When you have a malady like this you learn how to hold "it" together for long stretches of time, putting one sore leg in front of the other, putting the pain in a side car as you ride in the slow lane. You don't want to think about it, even though it interjects its unpleasant self into thoughts with almost any movement, and even being still. You function. Day by day. The fear that hangs over your shoulder saying "What if it takes over and I can't ignore it anymore?" is very real. "What if I can't do this anymore?" THIS could mean working, walking, climbing stairs, caring for animals, food shopping. It pushes you on to ignore it, deal with it, cope. Not let yourself feel like disaster is looming and you just.cant.take.one.more.painful.step. Denial is a beautiful survival tool.
These are times that you feel relatively okay. The pain is there but not demanding immediate attention. You can walk across the classroom without feeling like you need to stop or sit. You are able to keep the pain denied to a proper functional level. You can get things done and while it might mean you have to rest a bit, you can bounce back. It is the normal that you've lived with for a long time now. You are "functioning."
You take the daily DMARD meds, the OTC anti-inflammatories, the prescription pain meds (which are counted down to the day so you better not experience more pain than usual, or you'll have none at all), the intravenous biologic meds, the natural supplements and recommended vitamins, plus all the other meds for other ailments, and hope for the best. You avoid processed foods and if you are lucky you've identified any "trigger foods" that cause flare ups (I haven't found much yet in that department.) You keep moving because "rest is rust" and it feels better to do that than sit. You cover the necessary bases of working, preparing for work, caring for pets and chores, and IF that leaves any energy for anything else such as time with friends or family, or art, you carefully evaluate whether it is more important to rest or do that "fun" thing. Rest usually wins.
If you are like me, you generate multiple "To-Do" lists as you try to create the illusion that you are in control of your life. The lists have hundreds of things on them that need doing, and you know even as you write them down, chances are slim that you'll do more than put out fires by completing the most necessary items that need doing immediately. It's just the way it is.
Then there comes new territory that I am now inhabiting. Where the veil of denial becomes thin The past few weeks my legs and feet have been out of control in terms of pain. Both feet have been swollen to the point where fitting them into shoes has been a challenge. My ankles are now cankles, and the pain is pretty constant. Here's the rub, though. I have pain down both legs pretty consistently, which was caused by my lower back the last time it was a problem. I need to get this checked, I think. But by who?
Each doctor tends to their own disorder, and I don't know which doc to see. The RA doc just sighs and says "I hope the next infusion works for you, as we've tried all the drugs that there are now." The foot doc says "The pain is from RA and there isn't much to do until the disease is controlled." The pain doc says "What does the RA doc say?" Do I go back to the back doc, or is it RA? Primary care doc is not helpful. I have to self assess the cause of the problem, make appointments, and wait for a long time until appointments are available, most likely with the wrong doctor. Maddening.
In the mean time, the name of the game is "deny, deny, deny" and stay functional. Unless, of course, you wake up like I did today, so full of pain and gimpiness I had to grab my cane just to make it across the kitchen to get the coffee started. I literally had pain so bad I had tears in my eyes and thought "I just can't do this." But what is the option?
More rest doesn't always help. It can make things worse, as not moving brings on more stiffness and the inflammation takes over. Got to put one swollen and painful leg in front of another and go. So what does one do? The Hat of Bodily Denial slipped off my head this morning and it wasn't pretty.
The need for my morning beverage was real, and I did it. Ah, espresso, my love. My elbows are flaring, too, so even using a cane presents a challenge. I took my morning pain medication, made my coffee, and sat down to wait for a little relief...even though it hasn't touched the pain levels I've had lately. I look around my messy house, my messy life, and can only hope things get better as the day goes on, and that my ability to deny my reality improves. These moments of stark awareness of it all are made more manageable by the repeated demands for breakfast from my feathered friends, and the patience exhibited by my old pups as they sleep on their beds until I am able to get them breakfast. It's gonna be a while, kids.
It is a beautiful day today, really nice weather with sunshine and warm temps. I need to clean my house, top to bottom, and am counting on my usual state of denial to return so I can do what has to be done. Forgive this self-indulgent blog entry. It is hard to think about art when the Hat of Bodily Denial slips off my head and is misplaced.
Somewhere in this list of things to do is art. Stitching does make me feel better as I get lost in it. It is therapeutic for me. I have a hard time justifying time spent doing this, though, when there is so much else around me that needs doing. It sits like a reward, waiting, if only all the other things can get done first.
One more espresso and will hit the to-do list with my denial intact. What other option is there? Cheers.