I keep forgetting I am ill. I forget it for days at a time. I run around at a speed reminiscent of my 30’s. I feel twenty years younger, which is a nice change of pace. I used to feel ancient, ready for death. Not anymore.
My illness brings me up short. Literally. It stops me cold and won’t let me forget for long. It is selfish and narcissistic. It likes to be front and center; it doesn’t appreciate being shoved aside. It derives its satisfaction from reminding me of my limitations.
I give in to it. I have no choice. It is not from defeat, but rather from strategy. I know how to beat it. It does not know how to beat me, for after a few days of rest, I arise from my bed ready to face life head on once more.
Rheumatoid Arthritis is a fickle disease. You never know from day to day how you will feel, how it will affect you. You don’t look sick. There are no outward signs of your illness, unless your joints are permanently twisted by it. The most obvious being your hands. It likes to attack your hands.
Time was when my hands were so stiff and swollen; I could not bend my fingers to grip the steering wheel of my car. Driving my daughter to school was agony. I would shake my hands at each stop light, as if that would shake off the pain. Or at the very least loosen them up, but it didn’t work. I drove with my palms.
I worry about my hands; I’ve always liked my hands. As I said to my first rheumatologist, when he told me I had a “good case of arthritis” in my hands, “I need my hands.” His curt reply was, “Everybody does.”
I know everybody does; I was merely reaching out for help. It wasn’t forthcoming. He almost let me die. He left me untreated long enough for fluid to collect around my heart and lungs, compressing them. I should bill him for my hospital stay.
That’s another thing about RA. It assaults your whole body. The “arthritis” in its name is misleading. It doesn’t differentiate between joints and organs. Any site will do for its malevolence.
You are supposed to be wary, not invite it in. You walk a high wire, making sure you don’t overdo in order to maintain your balance, your equilibrium. And when there is no choice, when you know you will be stressed, you need to block some time off to rest and recoup. And that is not just hearsay!
I am reminded of that time and again. The resulting lethargy is a weight that inundates you, making it hard to think, hard to move, hard to breathe. You are surrounded by a fog of pain. Putting a simple meal together tests your limits. The FATIGUE is so pervasive and overwhelming you think of it in capital letters.
Tai Chi helps me combat my illness. My present rheumatologist wants me to practice it every day. In an ironic twist, it is Tai Chi that made my illness lunge forward and knock me down this time. For I became so involved with our Branch and the preparations for our 20th anniversary celebration this past Saturday, that I wore myself down to a confrontation with RA.
And RA always wins.
For the moment.
RA can stop me forever, but while I still live it can’t stop me completely. It can’t stop me from writing or composing my article for our Tai Chi newsletter. Tapping on the keyboard is a great exercise for my hands. It keeps my fingers strong and supple. I have my grip back and I mean to keep it. I need it to seize RA by the neck. And never let go.
I am just beginning Tai Chi and was so excited to read your post. Any advice?
Hello, Nan. It’s great to hear you are starting Tai Chi. The main thing is to practice it regularly. I practice Taoist Tai Chi and it’s a series of gentle movements, like a ballet almost. Meditation in motion. There’s a lot to learn, coordination of hands, feet and body, but it’s well worth it, mentally and physically. Don’t feel bad if you can’t seem to “get it” at first. It will come to you.
my first visit to your blog and I’ve read all of them. You express what I too feel so beautifully. RA doesnt have us, I agree. It can attack the body but never have my spirit – I draw the line right there! Keep moving …