Peaks and Valleys

I spent the weekend binge watching Australia’s version of The Biggest Loser (tangentially, Australia has a number of reality shows that are just as good as, if not better than, their American counterparts. My Australian favorites are: The Biggest Loser, Australia’s Next Top Model, MasterChef… Anyway…).

For years, The Biggest Loser has been one of my guilty pleasures. But more than a guilty pleasure, the show is very inspirational for me. It used to help reinforce the mindset to keep pushing harder, keep working through the pain, keep going until the point of ultimate physical exhaustion. I spent decades pushing harder, working through pain, and going until the point of ultimate physical exhaustion. The reward was always worth the extra effort. I always became stronger and more focused.

My binge-watching weekend made me think: everything in my life must now be put into context of CRPS, even my beloved Biggest Losers.

Now that I have CRPS, there is no such thing as pushing past the pain. As the pain becomes exponentially worse, my leg fails and does not respond. Pushing harder becomes an impossibility, and ultimate physical exhaustion never comes. Very carefully, I must monitor and cater to every sensation in my dumb CRPS leg. Otherwise, I will be in bed for a week or two, fighting a flare.

Moreover, it has taken me almost three years to realize: the good days are tricks. Good days do not mean that I am more physically capable. A good day is not a CRPS-free day. On a good day, the nostrils and eyes of the alligator are peaking just above the water. The alligator is still there, lurking, and if provoked, it will attack.

Of course, this is a lesson I’ve been learning the hard way.

I had a good day two weeks ago. I woke up and my foot moved with more ease, the constant buzzing was quieter, my leg wasn’t as cold, the skin fire was smoldering, the gunshot wound felt like it was healing. I walked a little less like Charlie Chaplin. It was wonderful. I swam longer than usual. I did my full set of PT exercises. I tried some basic ballet barre exercises with my right foot. It was glorious. I wanted to push harder, but the pain and all of the accompanying CRPS symptoms crept back. Before the end of the day, I could feel the flare coming.

I am still not back to where I was the day before my good day. A good day is a mind fuck; in some way, good days are the worst part of having CRPS. There is no logical explanation for the extent of this recent flare. I didn’t put forth any kind of effort that should have pushed my leg into this level of rebellion. I didn’t run a marathon, I didn’t ride 100 miles on my bike, I didn’t perform (or rehearse) swan lake, I didn’t do 32 fouettes en pointe.

For half of a day, I lost my troll-like gait, I swam 15 minutes longer, I did 20 reps of 5 exercises with a red theraband, and I did about 16 tendus with my right leg. There was no reward for my (minimal) extra effort. I am weaker and more aimless.

I guess I’m starting to get it. I need to actively seek some kind of CRPS homeostasis, where I don’t try to push myself to achieve any kind of tangible physical milestone.

My perception of success must shift.

Maybe success is to be measured in flare-free days instead of HIIT workouts, muscle density, or hours spent on the bike or in the pool. I must give up the exquisite endorphin rush that follows a near-vomit workout. I must not try to take advantage of a good day to try to be more productive. I just need to keep to my routine and enjoy the diminished symptoms for a day.

Ugh.

This mentality is boring. Very boring. Borderline lazy. It is counter to every ounce of an indefatigable work ethic that has been a fundamental part of my psyche since I was four years old. But these flares are all consuming and they are stronger than my self-judgment.

So now, I must chop off all of the peaks in order to fill in the valleys.

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Merry Christmas, Here’s a Flare

It’s been almost two and a half years since my accident and well over two years since I first heard the letters that have since hijacked my life: CRPS/RSD.

In that time, I read what the internet had to say. I heard horror stories. And still, I preferred to live in my RSDenial.

Until now, I considered myself different, lucky, an exception. Where there is a will there is a way. I will overcome this. I will push this into remission. I will stay the course. I will get better… or at least less bad…

Although my daily pain range is between an 8 and a 9, with what I call “surges” of 10, it has been a relatively constant state of debilitation. The increases in pain and symptoms have generally been very gradual with specific triggers (i.e. traveling for doctor appointments) and they taper with a begrudged amount of rest.

Since starting and building the mind numbing cocktail of medication over the years, many of the symptoms have been brought into a manageable range: the color changes, the swelling, the icy cold foot, the shiny skin, the skin on fire, the feeling that my fibula had shattered and punctured my skin. I guess you could say I had gotten used to the disease simply involving horrible crushing pain, stabbing pain, aching pain, and constant spasms and cramps in my leg, foot, and ankle. I guess you could say I had forgotten how bad all the other symptoms could be when combined and at their worst.

No matter how many times my neurologist looks me in the eyes and says definitively, “you have CRPS,” there is a part of me that doesn’t allow myself truly to believe. The permanence, the severity, the horribleness, they simply can’t be part of my life for the rest of my life. Still, after more than two years, I don’t truly believe. Or, I didn’t until Christmas Eve. (So, thank you very much, Santa, I guess I believe now…)

It had been a rough week. I had to go to court, I was trying to prepare for Christmas, I had no money to buy presents, I ate more cookies than vegetables, I felt “off.”

Yet, I, being me, kept up with my rehab routine. I pushed myself in the pool. I pushed my physical therapy. I didn’t do any more than usual. I stuck to my normal (doctor prescribed) routine, but my normal routine seemed impossible.

I thought I was just tired and stressed.

And I was just tired and stressed. However, the lesson I learned was that there is no longer any “just” to being tired and stressed with CRPS/RSD. Being tired and stressed are enough to tip the precariously and delicately balanced scales from the conqueror to the conquered.

I took this photo on Christmas Eve, when my leg was just beginning to flare. I did not have the wherewithal to take a photo when it was in full bloom.

merryflaremas.jpg

It has been three days, I haven’t left the house. I’ve barely left my bedroom. I have done my ankle exercises without resistance because they say movement helps (and I am still determined to fix that dang lateral rotation). I have eaten more vegetables than cookies.

The swelling has diminished a little, the coloring isn’t as extreme, and I’m capable again of coherent thought. My skin is continues to be on fire. My foot continues to be icy. My fibula continues to feel shattered. The crushing pain is more severe than it has been in years. The spasms are uncontrollable and violent despite 10mg of baclofen and 2mg of diazapam three times (each) per day.

And now I’m scared. Now my will feels weak. Now I feel deflated.

Am I back at the bottom of the mountain I was just starting to climb? Is two years’ worth of progress undone? If I am feeling the way I felt prior to my meds while taking my meds, does this mean more meds? Will I ever be normal again? I just want to be normal again.