If only people could see what it's like and sample the pain, maybe they'd understand.
I wake up every twenty minutes or so throughout the night, pain shooting through my hip, daggers of pain between my shoulder blades, hands turning into claws. Painfully adjusting my position, I try not to cry out, as the rest of the household sleeps peacefully. I pry my hands open and lay them flat, in hopes that in the morning they won't be useless fists.
Morning mercifully arrives, the night's torture over, a new day dawning. Hot pads applied to various parts of my body, I start working on stretching my legs, my arms, my frozen hands. It's all I can do not to scream some mornings. My body resists, trying to curl in on itself and seeking the sleep that didn't come the night before. I dare not take pain medicine if my husband is going to work because once the pain is dulled, my body will seek sleep whether I can afford a nap or not.
It's a struggle to get out of bed. Oh,so painful. But I need to get moving to feel better. If I don't stretch, move, my body will freeze, the pain will increase, and I'll be useless. If not vastly improved after an hour or so, it's sure to be a rough day.
If only people could feel what it's like to be suddenly free from a disabled body, maybe they'd understand.
That I can one day barely be able to function and the next hike up a New Hampshire mountain is unfathomable to most. But it's my reality. It's the difference between just-after-Remicade-infusion and week-before-Remicade. I could have a good week or three, or flare again just days after infusion. Thankfully it's usually the former.
Even on my good days there's plenty of pain from damage already done, but it pales in comparison to full-blown PsA pain. Even on my good days, the exhaustion is there, as I'm now trying to figure out what treatment is going to work for autoimmune hepatitis, which saps what little energy I regain with each infusion.
It's a balancing act, my life. A balance of doing and being; of movement and rest; of treatments for multiple autoimmune conditions; of pain meds and anti-inflammatories. It's not knowing from one hour to the next how I'm going to feel. It's knowing I'll be in pain, but not being sure if it will be manageable pain or that of the excruciating variety. It's difficult and depressing and frustrating. It's my life.
But it's also a blessing. I have learned Slowing Down. I've learned Patience (well, kinda). I've learned Perspective and Being Gentle With Myself and How to Spend the Day in Bed and Still Accomplish Great Things (hey, that sounds like a blog post...hmmm....). I've learned the preciousness of every step, every movement, every breath of fresh air I get to take a mile or more from civilization. I've learned to get along with Uncertainty, to live with Pain, and to find Good Things on Bad Days. I've learned that Blessings are everywhere and everyone - you just have to reach out in gratitude and embrace them.
If only others could know those things, too. But without the pain.