When everything looks normal but it’s all wrong
Countless times I’ve said that I would gladly be wrong about RA. I’d gladly be delusional instead of this sick. I often say “If only I actually were crazy. Then, I could take medication and at least believe I felt better.” Of course it’s a facetious remark, but it’s also a reference to this notion I have about what’s real and what’s not with RA. We live with this real RA that brings pain, fatigue and fever, damage and disability; but on the outside, things can look fine.
All around me, life goes on as normal. In the midst of seeming normalcy, I can’t walk properly or open a car door or whatever. It’s frustrating. Or I look down at the toes that I feel pulling and there’s no rubber bands on them. Or at the ankle that’s being stabbed. And there’s no blood. Nothing to see. When my shoulder won’t move an inch from my side for two weeks, an ER doc says it’s perfectly fine because he can’t see anything.
This is how it it’s been for five years all day, every day. Every joint. But, it’s all only my reality. No one lives it but me. Do you know what I mean?
One of the first difficult things when all this (unrelenting RA) started was the way people look at you when you claim you can’t do something. I couldn’t hold an iron or a soap bottle any more – and at times even a cup of coffee. Even if I asked them not to, people handed me heavy things and looked incredulous if I said I can’t hold that. It’s just hard for the mind to overcome what the eyes see.
In the privacy of my house, when I’m frustrated, I call the normal façade of RA “The Lie.” I say, “If only The Lie were true. If only I could find the door into that reality.” It seems like the whole world has the benefit of The Lie, except those who are stuck in RA-reality land.
Even I have been fooled by The Lie as I tried to find the door back into the normal world. With enough medication and rest, I get fooled into thinking that my shoulder or knees are doing better. RA is not that bad.
Go ahead and laugh at me if it makes you smile. Just the other day I was lying on the sofa thinking, “Oh, my knees are fine now” until I tried to walk to the bathroom.
RA pain won’t yield to the “The Lie”
I’m very tired of pain. I imagine that those around me are just as tired of hearing of it. I can’t say it out loud or write it out loud every time I’m typing. There are so many topics I want to write posts about that I have long lists of them! But am I the only one who feels frustrated by others assuming that the RA is only bad when I say so?
I know that we are not all in the same place. Many readers don’t even have RA themselves. I try to tell enough of what I deal with to help paint a true picture, but not more than people can handle. Hopefully, it’s sufficient that the world will at least begin to doubt the “The Lie.”
Postblog: Back in May, I was offline for a week because my computer caught a virus. This time it was my turn. Our house was full of fevers, sick stomachs, and the headache from hell. I passed some miserable days when I couldn’t get down any food or meds to mask the RA. I absolutely hate it when so many joints are screaming that you can’t do anything, even read. I doubt I’ll ever catch up on emails and or anything else, but I’ll do my best.
- To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?
- If I Were Not Living with Rheumatoid Arthritis: 10 Things I’d Do
- 20 Essential Facts About My Own Rheumatoid Arthritis No Doctor Ever Asked Me