Being chronically means I live with the knowledge that at some point, someday I will have a flare of one or more of my conditions. I could go months without one and then have several back to back, or they could be fairly regular. Flare ups are unpredictable, sometimes it’s obvious as to what caused them, and other times there seems to be no rhyme or reason to them. Managing them is a joke. Other than knocking back the muscle relaxants and painkillers the only thing to do is try and ride it out.
I’m currently in the middle of an Ehlers Danlos Syndrome Type 3 and Complex Regional Pain Syndrome flare up. Agony is not a strong enough word to describe the sheer amount of pain that I am in. I knew my EDS flare up was coming, my pain had been getting dramatically worse over 72 hours and it felt like I had battered every inch of my body. What I wasn’t prepared for however was my CRPS to act up.
It’s hard to communicate to people who don’t have CRPS exactly what type of hellish pain it is. The only way I can think to describe is this. Imagine you have several vegetable peelers the width of your leg, someone is dragging all of them down every millimetre of your leg with excruciating slowness. Digging the blade in to the point it reaches your bones. This evil being has a partner in crime, who is simultaneously pouring vinegar into your open wounds whilst dropping lit matches on to you. On top of all of this is Benedict the Dystonia Alien who is rejoicing in contorting your leg in every position imaginable heightening the pain further.
This pain is constant. Its at the point were it feels like a miracle if I manage 5 minutes without crying. My oramorph only makes a slightly dent in the pain. Sleep is a distant memory as my leg is ravaged with mind boggling pain. All I can do is hope and pray that this flare up ends soon and does not once again become a fixture in my day to day life.