Aftermath

I came home from my 36 mile charity ride, feeling proud, triumphant, and almost jubilant.

But, I know my body, and I’m learning how CRPS works within it. I knew it was coming:

*THE AFTERMATH*

As soon as I got back to my parents’ house, I ate. And then I took medication and vitamins. And then I showered the ride away. Then I went to sleep. I woke up. Ate dinner. Took more medication. Went back to bed. My leg felt shaky. It hurt.

I knew a flare was bubbling.

I am trying to do everything within my power to keep that flare at bay.

My next sympathetic block isn’t until December 1st. I can’t have a flare-up set-back before then. I have to figure out how to incorporate activities and an active lifestyle into my life with CRPS. The ride I did yesterday is the next phase in this learning process. Especially since my ultimate goal is to get back to century rides.

Organized rides take a lot more stamina and energy than simply the amount of mileage they cover. I had forgotten this. Or, maybe I simply never realized it before because I was never physically or energetically limited in my previous events. I never had to measure anticipation, nervousness, joy, relief, or pride in terms of energy depletion. They were simply emotions that existed and and passed. I only ever felt the physical toll of doing an endurance event.

Before CRPS, that is. 

I woke up this morning expecting my quadriceps and calves to be sore. I expected my glutes to be sore. I expected my back and arms to be sore. But, my muscles aren’t sore. At all. (I told you I was prepared!)

Instead, I woke up with my brain cloudy. It’s hard to remember my thoughts. My right leg is feeling very CRPS-y. Deep, bone crushing pain. Superficial burning, crackling, shiny skin. Daggers driving into the joints when I move it. It is turning colors and going cold. Fuck. Still, I’m not going to officially call it a flare.

I tried to go back to my “normal” daily schedule. I ate breakfast, drank some coffee, drank twice as much water as coffee. I went to the pool.

The weather today is crappy. Cloudy, humid, not hot enough to be hot, not cold enough to be cold. It’s the kind of day that would affect my leg anyway. My limp, worse than usual.

I hobbled over to an empty lane.

I put my left foot in. COLD. Shit. Ok. I’ll just sit here with only my left leg in the water for a while. I moved my left leg around. It was cold, but ok. Maybe just a short, easy swim.

I put my right foot in. Slowly. Very Slowly. It felt as if I was easing my leg into molten lava. I kid you not. It’s a weird and incredibly painful feeling. The water was cold, and like, the density of… you know… *water*.  My left leg and my brain were on the same page about these things. But my right leg, burning, being crushed by the pressure, was convinced I was immersing it into lava.

A year ago, I would have forced my right leg to get on the same page as my left leg and my brain. The same page as reality. But a year ago, I’d had about 13 fewer flares under my belt. And now, my goal is to try to figure out how to push myself physically and recover before I go full-flare.

I pulled my legs out of the water. A swim wasn’t going to happen today. And I have to be ok with that. I can’t call myself names (lazy, unmotivated). I can’t tell myself that I’m just making an excuse for not wanting to swim.

It’s true that I didn’t want to swim. I rarely want to swim. I do it because it is good for me. The reason why I didn’t swim was because my right leg was being crushed and incinerated by molten lava (aka 77 degree chlorinated pool water). In order to continue trying to intercept the flare, I had to listen to my leg this morning. I left the YMCA. I went home, ate, took my medicine, and went back to bed.

I’ll try to swim again tomorrow.

It is frustrating, beyond frustrating, to have my life’s activities dictated by the lower half of my right leg. But, if I want to continue to slowly chisel my way out of this CRPS prison to engage in activities that temporarily allow me to feel a little bit like my pre-CRPS self, I have to be willing to crawl back into my cage. I have to deal with the aftermath.

 

 

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Cycling Series: When Rehab Becomes Training

About a month ago, I was lamenting to a fellow swimmer at the YMCA about how much I missed doing long bike rides.

She said to me, “There was a ride that was rescheduled because of Hurricane Irma. Champions Ride for Charity. It got postponed until October 22nd. There is a century ride, a metric century ride, a half-metric…”

I started to think… Not the century. One hundred miles is out of the question. Metric century? In the olden days, this wouldn’t have even been a question… Maybe the half-metric… It is thirty something miles. That is still a lot. But doable. Maybe…

Three weeks ago, when I couldn’t sleep, in a state of minimal consciousness, I registered for the metric century, a 36 mile ride.

