Waking Up in the Afternoon

By now you know that I have to take a bunch of pills throughout the day, all of which make me fall asleep.

Waking up in the afternoon is often more difficult than waking up in the morningtime. For example: today. Right now.

Coming out of my midday fog, I find myself in a cool, dark room on a hot, sunny day. I am emerging into a dreamlike reality, watching an obscure Youtube video that all too perfectly mimics my current mental state.

(I am not completely unconvinced that Lhasa de Sela isn’t one of my spirit guides.)

Here Lhasa is, lulling me out of my lull, singing my love-life story, so honestly and so sweetly, in my preferred 6/8 time signature.

Maybe I am still more dreaming than awake.

A low camera, never quite focusing on my beloved storyteller, pans the on-looking crowd dressed in scowls, judgmental half-smiles, and dark clothing. Nearing the end of the cameraman’s circle of judges is a photographer. Not looking too unlike myself before all the sun, she smiles more truthfully than the others and is the only one in the crowd who bothers to try to sing along. She manually advances her film. She appears to be shooting with what I swear is a Canon AE-1 , which just so happens to be my first and all-time favorite SLR, trumping even the modern day ultra-uber-DSLR’s.

This video is all too similar to something my brain might conjure.

It is hard for me to know where a dream ends and real life begins again, especially in the afternoons. Familiar music via Youtube usually helps bridge the gap.

 

Uh Oh…

So there I was again. At the goddamned YMCA for my daily swim.

Some Jesus freak, who first Jesus’d me back in December, stopped me in the hallway this morning (by physically blocking my path to the pool), in order to tell me how much “better” I look. And then, she proceeded to have a great idea: “You should open your own ballet studio!”

Go ahead and twist that knife the Universe shoved into my back, why doncha?

Obviously, she has never been a business owner, or worked tirelessly, trying to keep a business afloat.  Let alone tried to do it while crippled, in unyielding pain, and on drugs. “Whatever.” I grumbled at her, “You can see that my leg is shaking. I have to get in the water.”

I walked away.

I limped out to the pool deck.

Some overly cheerful aquaciser, full of saccharine and straddling a noodle, yelled out to me “I like your shirt!” 

I was wearing whatever shirt I slept in. I looked down: a wrinkled  green tee that says “ACHIEVER” on it.

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It’s a reference to The Big Lebowski. It’s a reference I knew this lady didn’t get. I scoffed. “Yeah, thanks.”

She then chimed (in a sing-song sounds-like-someone’s-got-a-case-of-the-Mondays tone of voice),”Uh oh, looks like you’re in a bad mood today.”

Oh no, she di’nt… “I’m in a bad mood every day,” I snapped back.

She then tried to argue that I am not actually in a bad mood every day because I don’t look like I’m always in a bad mood…

I kept walking, but started uncontrollably muttering a bunch of stuff under my breath walking to my deck chair. I probably bore an embarrassing resemblance to  Yosemite Sam. “As if I’m supposed to be in a good mood for you” … “Who are you to argue with me about how I feel!?”… “You think I want to come here? That this is fun for me?” … “How dare you judge me based on how you think I look!”

And punctuating the half out loud rant: a hearty “fuck you, lady.”

She may or may not have heard me.  I don’t think I care.

I’ve Got Dreams to Remember

I guess at first glance, my night’s sleep looks OK. There was a lot of deep sleep, which is supposedly a good thing.

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But, the deep sleep is disproportionate and I always have crazy dreams. Throughout my life, I’ve tended to remember my dreams, and they have intensified since I started taking all of this medication. Now I have many dreams each night, in full color, with sounds, words, and emotions. It’s exhausting.

Here is what happened during last night’s adventures.

My first dream of the night… There are lots of bizarre, obscure details, but I’m just going to describe it and hopefully you can follow along.

I was a contestant on America’s Next Top Model (yeah, I know, but just go with it…) and there was a runway challenge that would determine the next elimination. For the challenge, we (the contestants) had to create “fashion” out of the outfits we came in. I looked down. I was wearing a truly stupid get up. It was an ugly 1990’s style black dress with an empire waist and a square neckline. Over the dress, I had on a bolero jacket with four buttons down the front.

Part of the challenge assignment was to jazz up our outfits with things we had in our bags. I looked to see what I had with me. I opened a little zipper pouch and some decorative bobby pins fell out.

“Sweet,” I thought, “I can put these on my jacket buttons to really make this outfit into high-fashion.” And as I was looking more closely at my decorative bobby pins, I noticed that, instead of a pretty little bobble, some of them had photographs of Tyra Banks, “Mr.” Jay Manuel, and André Leon Talley.

