About a year ago I read an online article about a study done in Sweden, or maybe it was Switzerland (one of the S countries for sure), about a machine developed to help men go through the simulation of giving birth. The point of such a device I’m sure was to help men understand the pain women go through when delivering children. While the video accompanying the article was in a different language, the intent clear. The men, laying on beds with wires attached to their bellies, were writhing in pain, crying, and swearing.
I couldn’t help thinking what a genius idea that was. Giving someone who’d never have the chance otherwise to experience such a thing, the chance to share the experience, to truly understand the pain and stress the body goes through during something so difficult. I just wish they’d modify this device to help all sorts of experiences, to give others a glimpse into what pain can feel like for a specific situation.
I often wish there was a way for people to just briefly understand what my body goes through. If there was a magic pill, or a device that simulated just one hour of a bad pain flare. Then maybe when I heard the common “Maybe the pain is in your head?” or “No pain, no gain” bullshit that people like to blab on about I could flip a switch and they could finally get it.
Last night I went to bed at a fairly reasonable hour. I got 8 1/2 hours of uninterrupted sleep, not even having to get up to go to the bathroom which can sometimes be 3-4 times a night. Yesterday I had a fairly relaxing day, filling most of the hours with writing, though I did get a few loads of laundry in, and a good tidy up of my bedroom. Usually that means that my next day should be fine, in fact the week should be looking good, feeling good.
But that’s the thing with Rheumatoid Disease. Inflammation can spring up out of nowhere and obliterate your plans for a peaceful day. As soon as I opened my eyes at 5 o’clock this morning I knew. Opening and closing my fists was agony. I slowly pulled myself to a sitting position and took a deep breath in only to gasp and choke on the pain. My chest ached from front to back, feeling like I had pulled every upper body muscle in my sleep, maybe I had. I stood up on unsteady feet and cringed when I saw how swollen they were. The trip to the bathroom was brutal. Painful to lower myself on to the toilet, and even more to get back up. Once back in my room I hobbled back to my bedside table and took my morning handful of medicine. White pills, yellow pills, round pills, small pills. Please please please, kick in soon.
As I carefully laid back down in bed, gasping as I took note of which side I couldn’t put pressure on, I pleaded with my body to let me sleep through it.
Please let me fall back asleep. Please let this nightmare be over.
So when people tell me to “push through the pain” or “get more exercise” or “buck up” I wish for just an hour they could understand what they are asking me to do. I wish people could experience my pain. Not because I’m a sadist and I want them to be in harm or pain, but just so they could understand. It hurts to be alive.
We patients, we don’t want this. I’d love to wake up one morning and not feel any pain at all. It’s been two and a half years since I’ve experienced that. I’m starting to wonder if I ever really did. It seems like a dream. All I have now is this nightmare.
“No pain, no gain” huh? Well that phrase can basically go f*ck itself. Because if the gain is the debilitating disease I have that has no cure, or the two types of cancer trying to decide who gets a go at me, or the non-stop pain that I feel all day every day….
I’d much rather a chocolate sundae with sprinkles.
I appreciate all love and support!