So I started to ride my bike around the neighborhood a little more. I increased my weekly mileage, and included one longer ride per week. The most I did in one ride was just under 30 miles. I was eating well, swimming, and taking care not to push too hard before the day of the big ride.

At some point, it occurred to me: Holy shit. I’m training.

On Friday, half in a daze, half on autopilot, I picked up my packet from the local bike shop. The number 384 was assigned to me. I was told I’d be riding in honor of Thomas J. Kelly, New York City firefighter, a 9/11 first responder who passed away last year.

The day before the ride, my swim friend, the one who told me about the ride, texted me. She wanted to ride too. She invited me to meet at her home because she lives very close to the starting point.

Suddenly, I realized: Holy shit. I was really going to do this.

I’d been hydrating all day. I’d eaten well. I’d trained for several weeks. I was ready.

On Saturday night, I laid out my kit and my mismatched shoes, packed my sunglasses, gloves, helmet, number, safety pins. Yesterday morning, I woke up early, dressed, braided my hair, ate, filled my water bottles, put my bike in my car.

It was very methodical, as if I had done it all before in a past life…

I arrived at my friend’s house, we pinned each other’s numbers, and were off to the venue. She knew several people there and introduced me. Nobody seemed to notice my shoes (or the fact that I was wearing one leg warmer and a lidocaine patch). I felt almost normal. I felt like I belonged.

We lined up and just like that, we were on our way. My friend was nursing hamstring and calf injuries so we committed to each other that we’d take an easy pace. We talked most of the time, laughed about the weird things (like dinosaurs…) along the road, we remarked on the beauty of the scenery (“natural” Florida is actually quite beautiful), we took our time at the SAG stops. The weather was lovely.

My right leg hurt. My right leg always hurts. My left leg did most of the work. My left leg always does most of the work.

After the second SAG stop, I got a little nervous. We were just over 24 miles in. Twelve more miles to go. “I can do this,” I told myself. We set out again, following the markers,  still talking and laughing. And then: roads I recognized.

“We’re almost there!” I actually yelled this out loud. “We’re doing it! We did it!” I was so happy. I looked over to my friend. She was happy too. And we were cheering for one another and for ourselves for the last mile and to the finish. High fives and smiles from strangers and people we’d seen along the way.

We grabbed snacks and some water. We found photos of the fallen officers we were riding for. We were taking pictures and laughing and continued to congratulate one another all the way back to my friend’s house.

Holy shit. It occurred to me: I had fun. This was the most fun I’ve had in over three years because this is the closest I have felt to who I used to be since my accident. I

am still adjusting to the changes CRPS has made to my life, but I am adjusting. I continue to hope for the future, and the possibility of having a happy life again. Despite the misery of having CRPS.

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On Giving Up: Upon Further Consideration

You know what? No. I take it back. I have given up.

I’ve given up on trying to have any kind of “normal” social life. I’ve given up on the frivolity of dating. I’ve given up on the idea that I can be a worthwhile or important, much less a primary, part of someone else’s life. I have forgone the notion of finding a “life partner,” much less an actual husband. I’ve given up hope of having regular physical interactions with other human beings (it isn’t uncommon for me to go months without so much as a friendly hug). I have given up on thinking, “maybe someday I will be a mom.” I am far too old for that now, and who knows the havoc it would wreak on my poor dysfunctional body.

No. I must give up on all of that. CRPS has made me perpetually peripheral to my relationships and my relationship with the real world. I am now only important to me and that has to be enough.

Most important though, I’ve given up on trying to be out of pain.

I have CRPS. It hurts. It will  hurt in varying degrees for the rest of my life. Nowadays, a “good” day is about a 7/10, which I would have described as a full 10/10 prior to my accident. Every step: hurts. Every kick in the pool: hurts. Every pretend pedal on my bike: hurts. Sitting: hurts. Standing: hurts. Attempting to dance: hurts. Opening the refrigerator door: hurts. But laying around doing nothing hurts too.

And it all hurts my psyche more than I could ever have imagined.

