120 Little Hours: My Five Days Without Pain
Three years ago, a flare started that, in some ways, would never end.
Although the active disease was only detectable for around a year, I was left in permanent, jaw-clenching pain. Pain pathways in my brain calved out in one of the worst flares that I had experienced remained wired open - an invisible scar that continues to shock, sting, and torment every part of my day.
When Plan A fails
I have spent my life with psoriatic-associated juvenile idiopathic arthritis (labeled psoriatic arthritis if I had not been so young at the time of onset), reassured in the knowledge that I could bounce back.
Of course, flares would come, and flares would go, but thanks to the athletic form I worked hard to maintain through the remissions, I could quickly regain any lost ground within a few weeks post-flare.
So when the pain never left, it shook my world - and the coping mechanisms developed over a lifetime with this cruel disease.
Alone without the pressure of pain
So when I woke one Monday morning recently, three years after the event that changed my reality, seemingly for life, and I felt nothing, I genuinely thought I had died!
No burning joints, no stinging in my hands and feet, no throbbing of my neck and spine, no weird sensations like those experiences where it feels like I am being shocked, a limb submerged in water or a flame held to my skin—literally, nothing.
Before I could enjoy it, however, I panicked. I felt alone for the first time in years - like my dog was no longer curled up on my lap. It might sound like a weird thing to say, but I had grown so accustomed to the pain that I had learned to live with it, like an annoying brother growing up.
It was irritable as hell most days, but it was part of me. I knew where I stood with my pain; after a lot of therapy, I had accepted it. So when it vanished as quickly as it came, I remembered just how terrifying the flare/remission cycle is - not knowing of it all.
A glimpse of what could have been
As Days Two and Three came, and I stopped freaking out over the changes happening to me, I made a promise to myself that I would try and enjoy any time I got from this respite. It felt like starting to live again on a whole different level.
The amount of work and jobs around the house I could suddenly get through and the satisfaction it brought me to contribute to a level I perceived as adequate again.
Taking my son to childcare before work without the anxiety and sleepless nights about whether I was capable - was I safe to drive today? What if I can't lift him into the car? Can I do this? Can I, can I be a parent?
Then there was the sleep! My word, the sleep! I forgot just how hungover you could feel with a whole night's sleep after spending the last few years surviving on 2-4 hours a night. For a split second, I was so foggy and relaxed, I thought I might have taken the wrong pills the night before!
The anxiety seems to dissapate
By Day Four, I no longer feared the night, the morning, or anything in between - and that alone was like a shot in the arm. I didn't realize just how much energy worrying took up, worrying about being a dad, a husband, keeping my job, being able to walk the dog, dress my son, mow the lawn - the list goes on and on.
I thought it was the lack of sleep and pain-causing my fatigue. I was wrong. The most significant factor was the anxiety of my disability and the adjustment to my limitations. I was so productive now.
I was so much more relaxed. I was me again, my jaw no longer ached from tension, and there was no comfort in the shadow of pain that had hung over me for the last three years.
Hello darkness, my old friend
I'm afraid there is no happy ending to this story. Unfortunately, those are rarer than Dodo feathers in our arthritis tarnished world.
I woke on Day Six, a Saturday, refreshed, proud of my achievements for the week, and with a renewed sense of hope burning in my heart when I noticed another burning. A burning in my heels. I swung my legs out of bed to that familiar feeling of standing on broken glass as my right knee throbbed in painful harmony.
By Day Eight, all of my pain had returned. I was heartbroken. Thankfully, adjusting back to my pain was like riding a bike. A rustbucket with no brakes that will probably toss me facedown into the tarmac one day, but it's my pile of junk, and I know where I stand with it.
So yes, it's depressing, painful, and in the long run, I achieved nothing, but it wasn't for nothing. Because, for those 120 little hours, I got to take away a revived memory of how I used to be before permanent pain.
A reminder that when you scrub away the layers of hurt, grief, and frustration, there's still the old version of me kicking around, hidden beneath the shadow of my disease - and that makes those 120 hours a lifetime of hope.
Have you ever gotten a second opinion from a different doctor about your PsA?