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So perfect. These photo bobby pins on my buttons on my bolero jacket are really going to make the judges sit up and notice. But shit! I have four buttons and only three people… I thought that I might have another bobby pin with Tyra on it. That would be acceptable. But gah, where is it? I could only find regular bobby pins.

And then, in the midst of my bobby pin and button debacle, I got distracted by a pile of take-out food bags at my feet. I had ordered a bunch of food. Really, really messy food with lots of sauces that leaked. I suddenly had a shrimp po’ boy in my right hand and a bag with a container of salad in my left hand. My sandwich was dripping into the lap of my 90’s fabulous dress. Shit. I tried to juggle the sandwich into a different position, and by doing so, I flung my left hand with the salad. The little plastic container with the salad dressing fell out of the bag and exploded on the pant leg of the contestant sitting next to me. “Oops. Gee, I’m really sorry.”

The food disappeared and I refocused on the challenge. The final element was to choose a song to play while I did my runway walk. I chose Love Lockdown by Kanye West.

And then it was time to line up for the runway show, which seemed to be held on the same stage as the Waterville talent contest from Jim Henson’s Emmet Otter’s Jug-Band Christmas.

I woke up before I did my runway walk, so I have no idea if the judges were wowed by my bobby pin buttons…

In my next dream, it finally happened. I got the call to be a Radio City Rockette!

As you can probably imagine, I was overjoyed. I made my way to the theatre for rehearsal, so nervous. My hands were sweaty and I had trouble opening the door that led into the stairwell that would lead me to the rehearsal room. I was walking up the stairs feeling happy and nervous and I was imagining myself onstage feeling the warmth of the lights. And then all of a sudden, I stopped. I said loudly out loud, “Shit! I have CRPS!” I sat down, halfway up the stairs, and cried. I was devastated because there was zero possibility that my right foot would fit, much less be stable enough to dance, in my LaDucas.

I woke up as the sound of my sobs were echoing in the stairwell.

In my final dream of the night, I was supposedly riding a subway, but it was more like Berlin’s S-Bahn.

The train was above ground (like the S-Bahn) traveling up what I think would have been 3rd Avenue. I needed to get off at 34th St. I was, for some reason, very confused about the trip, and it was a short distance, but took a very long time. I was sitting next to a girl, maybe 25ish, who looked very sweet and friendly. I made eye contact. I said something about how slow the train was and asked her if she knew why it was taking so long. She smiled and said she didn’t know. I realized that I wasn’t wearing any shoes. I thought, “not again.” (What does this even mean? I don’t remember forgetting my shoes in previous dreams…) I was sitting by the door. I heard the door open and close. A creepy guy got on and was standing in front of the doors. I avoided eye contact with him and tried to make conversation with the girl. I didn’t stand up, but somehow my eyesight aligned with his face. “I don’t know why you are trying to get advice from a crack addict,” he said to me.

“Uhm. A crack addict???” I said.

“Yeah. Her,” He said. Pointing with his head in the direction of the girl because his hands were in the pockets of a long dark blue trench coat.

“How do you know she is a crack addict??” I asked.

The guy leaned in very close to my face. His eyes were bloodshot and he scowled at me.

“Because I just smoked crack with her!”

And then I woke up and lied in bed trying to figure out what in the world I had just dreamt. Crack?!?! I dozed off a little before I gave up on trying to sleep.

So, if you ever wonder why I say, “mornings are hard,” this is part of the reason.  My pain is worse in the mornings, my head is groggy from the medications, and in just over 5 hours, I may have been on a national reality tv show, improvising a horrendous makeshift outfit before embarrassing myself, felt the elation of one of my childhood dreams coming true, only to be completely deflated by CRPS (gah, it’s my real life, I don’t need it hijacking my imagination too…), and ridden shoeless on the S-Bahn slowly making my way up 3rd Ave with a couple of crack addicts.

Your patience with me as I reemerge into the wakeful world, is truly appreciated.

Broken

My boot is an instant conversation opener. Always. Wherever I go.

I don’t go very many places, or very often, but responding to strangers has become very, very tiresome.

To break the monotony and repetition of how a freak misstep into a hole in the ground ruined my life as I knew it, I began to make up fantastic quick explanations about “what happened.” Sky diving, Space Mountain, tree climbing in the Serengeti, etc.

