circles that never leave mimic black eyes. There’s a sallowness to the skin that’s covered with red blotches. Wrinkles from stress and worry have popped up sometime between when I was fun and today. I work my way through 8 steps of skin care that sit somewhere between perfunctory task and ritual self care. Each step trying its best, but stopping just short of leaving me with a face that passes for healthy
I pull out foundation, the most opaque I have. I dutifully bounce and buff it in. The dark circles are never quite erased, despite the layers of concealer applied. I pull out all the tricks – a rosey blush high on the cheekbones for a fake healthy glow, a radiant bronzer to hide the casper-toned flesh, a cream eyeliner swiped on the lower water line makes my eyes look open while just a dab of sparkly white eyeshadow at the inner corner of lids lends a helping hand.
My face passes. My messy bun is like home decor from Walgreens – almost cute, but something looks a little cheap.
I debate outfits – leggings to keep the pain at bay or a dress with tights to hide the purple CRPS leg covered in hair because shaving is excruciating. Twenty minutes later, I finally coaxed the leggings on, tugged on a tunic and kimono top. Not bad for sick-girl chic. Not great for working professional creative.
I really hate the fact that I can't stand on the train. That the pain spikes so much that I lose control of my left leg. It feels like there are 2 Mary Frans – strong dancer who fights every day and sick person Mary Fran who needs a cane to get to & from work. If I can dance, shouldn't I be able to handle the train? At least my skirt is pretty…
I’m running late, putting those pants on took much longer than I planned. I come back into my apartment three times for various things I’ve forgotten. By the time I make it the half block to the train I’m spent. And of course the escalator is out of service for the third day in a row. I carefully climb the stairs with my cane in one hand while the other grasps the railing. Each step to the rhythm of disgruntled sighs from the commuters behind me who think I should be going faster.
It’s definitely a bad pain day, I probably should have worked from my couch, but it’s awfully hard to collaborate over the phone. I think about all the things I have to accomplish while I wait for the train. I will it to arrive faster so I can sit and get some weight off my leg. All the accessible seats are full and the one middle of the bench seat has a bag on it. Commuters see me and drop their faces to their phones hoping it makes them invisible. I size them up – who is sitting with the window on the left, that’s the seat I need. It takes several “excuse me”s and large waves to get someone’s attention and I can see them debating if they really have to stand. It’s a scene that repeats when I transfer trains.
The vibrating train has me nearly in tears by the time I get to my stop. Suck it up. There’s work to do.
Every hour, the pain gets just a little worse. I carefully plan taking pain medicine around when I have to be on for meetings. I fight the side effects with copious amounts of chai and Coke.
I give myself 5 minutes to silently cry in the bathroom. Thankfully it’s allergy season and everyone has runny eyes.
I pack up and debate leaving my laptop in my desk but know if I do that, someone will need something from me when I’m at the hospital tomorrow. They’ll need something either way, but at least I can work if I have it. Grudgingly I pack it in my bag next to my cane and medicine.
I get to the train and contemplate my options – head to the platform for trains headed home and fight a crowd for a seat after waiting for a train empty enough to get on, or take an extra 25 minutes of vibrating torture to ride around the Loop with a guaranteed seat. The seat option wins out – I don’t have the willpower shame another stranger today.
The eager greeting of Cecelia the Cat welcomes me from down the hall. I contemplate a Real Housewives marathon but I want to write. So, I pull out my laptop and plop on the chaise. I nod off after every third word. I’ve promised so many people posts or videos or website help and all I can do is doze off in the chair.
I give up on productivity. I go through the motions of my almost ritual skincare, but it feels more like a chore than a luxury. Every moment I spend washing is a moment I’m keeping myself out of bed.
I climb in bed, half asleep. Thinking of the dishes in the sink and the laundry in the washing machine that I’ll have to wash for a third time. I attach my human battery charger, but no matter how I position it, it beeps obnoxiously if I breathe too deeply. I start thinking about all the tasks I should have accomplished at work. If only I could have been faster. I feel guilty for skipping ballet and hope my friend understands that I just can’t today but I want to see her.
My body is just a cruel master. I lay there for hours in the dark, feeling the minutes pass. Wondering if I will actually sleep tonight or if the fear of sleeping through my alarm on a procedure day will keep me awake all night again.
At least I got the VIP room today. It was a great place to get the news that in 2 weeks we’re going to try an at-home epidural catheter that will be in place for 2-6 weeks rather than finishing this treatment series. Super fun. I didn’t want to go back to dance or anything. #crps #rsd #raredisease #chronicpain #chronicillness #butyoudontlooksick #spoonie
I also filmed a video for the Rare Disease Day Show Your Rare campaign. I had a hard time talking about this life and this disease – I didn’t have the ability to hide behind a screen. The video ends where it does because my mascara was starting to run and I didn’t think I could keep it together.