I’ve been working on pulling together my first couple of Videos for WEGO Health TV on RA and I posed the question to a group of online friends (partly to get the answers… partly to generate a lively discussion about what RA pain is like).
I was partly surprised at the answers… and partly not so much. The physical description was what I thought I was after initially, and I got that too. Now, I’m not so sure that is actually the best way to attack it. I think it matters even more to remember that all of the pain in RA isn’t necessarily the pain in our joints or the utter exhaustion that we feel. The pain itself is only the beginning… and in a lot of cases not the worst. The worst of the pain in what happens in your head and in your heart.
Think about the things that you treasure most in your life. Not the money stuff, the stuff that really matters. Now, think about what if it hurt to do them.
What if it hurt to hold your 5 year old child’s hand on the first day of school?
What if you couldn’t get out of bed to watch your baby graduate from high school because you were in so much pain.
Holding your first grandchild
Baby sitting your neices and nephews (maybe you can’t lift their tiny body because of the pain and fatigue and weakness… maybe you are scared to death that your joints will give way and you might drop them)
You wake up one morning and your kids are depending on you to get them to school or to camp or to a sporting event (maybe counting on you being there to watch them for the day) and you can’t get out of the bed because your body refuses to listen to what you are telling it to do (muscle memory works in reverse, too, sometimes your body just get pissed off at you and won’t do what it knows will hurt) and your kids are late for the imporant events, events you never do get to attend.
You love to take pictues of all of the events in your family’s lives, and you can’t hold the camera long enough to take the pictures any more, or steady enough to.
You write… communicate with friends or family, or write for disbursing information and pleasure (poetry, stories, journals) and you can’t type for long periods of time (if at all) any more and holding a pen is difficult on a good day.
Pealing an apple with a paring knife
Crocheting (my mom remembers a great aunt crocheting with thread when she had RA, her hands were so knotted and her fingers so twisted that she had to use a pillow to help hold her thread and her projects and she fought the pain to be able to make the stitches)
Picking flowers… gardening… cutting the grass…
You are too exhausted to go to family functions (holidays, birtdays, celbrations)
You can’t walk to the mail box most days because your toes and ankles and knees and hips hurt too bad. You fight your body after half a day at an ammusement park because your feel hurt so bad and are swelled to such an extent that they won’t carry you from one bench to the next or from the parking lot to the hotel room.
You see the hurt look in someones eyes because you instinctively (not deliberately) flinch when they try to hug you or shake your hand or touch you.
You cringe and fight back tears when you see that the guy is cleaning the revolving door and you know you are going to have to try to pull open the regular door with your hands.
You avoid going to the zoo, or on a field trip, or a concert because you can’t get a “good” seat or you don’t know what steps you might have to walk up, or if there will be a place to sit down to rest (or time to sit down to rest) or what the bathrooms will be like (autoimmune disease means that you have to think about what you are touching and who might have touched it before you, who wasn’t quite as clean as they should have been maybe fixing your food or opening the bathroom door)
You try to figure out how to make the keys to the car/door/mailbox big enough (or turn easy enough) that your fingers will be able to unlock or lock or start or shut off whatever it is that needs the key to work.
you can’t color because the crayons are so small
You know that someone avoids anything physical with you because they are afraid that they will hurt you. You maybe appreciate that they are being careful, but there are times when you would much rather deal with just a little extra ouchie rather than dealing with feeling like you are a bother or that you are too RA to be touched and hugged and played with.
Not every day is this bad. Not everyone has these situations or has them to the same degree (my RA isn’t your RA as the commercial says) but it is what it is, and it always will be. But everyone with RA has had the pain that hurts the body, but hurts the heart and the spirit even more more times than anyone would like to remember. And that is a pain that Prednisone or NSAIDS or even Darvocet can’t chase away. It is a pain that pokes at you every time you remember what you miss.
I try hard to stay positive most of the time in my life. I figure that how I look at something is as important as the something I’m looking at. But sometimes reality is what it is and some things just need to be said.