It is like this roller coaster ride that never ends. You are climbing uphills, coasting back down, being whipped around corners and flipped upside down. You want to jump off before the ride becomes more intense but that is not how it works; you have to ride it out.
Here I am again now, transcribing the millions of thoughts from my mind onto my phone in the middle of the night where I am once again sleepless. Sleep is such a gift these days I feel, those nights where I actually log some hours.
I will admit that it is one thing to go to bed at night with pain. But when you wake in the morning with it there again, you realize you have to live the same day all over again and that job of just pulling yourself out of bed to begin the day takes more strength than one can imagine.
This week had uphills and downhills. I spent the week with a major flare up of my CRPS. Horribly increased pain, swelling that never subsided, a purple foot most of the time, and zero sleep.
My nerves were so flared up that I could not even have my foot touching the bed…or anything else. I found myself scooting way down to hang my feet off the end or throwing my left foot off the side of the bed. Clearly ever finding a comfortable spot was basically impossible.
The flare up really caused my mood to shift downward too. Fighting through that much pain takes everything out of you. You wake up with it, you eat breakfast with it, you go to work with it, you eat lunch with it, you eat snacks with it, you eat dinner with it, you go to bed with it. It’s like a little devil that lives inside of you that never leaves you.
Despite the increased pain, I continued walking with just the one crutch through most of my days. Typically by the time I got home I would turn to my knee walker instead.
On Monday when I had gone to physical therapy my nerves were so flared up we did not get to accomplish much. Just the smallest, lightest touch had me screaming in tears. But, throughout the week I continued putting in the work despite how defeated I was feeling.
On Friday when I returned to PT, my therapist told me that despite having the week I did, my range of motion had improved. Not by a ton, but there was a smidge of progress which is exactly what I needed.
I was also able to take a few steps on Friday….with no crutch!
Yes, I actually kinda walked. Each step was incredibly painful but they tell me it has to get worse before it can get better. They tell me I have to fight this disease and do this if I want my mobility back. So, like a warrior I will fight as I will walk, I will have my range of motion. Perhaps there are things this disease might take from my life, there might be things I can no longer take on but walking is not one I’m willing to let it take.
So despite having a week I did not know if I could make it through at times, a week where I cried so much, a week I screamed through pain, a week where I felt I was caught stuck upside down on the roller coaster ride, I made progress.
I will continue to fight like hell through every painful stride and hold on to hope that someday even a little bit of relief will come my way.
Until Next Time~
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