Sometimes, I don’t stop to clarify. I just keep on my wobbling way, leaving my interrogators to scratch their heads, trying to make heads or tails of what I said. Four or five wobbles away, I usually hear chuckles and I smile.

My responses are helped along by the medication, which has destroyed my internal filter. I don’t always know what I am thinking until I say it.

For example, a woman recently held a door for me. “Broken?” she asked.

Without hesitation, I responded, “Leg, no. Spirit, yes.”

I wobbled on, not stopping for further conversation. I didn’t hear a chuckle. I didn’t smile.

My Brain on Drugs

Some folks like to joke about the fact that I “get to” take “drugs.”

Let’s be clear: I am forced, against my will, to take medication. I don’t like feeling cloudy. I don’t like the constant confusion. I don’t like not being able to think clearly. I don’t like feeling as if my brain was replaced by straw.

Here is an example.

(Yesterday, told in the present tense.)

I brush my teeth. I shower. I want to put on deodorant. I brush my teeth instead. I leave the bathroom and make it two steps, stop and remember. That’s right: deodorant. I go back into the bathroom and see my toothbrush. I brush my teeth. I leave the bathroom and make it two steps, stop and remember. This time, I’m not going to allow that dang toothbrush to trick me, standing tall on it’s charger, with its pretty green light. I walk back into the bathroom (determined, with as much focus as I can muster), repeating to myself “deodorant. deodorant. deodorant. deodorant…” until my hand has a firm grip on the container.

An hour later, I think to myself, “have I brushed my teeth today?”

We Became Polar Bears, Searching for Sea Ice

I wake up every morning still feeling (reeling from) my nighttime doses.

But, some days, the cloudy confusion lingers well into my swim. And some days the sun shines very brightly, making the water extra-sparkly. And some days the sound of the water seems amplified with every push and bubbly breath. And some days the pool heater was left on overnight, making for a soup-like environment.

Today, all factors combined: the hotter than usual water, the loud bubbles, the sparkles, the lingering medication.

I looked around at my pool mates underwater.

In my mild delirium, everyone was a polar bear, searching for sea ice.

Gains and Losses

Weight, that is. Let’s talk about it.

I remember when I went from a size 30 Speedo to a size 32.

It was the summer I turned 20. I was taking a break from serious ballet. I wanted to stay in shape by riding my bike and swimming. Like most ballet dancers, I had deeply rooted hang ups about my body size. I am 5’7″. At age 20, I weighed in somewhere between 112 – 115 lbs.

I was bathing suit shopping in a Sports Authority in Oceanside, CA. I tried to try on several different patterns of my trusty size 30. None of them fit. They were all the same size, why would they? I cried real tears in the Sports Authority dressing room for an embarrassing amount of time.

I pulled myself together, went back to the rack of suits and brought several size 32’s into my dressing room. They all fit. I chose a blue and green geometric pattern and went on my way. That event is etched in my memory as a key moment when I realized that I was growing up.

For almost two decades, I believed that weight is maintained by calories in = calories burned. I kept my weight fairly steady ranging between 115-120, and kept a consistent rotation of size 32 Speedo swimsuits.

And then, as we all know by now, on that fateful evening in June, 2014, I fell down.

The Gain

For the first several months of my injury, I stayed pretty fit. Being on crutches in New York City is one hell of a fitness plan. My arms never looked so good. My left leg was toned and trim.

My orthopedist uncrutched me about a month before I went to the neurologist for the first time. My right leg killed to walk on it, so I didn’t leave my apartment as often. Still, I watched what I ate and didn’t really gain weight. In perfect honesty, though, I wasn’t worried about a pouchy belly or saddle bags. I was mostly concerned about the fact that a full three months after my accident, my right ankle continued to be swollen, discolored, and horrifically painful.

The orthopedist referred me to a neurologist. The neurologist confirmed the orthopedist’s suspicions of RSD/CRPS. He prescribed meloxicam and  gabapentin. While I titrated up to the doctor’s recommended dose, I was very sick to my stomach. And then I became the zombie that you’ve come to know and love. And then, I gained weight. Fast.

Within one month, I gained five pounds. I was suddenly craving Cool Ranch Doritos and Chips Ahoy cookies. I had very little impulse control. Right. I wasn’t working out and I was eating junk. It made perfect sense. Weight gain explained. I started swimming at my gym daily. I could still fit into the size 32. Everything was under control. Or so I thought.

By the spring of 2015, it became clear that I could not handle the harsh side effects of gabapentin, so my neurologist switched my prescription to lyrica. I was careful about what I ate. I counted calories. I rode my bike on its trainer every day.