But what’s the answer to this ever-compounding pain? More medication that will further inhibit and isolate me? No. I have to give up on the idea that this pain will ever go away. I have to find a way to endure: if my leg isn’t in one of its famous crippling uncontrollable dystonic spasms, if I am not about to vomit from the pain (which happens more often than I’ll admit), and if I am not going to pass out, I will will myself to carry on.

Alone, lonely, and in pain, I force myself to carry on.

Because, upon further consideration, I have given up on everything except myself.

 

 

WANTED: A Friend

WANTED: A friend. Male or Female.

Main objective: companionship of like-minded individual(s) for a lonely, disciplined, middle-aged, single female with a chronic nerve condition affecting lower right leg.

Must be live no farther than 10 miles from my parents’ house. Must be athletic. Must be into music (all kinds- country notsomuch- and must have the ability to discuss music theory and history). Must read books. Must appreciate art and the arts. Must appreciate the value of science. Must have a somewhat healthful lifestyle. Must enjoy an abundance of laughter. Well-traveled a plus. Intimate knowledge of DPRK a plus.

Must be reliable, dependable, and not embarrassed to walk slowly with a girl with a limp. Must have time and emotional energy to invest in a friendship.

Our activities together will include (and may be limited to): cycling (15-30 miles in one stretch, 16mph avg), swimming (actual strokes, 2000+ yds in a practice), coffee, casual meals together (I can’t sit for much longer than 30 min, so restaurants are generally out of the question), conversations (in person and on the phone). Hopefully my condition will improve and allow me to expand my activities list, but I can’t promise. (Eventually, I’d like to return to a life that included international travel, trapeze lessons, running, long walks, trips to the beach… but no promises…)

Democrats and NPAs preferred. Republicans, Libertarians OK, but I don’t want to discuss “politics,” your second amendment “right,” and/or (especially) “Jesus.” Those wondering about my use of quotations marks need not apply.

No fixers, no flakes, no astrology, and no booty calls, please.

Unrecognizable

At the beginning of the week, I spent time with my best friend of over 20 years, her husband of over 10 years, and their 6 month old baby.

These are my people.

I don’t live close to them (I don’t live close to any of my close friends). But, my friend and I traveled extensively together in our 20s and at various points in our lives we lived together. Her husband is exactly what the husband of your best friend should be: a completely separate person, but an extension of the love of a friendship.

I am truly happy when I am with them. I am not guarded. I am able to truly relax and admit who I am. And they accept me.

We talked about books we’ve read, scientific research that interested us, talked about North Korea (I don’t know why, but all of my close friends and I have always been fascinated by North Korea. It’s a thing. A tie that bonds, I suppose.), we ate Mexican food, we made Alexa turn the lights chartreuse and say ridiculous things, we watched episodes of The Dead Files on Netflix. We didn’t do anything “exciting,” just the regular stuff that decades long best friends do.

And the baby. So full of joy despite an impending tooth or 26. He is learning to sit up on his own from laying down. Sometimes gravity gets the better of him. He thinks my nickname (“JayPea”) is hilarious. He liked when I explained sciency stuff to him. He loves Harry Belafonte, but his absolute favorite song is Hey Ya by Outkast.

I temporarily felt like my old self again, even though my CRPS didn’t stop for a second. The visit renewed my hope that I could feel at ease, almost normal, concurrently to feeling everything that comes along with CRPS. If I have the right people in my life…

Before I left, my friend took a few photos of me with the baby.

Today, I went back to my regular swim schedule at the YMCA. Feeling renewed, hopeful, and happy. I talked to one of the regular swimmers, who possibly the closest thing to a friend I have at the Y. I told her about my visit and I showed her the photos of the baby, including one of me holding him.

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I didn’t tell her that *I* was holding the baby; I assumed that would be obvious.

“Wow!” She said, “your friend is really pretty!”

“Uhm… That’s me…” I said.

“Oh, huh. I didn’t even recognize you.”

I mean… I wasn’t wearing a swimsuit, and I was wearing a little bit of make up… But really? She didn’t recognize me?

She has seen me roughly three times per week for over a year. In all that time, I guess she has ever seen me truly smile.

Am I really so miserable now, in my daily life, that I am unrecognizable if I am happy?

