My Tug of Spondyloarthritis War
Last updated: October 2022
Do you ever get the idea that your joints and you have a distinct difference of opinion about which way to go? This morning when I woke up and was getting ready for church, ankylosing spondylitis was prepared for more sleep. But church was going to start, and thus the war began. We could call it the war of the day, or we might term it the ongoing tug of war, but whatever it was, I knew my back, arms, feet, and hands were all about staying home.
The tug of war
This war happens a lot, and I have gotten used to it. I do eventually gain control of my body by lying to it. I start with hey, let us get the chair. Then let us stand up and make breakfast. We have had breakfast, so let us move toward the shower. About this time, my body knows once again I have lied to it, and just using force, I go on my path. Push to the shower, yes you can put on your clothes, sure you can get in the car. Grr.
When I got to church, most people around me thought I looked good. A well-meaning lady who never sees anything wrong with anyone stopped to tell me how good I looked today. I thought, you should have seen me two hours ago. What would she have said then? Would you still say, hey, you look good today? I hope not. Goodness, those words upset me. But if I hate those words, whose fault is it anyway? My body told me to stay in bed. It was my brain that made me get up and move. My body was all for another two hours in bed.
I have some reasons for not moving as much on that Sunday. It was raining, it was in the middle of my infusion schedule, and I gained weight last week; so here we are. I had a broken right foot, and it was hurting, so yes, no motion the day before, but I still wanted to go to church. So, I ignored my body and got moving. All that protesting was just morning noise. I knew my body was complaining that movement seemed counterproductive. But truthfully, when isn’t it complaining lately?
I know what to do, my brain says move, but my joints want to stay put. My brain knows that if I do not move, my joints will hurt more tomorrow, and then each day I refuse to move will be even worse.
What is willpower? I guess I cannot define it for my mind and body. But I think it means to push. My rheumatologist andsSurgeon (especially the one looking after this broken foot) would like me to have a little less push when I hurt. I have found that coffee - my caffeinated drug - helps a little, but mostly it is all about willpower.
It is challenging to help my doctors understand that willpower is like momentum. It takes so long to build up to it that I cannot turn it off when I am going. So, I struggle on. I shuffle into places like church or the grocery, and people say hey, you look great. I say thank you and remind myself that good is a relative term. Good compared to what? Last time you saw me? Ten years ago, when I was using a walker? Or when I was sixteen and could walk 20 miles a day and get up and do it again the next day after sleeping on the ground? Better than what? Because my frame of reference is this morning when I got out of bed, and I compare it to when I was sixteen. For me, it seems not so good. But before I dwell on that, I must keep moving because one of these days, my body will win this war, and the outcome will be devastating. Or my mind will win, and the tug of spondyloarthritis war will continue.
Do you fight this war? If so, do you have any secret weapons I could adopt?
Have you ever had to take a leave of absence from work due to your symptoms?
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