I can’t really adequately express how much this pain is disrupting my life. It’s so intense. I’m quite certain nobody prepared me for this level of discomfort when I first became a full-time chair user. There should be resources dedicated to this topic but file it under “things nobody talks about” in the official disability handbook – but of course no such thing exists and I lack the energy to create it myself.
Let me try to describe it. The ache in my feet and ankles feels worse than the worst toothache you’ve ever had. Compression socks add to the joy by strangling the life from one’s lower legs. I try to tough it out. I tell myself the feet will probably go numb from this level of pain for so long. I pray that it will happen but yet it never actually happens. Another thing to file under “things nobody talks about.”
Then we move on to the pain in my ass and hips. I use Aleve topical pain relief gel to try to freeze it but there’s not enough pain reliever topical gel to roll my entire body around in it sadly. From my ass and hips the pain travels to my hands and forearms while writing. Once again it’s a situation where the thing that helps me is also the source of intense discomfort. Cognitive dissonance surrounds all aspects of this disabled life.
I often tell myself that old adage: “what doesn’t kill me makes me stronger.” You can imagine how well that works. It doesn’t.
Questionnaires from my doctors often ask me “how often does pain effect your day and your ability to enjoy life.” That’s an easy one to answer. Pain ruins all enjoyment I can possibly hope to find in a typical day in this disabled life. Add to that a lack of sleep last night and it’s the perfect recipe for a day ruining kind of day. At least it’s rainy and gray outside. A sunny day might push me right over the edge.
I had a call with a MS friend who also happens to be a writer. She confirms my suspicions. This pain comes with the territory. Once again, the only way out is through. I don’t like this reality much but it’s unavoidable. The forced decision feels like a unwelcome imposition. Choosing not to write would solve the problem. Not something I’m willing to capitulate on.
To have a life worth living requires me to bear this pain with some kind of grace but it feels as if this grace is being scraped from the bottom of an already empty barrel. I dig for it. I scrape what I can and keep it moving but it takes a strength that is quite difficult to find even on my best days. Finding it on a day like today after a night of zero sleep is all but impossible. Yet I try because that is the way through.
Source: bethybrightanddark.com