 

On Giving Up: Human Nature

I am astonished when people say to me, “I don’t know how you keep going. I probably would have given up by now.” But, I think I am actually pretty normal in my reaction to my accident and determination in recovery.

You see, as the result of one accident, most people won’t lose their home, their (supposed) life partner, their ability to work, their financial security, their independence, their ability to lead an active lifestyle, their ability to enjoy simple pleasures like a walk on a beach or a movie in a theater, their ability to do simple tasks easily (like grocery shopping or open a refrigerator door), much less every aspect that once defined who they were.

I used to say that I have lost everything because of this accident. I have come to realize that this is untrue. I still have the love and support of my parents. I still have a handful of wonderful friends who are gentle and help motivate me. And I still have my bike. 

So, since most people won’t experience this degree of loss, they can’t imagine what they would do if they were in my “situation.”

It is overwhelming, for certain. It is a scary, for certain. I have very dark days, for certain. I have trouble imagining a life for myself in the future. I don’t have any of this figured out yet. 

What does it mean to “give up” anyway? I know people use it in phrases that are meant as flippant hyperbole reiterating a platitudinous construct meaning “You’re in a tough spot in life. You’re working incredibly hard. Keep it up.” But, let’s think about giving up in terms of the actual words.

Typically when we give up on or quit something, we move on to some other option. But, what happens when you have no other option? When there is no other place to go for safety? When there is literally nothing else you can do? Giving up is a luxury. Giving up is lot more difficult than just an abstract notion of moving on.

Even in my darkest days, I can’t conceive of the only way to truly give up…

As long as I am alive, giving up is simply not possible. I’m not saying that because I think I am some super-human, super-motivated, super-driven CRPS “warrior” martyr. No. I’m not. I, just like everyone else, am simply governed by regular old human nature.

I tried for the first months, out of denial and sheer desperation, to cling to my life as I knew it. Everything (apart from the love of my family and some very dear friends) gradually fell away. It is the loneliest place to be.

I was lost. I still am.

Here’s the catch though: CRPS isn’t life-threatening, and yet I will have it for the rest of my life. That means I have (presumably) over forty more years of this. I don’t have over forty years’ worth of tears. I can’t stay in bed in pain with a laptop on my lap for over forty years. I can’t have almost no social interaction for over forty years.

The permanence is unbearably daunting. I don’t have a choice; I am forced to face it, confront it, and deal with it. Knowing that this isn’t going to go away (on its own or possibly at all), I said what any normal human would say in my situation.

Fuck it. I’m far too young for this shit. I gotta try to figure it out. 

And so, I am doing what any normal human would do in my situation. Day by day, I keep trying to salvage scraps of my life. Because I have no other option, including giving up.

Giving up isn’t human nature.

Cycling Series: Dog Attack

I was almost killed today by a Welsh corgi.

corgi

I was riding my bike around my parents’ neighborhood. Some jerk had three (3!) smallish dogs without leashes, one being the aforementioned welsh corgi.

I was really cruising because I’m trying to beat my time on that particular segment.

I saw the situation ahead and knew it was dubious. I slowed down, looked at the corgi and accidentally made eye contact.

I was wearing sunglasses so I don’t know how the dog knew we locked eyes.

The corgi attacked, lunging at my CRPS foot.

My main concern was not crashing as I barked a loud “NO!” at the dog. It stopped the attack as I stopped my bike, and my foot may or may not have made the tiniest bit of contact with some part of the beast.

I yelled at the guy that he needed to have his dogs on leashes, that his dumb dog and I could have been seriously injured because of his laziness and stupidity. [Please insert as many F-bombs into the story as you feel I would have deemed necessary…]

Then he yelled at the dog, “Bosco! What the hell were you thinking?”

I said, “He was thinking he didn’t have a leash and it would be fun to attack a cyclist.” [insert more profanities- Yosemite Sam style- here…]

I started to roll away and another one of the dogs started coming toward me, more slowly than Bosco.

I said to the guy, “You got another one over here. You might want to get control over all of this.”

As if making an excuse for the dog he said, “He is blind.”

I said, “Well, there’s a *brilliant* idea. A blind dog wandering around outside without a leash.”

He said, “You have a valid point.”

I didn’t stick around to find out if he was being sarcastic.