Two of my least favorite things to hear from doctors and non-sufferers is, “Pain is all in the head” and “Mind over matter”. There are strong truths in both statements. Modern science has proven that pain is an interpretation by the brain. It does not originate where we feel it. Science has also shown that thoughts, meditation, and prayer can alter and even negate physiological maladies. But here’s the catch, those truths do not make current pain and symptom sufferers feel better.
Friday was my day after. I consider the day after a massive recovery day. It’s a day that I know will follow after activities. Sometimes that day turns into two or three days. On recovery days, everything is ratcheted up to a ten. Pain, frustration, flares, fatigue, and brain fog are all at their highest level of intensity at the same time. Being aware of the day after isn’t the same as expecting a painful result from an action. Instead, it lives in the simple knowledge of reality.
I had spent the day before doing a few major activities outside of my normal routine. Meal prepping a number of items, spending time with rambunctious children, and hanging out with a physically active friend all on the same day. It sounds like an average to boring day for most, but for the busted body it was a lot. As I walked on the beach with my friend and then sat down to listen to music, I could feel tomorrow start.
Even with medications and preventative measures taken, I felt the pain meter creeping up. Using my usual method of ignore and push through, I was able to make it through the full day and evening without being punched to the ground by my symptoms. We all know the move, just keep going because once you stop moving/thinking/socializing… the truck runs you over. I got home and took a shower before crawling into bed around 2am. Taking a shower before you stop. That’s another one of those tricks you learn while navigating a life of symptom management.
The day after started around 3am. You are so completely exhausted, yet sleep is elusive. Pain is always the king of a broken body. It reigns supreme over all needs and other symptoms. Fatigue and pain love each other. They move hand in hand to pull new symptoms to the surface and stuff “normal” physiology down far beyond where it could overpower flares.
Lying in bed, every breath was labored and every toss and turn felt like swimming through burning mud. Four hours later, I was done negotiating with myself to start my day. Getting up to use the bathroom, I had to choose between crawling on the floor or stepping on the clamp full of nails that had taken over my legs and feet. I picked walking. Crawling put pressure on more joints and too many extra moves were required. I brushed my teeth while sitting on the toilet. It was the only way to manage that task without collapsing.
After a huge sigh and motivational conversation in the mirror, I made it over to the couch. No phone. No computer. No television. No music. Just a different place to lay my body down. I took a short nap, waking every few moments to the sharp and incessant knives working their way across each nerve and muscle fiber. Then came the big question, if I don’t move will I be stuck here for the rest of the day? The answer is almost always, yes. Moving now will put you on the path to easier movement later. So that is what I did.
I spent the entire day in my pain. Watching my symptoms as they flared and threw tantrums was enlightening. Was I disassociating? Probably, it is a coping mechanism. I am so very tired of being frustrated and angered by my own body. I would switch between thinking: I can be one of those mind-over-matter people! I’m not trying hard enough to push through! Then: Your pain is real! Your symptoms are true manifestations of your body’s condition and you are doing the best that you can!
It took three days to get back to my normal. Each day wasn’t easier. They were just different. We need to remember that chronic pain and illnesses are dynamic. They are often the most mysterious and understudied because of their variability. As our daily symptoms shift, so to do our responses to formerly difficult or easy events. Add to that, a person’s constantly changing mental health and the appearance of a life in chaos is revealed. But, for the millionth time, chaos is our sweet spot. We are the ones who can create order and comfort in whirlwind conditions. The day after is one moment. Sometimes it’s a long moment. But, today I recognize that I am not in my pain. It is my ever-challenging companion, not my entire existence.