By the summer of 2015, I had gained almost twenty pounds. I weighed 138. One hundred thirty-eight. Pounds. Needless to say, I needed a differently sized bathing suit, a size 34.

I swam. I rode my bike. I ate healthfully. How could I keep gaining weight?

This was absolutely unacceptable. None of my clothes fit. I didn’t recognize myself. I had to do something. I thought about the drugs I was taking. I thought about what these medications were doing on a physiological  level. Neural inhibitors inhibit neurons. Duh.

(It really did take me almost a year to figure this out. I told you, I’m a zombie because, you know, like, neural inhibitors.)

Apparently these meds don’t discriminate. They slow down all nerves, not just the pesky CRPS misfiring nerves. They slow everything down. Way down. Including my metabolism and motivation.

All those years of disciplined athletic training apparently were preparing me to reach this point in my life. I needed to use everything I knew about speeding up a metabolism: a moderate caloric intake, aerobic activity, and increased muscle density.

Weight bearing exercise was (is) still out of the question. Impact was (is) impossible. Low aerobic activity would have to suffice. I gradually increased the amount of time that I swam (never mind- for now- those months when I gave up swimming…). I rode my bike every day until the point when my leg gave out. I worked with weights (seated) for my arms. I worked the major muscle groups in my left leg: one legged squats, leg extensions with weights. My right leg proved to be a bit of a challenge. I did slower extensions without weights and kept up my theraband exercises. I am now the queen of one-legged five minute planks.

It took almost a year, working every day (every. single. day), but my weight stabilized around 125. It was not my pre-fall weight, but my belly was no longer an awning for my pants. I was back in my trusty size 32 Speedo swimsuit. I was content with my progress.

The Loss

Last July, I visited my pain management doctor for the first time. The spasms in my leg were still out of control. She prescribed baclofen in addition to the diazapam prescribed by my neurologist.

Baclofen is a muscle relaxant meant for long term spasmodic conditions. Baclofen works. Baclofen puts me into a coma for several hours. I knew my future would include another struggle with my weight.

And it did. But not in the way I thought.

Since I anticipated gaining weight, I was very mindful about my diet and workout routine. My doctor had me titrate up to the full dose very slowly, over several weeks. By the time I was up to the full dose, I had lost four pounds. I was happy. Very happy. I thought my metabolism had somehow finally mysteriously kicked in. One hundred twenty pounds came and went. Sweet. I was at my pre-fall weight. I finally felt good about the way I looked (apart from my grossly atrophied non-functional right leg).

Last November, my old size 32 Speedo began to drag in the water. I thought it was just old and stretched out. I found a new size 32 on sale online. It arrived, I tried it on. It was too big. It was a different fabric; that had to be the reason. I returned it and ordered another in the same fabric as my old suit. I tried it on. It seemed ok. Five hundred yards into the the first swim, I took on water. The suit was dragging. How could this be?

I weighed myself when got home that day. 112.4 pounds. I knew I needed a size 30 Speedo. I found the ugliest, least expensive size 30 on all of the internet. It arrived and it fit. I cried real tears in my childhood bedroom.

When I went for my nerve block and my check up last month, I weighed in at 108.1 pounds. I stood, staring in disbelief at the scale in my neurologist’s office. I told him that I had been losing weight rapidly since the summer. He told me not to back off of baclofen. He told me not to stop swimming or riding my bike. He told me to increase my calories, to eat more dairy (yogurt, cheese, whole milk…), breads, and sugars. Pretty much, if it leads to heart disease and diabetes, it’s on my new diet. This is the stuff of some people’s dreams, but it just makes me feel like by body is completely out of my control.

I have stopped losing, but I have yet to gain any weight.

The Point

So what’s the point of all those words, telling you my real height, my real weights, my real sizes, my real medications, and the real struggles I’ve had with my weight over the past two years?

My point is that until CRPS, I was a bit of a jerk when it came to assumptions about weight gain and loss. I didn’t understand why or how some people have difficulty. I didn’t understand how truly difficult that difficulty can be.

The theories that calories in > expenditure = weight gain and calories in < expenditure = weight loss are overly simplistic. Normal functioning, balanced systems work this way. However, if the biochemistry is altered, thrown out of whack, the equation is far more complex and less predictable.

Again, the overarching lesson I’m learning through this CRPS ordeal is that the best anyone can do is try, especially when a disease steals all control. The best I can do is try to stay healthy: to eat right, exercise, and care for this body that continues to rebel against me.