This is one of those days I spend laying on the floor staring at the tv. I’m not really watching it. It’s just a distraction. A distraction that isn’t all that effective as I’m still splayed out on the floor. I’m facing an opponent that will not be second fiddle to anything. It doesn’t matter what I want to do. I’m on the floor trying to distract myself from the pain.
This is just one day in the life of a chronic pain sufferer. The label doesn’t matter. My label happens to be ankylosing spondylitis. I like to shorten the name to make it more intimate. After all, I spend more time with AS than I do with my wife.
The kids just came home from school. They haven’t even been home for two minutes before I start barking at them. Conflict and stress have a tendency to ratchet the pain from “unbearable agony” to “I want to put a gun in my mouth.” And no, I don’t own a gun. I’m sure I’ll be awarded Dad of the Year any day now.
I took my Humira shot yesterday. That is four days before my next scheduled date. I guess that’s about normal for me. I metabolize medicine quickly. If I have dental work done, I usually get a double dose of Novocain. I’ve also had shots during procedures to keep the numbness alive. 30 minutes after I leave, the numbness is just a memory.
My last shot was last week. I had the shot Monday night, and the next day I was on a whirlwind road trip from Louisiana to Alabama. Strike one. I was back in town Wednesday evening. Long periods of immobility are bad for my joints. They stiffen up, but this time, before I had time to recover, I spent Thursday in the kitchen to bake up 60 dozen cookies. I was in a commercial kitchen so it only took about six hours. I was on my feet and constantly moving. Strike two. The pain has been escalating daily to a full on fury. I could tell my last shot that should have been helpful for two weeks had lost all benefit nine days later. That’s strike three. I hope to start feeling some relief by Sunday or Monday.
I have about 6 days a month where I feel really good. Then there are the days before and after the shot that either ramp up or taper off from the good days. I could have anywhere from 12-16 days a month like this. These are precarious times where I am pretty mobile, but may enjoy the presence of low grade fevers or I may have some angry joints where the others are still drowsy. The remaining 8-10 days a month are nothing but horror.
My feet and ankles are cool to the touch but they burn as if I’m wearing menthol socks. If it’s not a cool burn, my lower extremities are hot with a more pronounced pain and redness. The knees only vary in intensity from a mild ache to a sharp pain that may be compared to burning your leg to a stump with acid. Then we have the hips, shoulders, and neck that like to garner attention, but my lower back usually squeals loudest. It reminds me of my five year old’s hissy fits that I just let her have whatever she wants as I am assaulted with the feeling of some cosmic finger nails scraping against my chalkboard soul.
My family has it worse. My wife has a cripple for a husband. I look normal, so I’m sure she fields comments that she is supporting a lazy deadbeat. My kids have an irritable parent who isn’t driven by love or compassion. The goal is pain-avoidance. Drama increases the pain. Even my dog has been getting yelled at lately. What’s the deal with the barking and snarling because she heard the UPS man?
It’s great when I’m feeling well because I forget how bad the pain has been the past days and weeks, but when I’m hurting, I can’t remember those fleeting moments of bliss. I cannot visualize either if I’m not experiencing it. Either I’m drowning in the sewer or I’m laying under a shade tree on a nice sunny day with the smell of BBQ wafting in the air and the sound of kids frolicking in the distance.
Maybe tomorrow will be better. Maybe I’ll spend my day on the couch. I better not get carried away and start making big plans. This floor isn’t too bad.