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.
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.